[Senate Hearing 116-463]
[From the U.S. Government Publishing Office]
S. Hrg. 116-463
ALZHEIMER'S AWARENESS: BARRIERS
TO DIAGNOSIS, TREATMENT,
AND CARE COORDINATION
=======================================================================
HEARING
before the
SUBCOMMITTEE ON HEALTH CARE
of the
COMMITTEE ON FINANCE
UNITED STATES SENATE
ONE HUNDRED SIXTEENTH CONGRESS
FIRST SESSION
__________
NOVEMBER 20, 2019
__________
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Printed for the use of the Committee on Finance
______
U.S. GOVERNMENT PUBLISHING OFFICE
44-963-PDF WASHINGTON : 2021
COMMITTEE ON FINANCE
CHUCK GRASSLEY, Iowa, Chairman
MIKE CRAPO, Idaho RON WYDEN, Oregon
PAT ROBERTS, Kansas DEBBIE STABENOW, Michigan
MICHAEL B. ENZI, Wyoming MARIA CANTWELL, Washington
JOHN CORNYN, Texas ROBERT MENENDEZ, New Jersey
JOHN THUNE, South Dakota THOMAS R. CARPER, Delaware
RICHARD BURR, North Carolina BENJAMIN L. CARDIN, Maryland
JOHNNY ISAKSON, Georgia SHERROD BROWN, Ohio
ROB PORTMAN, Ohio MICHAEL F. BENNET, Colorado
PATRICK J. TOOMEY, Pennsylvania ROBERT P. CASEY, Jr., Pennsylvania
TIM SCOTT, South Carolina MARK R. WARNER, Virginia
BILL CASSIDY, Louisiana SHELDON WHITEHOUSE, Rhode Island
JAMES LANKFORD, Oklahoma MAGGIE HASSAN, New Hampshire
STEVE DAINES, Montana CATHERINE CORTEZ MASTO, Nevada
TODD YOUNG, Indiana
Kolan Davis, Staff Director and Chief Counsel
Joshua Sheinkman, Democratic Staff Director
______
Subcommittee on Health Care
PATRICK J. TOOMEY, Pennsylvania, Chairman
CHUCK GRASSLEY, Iowa DEBBIE STABENOW, Michigan
PAT ROBERTS, Kansas MARIA CANTWELL, Washington
MICHAEL B. ENZI, Wyoming ROBERT MENENDEZ, New Jersey
JOHN THUNE, South Dakota THOMAS R. CARPER, Delaware
RICHARD BURR, North Carolina BENJAMIN L. CARDIN, Maryland
JOHNNY ISAKSON, Georgia SHERROD BROWN, Ohio
TIM SCOTT, South Carolina ROBERT P. CASEY, Jr., Pennsylvania
BILL CASSIDY, Louisiana MARK R. WARNER, Virginia
JAMES LANKFORD, Oklahoma SHELDON WHITEHOUSE, Rhode Island
STEVE DAINES, Montana MAGGIE HASSAN, New Hampshire
TODD YOUNG, Indiana CATHERINE CORTEZ MASTO, Nevada
(ii)
C O N T E N T S
----------
OPENING STATEMENTS
Page
Toomey, Hon. Patrick J., a U.S. Senator from Pennsylvania,
chairman, Subcommittee on Health Care, Committee on Finance.... 1
Stabenow, Hon. Debbie, a U.S. Senator from Michigan.............. 3
WITNESSES
Karlawish, Jason, M.D., professor of medicine, medical ethics and
health policy, and neurology; and co-director, Penn Memory
Center, University of Pennsylvania, Philadelphia, PA........... 5
Tomcavage, Janet, R.N., MSN, chief nursing executive, Geisinger,
Winfield, PA................................................... 7
Cohen, Marc A., Ph.D., clinical professor of gerontology,
McCormack Graduate School, and co-director, LeadingAge LTSS
Center, University of Massachusetts Boston; and research
director, Center for Consumer Engagement in Health Innovation,
Community Catalyst, Newton, MA................................. 8
Kovach, Lauren, Alzheimer's advocate, Brighton, MI............... 10
ALPHABETICAL LISTING AND APPENDIX MATERIAL
Cohen, Marc A., Ph.D.:
Testimony.................................................... 8
Prepared statement........................................... 37
Responses to questions from subcommittee members............. 44
Karlawish, Jason, M.D.:
Testimony.................................................... 5
Prepared statement........................................... 52
Responses to questions from subcommittee members............. 57
Kovach, Lauren:
Testimony.................................................... 10
Prepared statement........................................... 65
Responses to questions from subcommittee members............. 68
Stabenow, Hon. Debbie:
Opening statement............................................ 3
Prepared statement........................................... 69
Tomcavage, Janet, R.N., MSN:
Testimony.................................................... 7
Prepared statement........................................... 70
Responses to questions from subcommittee members............. 73
Toomey, Hon. Patrick J.:
Opening statement............................................ 1
Prepared statement with attachment........................... 76
Communications
Alzheimer's Foundation of America................................ 81
American Council of Life Insurers and National Association of
Insurance and Financial Advisors............................... 84
America's Health Insurance Plans................................. 93
Center for Fiscal Equity......................................... 96
Cox, Michelle.................................................... 98
Genworth Financial............................................... 101
LeadingAge....................................................... 107
UsAgainstAlzheimer's............................................. 109
ALZHEIMER'S AWARENESS: BARRIERS
TO DIAGNOSIS, TREATMENT,
AND CARE COORDINATION
----------
WEDNESDAY, NOVEMBER 20, 2019
U.S. Senate,
Subcommittee on Health Care,
Committee on Finance,
Washington, DC.
The hearing was convened, pursuant to notice, at 2 p.m., in
room SD-215, Dirksen Senate Office Building, Hon. Patrick J.
Toomey (chairman of the subcommittee) presiding.
Present: Senators Roberts, Thune, Cassidy, Lankford,
Daines, Young, Portman, Stabenow, Cantwell, Menendez, Carper,
Cardin, Brown, Casey, Whitehouse, Hassan, and Cortez Masto.
Also present: Republican staff: Alyssa Palisi, Staff
Director for Senator Toomey. Democratic staff: Alex Graf, Staff
Director for Senator Stabenow.
OPENING STATEMENT OF HON. PATRICK J. TOOMEY, A U.S. SENATOR
FROM PENNSYLVANIA, CHAIRMAN, SUBCOMMITTEE ON HEALTH CARE,
COMMITTEE ON FINANCE
Senator Toomey. The subcommittee will come to order.
Welcome to the Senate Finance Subcommittee on Health Care
hearing ``Alzheimer's Awareness: Barriers to Diagnosis,
Treatment, and Care Coordination.'' It is my pleasure to
welcome four witnesses today for an important conversation on
challenges with treating and caring for Alzheimer's patients
and the emotional toll this disease takes on caregivers.
Alzheimer's disease is really in a category of its own. One
in ten seniors has Alzheimer's disease. According to the
Alzheimer's Association, in 2019 alone this disease and other
related memory disorders are estimated to cost $290 billion in
health care, long-term care, and hospice services. The majority
of these costs, about two-thirds, are borne by the Medicare and
Medicaid programs and, worst of all by far, there is no cure.
With November being National Alzheimer's Disease Awareness
Month, I want to briefly share a story about an individual with
Alzheimer's who candidly shared his experience with thousands
of Pennsylvanians. Bill Lyon, a beloved sports writer at The
Philadelphia Inquirer, passed away on Sunday at the age of 81
after a hard-fought battle with Alzheimer's disease.
Bill wrote many columns detailing his 6-year battle with
the disease. In one column he described it as ``an insidious,
relentless, and a gutless coward who will not come out and
fight. Instead, he lies in ambush in my brain, and the only way
I can put a face on him is to look in the mirror.''
I would like to ask unanimous consent to enter a couple of
articles detailing his battle into the record, without
objection.
[The articles appear in the appendix beginning on page 77.]
Senator Toomey. Like Bill and his family, there are
millions of Alzheimer's patients and their loved ones who know
this disease all too well. I know firsthand just how
devastating it is to families. My own father and grandmother
passed away after years of struggling with Alzheimer's. Finding
a cure for this disease must remain a top priority. And I am
optimistic that a cure will be discovered in my lifetime.
That said, progress has been very slow. Despite billions of
dollars in public and private investment, Alzheimer's patients
have very limited options. Just a handful of medicines are
available, and they only slightly reduce the symptoms of the
disease. For this reason alone, Congress must not undermine
future investment by the private or public sector in their
efforts to find cures by upending drug research and
development. And, while finding a cure is one challenge, access
to necessary long-term care services is another.
Medicare offers very limited coverage for long-term care
needs. If you are very wealthy, these services are easily
affordable. And for very low-income individuals, these services
are available through Medicaid at little or no cost. But the
average American approaching retirement is not at all likely to
have nearly enough cash savings to cover the average cost of a
typical long-term care event, such as the need for nursing
home, or in-home care due to the onset of a chronic illness.
A large number of middle-class families face financial ruin
at the hands of Alzheimer's. To guard against extraordinarily
high costs, long-term care insurance can be a viable option.
Yet only 17 percent of adults actually own such a policy. Many
families without long-term care insurance find premiums to be
unaffordable, but insurers have had to charge higher prices due
in large part to longer than expected life expectancy of
beneficiaries with Alzheimer's disease.
One way to address high premiums is to expand the risk pool
by attracting healthier or younger enrollees. Congress ought to
consider legislation that makes it easier for families who are
planning ahead to buy long-term care policies.
Toward that end, today I released the discussion draft of
legislation that would empower individuals to use their
retirement plans to buy long-term care policies on a tax-free
basis. Today, some individuals can use their 401(k)s to buy
life insurance. Similar treatment ought to be given to long-
term care insurance.
I hope to gather additional feedback on this idea and to
introduce formal legislation soon. I look forward to hearing
from our witnesses and hope to work on a bipartisan basis to
reduce the barriers that we discussed today.
I now yield to the ranking member, Senator Stabenow, for
the purposes of her opening statement.
[The prepared statement of Senator Toomey appears in the
appendix.]
OPENING STATEMENT OF HON. DEBBIE STABENOW,
A U.S. SENATOR FROM MICHIGAN
Senator Stabenow. Well, thank you very much, Mr. Chairman.
It has been a pleasure to work with you on this hearing. I know
we share a passion for this issue, as all of us who are here
today do. Welcome to all our witnesses, particularly my friend
from Michigan. We are looking forward to hearing from you as
well.
Everyone in this room really knows the numbers, and the
chairman has spoken about the numbers. We have 5.8 million
Americans living with Alzheimer's today, including one out of
10 people over the age of 65, and that includes 190,000 people
in my home State of Michigan. But this is not about the
numbers. This is about people's lives. It is about individuals.
It is about families. This really is a family disease. And we
are here today to talk about the families who watch this
horrific disease steal their loved ones away, one memory at a
time.
We need better treatment. Families need more support. Most
of all, we need a cure. The good news is, we are making some
progress. But as the chairman indicated, it is not as fast as
we all want it to be. For decades, research on the brain, which
is the most complex organ in the body, was funded as if it was
one of the least important. That has changed. Since 2011,
Federal funding for Alzheimer's has more than quadrupled. New
researchers are entering the field and moving the science of
Alzheimer's forward.
We need to keep that up. We need to make it faster, because
telling a smart scientist with a great idea that there simply
is not enough money to fund their research could mean a cure
passes us by.
I have also been focused with my colleagues on efforts to
provide more support for patients and their families. After a
successful bipartisan push, the Centers for Medicare and
Medicaid Services implemented our HOPE for Alzheimer's Act.
This means that Medicare is now reimbursing for a doctor's
visit to create an individual care plan for a patient and their
family for newly diagnosed Alzheimer's patients. The benefit
ensures doctors give a clear diagnosis to patients, including
information about what treatment options there are, what
medical and community services also are available. This is good
for patients. It is good for families. It is good for the
Medicare program.
Unfortunately, the Centers for Medicare and Medicaid
Services have not been doing aggressive outreach and education
to health-care providers and patients, as called for in our
legislation. And so, in fact, we talked yesterday with
leadership from CMS about moving much more aggressively for
doctors to know about this benefit--for patients and families
to know.
But we have also introduced the Improving HOPE for
Alzheimer's Act, which I have been joined in by 46 bipartisan
Senators, including, on this committee, Senators Menendez,
Scott, Carper, Cassidy, Cardin, Daines, Brown, Lankford,
Whitehouse, and Cortez Masto. And so this is a strong
bipartisan effort. We will move forward to pass the bill, but
this can be done administratively, and we hope that it will.
Our bill requires HHS to conduct a nationwide campaign to
increase awareness and usage of the care planning visit.
Building on the care planning benefit, I have also introduced
legislation with Senators Capito, Menendez, and 15 others
called the CHANGE Act, which will encourage timely and accurate
detection and diagnosis using evidence-based tools. Only 16
percent of seniors receive regular cognitive assessments during
health-care checkups. Our bill will fix that. We made a lot of
progress, but we have so much more to do. And that is why we
are here today.
And again, I am looking forward to our discussion and how
we can work together to move forward to support families,
support patients, and find a cure.
Thank you, Mr. Chairman.
[The prepared statement of Senator Stabenow appears in the
appendix.]
Senator Toomey. Thank you, Senator Stabenow. Without
objection, any other member's opening statements will be made
part of the record. And now we will hear from our witnesses.
First we will hear from Dr. Jason Karlawish, a professor of
medicine, medical ethics and health policy, and neurology at
the University of Pennsylvania, as well as the co-director of
the Penn Memory Center. I am proud to say the Commonwealth is
home to one of the top academic research centers in the
country, in fact in the world, and Dr. Karlawish will discuss
barriers to diagnosis and treatment of Alzheimer's disease.
Next we will hear from Ms. Janet Tomcavage, chief nursing
executive at Geisinger. I am glad to have you with us today. It
is great to have one of the Nation's largest integrated health
service organizations here to offer insights into how we can
improve care coordination activities in the Medicare and
Medicaid programs.
We will then hear from Mr. Marc Cohen, a professor of
gerontology and co-director of the LeadingAge LTSS Center at
the University of Massachusetts Boston. He also serves as
research director at the Community Catalyst Center for Consumer
Engagement in Health Innovation. Dr. Cohen will discuss
improvements that can be made to increase the availability of
affordable long-term care insurance.
And last but not least, I will yield to the ranking member
for the introduction of her constituent.
Senator Stabenow. Thank you very much, Mr. Chairman. It is
really my honor to introduce my friend Lauren Kovach, who is a
board member of the Alzheimer's Association, Michigan-Great
Lakes Chapter. She has been a fierce advocate for Alzheimer's
since her beloved grandmother Helen was diagnosed with the
disease.
Lauren, along with her mom Pat, cared for Helen, whom
Lauren called ``Chupe,'' for more than 15 years. Each year,
Lauren is a top fund-raiser for her local chapter's Walk to End
Alzheimer's, which raises awareness and funds for Alzheimer's
care, support, and research. Her story was also featured in the
spring 2019 edition of ALZ magazine. Frankly, Alzheimer's is a
top priority in my office in part because Lauren makes sure
that it is. And so I am so glad that you are here. Thank you
for traveling from Michigan to join us.
Senator Toomey. Thank you, Senator Stabenow.
As a reminder, each witness will have 5 minutes to present
their oral testimony. We will begin now with our first witness,
Dr. Jason Karlawish.
STATEMENT OF JASON KARLAWISH, M.D., PROFESSOR OF MEDICINE,
MEDICAL ETHICS AND HEALTH POLICY, AND NEUROLOGY; AND CO-
DIRECTOR, PENN MEMORY CENTER, UNIVERSITY OF PENNSYLVANIA,
PHILADELPHIA, PA
Dr. Karlawish. Thank you, Senator Toomey and Senator
Stabenow, for your invitation. I greatly appreciate it.
So on Tuesday, July 15, 1980, the people of the United
States met Alzheimer's for the first time. The occasion was a
joint House and Senate hearing on ``The Impact of Alzheimer's
Disease on the Nation's Elderly.''
There was, by the way, one and only one Congressperson
present at that hearing, Senator Eagleton. The first witness,
the first American to speak to her fellow Americans about
living with Alzheimer's disease, was Mrs. Bobbie Glaze, one of
the founding members of the Alzheimer's Association. She told
the story of her husband's dementia. The neurologist delivered
his diagnosis in the waiting room. Ignorance and indifference
were the norm. She said, ``I was given no explanation of what
Alzheimer's disease is, what to expect, how I might learn to
cope, nor was I directed to someone who might be able to direct
me in the monumental problems that lay ahead.''
So I am a physician. I trained in geriatric medicine. I am
a researcher at the University of Pennsylvania. I co-direct the
Memory Center dedicated to the diagnosis, care, and research
for persons living with Alzheimer's and their family members.
Had the Glazes been cared for at a memory center such as where
I practice, they would not have suffered as they did.
Unfortunately, there are still too many persons with
Alzheimer's disease and their families who are telling the same
story as Bobbie Glaze told some 40 years ago.
The typical new patient visit at the Penn Memory Center
begins with a family recounting a despairing narrative of
frustrated months, even years, searching for answers and
struggling to get care. To make a diagnosis and to care for a
person living with Alzheimer's disease, I need about 60 minutes
to discover that the person has cognitive impairment, that this
impairment causes her to be less efficient in performing her
day-to-day tasks, or that she needs someone else to actually
assist her with those tasks.
By ``day-to-day tasks,'' I mean activities of daily living
like managing a checkbook and using the computer. ``Less
efficient'' means the person struggles but can still carry on.
That is what we call ``mild cognitive impairment.'' If you need
someone else to help, what I am describing is ``dementia.'' In
a word, the person is disabled.
I interview not one but two people. I interview the
patient, like any adult doctor with adult patients, but I also
interview someone else who knows the person well, like a
partner or an adult child. And that person typically goes on to
become their caregiver. I see them later for a diagnostic
follow-up visit to explain the diagnosis. They then meet with a
social worker to address the patient's functional needs and
caregiver strain. We may, for example, recommend a driver's
evaluation, or a review-only access to the patient's bank
account.
The plan is ongoing. We train the caregiver how to talk to
the patient about attending an adult day program and how to
help the caregiver locate one--and how to figure out how to pay
for it.
There are tremendous benefits to this standard of care. It
has been shown to lead to shorter time to the diagnosis, and it
lowers Medicare costs in the year after receiving that
diagnosis. We are able to do this at the Penn Memory Center
because we benefit from cross-subsidies from research and
philanthropy. This is standard of care, but it unfortunately is
not the routine. There is a scarcity of physicians skilled in
diagnosing and discussing a treatment plan with a person living
with Alzheimer's disease and their caregiver.
There is a shortage of geriatricians, geriatric
psychiatrists, and neurologists, as detailed in my written
testimony. Physicians who do have the skills lack the resources
to practice them. The most important intervention you can
provide to your constituents in your States is to give American
medicine a business model to diagnose and care for patients
with Alzheimer's disease.
The code that has been mentioned earlier by Senator
Stabenow, the Cognitive Assessment and Care Plan, is a
tremendous step forward to achieve this. It recognizes the
complexity of a workup and the need to include a caregiver in
the workup, and to create a care plan. This is exactly what
Bobbie Glaze was searching for 40 years ago. Unfortunately, as
you know, only about 1 percent of those eligible to get that
code receive it. So here is your charge. Here is America's
charge.
We have to study who is using this code, who is not, why
are they using it, why are they not, and how is it working? And
we should do that study with the same urgency as we study the
Alzheimer's biomarkers to discover a cure and better
treatments.
Some preliminary results from my own work to figure out
why: I have found out that some Medicare Advantage plans are
not paying for it. Primary care practitioners are confused
about how to implement it across visits. We at the Memory
Center do not use the code, actually, because social workers do
the bulk of our work around care planning, and they are not
allowed to be covered under the code. The code needs to
reimburse not just for that one-time care planning, but it
needs to reimburse for the ongoing management and care of the
patients, because this is a chronic disease.
And finally, I would ask CMS to look very closely at how
this code is integrated into or can be better integrated into
its extremely ambitious and very important Comprehensive
Primary Care Plus initiative, otherwise known as CPC-plus.
Thank you. I greatly appreciate your interest and look
forward to the Q&A, and my colleagues' presentations as well.
[The prepared statement of Dr. Karlawish appears in the
appendix.]
Senator Toomey. Thank you, Dr. Karlawish. Ms. Tomcavage,
you are recognized for 5 minutes.
STATEMENT OF JANET TOMCAVAGE, R.N., MSN,
CHIEF NURSING EXECUTIVE, GEISINGER, WINFIELD, PA
Ms. Tomcavage. Thank you, Mr. Chairman and members of this
subcommittee. I would like to outline a few challenges and
opportunities that we believe are needed to improve the care of
individuals with Alzheimer's, and take a few minutes to
describe some of the innovative programs that we are doing at
Geisinger, and identify barriers that we think should be
removed.
One of the biggest barriers that we see is really a lack of
understanding and education on what I would call how to take
action by both individuals who are affected and their families,
as well as the physicians who are caring for the elderly.
Often people will say, ``Oh, I am just getting older,''
thereby minimizing the subtle signs of memory loss or
confusion, and really not drawing it to physicians' attention.
There is also a fair amount of complacency in the medical
community around treating common conditions such as
hypertension, which contributes significantly to the
physiologic changes that are occurring in the aging brain.
We need a community awareness campaign, much like we have
done for heart disease, breast cancer, or the opioid crisis. We
have not addressed Alzheimer's in that way. In most cases,
memory and thinking challenges are identified too late, as we
have heard. Better education, more time with seniors, and
reliable assessment tools are needed in the primary care
setting.
We need to include memory and cognition as part of
Medicare's annual wellness visit and complete formal memory
assessments on seniors as a standard of care. In addition, we
need to push out care to patients in their homes, telehealth
services that will allow us to remotely leverage clinical
experts such as neurologists who are in short demand,
particularly in rural areas, to appropriately assess, treat,
and monitor patients whom we know are starting to demonstrate
mental decline. In addition, we need home services to evaluate
the safety and social supports of the home, which are critical
components of a comprehensive plan of care.
The health-care system has really a relatively weak
infrastructure to support patients and their caregivers.
Services such as adult day care, respite, and home assistance,
and better advanced care planning lack adequate funding. These
services can keep people safe and in their own homes. Payment
for unlicensed caregiver support will be critical in the long-
term success for keeping individuals with Alzheimer's in their
homes and in their communities and out of custodial care. Even
hospice has a gap. When we go in hospice, we give up many
services that are needed to keep patients and individuals safe
in their home.
I would like to turn to a little bit about what we at
Geisinger are trying to do to identify and deliver an
integrated approach to senior care. Geisinger opened its first
Memory and Cognition Center last year, led by a behavioral
neurologist and a multi-
disciplinary team. We have a physical location open full-time
and consultation outreach, but we are limited. The waiting time
to get patients into that center is significant.
We also implemented Geisinger at Home last year, where we
send a team of health-care clinicians directly into high-risk
patients' homes. We provide an array of services, including
clinical and social assessments to optimize the treatment plan,
and we can provide acute treatment center services directly in
the home that avoid unnecessary emergency department and
hospital utilization.
We work closely with patients' goals of care, particularly
around advanced illness and end of life. We have seen almost
5,500 patients in Geisinger at Home, and we have seen
incredible results. Admissions to the hospital have reduced by
35 percent. ER is down by 20 percent. And we have saved about
$500 PMPM, or per member per month, in our Medicare Advantage
Plan.
And then finally, 65Forward is a new primary care model
that we just implemented in August of this year. 65Forward is
only for seniors. It is a primary care office that is only open
for individuals who are over 65. We have reduced panel size for
physicians to about 400, compared to the 2,000 that normal
primary care providers take. We do annual wellness visits and
comprehensive memory and cognition testing, all in an effort to
develop individual plans of care. We have on-site pharmacy,
nutrition, et cetera.
In summary, I think that there is much that can be done. I
believe the most urgent need and the biggest opportunity is
funding to ease the burden for families caring for loved ones
with Alzheimer's. New payment models are needed to support care
giving services. Second, we need to support a more
comprehensive education for our primary care providers. Early
detection, screening, and intervention will make a difference.
Thank you.
Senator Toomey. Thank you very much, Ms. Tomcavage.
[The prepared statement of Ms. Tomcavage appears in the
appendix.]
Senator Toomey. Dr. Cohen, it is your turn for 5 minutes.
STATEMENT OF MARC A. COHEN, Ph.D., CLINICAL PROFESSOR OF
GERONTOLOGY, McCORMACK GRADUATE SCHOOL, AND CO-DIRECTOR,
LEADINGAGE LTSS CENTER, UNIVERSITY OF MASSACHUSETTS BOSTON; AND
RESEARCH DIRECTOR, CENTER FOR CONSUMER ENGAGEMENT IN HEALTH
INNOVATION, COMMUNITY CATALYST, NEWTON, MA
Dr. Cohen. Thank you, Chairman Toomey, Ranking Member
Stabenow, and members of the subcommittee, for the opportunity
to testify. I will draw upon my more than 30 years of research
on how the private long-term care insurance market could help
middle-class Americans pay for care, including Alzheimer's
care. I say ``help'' because this challenge is far too big for
either the public or the private sector alone to handle.
I would like to focus on a few broad points about current
problems and how to improve the affordability and accessibility
of private long-term care insurance. First, because the long-
term care risk is perfectly suitable for risk pooling through
insurance, we have an opportunity to move our financing system
for middle-class Americans away from a private-pay, safety net-
based impoverishment model toward an insurance-based approach.
Private insurance can play its part in helping move toward this
goal. Second, making private insurance more accessible means
making it more affordable and attractive to consumers, which
will require a multi-pronged strategy. Finally, even in the
context of market improvements, voluntary private long-term
care insurance is likely to play, at best, a modest role in
meeting our challenge. Paradoxically, public insurance models
could very well spur significant growth in the private market
as sectoral roles become better defined and citizens can plan
appropriately.
Most middle-income Americans are not poor enough to
immediately qualify for Medicaid until they spend down much of
their savings to obtain program eligibility. And penetration of
private long-term care insurance is relatively small. In
addition to consumer confusion about the risk, the product, and
the roles of the public and the private sectors, the costs of
traditional and combination products remain out of the
financial reach of many middle-class Americans. And this is a
shame, because those who have purchased policies and need care
receive significant value from their policies. Research shows
that they are very satisfied, and their coverage is enabling
their needs to be met while at the same time reducing burdens
on family caregivers. So what can be done?
To increase accessibility, efforts should be focused on
reducing selling costs and making changes to product design to
make products less costly. Efforts could also include targeted
tax incentives. And we also have to enhance the value
proposition to consumers so products are perceived as a good
deal and attractive.
Currently, for example, products are level-funded, but they
could be priced on a term basis, much like life insurance, and
then become level-funded at a later age. Additionally, premiums
and benefits could be indexed to costs which lower initial
premiums.
Should policymakers decide on tax incentives for the
purchase of private policies, one approach would be to provide
targeted middle-class benefits, including a reshaping of
benefits, like inclusion of long-term care coverage in
cafeteria plans and FSAs, and treating premiums as qualified
401(k) expenses with no early withdrawal penalties. To be
effective, such tax benefits need to be targeted to individuals
with savings plans who could otherwise not afford policies, and
the benefit would have to be high enough to induce purchase. To
reduce selling costs, insurance could be made available as part
of other health-care offerings.
To enhance consumer confidence, the new policy offered by
the Federal Long-Term Care Insurance Program, for example,
includes a premium stabilization feature. And long-term care
offerings could be sold on the exchanges and as enrollments in
Medicare and Medicare Advantage, or employers could be required
to offer education and policies that have people, on an opt-out
basis, make their choice.
Without the development of some level of public insurance,
however, we will not be able to insure the vast majority of
middle-class Americans. Washington State passed the Nation's
first public insurance program, which leaves a great deal of
room for private insurance to supplement the public coverage.
Also gaining interest is a public approach covering
catastrophic or back-end costs, along with steps to encourage
private insurance take-up rates to protect against up-front
costs. Again, private policies could be positioned as
supplements, not unlike Medigap insurance.
In closing, the solutions put forward to improve the
affordability and accessibility of private insurance in my
written testimony, even if they are incremental, need to be
part of a comprehensive enough approach to reflect the
magnitude of the problem that we are facing. A joint public-
private approach could make a big difference for families with
significant long-term care needs like those who suffer from
Alzheimer's and related dementias.
Thank you, and I look forward to answering your questions.
[The prepared statement of Dr. Cohen appears in the
appendix.]
Senator Toomey. Thank you, Dr. Cohen.
Ms. Kovach, you are recognized for 5 minutes.
STATEMENT OF LAUREN KOVACH,
ALZHEIMER'S ADVOCATE, BRIGHTON, MI
Ms. Kovach. Good afternoon, Chairman Toomey, Ranking Member
Stabenow, distinguished members of the subcommittee. Thank you
very much for the opportunity to share my personal story on the
impact Alzheimer's has had on my family. My name is Lauren
Kovach, and I am here today to share my story as a caregiver
and an advocate with the Alzheimer's Association and
Alzheimer's Impact Movement.
About 20 years ago, my life took an unexpected turn when my
grandmother, Helen Tannas, was diagnosed with Alzheimer's at
the age of 82. Alzheimer's is a progressive brain disorder that
damages and eventually destroys brain cells, leading to a loss
of memory, thinking, and other brain functions. Ultimately,
Alzheimer's is fatal. We have yet to celebrate the first
survivor of this devastating disease. My grandmother lived to
take care of her family. We are Macedonian. That is what we do.
Growing up, my mom, brother, and I lived four houses down the
street from my grandmother, and since my mom was a single
working mom, we were always over at Grandma's.
As a child, my grandmother was a daily part of my life. I
never imagined life without her down the street. I was 21 years
old and in my third year at college when my grandmother was
admitted to the hospital. I was terrified at the thought of
losing her. She spent 10 days in intensive care undergoing a
battery of tests which resulted in several diagnoses. All of
the conditions were treatable, except one: early stage
Alzheimer's disease.
When I was growing up, my grandmother had a pet name for
me. She called me ``moe chupe, moe chupe.'' That is Macedonian
for ``my girl, my girl.'' So 1 day after her diagnosis, I
turned to my grandma and said, ``You are my chupe. You are my
girl.'' The nickname she had given me so many years ago had
come full circle. It was now our turn to give back the love and
sacrifice she had always given us.
And so my mom and I made a pact that we would do whatever
it took to keep my grandmother home, and we prepared for the
longest good-bye of our lives. After the diagnosis, we adjusted
our lives to become full-time caregivers. I withdrew from
college, and eventually my mom had to retire early from her
teaching career. We knew we needed to take steps to care for
the woman who spent most of her life caring for us, but we did
not know what those steps were or how to make a plan.
We did not even really know what deciding to be a full-time
caregiver meant. There was a long and very bumpy road ahead for
all of us. When we were discharged from the hospital, that was
it. They gave us our discharge papers and wished us the best of
luck; no pamphlets, no explanations, no support. There we were,
facing this life-changing news and having to immediately make
one major decision after the other with no time or guidance to
make a long-term plan. We were not aware of resources that
could have helped my mom and me manage the stress of
caregiving, like adult day services, or possibly respite care.
Unfortunately, we learned about those too late, after my
grandmother had passed away. Fortunately, families now facing
an Alzheimer's diagnosis have new options that were not
available to my family. In 2017, Medicare began covering
comprehensive care planning services to people with cognitive
impairment, a critical step in improving the quality of care
and quality of life for those with Alzheimer's and their
caregivers.
Having a care plan would have helped us answer those first
questions of ``How do we take care of her, and what do we do
now?'' Everyone should have access to this lifeline. However,
fewer than 1 percent of seniors living with Alzheimer's
actually received care planning in 2017. That is why I am so
thankful to Ranking Member Stabenow for introducing the
bipartisan Improving HOPE for Alzheimer's Act, which is already
co-sponsored by 46 Senators, including many of you on the
subcommittee.
This important bill would help increase access to care
planning services that would have significantly improved the
quality of life for my grandma, my mom, and me. Full-time
caregiving while navigating the health-care system is both
physically and emotionally draining. I cannot describe the
level of exhaustion and desperation that we felt.
I learned to live in the moment, figuring out what to do as
I went along, because I did not know how much time I had left
with her. We kept on fighting. It was not always easy, but my
mom and I were able to keep my grandmother home for her entire
journey. From the time she was diagnosed, my grandmother never
spent a single night by herself.
In 2017, my grandmother declined into the late stage of the
disease. My chupe started dying on a Saturday. She had lived
with Alzheimer's for 15 years and passed away on June 3, 2017,
at age 97. I crawled in bed and laid my head on her chest as
she was taking her final breaths. I told her, through tears,
that it was okay to go, and I promised her that I would never
stop fighting for her, for the three of us, and the
immeasurable bond that we shared.
I am determined to fulfill that promise. It is why I
continue to volunteer hundreds of hours each year as an
advocate.
Thank you for holding this hearing today, and I
respectfully request that you continue to make Alzheimer's
research a priority and work together to pass critical
legislation like the Improving HOPE for Alzheimer's Act. We
must do all we can to ensure the best quality of life and care
for those living with Alzheimer's and the people who are for
them.
Again, thank you for the opportunity to share my story. I
look forward to answering any questions you may have.
[The prepared statement of Ms. Kovach appears in the
appendix.]
Senator Toomey. Thank you very much, Ms. Kovach, for a very
compelling and powerful story. I appreciate it. I appreciate
all of our witnesses today.
Let me begin with an observation here. I expect every one
of us is frustrated by the fact that, after all these years, we
still do not have a cure for Alzheimer's. Yet it strikes me as
odd that we sometimes seem unwilling to declare victory in
other areas where we have had great success. I am thinking of
the incredible success we have had in fighting HIV/AIDS, which
no longer is a death sentence. In fact, today the number of
Americans who die from Alzheimer's runs at least seven times
greater than the number who die from HIV/AIDS, and the HIV/AIDS
death number is declining.
The number of Americans living with Alzheimer's today is
five times higher than the number with HIV/AIDS. Overall cost
to taxpayers to treat Alzheimer's patients is nearly 10 times
the cost of treating and preventing HIV/AIDS. And maybe most
importantly, HIV/AIDS now is a chronic illness that is very
well managed and, with the proper medication, victims live
normal lives for decades. It is a fantastic victory, while
Alzheimer's is still a death sentence.
And yet, despite those facts, the NIH spends more money on
research for HIV/AIDS than it does for Alzheimer's. I think it
is time to reconsider how we allocate these resources.
But let me move on to the draft that I released earlier
today. This legislation--well, it is not legislation yet, but I
hope to introduce it as such soon. And it is meant to deal with
access and affordability of long-term care insurance. The
proposal, the idea, is to move the needle on affordability by
allowing families to use retirement dollars to buy long-term
care insurance on a tax-free basis. Dr. Cohen alluded to this
idea in his comments.
And it would do so by making the following simple changes.
It would allow individuals to withdraw funds from their 401(k)s
and IRAs for the purchase of long-term care insurance without
facing what they would face today, which is a 10-percent early
withdrawal penalty. And it would exclude the withdrawal from
income tax to the extent that it is used to pay for long-term
care insurance, with some cap, let's say $2,000 annually.
So, Dr. Cohen, the data from the Joint Committee on
Taxation shows about a quarter of middle-class taxpayers under
the age of 65 actively contribute to retirement accounts, and
therefore they would be presumably eligible to benefit from
this proposal. That adds up to over 24 million households. And
for this population, the middle-class family that is saving for
retirement, I would just like to ask you for your comments.
Do you think that this change in our tax law would help
these folks to make long-term care more accessible and more
affordable?
Dr. Cohen. Sure. Thanks. Yes, I mean it will, for those
people who have those savings accounts, for two reasons. One,
of course because, in a sense, you are making the cost of the
insurance cheaper, and so that of course is an incentive.
But I think even more important, having that available
there is a clear signal being sent to people at a young age
that this is a risk that they need to start considering even in
their working years, their 40s and their 50s. And for that
reason, people who would otherwise not even have knowledge that
this is coming down the road would have to make an asset
decision.
Senator Toomey. I would like to ask whether there is a
possible additional benefit to this. And that is, presumably by
making it more affordable, you would have a higher
participation rate in the purchase of long-term care, including
by younger and healthier people. In your view, is that likely
to expand the risk pool in a way that would itself tend to
lower premiums so that we create almost a virtuous cycle of
driving down the cost of long-term care?
Dr. Cohen. That is a good point. If a policy like this
indeed brings in a wider risk pool, then that can lead to a
number of things. Number one, the need for underwriting. The
strain on underwriting diminishes because you have a wider base
in the risk pool. That can then indeed lower premiums. I think
that is the key point, and I think you hit that really.
Senator Toomey. And also just the sheer scale. If, as you
say, it does in fact induce people to participate, the scale of
that participation allows whatever fixed costs to be
distributed over a larger pool and thereby also further tends,
all else being equal, to drive down the cost.
Dr. Cohen. Yes. And one of the components of that, of
course, is the marketing cost, which is a driver of insurance.
Senator Toomey. Right.
Dr. Cohen. And so you end up needing to spend less on the
education and so on to elicit purchase.
Senator Toomey. Thanks, Dr. Cohen. And I recognize Ranking
Member Stabenow.
Senator Stabenow. Thank you, Mr. Chairman. Thanks to all of
you. And, Lauren Kovach, thank you for sharing your personal
story. I know your grandma is very proud of you right now. So
we are so glad that you are here.
You mentioned the Improving HOPE for Alzheimer's Act and
the fact that we need to make sure that people are sent home
with more than what you got, discharge papers and the best of
luck, which happens to too many people. And I appreciate your
support and help with this as we are moving this forward.
But could you talk more about what care planning with your
grandma's doctors would have meant to you as a caregiver?
Ms. Kovach. Sure. So the things I know now--and down the
road we were denied for Medicaid, like you talked about, and
you know, you have to spend it down, and really Medicare did
not cover any services that we knew of at that time.
So essentially we had zero help--zero. It was just my mom
and me. And so all these years, looking back, if someone had
said to us, ``Hey, here, even reach out to the Alzheimer's
Association,'' I would have said, ``Oh, my gosh, there is a
whole association for this?'' Or if they were to say, ``You
know, we can have somebody help you do a care planning
session.'' If I would have learned back then about things like
possibly getting an elder care attorney, or the ins and outs of
Medicaid and Medicare and all this, we might have had a better
idea of how to plan for the future.
And we talk about long-term care planning, but we did not
know that was a thing. A lot of people do not think about that
until it is too late. So if we had all those resources back
then, I feel like maybe our 15 years could have been quite a
bit easier on both my mom and me.
Senator Stabenow. So you really did walk out not knowing
any of these things and had to try to just figure it out as you
went along?
Ms. Kovach. Well, luckily we have the University of
Michigan and the Alzheimer's Disease Center right by us, so
eventually we said, ``Okay, you know, maybe we should kind of
look into this Alzheimer's Center,'' and we took her there and
got her tested and met a wonderful physician there. But, no, we
kind of just navigated this through ourselves.
Senator Stabenow. Well, I know you did a great job, but we
need to make sure that that is not happening to family members
and patients as they go into the doctor's office and hear about
this diagnosis.
Dr. Karlawish, I appreciate your testimony and appreciate
the great work that is being done through your UPenn Memory
Center. And you talked about--well, I should say the CHANGE
Act, which Senator Capito and Senator Menendez and a group of
us have introduced, is really working to address several of the
issues that you talked about in your opening statement:
increasing the use of
evidence-based detection tools, making sure physicians
appropriately document a diagnosis in the medical record,
ensuring referral to appropriate services and specialists.
I know that you are doing that. We have some Centers of
Excellence in Michigan that are doing that. But not everybody
is doing that. In fact, my guess would be that the majority are
not, and not everyone is having access to this. So when we look
at this, does what we are doing through the CHANGE Act make
sense to you? And what else do we need to do to make high-
quality care the norm not the exception in terms of public
policy-making?
Dr. Karlawish. Yes. If someone is diagnosed in America
today with diabetes, it is expected that they are going to have
the opportunity to meet with a dietician and get an education
about how to live with diabetes. It certainly is not expected
that they are told they have diabetes, here is your
prescription, see you in 6 months. And that is just expected.
Similarly with heart disease. The expectation, for example,
after a heart attack is access to cardiac rehab and education.
So I think two very common prevalent diseases where we of
course--well, why does that exist in those diseases? Because
there is a business model to support and sustain that.
I have used that phrase, and I know it may sound awkward to
hear from a physician about the, quote, ``need for a business
model,'' but simply put, physicians need time to take care of
patients, and time is money. And they need to be reimbursed
appropriately. The problem in the case of the diagnosis of
cognitive impairment and the diagnosis of Alzheimer's disease
is that physicians right now do not have the adequate
reimbursement to cover the time that they would need to do
that.
That is why I think CPT code 99483 offers that opportunity.
But as I pointed out, the uptake is so low. So I think that the
challenge is how to find out why they are not using it, what
are the barriers to using it? And as I said in my remarks, I
think that that is as important a research project as research
to discover better treatments.
I would suggest we think about creation of comprehensive
Alzheimer's centers in regional areas where the difficult
cases, the complicated cases, can be referred. They can also be
centers of training for physicians out in the community as
well, to do workups. We have that for cancer centers, for
example.
Senator Stabenow. That is a great idea. You talk about the
fact that you need about 60 minutes, which of course is a
longer period than a regular visit that a physician would have,
and that you talk to someone other than the patient and develop
a plan, which is terrific.
I wonder if you could just talk about the downstream
effects of investing in such a high level of care, and how do
outcomes compare to patients who actually leave the office with
what happened with Lauren--just ``good luck''?
Dr. Karlawish. Right.
Senator Stabenow. I mean, there is a case to be made, I
assume, for doing it the way you are doing.
Dr. Karlawish. Yes, there is. You cannot--right now, you
cannot diagnose Alzheimer's disease if you do not talk to
someone else, because you need that collateral history to
understand the clinical significance of whatever cognitive
problems you have picked up on testing. This is not just the
fancy stuff we do at Penn because I am an academic. That is the
standard of care. I was part of a group writing diagnostic
guidelines for physicians in America that the Alzheimer's
Association organized.
And one of our standard recommendations is to get
collateral information from an informant. That is standard.
That person also generally becomes the caregiver as well. So
what physicians need is, they need to be able to have that
additional time to talk to that other person, the spouse, the
daughter typically, sometimes the son, to find out what is
going on and make sense of whatever they picked up on cognitive
testing.
When I talk to my colleagues who do not have the sort of
hour that I have, what they tell me about is how they try to
break it into a series of visits, two, three 20-minute visits.
I have talked to colleagues in other countries, and that is
what they do as well.
So you know, my message to CMS would be: let's educate the
physician workforce about how to restructure a visit to both
interview the patient and interview an informant. And that
probably is going to take more than 20 minutes. It probably
will take more than one visit. What the physician wants to know
is, can I do this in a way that I can document it, get
compensated, and not fall behind and not be told at the end of
the month, ``You are way down on your RVUs''? And that is the
challenge.
Senator Stabenow. Thank you. Thank you very much.
Senator Toomey. Thank you. Let me just inform everyone, a
vote is underway, and I am going to recognize Senator Cassidy.
And, Senator Cassidy, I would like to suggest that if
neither Senator Stabenow nor I are back, but Senator Roberts is
here, then if you would recognize him when you finish. And,
Senator Roberts, if you would proceed to take the gavel until
such time as I am able to return, I would be grateful.
Senator Cassidy?
Senator Cassidy. First, let me associate my remarks with
Senator Toomey. I did my residency when the AIDS epidemic broke
out. Society responded, spending hundreds of billions of
dollars to find treatments. And a disease which was not
diagnosable and was fatal is now something you live with, and
you might be more likely to die with Alzheimer's if you have
HIV than from HIV.
So it does seem like we need to redirect. HIV still gets 10
percent of NIH's budget, roughly. Why don't we take 10 percent
and give it to Alzheimer's? That is the one which is most
pressing, and most pressing on the fisc.
So, related to that, one of the arguments--and I do not
expect any of you to weigh in on that--but I do expect you to
weigh in on this, Dr. Karlawish. One of the arguments against
investing more in basic research for Alzheimer's is that the
science is not mature, that it is a barren field, if you will,
and even if you put more money there, it would be like rain on
a concrete sidewalk--it would just roll off.
Is that true, or, no, really there is basic research
opportunity that if better funded would develop more?
Dr. Cohen. It is not true.
Senator Cassidy. So more dollars would be helpful on the
basic research aspect of it?
Dr. Cohen. Absolutely. I----
Senator Cassidy. And I do not mean to cut you off, I just
have lots of questions.
Next, you mentioned the business model--and this will be to
you and Ms. Tomcavage. There is a Medicare Advantage Special
Needs Plan which theoretically is a business model for caring
for those with dementia. I will take your point. It is not for
the initial diagnosis. But it would be after diagnosis. Is that
MASNP not an adequate business model for the care of the
patient?
Ms. Tomcavage. So I would say that, if you are in a value-
based payment model, that is the way we need to go. So a lot--
--
Senator Cassidy. So the MASNP would be the way to go?
Ms. Tomcavage. Yes, because you have a premium dollar that
is at risk, right? And you work with providers to minimize
dollars that are spent on non-necessary things.
Senator Cassidy. So, Dr. Karlawish again--I only have 5
minutes now that Senator Roberts showed. Before I had a lot
more time.
Dr. Karlawish, you mentioned that the social worker does
not get paid, even though the social worker is doing that which
is within our scope of license, et cetera, et cetera. But under
the MASNP, Ms. Tomcavage, it really seemed like the social
worker could be reimbursed regardless.
Ms. Tomcavage. So the social worker is not reimbursed, but
if the social worker is provided as a resource from a value
payment perspective versus the fee-for-service----
Senator Cassidy. Yes, I get that. I get that. And if the
effect is the same, you can still pay for it.
Ms. Tomcavage. Exactly.
Senator Cassidy. So, if you will, there is a--we may need
to tweak it for the initial diagnosis. The other thing we have
been working on, for example, is the direct primary care model
to be used by Medicare. And a direct primary care I think would
also--because you mentioned the rate-limiting step is, you need
an hour.
But if you have a direct primary care physician who will
spend as much time as necessary, then all of a sudden that
would take care of that initial diagnosis. I will make a plug
for that.
Dr. Karlawish. I do not know what a ``direct primary
care''----
Senator Cassidy. That is kind of like a blue-collar
concierge where you pay $50 to $75 a month for a physician who
then is at your beck and call, so to speak. And they have to
bring value, or else you terminate the contract. And so they
are there to make sure that you do not have to come back for
15-minute aliquots of time. You come back for the time you
need, and otherwise you cancel the contract. It really is a
very market-based approach. The family practitioners love it.
Dr. Cohen, you mentioned tax incentives to purchase, or
tax-
preferred--but health savings accounts can now be used to
purchase long-term care insurance. Do we need something more
than the HSA, which is currently available? Why do we need more
than the HSA's ability to pay for long-term care insurance, I
guess is my question.
Dr. Cohen. I think the proof is in the pudding. You know,
the take-up rate and the use of the HSAs for those purposes is
very small.
Senator Cassidy. I get that, but I think that is almost a
lack of awareness of the need. I mean my dad, the day my
children were born, bought a policy for $1,000 which gives him
like a million dollars of coverage for the rest of their life.
So if he bought everybody long-term care insurance the day they
were born, that would make a difference, right?
Dr. Cohen. Awareness is definitely part of the issue. But
the other part of the issue is that--I think the sweet spot is
the people who, in the absence of insurance, would have to
spend down to Medicaid. So it also depends on----
Senator Cassidy. Yes, but it still takes a kind of ``I am
not going to think about that because I have more pressing
needs now.''
Dr. Cohen. Absolutely.
Senator Cassidy. It almost seems like it would have to be
mandatory. Let me ask one more quick question on telehealth,
digital health. It seems like you could do a lot in this space,
particularly for a rural person.
Dr. Karlawish, it seems like you could actually do much of
your exam via a well-done telehealth visit, and certainly if
you combined it with some digital health. Any thoughts?
Dr. Karlawish. I think the follow-up care, particularly
once there is a diagnosis and a care plan and an identified
carrier in place, I think a lot of follow-up care can be done
by telephone.
Senator Cassidy. I am not speaking telephone, but----
Dr. Karlawish. Yes, sorry; I am very 1970s on that one. It
can be done by very sexy digital things and whatnot. But I do
think that the initial visit really does require a face-to-face
engagement. But subsequent care, particularly talking with the
caregiver to help solve problems, manage behavior problems,
manage other functions, can very well be delivered by remote
methods. And oftentimes, actually, that is what we do at the
Memory Center, particularly when people have problems with
behaviors and it is very difficult to get them to come in.
Hence, the need for engagement via electronic media.
Senator Cassidy. I found, though--and I will finish with
this--I have found that many of those who are poor and rural
will never get to a neurologist.
Dr. Karlawish. Access for individuals in rural areas to
medicine in general is a challenge, absolutely.
Senator Cassidy. I yield back. Thank you all. And, Ms.
Kovach, very moving.
Senator Roberts [presiding]. Thank you to all the
witnesses. I have a full speech that I am not going to read
into the record because it is very duplicative of all of us who
care very much about this disease, this threat.
I am particularly struck, Lauren, with your testimony about
your grandmother. Maybe it is Macedonia, but there is a
Macedonian diet, by the way, and that is supposed to be
helpful. I do not know if that was the case or not. But the
thing that struck me was, as you said, when you were first
discharged from the hospital, that was it, bingo, just, ``You
are out of here.''
And I think that is one of the things that unfortunately
still happens to a lot of us, or a lot of people who are simply
not aware of treatment facilities, long-term care, et cetera,
et cetera, et cetera.
How many read the article in The Wall Street Journal,
``What Science Tells Us About Preventing Dementia''? Did
anybody read that? Well, we can make copies. How about that.
But this caught my eye because it was the first time I had
really seen anything for the individual who may be worried
about themselves, and I think that is a real concern.
We just lost a brother-in-law not too long ago. He was very
good at masking what he thought was ongoing, and he would not
ask for help. He was in Arkansas and felt very embarrassed
about even asking about it with his colleagues.
And so the only thing I recognized was that he would be
very quiet for a longer period of time. But he always had this
impish grin, anyway, and so I just thought he thought something
was terribly funny that I said. So, you know, I let it go. That
was unfortunate. For several years, I think, I can think back
that that was the case.
Here is what they say, if I can get to number one. Number
one is low blood pressure. I guess that is up to the
individual, and you do what you have to do.
Number two is exercise. Everybody pretty well understands
that--you know, back to blood pressure.
Number three is cognitive training, that education
increases a cognitive reserve, a term for the brain's ability
to compensate for the neurological damage. The Framingham
study, for example, found that participants with at least a
high rate really found some progress with this.
Four is diet. And there is a Mediterranean diet, and there
is something here that I do not recognize. The Mediterranean
diet, the MIND diet--and it is the MIND diet that comes way
ahead. Does anybody know what the MIND diet is? It does not go
ahead and explain that. I would have to Google it to find out
what on earth you do with a MIND diet. But the Mediterranean
diet maybe would be the same as in Macedonia.
And number five is sleep. Then there are a lot of things
about what you are doing every day. And it says if you do five
or six things a month, you are okay. We do five or six things
every day here, so I guess that protects us to some degree.
I want to know about the caregiver. I want to know what
each of you thinks is the best way that we can be of help to
the caregiver, given Lauren's testimony. And I am assuming that
was some time ago, Lauren. That really worries me, because of
personal situations that I have gone through with family of
mine and other relatives and otherwise, and I think we need a
lot of help with the caregiver almost as much as we do with the
patient.
Would any of you like to comment? Yes, sir.
Dr. Karlawish. I agree. I want to pick up from Ms. Kovach's
remarks. She talked about how she, quote, ``became a full-time
caregiver.'' Essentially what she was describing was ``I took
on a job,'' and your mother took on a job. And in our remarks
before, our conversation before the hearing, you told me that
your mother actually left the workforce as a teacher to do
this, which meant she left making money. She was no longer
contributing to Social Security. If she was under 65, maybe she
had to struggle to get health insurance, because we tie health
insurance to a job oftentimes. It was a job, but of course she
did not think of it as a job. She was taking care of someone
she loves. But yet that is what she was doing, losing wages.
And I think we have to respect the fact that we want
families to care for these patients because they best
understand the individual. They best can make them feel at home
and give them the dignity they want. That is what we want.
But we have to understand that when we ask daughters, and
sometimes sons, and partners to care for individuals with
cognitive impairment, we are asking them to take on a job that
they are not getting paid to do and that, as a result, they are
losing wages. Some of them do not have health insurance because
they are not yet 65, unless they can buy into the exchanges,
for example. And they are not contributing to the economy
anymore.
And so they are not contributing to a productive America
anymore. She was not teaching students anymore. I have
daughters in my clinic who reduce and/or leave work to care for
their families. So they are not contributing to the American
economy anymore, and they are working as unpaid workers to take
care of their relative because they love them. And they are the
ones who should do it.
So that is what we have to address for our caregivers, the
economic burden. One-third to one-half of the cost of
Alzheimer's disease to America is the cost of you and your
mother taking care of your grandmother. That is the economic
crisis.
Senator Roberts. I thank you for that answer. I apologize
to my colleagues for going over time. I just want to emphasize,
I think that we could do a lot better job in somehow unifying a
response effort across the country. We were talking about
telemedicine before, and that is a big thing out in my part of
the world. I am from Dodge City, KS, way out there. And that
does not mean that we do not have hospitals, et cetera, et
cetera, et cetera. But the telemedicine part of it is really
outstanding.
It would be wonderful if a person going through this could
hook up almost immediately with it.
I recognize the distinguished Senator Menendez.
Senator Menendez. Thank you, Mr. Chairman. Thank you to the
witnesses for sharing your insights and expertise.
Alzheimer's disease not only presents our Nation with an
enormous health-care and fiscal challenge but also takes a
tremendous toll on every family that is forced to confront it.
I know this at a deeply personal level, as my mother
suffered with Alzheimer's for 18 years before it claimed her
life. And during the early years of her diagnosis, there were
many days that mom seemed just fine. But year after year, those
good days became fewer and farther between. It was a long and
heart-breaking good-bye to the strongest woman I have ever
known. [Pause.]
And I know the pain that my family felt is the same pain
felt by families of more than 180,000 New Jerseyans battling
Alzheimer's today, and millions more Americans nationwide.
I know about the inter-generational challenges that
confront people caring for their ailing parents and
grandparents, as Dr. Karlawish was talking about. My sister was
a legal secretary, and I was down here in Washington, so our
choice, because of cultural preferences, was to keep mom at
home. And so that meant her having to largely give up her job
and me trying to supplement the income at the same time she was
getting her son through medical school and I was getting my two
kids through college--these inter-generational challenges of
taking care of a loved one in the twilight of their life and
being able to have the resources to prepare for your children.
I know the extraordinary physical and emotional demands
placed on caregivers and the vital role that Federal programs
like Medicare and Medicaid play in patients' lives.
So whether it is investing in life-saving medical research,
or protecting the rights of patients diagnosed with early-onset
Alzheimer's, or defending the Medicaid coverage relied on by
one in four seniors with dementia, I believe we have to pursue
every strategy we can to improve the lives of patients with
Alzheimer's and help their families cope with the demands of
their care.
To that end, I would like to ask you, Dr. Karlawish, do you
believe that we have the clinical workforce needed to ensure
the treatment of the growing number of Americans--that they
will receive the best care with the most recent advances
regardless of where they live?
Dr. Karlawish. I do not.
Senator Menendez. That is what I thought the answer is. And
that is just one of the dimensions of this challenge that we
need to address.
Let me ask you also--Latinos are more than one and a half
times more likely to develop Alzheimer's as their white
counterparts. African Americans are twice as likely to develop
the disease as their non-Hispanic white counterparts are. Are
there any current schools of thought why these groups have
higher rates than others?
Dr. Karlawish. Yes. There are two, at least. One is in
America, particularly, race tracks social and economic access.
And individuals who have a life of struggle, socioeconomic
struggle, even poverty, until they reach the social insurance
program of Medicare, they have had patchy health care up until
then.
So, for example, undiagnosed or only partially treated
heart disease. And so as a result, they are at greater risk of
developing dementia later on in life because of having less
healthy brains, which was outlined by your colleague--the many
things you can do to maintain your brain. So, for example,
blood pressure control that requires diagnosis and treatment,
oftentimes from about the age of 40 or 50 on.
So people of color in America, to the extent that poverty
often tracks race in America, have not enjoyed access to health
care so consistently.
And the second is called access to quality education. As
your colleague mentioned, there is good data that quality
education reduces the risk of developing Alzheimer's disease.
That probably relates to two things.
Number one is creation of brain reserve. There is a
neuroscience theory behind that that I think is robust. But
also, education gives you access to social and economic
stability. And so I think that the legacy of race in America in
socioeconomic impact on individuals is one reason why Latino
individuals and people of color face great risks of developing
Alzheimer's.
Senator Menendez. That is why it is important to increase
our minority participation in clinical trials----
Dr. Karlawish. Absolutely.
Senator Menendez [continuing]. So we can get a better
sense. Finally, if I may, I was sitting with Senator Romney
who--he and his wife fund a neurological center in Harvard
which has like 400 scientists. He told me that you can get a
brain scan, and the doctors can look at your brain scan and
tell you whether 10 years hence you may very well possibly be
subject to Alzheimer's. And the reason that that is important
is because there are some trials going on where there is some
type of spray or other inoculation that would act as somewhat
of an immunization.
Are you familiar with that work?
Dr. Karlawish. Very much so. I have been part of it as a
researcher, and the Penn Memory Center participates in several
of those studies.
In brief, we have made tremendous advances in our
understanding of Alzheimer's disease since 1976 when Dr.
Katzman said, ``It is time to stop referring to senility as
senility and recognize it for what it is, which is Alzheimer's
disease.''
In just 40 years--at the same time that cancer and
cardiovascular disease were very well recognized in 1976, think
about that, this disease was essentially unrecognized. In just
40 years, we have made tremendous progress transforming the way
we understand this disease.
When I started practice at the Penn Memory Center in 1997,
you had to be demented in order to be diagnosed with
Alzheimer's disease. It was a Gothic horror story, because you
had to die to get a brain autopsy to then show that in fact
what caused your dementia was Alzheimer's disease.
Now we can visualize the pathologies of Alzheimer's disease
using neuroimaging, the scans that Senator Romney was talking
about, in a living person. It can visualize amyloid protein,
the pathologic protein, in a living person's brain using
imaging. And we have developed techniques to visualize tau
protein as well.
The vision we have in the field--imagine getting tests that
show the presence of these proteins, and other tests as well
that show evidence of neural degeneration, and therefore,
before you are disabled, starting treatment to slow down the
process of neural degeneration leading to the kinds of problems
that your family dealt with, for example.
That is the vision that we have, similar to the vision of,
you turn 50 and you get a cholesterol test, and based on that
result, you start a therapy. Or you get a bone marrow density
test, and based on that result, you start a therapy. That is a
vision. And I have to say again, in 1997 that was unknown to
us, and now in less than about 20 years, look at the progress
we have made.
And I want to thank you all, because that is because of the
funding that you all began to do. When you doubled the NIH
budget, and then when you passed the Alzheimer's Accountability
Act and increased the funding available for Alzheimer's
disease, that is an incredibly short period of time for the
progress that we have made, an incredibly short period of time.
Senator Toomey. Senator Casey?
Senator Casey. Thanks, Mr. Chairman. Thanks for the
hearing.
I want to thank the panel. I know we were all in and out
for your testimony, so we missed some of it, but I will start
with Dr. Cohen.
In your testimony, you testified about how expensive long-
term care insurance is, and that it is out of reach for many
middle-class families. Obviously, that means Medicaid for a lot
of families.
A 2019 report by the Alzheimer's Association says, quote,
``Medicaid is the only public program that covers the long
nursing home stays that most people with dementia require in
the late stages of their illnesses,'' unquote. The same report
estimates that Medicaid pays over $49 billion to care for
people with Alzheimer's disease and other dementias. Medicaid
funds care that includes both nursing home and home- and
community-based services. It is a critical support to so many
families.
There is a big debate here about what to do next. One side
wants to go in one direction, and the other side in a different
direction. There have been proposals to block-grant or to put a
cap on the program.
We know the value of Medicaid, and I guess I wanted to ask
you about the impact of either cuts or caps to Medicaid funding
and the impact that would have for people living with
Alzheimer's disease and their families.
Do you have an opinion about that?
Dr. Cohen. First, you are absolutely right about the
centrality of Medicaid, especially for people with Alzheimer's
and related dementias, because they have this extended use. And
I think the issue here is--I will get to the per capita caps--
but I think one of the reasons that there is a concern with the
middle class having to spend down their income and assets and
then quality for Medicaid is that there may be available
alternatives for them like private insurance so that those
people who do not have any private alternatives have a strong
social safety net. And that is a significant problem today.
With respect to per capita caps, I mean, frankly, that
would shift the financial risk to States and to individuals.
One of the issues is that they do not take into account the
determinants of need.
So if you are just looking at a population basis, for
example, it does not account for changes in the morbidity, the
health status. It does not account for very different
distributions, even among the elderly population.
You take a State like Alaska that has some of the fastest-
growing population over age 85, a per capita cap--and those are
the folks, by the way, who have the highest incidents of
needing care for Alzheimer's and related dementia and
functional impairments. So you have this issue, then, that you
are going to end up underfunding because it is not related to
need.
And the final issue, I think, on that is that right now we
have had a rebalancing in the Medicaid system where there is a
tremendous amount of money going to home- and community-based
care. Nursing home care is a mandatory benefit under Federal
law. Home- and community-based care is optional. And so you run
the risk actually of having States that face additional
pressures having to cut home- and community-based care. And I
think a number of people have spoken about the importance and
the desire of wanting people to be able to age in place.
So I mean, it would be a serious concern.
Senator Casey. Thanks, Doctor. I appreciate that.
Dr. Karlawish, I want to turn to you. I want to join my
colleague, Senator Toomey, in welcoming you here and
recognizing the good work the Penn Memory Center does. In the
interests of time, I will just pose the question briefly.
The connection between hearing loss and dementia--if you
could speak to that. I have legislation that I will make sure
you are aware of, and I will send you a broader question in
writing, but just if you could talk about that connection.
Dr. Karlawish. Yes. There are several identified risk
factors for dementia. I mentioned a few of them already: poor
cardiovascular health, poor quality education. And another is
hearing loss; that is well recognized in the literature now.
There are randomized trials, studies going on now, that
test whether correcting hearing loss can slow the rate of
cognitive decline. Having said that, hearing loss in and of
itself is a disability and limits quality of life. So I think
it only adds to correcting what I think is a bizarre aspect of
our Medicare statute, which is that access to hearing aids,
like glasses and dental care, is oddly not provided. And the
statute was written in 1965. I mean, we did not have the
Internet and whatnot, et cetera.
So correction of hearing loss is not just about improving
your ability to hear. There is good data suggesting it may well
be about also maintaining one's cognitive abilities as well.
Senator Casey. Thanks, Doctor.
Senator Toomey. Senator Whitehouse?
Senator Whitehouse. Thank you very much, Mr. Chairman. Let
me say how happy I am to have a meeting of the Health
Subcommittee of the Finance Committee. I hope we have many
more. There was a long drought before we got started, and I
appreciate it. This is terrific. So, well done.
First of all, let me thank Ms. Tomcavage for being here,
for being you, for being Geisinger. I am a delivery system
reform maven. All the way back to ``To Err Is Human'' and
``Crossing the Quality Chasm,'' I have been watching Geisinger
and what you have been doing on that front, and it is really
fabulous. So a big congratulations to you.
The Alzheimer's population can overlap with the, what goes
by different names, end-of-life population, advanced-care
population--now the latest nomenclature out of the Innovation
Center is the ``Seriously Ill Persons'' population. And there
is a new Innovation Center program for seriously ill persons
that has been just proposed there in the, what do they call it,
request for proposals, I think, phase.
And I would be interested if any of you have taken a look
at that. We probably do not have time to discuss it right now,
but I did a lot of work with that in trying to get that off the
ground. If you have any thoughts on that program and how it
could be improved, or what you think its prospects are for
doing good in this area, I would love to hear that.
If you could take that as a question for the record, and if
you have something to say, just send in a note on that subject.
I think it is potentially exciting, and it breaks up some of
what I consider to be the really dumb rules as they pertain to
this population, like 3 days and 2 nights in the hospital
before you can get to a nursing home. For this population, that
makes no damn sense at all. Or not being able to have access to
home care until you are truly home-bound, that makes no sense
to this population either.
So there are a couple of, I think very good ideas, and I
would just like to hear your thoughts on those.
Last, this illness has been such a plague on so many
families, and it is such a huge, looming cloud over the
finances of our health-care systems, I am looking for what you
think are the bright spots. What are the exciting new openings?
What are the things that you think we should be most reassured
about? What is the good news in this rather grim illness?
Dr. Karlawish. A couple of things. Number one, we are here
talking about it. As I mentioned to you, at the first Senate
hearing on this topic, there was one Senator present: Senator
Eagleton. That is the first thing: we are talking about it.
The second thing is----
Senator Whitehouse. I had family members who probably had
this illness, but nobody had even a name for it.
Dr. Karlawish. Correct. Because it was considered----
Senator Whitehouse. They are a little bit nutty, yes.
Dr. Karlawish. It was considered an extreme stage of normal
aging, and therefore not something that medicine should care
about, and a private family problem that would be dealt with by
families.
Senator Whitehouse. Yes.
Dr. Karlawish. Since then, autonomy has become a sacred
value, thankfully, such that anything that takes away our
ability to exercise our right to live the lives we want to live
is something we do not want, and Alzheimer's does that right
away and early on. So that is what made it a disease.
In that sense, it is a disease of autonomy. It is, in that
way, if you will, a very American disease because it gets right
to the heart of what we care most about: the ability to live
our lives the way we want to live them.
Since 1976, as I pointed out earlier, we have made
tremendous progress in understanding the biology of the
disease. And now, being able to visualize that biology in life,
not having to wait until you die to be told that it was
Alzheimer's, not having to wait for that Gothic horror story,
that means that we are able now, in the last just about 12
years, to test drugs that target the pathology to see if we can
change the rate of decline.
And so, I think we should have hope that, in a reasonable
period of time, we will be diagnosing this disease potentially
before you are disabled and beginning treatment before you are
even disabled, to slow down that decline, to slow down that
time before someone is having memory problems that interfere
with their daily life.
I would also point out that, again courtesy of NIH funding,
multiple studies have validated ways to help families like Ms.
Kovach's.
The one challenge, though, from all those wonderful
studies--all those excellent studies like the REACH program--is
the failure to translate them into our health-care system, like
say Geisinger, and make them just part of the standard of care.
And a lot of it has to do with the fact that the Medicare
statute was written to reimburse doctors to practice medicine.
It was not written to reimburse America to provide health care
to its seniors.
And so, if there is one plea I would make, it would be to
think about how, not just care planning, but then care delivery
can be better integrated into our health-care system.
Senator Whitehouse. Well, thank you. My clock has run out,
so other witnesses who have thoughts are more than welcome to
communicate them to me in an answer as a question for the
record, as well as about the SIP program. Thank you.
Thanks, Mr. Chairman, and thank you to the ranking member
for organizing this. I think this is terrific. Keep doing it.
Senator Toomey. Senator Cardin?
Senator Cardin. Thank you, Mr. Chairman. I thank both you
and Senator Stabenow for not only conducting this hearing, but
for your leadership on these issues with the legislation that
you have filed.
We have all been very much impacted by Alzheimer's. I want
to thank all the panelists. Ms. Kovach, your story puts a face
on what we know is in our community, but when you hear the
gross numbers, each one is a family. And we thank you for your
courage to come here and tell about your circumstance.
Clearly we have to continue the research and be more
aggressive, because there are still a lot of questions that are
unanswered, many questions unanswered about this disease.
We have to deal with third-party reimbursements for the
continuum of care, including early detection, and the issues we
have talked about. We have to have a more aggressive plan to
deal with caregivers and caregiving, including how we deal with
respite care for those who are taking care of their family
members at their home, and long-term care insurance--all of
that.
But, Dr. Karlawish, I want to go to the point that you
really got me interested in: being able to go to my doctor, get
some tests done, and find out if I have a problem. So I am
wondering, if we are not at that point yet during our primary
care visits, our wellness visits, where we can have pretty good
indicators as to whether it is called for to do further
investigations and perhaps scans, how close are we to that
point?
And as I understand it, reimbursement is not clear as to
whether that would be fully reimbursable at this particular
moment.
So are we at the point where the proper protocols in
primary care should be more aggressive in helping to identify
earlier those who have vulnerabilities?
Dr. Karlawish. Right now we need to provide a good, solid
business model to American medicine to identify people with
disabling cognitive impairments; in other words, people with
dementia, because they are sick and they need help.
A vision for the future would be a vision where you do not
have to be cognitively impaired and disabled to be diagnosed
with the disease. We are not at that point yet with our
science.
The bride is waiting for a groom. The bride is the
biomarkers that we have discovered that can pick up evidence of
the disease even before you are ill. The groom, if you will,
that we are waiting for is the drug that goes after that
biomarker and changes the rate of cognitive decline.
In other words, imagine that we were in a world where we
could measure elevated cholesterol and predict that it is going
to cause, down the road, a heart attack, or diminished bone
mineral density and predict, down the road, that the person
could develop a fracture, but lacked the HMG-CoA reductase
inhibitor drug to give the person with the elevated
cholesterol, or the bisphosphonate to give the person with the
reduced bone mineral density. We do not have that drug yet.
And I do think that, once we have that drug, then we marry
those two together and that recreates a new way of diagnosing
the disease.
Senator Cardin. So are you saying we have to have an
effective way to deal with those who are early detected before
we can implement protocols to determine whether someone has a
vulnerability?
Dr. Karlawish. Correct. I am not an attorney, but I will
play one in this hearing room. I want to really emphasize, when
we speak about early detection, what I am talking about is
labeling someone independent of how they are doing--before any
evidence of cognitive impairment.
Senator Cardin. Right. Right. It would just----
Dr. Karlawish. We are not ready to do that because we have
not--and now I am going to speak like a scientist--we have not
validated those methods of detection. In other words, they do
not stand up.
Senator Cardin. That is what I thought. I gotcha. And of
course the analogies--we could go through so many different
types of tests we take today for all types of things, from
early detection of cancer to high blood pressure.
Dr. Karlawish. Those are validated tests. Exactly.
Senator Cardin. So what do we need to do to be able to get
to those types of validated tests? Is it additional resources
on research? What is the major--or is it just going to take
time?
Dr. Karlawish. Two things. Of course it will take time.
Research is number one. And I thank you on behalf of my
colleagues for the funds that you have allocated to the NIH to
support that research. Studies like the anti-amyloid and
asymptomatic Alzheimer's study, the Generation Project, the
DIAN program, are just a few of the studies that are attempting
to do just the kind of validation studies that we need to do.
You funded them, NIH has funded them, and we need to
continue to fund them and fund more. That is one thing.
The second thing, though, is to begin to anticipate a
health system with this new model of diagnosis and treatment--
--
Senator Cardin. Okay.
Dr. Karlawish [continuing]. And what it will take to
implement this new model of the disease. But again let me
emphasize, right now in America there are people with dementia
who are not being diagnosed, who are not getting care, and
families who are suffering. And they have to come first. And
they are asking right now for your help.
Senator Cardin. I have just one last question. You
mentioned a brain scan can determine whether there is a
deficiency in the brain. That technology is here today, is it
not?
Dr. Karlawish. That is right. FDA has approved PET radio
tracers that measure amyloid in the brain, and amyloid is one
of two pathologic hallmarks of Alzheimer's disease.
There are also tracers being developed to measure tau
protein, which is the other pathologic hallmark of the disease.
Those are being studied, et cetera. And one is FDA-approved;
the other is still under study.
Senator Cardin. Thank you, Mr. Chairman.
Senator Toomey. Senator Carper?
Senator Carper. Thanks so much for being here. My mother
had dementia. Her mother had dementia. Her grandmother had
dementia. So this is something we have a lot of familiarity
with in my family, especially on my mother's side of my family.
The last thing I do at night, usually before I go to bed, I
have a picture of my mom in the prime of her years, probably
just right out of high school, sitting on my desk and I turn
out the light on my desk and say goodnight to her. So this is
something that is near and dear to my heart, as I am sure it is
to others.
This question may have already been asked, and if it has
been, excuse me, but I read an interesting book over the August
recess called ``Grain Brain,'' G-R-A-I-N Brain. We have the
name of the physician who wrote it. But one of his contentions
in his book is that there are things we can do with respect to
our diet, with respect to exercise, with respect to things that
stimulate our brain, and that they will not stop Alzheimer's
altogether or the progress of dementia entirely, but they can
slow it down--but they can slow it down.
And I want to just go down the line here, starting with
you, ma'am, if I could. Do you put any credence in any of that,
please? And if you do not know, just say ``I don't know,'' and
we will let somebody else take a shot at it.
Ms. Kovach. I don't know, but I do have a comment. So I
look at my grandmother, and she walked a mile every day. She
did crosswords every day. She was married for 52 years to the
love of her life. She was happy as can be. And she got
Alzheimer's. So sometimes I think we don't know. If you have a
brain, you are at risk.
Senator Carper. Thank you. Please?
Dr. Cohen. I am not an expert. The evidence seems to
suggest that cardiovascular exercise, a good amount of sleep--
--
Senator Carper. Oh, yes, sleep was another point that was
mentioned.
Dr. Cohen. Right.
Senator Carper. Also the quality of the sleep; not just how
long, but the quality of sleep.
Ms. Tomcavage. So I think there is a whole host of
medications, anticholinergics, for example, that really do
mimic or increase the risk of Alzheimer's. So I think those are
things that we need to get very aggressive with--warning labels
and education with providers. So that is another area, not
nutrition or exercise, but something we can do.
Senator Carper. Okay then, Dr. Karlawish?
Dr. Karlawish. The AARP's Global Council on Brain Health,
of which I am a member, has developed a series of evidence-
based reports which identify many of the things you have
identified already, as well as others, for the maintenance of
brain health.
The Centers for Disease Control had a healthy brain
research network that is currently not active, one of whose
missions was to promote these brain-healthy activities.
There is a lot that we know about what can maintain a
healthy brain. You have listed out several of them here. I
think what is needed is to get the message out to the American
public and to think about how we can create brain-healthy
societies.
Senator Carper. All right; thanks. I want to follow that
with a question. I think, Dr. Karlawish, you noted in your
testimony that our health-care workforce is probably too small
and insufficiently trained to diagnose and treat patients with
Alzheimer's disease.
The Rand Corporation group has made similar conclusions,
finding that workforce shortage has produced ultimate wait
lists of, I think, about a year and a half for dementia
screening and treatment.
And I wondered if you might have some recommendations for
us for increasing the supply of geriatricians, for
psychiatrists, for neurologists, and others to ensure that we
can meet the needs of our seniors with dementia.
Dr. Karlawish. Yes; I mean, doctors are economic actors.
Give them an incentive to pursue this. Make it worth their
time, number one.
Number two, exercise some of the ability, some of the
influence that Medicare has on America's training programs,
residency slots that are supported by Medicare. Think about how
those might be incentivized to train people in those fields.
Going into college and then med school, and then the low
wage of a residency fellowship, is an economic challenge. Think
about ways that we could minimize the cost to an individual
training to become a physician. I mean, I have colleagues who
say, ``I would like to go into X, but I am getting so far into
debt that I am not going to go into internal medicine; instead,
I am pursuing a field where I can recover some of that debt.''
So think about using the strings of the purse, if you will,
to incentivize people to pursue what right now are not as
lucrative areas, or as remunerative areas of medicine at the
training level, both as individuals as well as in residency
programs in terms of the slots that are offered.
Senator Carper. Just a quick follow-up, if I could, Mr.
Chairman. Do you think we could train primary care providers,
including nurses and physician assistants, to provide some of
the screenings and care planning services that might be needed?
Dr. Karlawish. I do.
Senator Carper. Thank you. Could you be more succinct?
[Laughter.]
Dr. Karlawish. Yes. [Laughter.]
Senator Carper. Thank you.
Dr. Karlawish. No; I mean again, analogies of the diseases
here are very helpful. I mean not every case of congestive
heart failure needs a CHF board-certified congestive heart
failure-certified cardiologist. Many internists can handle many
cases of heart failure.
The discerning internist knows, she knows when it is time
to refer. And we can do the same thing with cognitive
disorders. And so, no, this is not simply the work of
physicians.
Moreover, the work of other very skilled professions is
needed here for their expertise, such as social work, which is
critical to this disease and needs to be part of the care plan.
Senator Carper. Thanks so much. Thanks very much to all of
you.
Senator Toomey. Senator Lankford?
Senator Lankford. Thank you, Mr. Chairman. Thank you all
for being here and the dialogue about Alzheimer's. This is
important to my family, as well as just about everybody on this
dais, as talked about--how Alzheimer's has affected their
family directly. And thanks for your story, Ms. Kovach, and to
be able to walk through that.
Let me ask a question about a worldwide look. We are
spending billions of dollars, Federal tax dollars, working on
brain mapping, research, all kinds of diagnosis, treatments,
and everything else. Who else is doing this worldwide? Where
else is there significant research going on? And what do you
see?
Dr. Karlawish. Europe has also made a substantial
investment in this space in their research, the European Union.
There is an investigative group there called EPAD, European
Prevention of Alzheimer's Disease initiative.
And Japan has made tremendous investments in the delivery
of care, particularly robotics, for example.
Senator Lankford. Do we have enough coordination?
Dr. Karlawish. Yes. NIH funded a grant called ``The
Alzheimer's Disease Neural Imaging Initiative.'' We all call it
ADNII. And it is ongoing, and it has been validating the
biological markers of Alzheimer's disease. It is almost like
sort of writing the encyclopedia, or the dictionary, of
Alzheimer's.
And ADNII became a model for ADNIIs throughout the world.
And so if you look across other countries like Australia,
Korea, Japan, and Europe, there are similarly modeled ADNII
studies doing similar kinds of measures, et cetera, so you can
begin to compare across countries, across databases, how these
cognitive measures, biomarker measures, functional measures,
compare.
That was our innovation that we then exported.
Senator Lankford. As it should be, for us to be able to
work together on this. There will be individuals in Japan who
will take on this issue differently than those who are in
Europe, different than those who are in the United States. And
as we each do our individual research, I just want to make sure
there is enough cooperation and there are no barriers to
coordination on working towards a solution.
Dr. Karlawish. Yes; I mean the annual meeting of
Alzheimer's researchers, AAIC, is a truly international
meeting. This year, in fact 2020 I should say, is the next
meeting; it will be in Amsterdam. The meeting before that was
in Los Angeles. So this is a we-are-all-in-this-together
disease.
Senator Lankford. I would assure you that is true for us,
at least for all the families that have been affected as well.
Let me talk a little bit about care coordination and the
barriers around care coordination. Family members are trying to
get answers while they are trying to also take care of family
members as they walk through the process of trying to be able
to work through a physician or through a nurse or through a
facility that may provide housing. There are lots of questions
there.
What are you finding, as far as ways that can be improved?
What are the barriers to care coordination and getting answers?
Ms. Tomcavage. Yes; so I think there are a significant
number of barriers. One, there is a fair amount of difference
in funding at the local level. And we are here at the Federal
level, but the reality is that much of the funding also comes
through at the State level. And so, you know, helping to kind
of look at that, I think, is important.
We talked earlier about the fact that people just do not
know what resources are out there. And I think we need to
continue to kind of educate on that. We have approached it from
a perspective of a non-physician role. So I think there really
are non-physician roles that are important.
We actually have a, what we call a ``non-licensed community
health worker.'' Many folks have used community health workers
over the years, but we have really used them to be really the
connector to the community. They work in their community. They
hit the streets in their community, so to speak, so that they
know all of the resources that are in their community.
I think it is about connecting the families to those
resources sooner rather than later, so that they can understand
what they are going to need.
The other kind of last point I will make is anticipating
the decline. So a lot of times we wait until the family gets
exhausted, and then we are kind of running around trying to put
a plan in place. We talked about a plan of care earlier. And so
I think really thinking much more aggressively about advancing
illness that we talked about earlier, and helping the family
understand the changes that are likely going to come, I think
is important--to get up front so that the families have the
respite that they need.
Senator Lankford. And obviously, the reasonable person to
be able to answer those questions initially, to be able to
connect to them, is a physician or a nurse or someone who is
there around diagnosis to then try to figure out how we help
provide a connection to services. Is there a barrier to getting
that information to physicians and nurses, to get them the
information to be able to help them to know where to go next?
Ms. Tomcavage. No, I don't think so, if you work in a team
environment--so organizations that have a team approach where
you have aligned either social workers or community health
workers who really know the community, and then can link it to
the physician through to the team. I think it really comes down
to primary care and specialty care teams that really leverage
non-physician workers.
Dr. Karlawish. At the Memory Center, very quickly, when I
have a diagnostic follow-up visit, it is myself, the patient,
the family member, and one of our social worker team in the
room. I deliver the diagnosis, answer their questions, et
cetera, and then they go off with the social worker to continue
the discussion around the care plan.
So that means we have to have four chairs in the room, at
least.
Senator Toomey. Senator Daines?
Senator Daines. Thank you, Mr. Chairman, and thank you for
holding this hearing today.
Sadly, Alzheimer's and dementia affect the lives of
thousands of Montanans. My wife and I were part of an
Alzheimer's walk in Bozeman, my home town, when the weather was
a little bit warmer, a few months ago. And not only do they
affect those living with the disease, but also, as has been
discussed here in this hearing, family members, caretakers,
community members who are helping them fight every day and
every night.
It was in September in fact that Cindy and I had the honor
of walking in the Walk to End Alzheimer's in Bozeman. That is
my home town since 1964. It was great to see such a large
response from the community that got out to walk that day.
Walking side by side with those folks gave me the
opportunity to hear first-hand--you have a lot of time just to
chat and hear everybody's story about those who have personally
been impacted by just a devastating disease.
Like Chris in Bozeman, MT, whose family received a tough
early-onset diagnosis and struggled to navigate the dementia
care planning maze until they actually reached out to our
office. Or Lynn in Billings who endured 3 years of uncertainty
and saw seven--seven specialists before getting a definitive
dementia diagnosis for her husband.
These are the stories that I bring with me to Congress that
help serve as an important reminder for how critical our
efforts are to help combat Alzheimer's.
We have made some good progress over the years to tackle
this devastating disease, but there is so much work to be done.
So, still a long road to go. And that is why we are here today.
For the more than 21,000 Montanans currently living with
Alzheimer's, and the 27,000 expected to develop this disease by
2025, early detection, diagnosis, and access to care planning
services are absolutely critical.
Unfortunately, we know that Alzheimer's can be difficult to
diagnose. And once a family finally receives a diagnosis,
patients and families can face this complex maze of treatment
and support options they must navigate through. And that is why
I am working on the bipartisan Improving HOPE for Alzheimer's
Act that will help patients and families living with dementia
by enhancing access to care planning.
It is stories like those from Chris and from Lynn across
Montana that help highlight why this bill is so important for
those who are on their journey with this terrible disease.
Dr. Karlawish, can you speak to your experience with care
planning and the types of services Alzheimer's patients and
their families can benefit from receiving when planning for the
future?
Dr. Karlawish. Sure. So after labeling the person's
cognitive problems as a dementia caused by Alzheimer's, what is
the stage? You need to think about what the stage is, by which
you mean, what are the disabilities the person has? Problems
with finances? Transportation? Cooking? How then are we going
to take care of those disabilities? Who will manage
transportation? How will a meal be provided? How will
medications be managed? How will finances be assisted?
And so the care plan involves, for that individual who is
disabled, coming up with who the people are who are going to
help with those things. Sometimes it is a family member.
Oftentimes it is family, but other people as well.
A core question we ask is: what is a typical day? Is it
safe? Is it social and engaged? And what resources do you need
to keep it safe, social, and engaged?
As the disease gets worse, patients start to need more
supervision. And an adult day program becomes often very
important. So, finding an adult day program, training the
caregiver for how to talk to their relative about the need to
go to it, getting transportation to it, paying for it, are all
things that we help coordinate for them as well.
So you have to think of this disease like a disability.
Instead of needing things like wheelchairs and ramps and doors
that open automatically, et cetera, what you need is someone
who is going to help that person self-determine their life.
That is to say, manage their medications, manage their money,
manage transportation, manage cooking.
And so, care planning involves sitting down with a family
and going through that typical day, going through those
activities of daily living and making sure that they are
covered, making sure they are taken care of.
Senator Daines. Dr. Karlawish, I want to follow up with
another question before my time runs down. And that is, there
is a common misperception that Alzheimer's is a disease that
affects only older people. The truth is that an estimated
200,000 people in the country are living with early-onset
Alzheimer's, and many with early-onset are in their 40s and
50s, often in their prime earning years, which just makes what
you just described that much more challenging.
They have families. They have careers. They are even
caregivers themselves when Alzheimer's disease strikes.
You describe in your testimony, Dr. Karlawish, that
research has helped to transform the way Alzheimer's is
diagnosed. I am a little over time here. It is my last
question. But could you explain why this is important and what
efforts are being undertaken to help diagnose this disease
early on?
Dr. Karlawish. A disease is best diagnosed before that
disease is causing disability and treated, obviously, before
disability. There is a substantial research effort underway to
do just that.
What are the markers that we can measure? And then, based
on those who have evidence of the disease, then give a
treatment. There are several NIH studies working in this space.
It is an enormously promising area of research for both people
with early onset and late onset of the disease.
I will stop there.
Senator Daines. Okay; thanks, Dr. Karlawish.
Mr. Chairman. Thank you.
Senator Toomey. Senator Brown?
Senator Brown. Thank you, Mr. Chairman. And thank you for
calling this hearing.
When I talk at home, and I live in Cleveland, about--and
first, Ms. Kovach, I have unfortunately been in and out of this
hearing because of other things, and we all have those
conflicts, but your testimony was some of the best I have heard
here, over the years, so thank you. Thanks so much.
When I talk about this at home, I often talk about how
Governor Kasich, a Republican, and I, a Democrat, worked to
implement the Affordable Care Act over time in Ohio, and he did
Medicaid expansion. Nine hundred thousand Ohioans have
insurance who did not have it prior to the Affordable Care Act;
600,000 through Medicaid expansion, and a number similar in
your State. And those of you from Pennsylvania and Michigan had
similar numbers, plus tax credits to help insurance become more
affordable; 23- and 24-year-olds staying on their parent's
plans, consumer protections for those who have preexisting
conditions.
A report just came out that 2 million Ohioans have a
preexisting condition in a State of 12 million--not much
different from the national average.
Another benefit included in the ACA is the guarantee of a
no-cost annual wellness visit for Medicare beneficiaries. This
visit includes testing for cognitive impairment. You know how
important that is.
Dr. Karlawish, in 2016 you authored an opinion piece in
Forbes, commenting on how important the ACA has been in our
collective fight against Alzheimer's. Briefly elaborate on
provisions in the ACA that have advanced the prevention and the
diagnosis and the early care of Alzheimer's patients, including
the individuals you treat at your practice, if you would.
Dr. Karlawish. Yes, for me it was sort of a moment of
revelation, which is, you think most people with Alzheimer's
disease are over 65. They have the social insurance program of
Medicare, so why would the ACA matter? Because the ACA was
about expanding coverage for health insurance, people who do
not yet have Medicare.
And then I had the realization, as I was looking at people
coming into my practice, that many of them, they are caregivers
as an adult child who is not yet qualified for Medicare. And
many of them were telling me stories about how they were
reducing their work or leaving the workforce in order to care
for their relative.
And it occurred to me that, to the extent that, for
whatever odd reason, in America health insurance is tied to
having a job, that they were sort of taking a risk of under-
insuring themselves for health care. So it suddenly occurred to
me, oh my God, the ACA is insuring my caregivers, giving them
the ability to get health insurance while they are trying to
care for their relative. Which is what I think your mother went
through when she left the workforce to take care of your
grandmother.
So that was one. And then a lot of the innovations we have
been talking about around care coordination, around improving
diagnosis, have been made possible by the Center for Medicare
and Medicaid Innovation, or CMMI. And CMMI was created by the
Affordable Care Act.
And so when I hear about, you know, removing the Affordable
Care Act, every word and whatnot, I am like, I do not want to
see CMMI go because it has been sort of an engine for
innovation in development and delivery of Medicare services.
And then finally, as you point out, the Medicare annual
wellness visit kind of put on the map for medicine the need to
pay attention to and take seriously cognitive impairment, just
as you take seriously hearing impairment, weight loss, visual
loss, et cetera.
And so again, while it was sort of an act to give health
insurance to people who were not yet qualified for Medicare, it
suddenly occurred to me that this act is actually incredibly
important for taking care of patients with Alzheimer's disease.
Senator Brown. Thank you for that. In my State, 200,000
people are battling this disease, roughly 200,000 or more than
that. And there are still efforts--as you know, the President
tried and Congress failed by one vote to repeal the Affordable
Care Act. And now he is in court in Texas, and it will get to
the Supreme Court, to wipe those benefits away. And you know
what that would mean.
Ms. Kovach, in the last minute or so--thanks for being
here. I wanted to share a note from Ellen Gerber of Cincinnati.
She wrote me about her mom diagnosed with dementia 6 years ago.
She said, ``I've been supporting my mom's care for almost 6
years. I had to quit a career long before I would have left the
workforce. I was not ready to retire. My mom now is 95. There
is nothing else wrong with her other than her dementia. She
will be needing my support and care for many more years. My
greatest fear is she will get to the stage where she does not
recognize us.''
You talked about the long good-bye. She does too.
Alzheimer's and dementia is called ``the long good-bye.'' So as
a Baby Boomer, my fear is that this is my future.
How can Congress better support families like yours and Ms.
Gerber's?
Ms. Kovach. So my mom definitely did not want to retire;
she had to retire. And the first year after my chupe got out of
the hospital, that year mom did continue working and we took
12-hour shifts every single day for a year. And mom just looked
at me and said, ``Don't work. We'll figure it out, but don't
work. Let's get her back on track.''
There were situations where, because I am the
granddaughter, even though I had shared the same legal address
as her for probably about 5 years and I was one of her two
full-time caregivers, I could not get FMLA because I was not a
spouse, I was not a parent, I was not a child.
So I know other States are starting to work on it. If we
had a family paid leave, that greatly would have benefited my
mom and me because we both wanted to work, but we had to deal
with this.
And if there would have been kind of a middle balance, it
probably could have relieved a lot of our stress too.
Senator Brown. Thank you for sharing how much you love your
mom and your grandmother. I was in Laconia, NH about a year or
several months ago, and a woman said to me, a long-time child
care worker who had probably done it for 40 years, she said
child care in this country should be a public good, similar to
parks and public education. And she was extending that
generally to caregiving, what many, many, many countries,
almost every rich country in the world does in terms of
children, in terms of family leave for any host of reasons. And
that just speaks to that.
So thank you so much to all of you.
Senator Toomey. I want to thank all of our witnesses. This
was very, very informative and very helpful. I should point out
for those of you who may not be aware, but a subcommittee
hearing very seldom gets as many members of the Senate as this
one did today, which I think speaks to the interest and the
concern that members have about this topic, and also to the
real value of the testimony that you were all able to provide.
So I really, really thank you for that. I do think there is
a lot that we can do that could very well be bipartisan that
would help deal with this incredible challenge that we face.
And we will need your help and guidance along the way.
Members will have 2 weeks to submit written questions that
can be answered later in writing. Those questions and your
answers will be made part of the formal hearing.
And with that, this subcommittee hearing stands adjourned.
[Whereupon, at 3:58 p.m., the hearing was concluded.]
A P P E N D I X
Additional Material Submitted for the Record
----------
Prepared Statement of Marc A. Cohen, Ph.D., Clinical Professor of
Gerontology, McCormack Graduate School, and Co-Director, LeadingAge
LTSS Center, University of Massachusetts Boston; and Research Director,
Center for Consumer Engagement in Health Innovation, Community Catalyst
introduction
Thank you, Chairman Toomey, Ranking Member Stabenow, and members of
the subcommittee. I am Marc Cohen, a clinical professor at the
McCormack Graduate School at UMass Boston, the co-director of the
LeadingAge LTSS Center at UMass Boston, and the research director at
the Center for Consumer Engagement in Health Innovation at Community
Catalyst, in Boston. I am also a former founder and president of
LifePlans, Inc., a Boston-based long-term care research, consulting,
and risk management company.
I appreciate the opportunity to testify on this panel. While
Alzheimer's and related dementias represent among the most costly long-
term care liabilities--costing the Nation over $290 billion,\1\ of
which out-of-pocket costs will total $62 billion or 22 percent of the
total--individuals with functional impairments also face significant
financial exposure.\2\ In fact, the total cost of providing long-term
care services and supports (LTSS) to the current cohort of individuals
age 65 and over--including a valuation of care provided by family
members--will exceed $6.3 trillion. Slightly less than half of these
costs will be incurred over the next decade alone.
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\1\ https://www.alz.org/media/Documents/alzheimers-facts-and-
figures-infographic-2019.pdf.
\2\ https://www.alz.org/media/Documents/alzheimers-facts-and-
figures-2019-r.pdf.
These staggering national costs are driven by a large and rapidly
growing population in need, extended life expectancies (even among
those with impairments) and high costs of care. With median annual
nursing home costs totaling $92,000 \3\ and home care costing as much
as $46,000 per year, long-term care represents the single largest
financial risk faced by older adults and their families. The share of
the population that will have to purchase care and pay out-of-pocket
can expect to spend up to $140,000 (2015 dollars); public payers like
Medicaid will have to pick up another roughly $120,000. Thus, the total
average public and private costs for those who need and have to
purchase care exceeds $250,000 \4\ per person.
---------------------------------------------------------------------------
\3\ https://www.genworth.com/dam/Americas/US/PDFs/Consumer/
corporate/131168_050516
.pdf.
\4\ https://aspe.hhs.gov/basic-report/long-term-services-and-
supports-older-americans-risks-and-financing-research-brief.
In my testimony today, I will draw upon my more than 30 years of
research on how the growth, development, and revitalization of the
private long-term care insurance market could help in this effort. I
say ``help'' because my own view is that this challenge is far too
great for any one sector--public or private--to handle on its own. Both
sectors will have an important role to play. My research over the years
has been supported by the Department of Health and Human Services, the
SCAN Foundation, America's Health Insurance Plans, the Robert Wood
---------------------------------------------------------------------------
Johnson Foundation, AARP, and the National Council on Aging (NCOA).
I would like to make a number of broad points today about the
current market context and how to improve the affordability and
accessibility of private long-term care insurance.
First, the challenge of LTC financing will only grow in the years
ahead and the nature of the LTC risk--which is unpredictable, highly
skewed, and potentially catastrophic--makes this liability perfectly
suitable for risk pooling through insurance. We have an opportunity to
move our financing system for middle class Americans away from a
``private-pay safety-net based impoverishment model'' toward an
insurance-based approach. Private insurance can play its part in
helping us move toward this goal.
Second, making private insurance more accessible is not only a
question of its affordability, but also of its overall attractiveness
and appeal to consumers. There are many reasons \5\ why the private
market has underperformed. A multi-pronged approach designed to lower
the costs of the insurance and increase its attractiveness is needed.
More specifically, a combination of actions designed to influence both
demand and supply problems can lead to further growth in the market and
help assure that private insurance plays a more meaningful role in
financing care.
---------------------------------------------------------------------------
\5\ https://aspe.hhs.gov/system/files/pdf/177866/MrktExit.pdf.
Finally, even in the context of market improvements, voluntary
private LTC insurance is likely to represent only a modest piece of the
solution to the financing challenge facing the country. Indeed, while
my focus today is on the private market, I want to point out that there
are efforts across the States aimed at developing public insurance
approaches that provide interesting and unique opportunities to test
new models for private and public insurance to work together. As I will
explain below, public insurance models could very well spur growth in
the private market, as sectoral roles become better defined and enable
citizens to plan appropriately.
background market challenge
Let me begin by making the observation that Americans are
unprepared to absorb potential LTSS costs and roughly 70 percent of
people retiring at age 65 will have some level of LTSS need. As well,
50 percent \6\ will have a significant need requiring help with more
than two functional limitations or with dementia-related issues and
nearly one in six \7\ need care for more than 5 years and incur more
than $250,000 in expenses. Many of these individuals will have
Alzheimer's or related dementias and thus face a particularly large
financial challenge as well as family challenge. This is because they
tend to require care for many years and most LTSS support is provided
or supplemented by family \8\ and friends. This is a greater problem
today due to smaller family size, the increasing employment of both
spouses, the mobility of adult children, and strains faced by
``sandwich generation''\9\ caregivers. These are all trends that
portend less available family care in the future, even as the demand
for care grows. Between 2015 and 2050, the ratio of potential
caregivers to the population age 80 and over will decline from seven to
one to only three to one.\10\ And, this does not even account for the
additional demand for care presented by the roughly 40 percent \11\ of
those who have LTSS needs that are under age 65.
---------------------------------------------------------------------------
\6\ https://aspe.hhs.gov/basic-report/long-term-services-and-
supports-older-americans-risks-and-financing-research-brief.
\7\ https://www.thescanfoundation.org/sites/default/files/
financing_long-term_care_chartpack_
092016_final.pptx.
\8\ https://www.aarp.org/ppi/info-2015/valuing-the-invaluable-2015-
update.html.
\9\ https://www.pewsocialtrends.org/2013/01/30/the-sandwich-
generation/.
\10\ https://www.aarp.org/content/dam/aarp/ppi/2018/08/across-the-
states-profiles-of-long-term-services-and-supports-full-report.pdf.
\11\ https://www.aarp.org/content/dam/aarp/ppi/2017-01/
Fact%20Sheet%20Long-Term%20
Support%20and%20Services.pdf.
Most middle-income Americans are not poor enough to immediately
qualify for Medicaid-financed care, which makes them completely exposed
to high out of pocket costs. It is important to note that roughly half
of Americans age 65 to 74 have no retirement \12\ savings at all to
deal with this risk. Medicaid \13\ covers care in nursing homes and
pays for home and community-based care, but requires individuals to
first ``spend down'' much of their savings in order to be deemed
eligible to receive these benefits. Thus, while it ensures access to a
level of care after paying an ``infinite deductible,'' it does not
insure against high or catastrophic costs. Moreover, due to budget
constraints, even eligible individuals cannot always access \14\ needed
care when they need it, but instead are placed on waiting lists.\15\
Finally LTSS is approaching 30 percent to 45 percent of State Medicaid
budgets \16\ and growing rapidly, putting pressure on States and in
some cases, crowding out other critical policy priorities.
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\12\ https://www.gao.gov/assets/680/670153.pdf.
\13\ https://www.kff.org/medicaid/report/medicaid-and-long-term-
services-and-supports-a-primer/.
\14\ https://www.kff.org/medicaid/report/medicaid-home-and-
community-based-services-programs-2012-data-update/.
\15\ https://aspe.hhs.gov/basic-report/impacts-waiting-periods-
home-and-community-based-services-consumers-and-medicaid-long-term-
care-costs-iowa.
\16\ https://www.medicaid.gov/medicaid/ltss/downloads/reports-and-
evaluations/ltssexpend
itures2016.pdf.
Because of limited market penetration, stand-alone private long-
term care insurance--which typically provides access to a ``pool of
dollars'' which can be spent in a variety of institutional, home and
community-based care settings--has played only a modest role in paying
for care. It pays well less than 10 percent \17\ of the Nation's LTSS
bill. Today roughly seven million Americans have policies, which are
paying benefits to roughly 300,000 individuals.\18\ And the cost of
policies has been rising. A 60 year old purchasing a policy in 2015
spent roughly $2,700 in annual premiums for a policy--an increase of 42
percent \19\ over the prior decade. Thus, such premium levels are now
out of the financial reach of most middle-class Americans; less than
one-third \20\ of new buyers are drawn from the broad middle class,
that is, those drawn from the middle third of the income distribution.
---------------------------------------------------------------------------
\17\ https://www.healthaffairs.org/doi/full/10.1377/
hlthaff.2015.1226#B4.
\18\ https://naic.org/prod_serv/LTC-LR-18.pdf.
\19\ https://www.ahip.org/wp-content/uploads/2017/01/
LifePlans_LTC_2016_1.5.17.pdf.
\20\ https://www.treasury.gov/initiatives/fio/Documents/
FACIFebruary2018_UMass.pdf.
But, affordability is not the only challenge. Confusion \21\ about
public and private roles in paying for costs, myopia, mistrust of the
insurance industry, adverse selection and high selling costs have all
contributed to declining sales of private policies. In 2018, fewer than
60,000 individual policies were sold in the United States compared to
an average annual sales of roughly 500,000 policies at the turn of the
century. A positive trend, however, is that the decline in the sale of
individual policies has also been accompanied by growth in combination
or ``hybrid policies''\22\ that add long-term care coverage to other
forms of insurance or financial product like riders to life insurance
or additional LTSS coverage on annuity products. These policies have
the attractive feature of paying out benefits to policy-holders even if
they never need to access the long-term care benefit. Currently there
are roughly 750,000 \23\ such policies in-force and the market has
shown significant growth over the last 8 years. Like stand-alone
policies, however, these products also appear to be attracting
primarily upper income individuals so that here too, there are
affordability challenges for most middle-class Americans. Thus, those
who cannot rely on the social safety net when they face significant
LTSS costs, nor have enough income or assets to purchase care, also do
not have an accessible insurance option available to them. They
therefore face the risk of severe financial stress, often have to rely
extensively on family members to provide care, or their care needs are
not met.
---------------------------------------------------------------------------
\21\ https://www.thescanfoundation.org/publications/making-
progress-expanding-risk-protection-for-long-term-services-and-supports-
through-private-long-term-care-insurance/.
\22\ https://www.limra.com/en/newsroom/news-releases/2019/
individual-life-insurance-combination-product-premium-falls-2-in-2018/.
\23\ https://naic.org/prod_serv/LTC-LR-18.pdf.
While cost is the largest barrier to purchase, I want to draw your
attention to other challenges associated with expanding the market that
have resulted in ``too little'' insurance. On the demand side,
consumers misperceive \24\ their own risks of needing LTSS, they
underestimate the costs of those services and they do not understand
the degree to which existing programs do or do not offer coverage
against those risks.\25\ Additionally, some may prefer to rely on
Medicaid-financed care. For people who tend not to perceive there is a
problem, private insurance does not seem like a reasonable option, even
if they had the money to pay for it.
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\24\ https://www.ahip.org/wp-content/uploads/2017/01/
LifePlans_LTC_2016_1.5.17.pdf.
\25\ In a national survey conducted in the summer of 2019 with
adults ages 18+, over 70 percent of respondents felt it was not very
likely or not at all likely they would ever need long-term care in a
facility (nursing home or assisted living) and two-thirds felt they
would not likely need care at home. In the same survey, one-third of
adults admit they do not know how LTC costs are paid for, while 42
percent believe that their health insurance, Medicare, or Medicare
supplemental coverage pays for long-term care. ``Directive Analytics
Omnibus Study,'' conducted for ET Consulting, summer 2019.
Second, decision-making around private long-term care insurance can
be complicated. People have difficulty considering the future
implications of today's choices--especially when they are uncertain and
unpleasant. When considering current products, consumers need to make
decisions about future levels of daily coverage, how long such coverage
should last, the amount of inflation protection, the size of the
deductible and so on. Confusion about the product as well as overall
cost has also contributed to lack of demand. As well, voluntary private
insurance requires underwriting, which excludes \26\ many individuals
from coverage. Moreover, large and unexpected premium increases for
products has made some consumers mistrustful of insurers and wary of
making purchase decision that are costly to reverse.
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\26\ https://www.healthaffairs.org/doi/10.1377/hlthaff.2015.1133.
Finally, people who believe that they can pay for some care, but
are afraid of the catastrophic risk, can no longer purchase policies
that cover the ``tail risk'' because almost all policies now place
limits on the duration of coverage and companies do not sell unlimited
coverage \27\ policies. Insurance companies have been unsuccessful at
pricing products to insure this ``tail risk'' or uncapped liability, in
part due to concerns about adverse selection.
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\27\ https://www.ahip.org/who-buys-long-term-care-insurance/.
On the supply side, given the lack of knowledge and understanding
among the general public, it is not surprising that selling costs are
typically high. Second, insurers face a variety of unpredictable
phenomena that affect the pricing of policies such as risks associated
with inflation rates, interest rates, people's behavior regarding their
desire to maintain the insurance, and changes in mortality and
disability. These are not easy parameters to predict 30 years into the
future. Many of these risks are hard to spread because they are common
to the whole population--insurers have had to deal with this by de-
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risking the product and also charging larger risk premiums.
Because of the fact that all major determinants of pricing and
profitability have gone in the wrong direction over the past two
decades, there has been a major exodus of companies from the market, as
returns on the product have been significantly below expectations. In
the year 2000, a more than 100 companies were selling LTC insurance to
consumers; currently, less than 20 companies are selling a meaningful
number of stand-alone policies. Put simply, the market is shrinking
rather than growing, and this at a time when more Americans are facing
long-term care risks and costs.
This is occurring even as a growing number of people are benefiting
from their policies as claimants. In 2017, nearly 81,000 \28\ new
claims opened and the claim reserves that have been set aside for each
claim to cover expected liabilities is over $100,000. Research \29\
suggests that people who receive benefits from their policies are very
satisfied, with half saying that in the absence of their policy they
would receive less care, 60 percent saying they would have to rely more
on their families for help, and upwards of 90 percent indicating that
the insurance benefits are helping them meet their current care needs.
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\28\ https://naic.org/prod_serv/LTC-LR-18.pdf.
\29\ https://www.ahip.org/experience-satisfaction-levels-of-ltc-
customers/.
The underdevelopment and growing unaffordability of private
insurance, and the absence of public insurance presents a fundamental
problem: people have no way to plan effectively for what is actually a
perfectly insurable risk. Their current options are inefficient,
unattractive or both. If people rely on savings, they will likely save
too little or too much, since they cannot easily predict whether they
will face catastrophic LTSS burdens. If they rely on Medicaid, they
must first expend significant personal resources, and only then qualify
for coverage that in many places still limits the availability of in-
home care. Even when people have budgeted carefully through their
working lives, they can still end up impoverished, because they receive
little or no help if they need significant amounts of care.
enhancing affordability and demand
Since current strategies have not worked well in assuring broad
consumer appeal and insurer enthusiasm, what can be done? To increase
accessibility, efforts could be focused on lowering the net cost of the
product through targeted subsidization, reducing selling costs and
considering changes to product pricing approaches to make them less
costly, and enhancing the value proposition to consumers so that
peoples' ``tastes'' for insurance change and products are more
attractive. A benefit of accomplishing these goals would be to induce
companies to reconsider the market and potentially reenter and provide
more affordable products.
Premium Cost Reduction
Affordability of policies has been viewed as one of the biggest
barriers to greater penetration among middle income individuals.
Changes to the underlying funding structure of products could lead to
lower cost policies. Currently, products are level-funded, but they
could be priced on a ``term-basis,''\30\ much like life insurance, and
as part of the structure, gradually add in a pre-funded amount to
become level-
funded at say, age 65 or 70. This would necessitate clear consumer
disclosures and protections, but this approach does have the virtue of
making policies more affordable at younger ages when competing demands
on resources are greatest. Having the premium become level when people
are done working and more likely to be on fixed incomes also helps
assure that policies will remain affordable at the time that they are
needed most.
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\30\ https://www.soa.org/globalassets/assets/Library/Newsletters/
Long-Term-Care/2013/january/ltc-2013-iss33.pdf.
A related approach involves indexing both premiums and benefits to
account for increases in the cost of services. Such an approach could
be tied to actual changes in the cost of long-term care. This method
has the virtue of reducing the uncertainty around the inflation risk,
as well as lowering initial premiums, and makes the product more
affordable for consumers. It also reduces the level of initial reserves
that must be set up by the company, which in turn eases the amount of
capital required to support the product. In addition, there is evidence
that requiring a 5 percent annual benefit increase (such as had been
done for early Partnership Policies) leads to over-insurance; that is,
benefits in these policies are growing much more quickly than the costs
of care. For that reason, providing greater flexibility regarding the
level of indexing to be offered could lead to lower priced products
that still protect consumers by assuring benefits keep pace with
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inflation in long-term care costs.
Should policymakers decide to invest resources to subsidize the
purchase of private policies, an approach that could increase sales
would be to provide targeted middle-class tax benefits to people who
would otherwise not be able to purchase policies. Strategies could
include direct targeted tax subsidies or also a reshaping of benefits
like inclusion of LTC insurance in cafeteria plans and FSAs, treating
premiums as qualified 401(k) expenses, that is, no early withdrawal
penalties and no income tax on withdrawn monies spent on LTC insurance
premiums. Given the change in the nature of the products on the market,
the premium associated with the long-term care coverage on combination
products would also need to be subject to such treatment.
The reshaping of benefits must also recognize that many people do
not participate in such savings plans--roughly 55 percent \31\ of
employees have a workforce retirement plan--and this is also evidenced
by the fact that median value of household liquid assets for 80 percent
of the household population age 50 and over is less than $100,000.\32\
Thus, for tax benefits to be effective, they need be targeted correctly
to the sub-set of individuals with such savings plans who could not
otherwise afford policies and the benefit would have to be high enough
to induce purchase. Prior studies \33\ of State-based tax incentives
showed very little impact, in large part because the value of the tax
benefit was so small.
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\31\ https://www.pensioninsights.org/publications/statistics.
\32\ Author's analysis of the 2016 Health and Retirement Survey.
Financial assets consist of retirement plans (IRA, Keogh accounts),
stocks, mutual funds, investment trusts, checking, savings, money
market accounts, government savings bonds, T-bills, bonds, bond fund
other savings.
\33\ https://pubmed.ncbi.nlm.nih.gov/19938726/.
As well, current Federal tax incentives have little to no effect on
insurance rate take-up among the middle class because of changes
brought about by the Tax Cuts and Jobs Act,\34\ which dramatically
increased the standard deduction. The main way taxpayers receive
Federal tax benefits for long-term care insurance is by taking an
itemized deduction for medical expenses, which can include private
long-term care insurance premiums. The Joint Committee on Taxation
estimated that the number of filers who itemize will fall from 46.5
million in 2017 to just over 18 million \35\ in 2018, meaning that
about 88 percent of the 150 million households that file taxes will
take the increased standard deduction.
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\34\ https://www.congress.gov/115/bills/hr1/BILLS-115hr1enr.pdf.
\35\ https://taxfoundation.org/90-percent-taxpayers-projected-tcja-
expanded-standard-deduc
tion/.
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Reducing Selling Costs
The high selling costs of policies is often cited an important cost
challenge so finding new ways to distribute the product is important.
For example, the insurance could be made available as part of other
health-care \36\ offerings. Moreover, in addition to the special
supplemental benefits available to the chronically ill allowed under
the Chronic Care Act,\37\ greater coverage for LTSS could be permitted
to become part of a Medicare Advantage (MA) offering. As well a
``forced choice'' of a modest option at the time of enrollment to
either traditional Medicare or to an MA plan would increase exposure to
the insurance. It could also be offered with one or more of the
approved Medigap insurance plans currently selling on the market. These
options would assist individuals who have put off making their planning
choices before retirement, and would help support lower marketing cost
policies.
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\36\ https://www.thescanfoundation.org/publications/making-
progress-expanding-risk-protection-for-long-term-services-and-supports-
through-private-long-term-care-insurance/.
\37\ https://www.cms.gov/Medicare/Health-Plans/HealthPlansGenInfo/
Downloads/Supplemental_Benefits_Chronically_Ill_HPMS_042419.pdf.
The insurance exchanges could also provide individuals with the
opportunity to examine and purchase private LTC insurance. Finally, it
is worthwhile to consider requiring employers to offer coverage as an
optional benefit to employees; the plans could be set up so that
employees must opt out and the expenses associated with setting up such
a plan would be recognized as expenses. Alternatively, employers could
be required to provide education and information on private LTC
insurance as part of the standard employee benefits package.
Enhancing Consumer Confidence, Knowledge, and Changing the Value
Proposition
One of the issues that has led consumers to lose confidence in the
industry, has been the significant rate increases that have occurred
over the last decade. These increases \38\ have resulted due to a
variety of factors--some of them within the control of the insurance
company and some of them outside that control. Either way, it is clear
that for consumers to feel comfortable with the product, they need to
have a sense that they know what they will be paying for it over the
long-term. This presents a difficult challenge to insurers, yet some of
the recommendations regarding product structure discussed above can be
helpful.
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\38\ https://naic.org/documents/
cipr_current_study_160519_ltc_insurance.pdf.
An additional and innovative approach taken by LTC Partners--the
administrator of the Federal Long-Term Care Insurance Program
(FLTCIP)--is to build in rate stability through product design. Their
new plan includes a ``premium stabilization feature'' \39\ (PSF). The
feature is designed to reduce the need for future premium increases by
building into the base premium some additional protection. This
protection can be used to offset an enrollee's future premium payments
under specific conditions or it will provide a refund of a premium
death benefit. In some sense, like the life-LTC or life-annuity
combination products, this assures that individuals are likely to
receive some financial benefit from their policy or have complete rate
stability during the life of the policy. It does, however, cost more
than policies that do not have this feature. The company is betting on
the fact that consumers are willing to trade off a somewhat higher
premium for the premium stability and/or death benefit.
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\39\ https://federalnewsnetwork.com/benefits/2019/10/opm-announces-
new-long-term-care-insurance-plan-option/.
There is a need for a major targeted public education campaign to
eliminate confusion about risk, who pays for services,
misunderstandings about product coverages, and others. The campaign
could target people beginning at age 40 and could accompany
communications about social security benefits with warnings regarding
the consequences of ignoring the LTSS risk and the availability of
products to cover risks. To date, efforts at education have fallen
short, as witnessed by the continued misunderstandings about what the
public sector does and does not pay for and about the potential
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liability facing individuals as they age.
Even with the actions that I have discussed thus far, it is clear
to me that without an expanded Federal and/or State role--specifically,
the development of some level of public insurance--the needle is still
not likely to move enough to protect the majority of middle-class
Americans. Because Medicaid is the largest LTSS public payer and States
pay roughly half the costs, they feel the pain most acutely. It is
therefore not surprising that a number of States are actively exploring
and/or developing State-based \40\ social insurance initiatives or
other strategies for addressing the problem. They have concluded that
the costs of waiting are becoming higher than the costs of taking
action.
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\40\ https://www.questia.com/library/journal/1P4-2235646795/the-
states-can-t-wait-the-long-term-care-financing.
For example, Washington State\41\ passed the Nation's first long-
term care social insurance program--the Long-Term Care Trust Act--which
provides a benefit that pays up to $100 a day for about one year
($36,000) for a qualifying individual. Given the total risk faced by
individuals, this public program leaves a great deal of room for the
private insurance market to expand by supplementing or wrapping around
the States coverage. Private policies could top off the public benefits
and/or pay additional benefits when the public insurance benefits are
used up. This would have the effect of making private policies far more
affordable--as they would be covering less risk--and it could also make
it easier to sell private insurance in the context of the public
program. An important requirement would be to assure that eligibility
criteria for the public and private insurance coverage is in sync so
that consumers can be assured of continuity in coverage.
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\41\ https://www.agingwashington.org/files/2019/02/2019-Long-Term-
Care-Trust-Act-Factsheet.pdf.
As well, one program design gaining some traction among
researchers,\42\ policymakers,\43\ and stakeholders \44\ is the
establishment of a public program to cover catastrophic or ``back-end''
LTSS costs alongside steps to encourage private insurance take-up rates
to protect against ``up-front'' risks. The intent with this design is
twofold: first, to target publicly-financed benefits to expenses that
exceed amounts that middle-income (along with higher-income) people can
reasonably be expected to manage--either with private insurance or
personal resources; and second, to enhance the attractiveness and
purchase of the limited coverage private insurance products that
insurers prefer, by positioning them as gap fillers that, in
combination with public insurance, facilitate relatively comprehensive
protection against LTSS costs. Again, this will likely have the effect
of reducing selling costs for private insurance, as the lines between
public and private responsibility will be clearly delineated. The
Society of Actuaries is currently funding a study of how a catastrophic
State-based plan might impact both the private market and Medicaid
savings using the State of Minnesota as the trial case for study.
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\42\ https://bipartisanpolicy.org/wp-content/uploads/2018/01/
Public-Catastrophic-Insurance-Paper-for-Bipartisan-Policy-Center-1-25-
2018.pdf.
\43\ https://pallone.house.gov/media/press-releases/pallone-
unveils-proposal-medicare-long-term-care-benefit.
\44\ https://www.convergencepolicy.org/wp-content/uploads/2016/02/
LTCFC-FINAL-REPORT-Feb-2016.pdf.
The hope is that in the context of a public program that pays for
catastrophic costs, private insurance will become more affordable,
people's ``tastes'' for insurance will change, the confusion that is in
part encumbering market growth will diminish, and more companies will
enter the market to provide new products to cover front-end risk. An
analogous situation arose after the Federal government began insuring
acute care costs through the Medicare program. In 2016, 30 percent \45\
of Medicare beneficiaries, about 9 million people, had Medicare
Supplement policies sold by private insurance companies that fully or
partially cover Part A and Part B cost-sharing requirements, including
deductibles, copayments, and coinsurance.
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\45\ https://www.kff.org/medicare/issue-brief/sources-of-
supplemental-coverage-among-medicare-beneficiaries-in-2016/.
Experience from other industrialized countries \46\ suggest that
private insurance products almost always fill important coverage gaps
in the presence of publicly funded programs, the latter \47\ almost
never insuring 100 percent of the risk. Most importantly, there would
be a clear delineation of public and private sector roles. This should
enable consumers to make informed decisions about the risk they are
responsible for and it should also make the market environment
attractive enough to encourage greater carrier participation. Such a
market would be characterized by more affordable and accessible
insurance, greater consumer knowledge and understanding, and a shared
role for covering this major uncovered risk.
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\46\ http://www.oecd.org/els/health-systems/47884985.pdf.
\47\ https://www.milbank.org/quarterly/articles/long-term-care-
financing-lessons-from-france/.
In closing, there are many ways that we can make private insurance
more accessible and affordable and the solutions that are put forward
need to reflect the magnitude of the problem that we face. While all of
the specific steps that I have discussed are helpful, and worthy of
consideration, a joint public-private approach is most likely to move
the needle and make a difference for middle class people. Clearly,
those families who will face the difficult issue of paying for
Alzheimer's or related dementias would benefit the most from being
insured when such an event happens, and we should keep them in mind
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when we consider steps to improve the market.
I appreciate the opportunity to testify about these important
issues and I would be happy to answer any questions that the committee
might have.
______
Questions Submitted for the Record to Marc A. Cohen, Ph.D.
Questions Submitted by Hon. Tim Scott
Question. There are currently 92,000 South Carolinians living with
Alzheimer's disease, and by 2025, there may be as many as 120,000.
Alzheimer's ranks as the sixth leading cause of death in our State and
imposes substantial and burdensome costs on many of South Carolina's
seniors, along with their families and other caregivers. As our
population continues to age, long-term care will become all the more
important in meeting the needs of those living with Alzheimer's or
other dementias. Roughly 70 percent of Americans aged 65 and older will
need long-term care at some point in their lives, and more than two and
every five seniors aged 85 and older have Alzheimer's. Dr. Cohen, as
you note in your testimony, ``[T]he challenge of LTC financing will
only grow in the years ahead.'' You also point out that the nature of
LTC risk ``makes this liability perfectly suitable for risk pooling
through insurance.'' I agree with your conclusion that private
insurance should ``[play] a more meaningful role in financing care.''
As you mentioned in your testimony, and as Senator Toomey has
proposed, I see allowing for tax-and penalty-free distributions from
401(k)s to fund LTCI or hybrid product premiums as a wise step forward
in making coverage more affordable and accessible. What other concrete
and targeted steps could Federal policymakers take to enhance the
private LTCI market and the growing hybrid product market?
Answer. Indeed, allowing for tax- and penalty-free distributions
from 401(k)s to fund LTCI or hybrid product premiums would make
coverage more affordable and accessible for those who have such savings
vehicles. There are a number of additional strategies that could be
taken to make the insurance--whether the stand-alone or hybrid
products--more affordable and accessible. In line with tax advantaged
401(k)s, the creation of LTC savings accounts similar to Health Savings
Accounts (HSAs) along with making current HSAs flexible to enable long-
term care premiums and expenses to be treated as allowable expenses
would lower the net cost of insurance for those who have such accounts.
This could encourage individuals to participate in such accounts,
especially as knowledge among the working population regarding the
long-term care risk becomes better understand. For these to work, the
requirement that they be conditioned on having a high deductible health
plan would need to be waived since such plans do not cover long-term
care expenses. Second, current tax incentives that are conditioned on
individuals itemizing deductions and having to pay in excess of 7.5
percent to 10 percent of adjusted gross income each year are
ineffectual. Targeted tax-subsidies to lower and middle class
individuals who in the absence of such subsidies would not be able to
afford insurance is another way to lower the net cost of insurance and
increase take-up rates.
Such income-based subsidies could target the population most
exposed to impoverishing themselves and spending down to Medicaid
eligibility should they have a significant long-term care need. To that
end, the Federal government may consider a full Federal tax deduction
for long-term care insurance premiums for such individuals. As well,
allowing the purchase of this insurance within the context of a
cafeteria plan or from an FSA would also likely encourage take-up rates
among the working age population, which typically face lower premiums
than individuals who are looking to buy the insurance in their late 50s
or 60s.
Question. Are there regulatory barriers at the Federal level that
constrain or inhibit private LTCI or hybrid product market growth? What
steps could be taken to mitigate or eliminate these barriers?
Answer. There are a number of barriers that if removed could have a
positive effect on the market. The requirement that insurers offer 5-
percent compound inflation protection with stand-alone LTC insurance
policies and the requirement that purchasers of Partnership policies
who are under age 75 must accept inflation protection for the policy to
be tax-qualified, is not as consumer-friendly as it might seem. First,
there is ample evidence given the increase in long-term care costs over
the last 20 years that this is an excessive amount of benefit indexing.
Long-term care costs have not generally risen at 5 percent per year and
insuring for this amount of protection is quite costly and in fact
leads to over-insurance for those who buy it. Insurers are only
required to ``offer'' the inflation protection, and consumers have the
right to refuse it. However, offering this level of protection does
change the choice architecture for consumers and can lead people to
believe that unless they purchase this amount, the policy does not hold
value. As well, given the variability of long-term care costs across
the States, as well as the local underlying factors leading to changes
in costs, it makes more sense for States to determine the percentage of
inflation protection that should be offered to consumers. The
requirement that insurers offer inflation to consumers should remain,
but there should be greater flexibility regarding the level of the
offer and the structure of the mechanism designed to assure that
benefits keep pace with changes in costs. It should be noted that most
individuals purchasing long-term care insurance do not expect their
policy to pay for all costs, and therefore, some level of co-insurance
is expected among buyers (AHIP, 2010). The implication is that greater
flexibility regarding inflation protection is in line with consumer
preferences.
Second, for the most part long-term care insurance is regulated by
the States and the National Association of Insurance Commissioners
(NAIC) has developed and updated model regulations for long-term care
insurance. In some cases there is not alignment between Federal law and
NAIC models like the Health Insurance Portability and Accountability
Act (HIPAA) and the Deficit Reduction Act (DRA). The reason is because
the language in these two acts is not in sync with updated versions of
the NAIC model and they refer to older models that are outdated. To
avoid this, Federal law should reference and require compliance with
the most current version of the NAIC model for new policies that are
being sold on the market.
Finally, there are a variety of new product designs that are being
considered and others that are being marketed to consumers that are
constrained by Federal requirements unrelated to consumer protection.
For example carriers are looking to develop and market flexible premium
structures (e.g., term premium pricing up to a maximum age) and adding
cash value to policies in forms other than return of premium.
Currently, HIPAA prohibits tax qualified stand-alone policies from
containing a cash value feature. This means that individuals with
stand-alone policies either receive benefits if and when they have a
long-term care need, or they pay premiums and do not receive benefits
because they do not need them. Given that roughly 50 percent of
individuals over age 65 are not expected to have a significant long-
term care need, many people who would consider the insurance may be
reluctant to buy it if they perceive that they will not receive any
financial benefit from doing so. If some level of cash value in stand-
alone policies was allowed in the context of HIPAA and DRA, this could
make policies much more attractive to individuals and lead to greater
market penetration.
As well, making legislative changes that would allow ``lifespan''
products to emerge could also help boost the market. For example,
insurance products like life, disability, and others are typically most
relevant during one's working years. However, if these products could
then convert into long-term care coverage at older ages, when these
other coverages are less needed, that would change the ``choice-
architecture'' in an important way. Rather than having to purchase a
policy as one nears retirement, one could ``opt out'' of a policy that
was converting to long-term care coverage. Research suggests that an
opt-out approach, where one is already conditioned to paying premiums
over a long period of time, could lead to meaningful market expansions.
Legislative changes related to Federal tax treatment that would
specifically allow such products would be needed to encourage growth in
such plans.
Question. What impact would a broader private LTC and combination
product market have on Medicaid's long-term fiscal outlook?
Answer. The key to assuring that broader stand-alone long-term care
insurance and combination products improve Medicaid's fiscal outlook is
that market expansion occur among the lower and middle class
population. These are the people who either spend-down to Medicaid when
they have a significant need or are immediately eligible for Medicaid.
To the extent that policies are designed to be both attractive and
accessible (i.e., affordable) to such individuals, the impacts on
Medicaid long-term care expenditures can be significant. If, however,
market expansion occurs among individuals who are unlikely to spend
down to Medicaid even in the presence of significant long-term care
need, then the impacts of Medicaid will be negligible. In short, market
expansion to the broad middle class could have a major impact on
slowing the growth in Medicaid LTSS expenditures and the social safety-
net would be left to serve primarily those who have no private
alternatives under almost any condition due to their low wealth status.
Question. In outlining one of the barriers to more robust private-
sector participation, you cite affordability challenges, asserting that
current premium levels are ``now out of the financial reach of most
middle-class Americans,'' offering as an example the average annual
premium for a 60-year-old purchasing a policy in 2015. It is worth
noting, however, that purchasing age significantly impacts LTCI
premiums.
Given that a 45-year-old who purchases an LTCI policy will likely
pay around half of what a 60-year-old purchaser of such a policy might
pay, what steps can Federal and State governmental entities, as well as
private-sector stakeholders, take to educate Americans about the impact
of purchasing age on premium costs and to encourage the public to
purchase these products at an earlier age to avoid exposure to higher
premiums?
Answer. This is a critically important issue and must be addressed
in the context of other actions designed to make the insurance more
affordable. There is ample evidence that people (1) underestimate their
future risk for needing care; (2) underestimate the costs of long-term
care; and (3) believe that they are already covered for care--through
Medicare or their private health insurance--should the need arise.
Thus, it is no surprise that few people insure against this risk since
they grossly underestimate it and the perceived value of the insurance
compared to its cost, is very low. In short, the value proposition
needs to change in order for younger individuals to even consider
purchase, especially when there are so many competing demands on their
resources (e.g., housing, day care, saving for children's college, and
retirement savings accumulation.) Part of what will change the value
proposition is a very robust education campaign with variable messaging
to account for the heterogeneity in the population, concrete signaling
form the Federal and State governments that the insurance is worthy of
consideration (e.g., incentives for purchase including targeted tax
benefits) and the proliferation of mechanisms that make it easier for
people to put aside money to pay for premiums (e.g., tax advantaged
savings plans).
Question. Given the substantial variation in premium costs based on
purchasing age, why, in your view, do so many Americans forgo
purchasing LTCI policies for so long, if they purchase private policies
at all?
Answer. Greater education, needs to occur and it must begin with
outlining for people the actual risk that they face. As stated above
few people insure against this risk since they grossly underestimate
it, believe the exposure is covered by other programs and thus the
perceived value of the insurance compared to its cost, is very low. For
younger individuals to even consider purchase, especially when there
are so many competing demands on their resources, the value proposition
needs to change. More specifically, we must find ways to make the
insurance more affordable and accessible and we must change ``tastes''
for the insurance. The latter can be accomplished through serious
public education.
It must also be recognized that many people do not save adequately
for their own retirement and that income replacement during retirement
is viewed as a necessity, whereas saving for long-term care may be
viewed as a somewhat discretionary expenditure. Thus, in light of other
pressing current and future financial needs, forgoing purchase of long-
term care insurance until these other items are addressed may be a
perfectly rational decision. Even so, there is significant under-
penetration among individuals who today could afford to purchase
policies and there is much work to be done with this segment of the
population to get them insured.
Question. As you explain in your testimony, some Americans
``misperceive their own risks of needing LTSS'' or ``do not understand
the degree to which existing programs do or do not offer coverage
against those risks.'' You also highlight that ``some may prefer to
rely on Medicaid-financed care.''
In your testimony, you mention that ``[t]o date, efforts at
education have fallen short.'' To your knowledge, what efforts have
Federal and State agencies taken in recent years to attempt to address
the misperceptions that you reference and to better inform the public
as to what level of coverage various programs provide with regards to
LTCC? In what ways have such efforts been successful, and where have
they fallen short?
Answer. The Federal Government's ``Own Your Future'' campaign was
certainly a step in the right direction. The ``Own Your Future'' Long-
Term Care Insurance campaign was a joint awareness program between the
Federal Government and individual States that was developed in January
2005. It was specifically designed to raise awareness to individuals
about the need for planning for long-term care. Roughly 25 States have
participated in this campaign to raise awareness among residents
between the ages of 45-70. In the participating States, a letter from
the Governor was mailed to all residents talking about the importance
of planning for long-term care. An individual who responded to the
letter would receive a free Long-Term Care Planning Kit.
While this campaign did raise some level of awareness in the States
in which it was operating, results indicated that the impact of the
campaign was limited, both with respect to awareness of the campaign
itself and to initiation of planning behaviors around long-term care.
More specifically, across the various campaign States, slightly less
than 8 percent of the individual households that received letters from
their governor requested the Planning Kit. The response rate was
highest in Virginia (9.1 percent), and the average of 7.7 percent
across all the States did exceed the campaign's baseline estimate of 5
percent which was considered an appropriate response rate for a social
marketing campaign. These response rates are also significantly higher
than comparable private sector direct mail campaigns on this topic
(which might see responses of 0.1 percent to 2.0 percent) (https://
aspe.hhs.gov/basic-report/final-report-own-your-future-consumer-
survey).
As well, there have been successful education and marketing
campaigns at the employer level. Relatively high take-up rates for LTCI
in a number of settings suggests that there is potential to increase
LTCI coverage, even in the presence of relatively generous Medicaid
programs, which some have posited reduce the demand for LTCI. More than
a decade ago, six States and the District of Columbia that offered
group long-term care insurance plans had take-up rates for people over
age 45 that were double the national average--over 10 percent compared
to 5 percent (LIMRA, 2010). Private employer-sponsored LTCI that is
coupled with little to modest underwriting requirements, active
outreach and education campaigns, and reduced selling costs realized
penetration rates of 9.4 percent in CalPers and 20.4 percent for the
Minnesota Public Employees LTC program (Minnesota Management and Budget
2010).\1\ Thus, we do have concrete examples of increased insurance
take-up rates and there is an opportunity to learn from such
experiences.
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\1\ The CalPers program relies on a moderate level of underwriting,
known as a short form. The Minnesota program is a guaranteed issue
program and therefore does not use underwriting methods. The Minnesota
program also includes non-forfeiture provisions to the coverage.
Question. You discuss the need ``for a major targeted public
education campaign'' and go on to briefly describe the key components
of such a campaign. What role should Congress play in authorizing or
encouraging such a campaign? If we were to codify such a campaign in
legislation, what components and features should we include, and what
do you see as potential pitfalls? What tools might we leverage to
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ensure that the campaign reaches key target populations?
Answer. Congress would need to authorize the appropriate Federal
agency (e.g., Department of Health and Human Services, Education
Department, etc.) to work directly with individual States to develop
campaigns that take account the unique population demographics of the
State and the long-term care service, insurance, and Medicaid program
infrastructure so that an effective and targeted campaign is
implemented. Clearly, the necessary funds to support such an effort
would need to be appropriated. The biggest potential pitfall would be
presuming that a single national message would move the needle. This
needs to be a highly nuanced and targeted campaign that relies on both
traditional and social media outreach and messaging. Moreover, the
message would be different across the age distribution.
Question. Why, from your perspective, might some consumers ``prefer
to rely on Medicaid-financed care''?
Answer. Consumers may prefer to rely on Medicaid-financed care when
they do not have family supports available to help them compensate for
functional or cognitive limitations nor have adequate resources to
purchase care on their own. That is, they have few resources available
to purchase care. More pressing demands on what little resources they
have make Medicaid the safety net program on which they can rely should
they have a significant long-term care need.
Question. What limitations or particular challenges might relying
on Medicaid-
financed LTSS pose for consumers (i.e., in terms of optionality and
flexibility)?
Answer. There are a number of challenges associated with relying on
Medicaid-financed care. First, obtaining eligibility through spend-down
is a threat to many individuals' financial security. Second, many
States have waiting lists and access limits for home and community-
based care. Third, programs often have less flexibility in requirements
around the way that services must be provided. Fourth, reimbursement
rates often do not support development of a high quality workforce and
service infrastructure. This can lead to sub-optimal care provision for
our most vulnerable citizens. Finally, States are struggling with
budget pressures because long-term care expenditures are approaching 30
percent to 45 percent of State Medicaid budgets and growing rapidly.
This means that additional pressure is likely to lead to cutbacks in
coverage, diminished reimbursement to providers, and the potential
underinvestment in other policy priorities.
Question. What challenges might our current level of reliance on
Medicaid for LTSS pose, in the coming years, for State governments,
taxpayers, and providers (i.e., nursing homes, considering payer mix
and reimbursement policies)?
Answer. As mentioned above, there are significant challenges
associated with current reliance on Medicaid for financing care,
especially as the baby-boom generation retires. At a high level, unless
funding is significantly enhanced and/or greater numbers of individuals
are able to avail themselves of public (e.g., Washington State) or
private insurance alternatives, growth in Medicaid financed long-term
care services threatens to crowd out other budget priorities, lead to
gross under-investment in our service infrastructure and lead to even
greater shortages of service providers. All of this at a time when a
growing number of individuals will need to rely on the paid (formal)
system of care as family caregiving capacity continues to diminish.
Question. In a 2017 Mercatus Center Working Paper, Mark J.
Warshawsky and Ross A. Marchand argue that ``private LTCI is crowded
out by the current Medicaid provision,'' noting that, despite
``widespread and significant holdings of housing and retirement
assets'' among retired households, these holdings tend to fall into
``precisely the asset classes that Medicaid rules and State
administrations either always or sometimes exempt from consideration in
determining eligibility.'' Lax programmatic eligibility rules along
these lines have, the paper asserts, ``led middle- and upper-income
older Americans to seek Medicaid enrollment'' and have weakened
incentives for proactive consumer participation in the private long-
term care insurance marketplace.
Putting aside other challenges facing the private market, do you
agree with Warshawsky, Marchand, and others that Medicaid, as currently
administered, ``crowd[s] out'' private long-term care insurance?
Answer. I think that this argument is more theoretical than
empirical, and it tends to be somewhat exaggerated. While some have
argued that the Medicaid program, which represents the largest public
payer of LTSS, ``crowds out'' or suppresses demand for private
insurance, evidence suggests that the impact is likely modest in light
of other issues affecting demand and that effects are at the lower end
of the income scale. Even proponents of the theoretical argument for
crowd-out point to problems with the product as an empirical
explanation of the market's failure to thrive and suggest that even
eliminating the issue of ``crowd-out'' may not be enough in and of
itself to move the needle on insurance take-up rates (J. Brown,
testimony to the Commission on Long-Term Care, August 20, 2013).
Having been part of a team researching this issue (Unruh, et al.,
2016) we found that individuals with lower asset levels would be more
likely to decline the option to purchase private insurance coverage
which could be viewed as quite rational in the presence of Medicaid.
However, while previous research has suggested that crowd-out extends
high into the asset distribution, our results suggest crowd-out is
focused instead at lower levels of the asset distribution.
Specifically, estimates suggest that moving from the asset category
<$50,000 to the $50,000-$100,000 category leads to a 7-percent increase
in the likelihood of purchasing a policy. Crowd-out is less rationale
at upper-middle and upper asset levels, which is why sales are
concentrated at these levels even as penetration remains low. Finally,
there is very little current evidence of a relationship between the
attractiveness of a particular State Medicaid program and long-term
care insurance take-up rates. That is, we do not currently see States
with very generous Medicaid programs also exhibiting low private
insurance take-up rates.
Question. On the Medicaid policy front, what steps can we take to
reduce middle-and upper-class reliance on Medicaid for LTSS? Do you
share the authors' generalized sense that eligibility rules can be too
``lax,'' and, if so, are there areas that are particularly ripe for
reform?
Answer. The way to reduce middle income reliance on Medicaid is to
expand insurance options, both public and private, for these
individuals. The fundamental financing problem is the absence of an
effective insurance mechanism. The distribution of risk makes long-term
care perfectly suited to an insurance solution because (1) many people
will have no need and a small number will be have catastrophic
expenses; (2) it is difficult to predict where you might fall in the
distribution of risk, and; (3) even for the few who have the resources,
savings does not make sense and it unreasonable. All of this argues for
moving the current financing system away from a welfare-basis toward an
insurance-basis--whether primarily public (as in the recently passed
Long-Term Care Trust Act in Washington State), private (combination
products and stand-alone insurance) or more likely, a combination of
both.
As mentioned above, there is no empirical evidence that making
Medicaid rules more stringent leads to greater private long-term care
insurance take-up rates. Even in States that have increased ``look-
back'' periods and in States that have made a greater effort at estate
recovery among individuals who have accessed the Medicaid system, the
effects on long-term care insurance sales have been negligible. A study
conducted more than a decade ago found that even if every State in the
country moved from their current Medicaid asset eligibility
requirements to the most stringent Medicaid eligibility requirements
allowed by Federal law demand for private long-term care insurance
would rise by only 2.7 percentage points (Brown, Coe, and Finkelstein,
2007).
The question is whether taking such an approach in order to
increase insurance sales at the margin is worth the costs, which would
be significant to millions of Americans. In fact, making Medicaid
eligibility rules more stringent would only harm those individuals and
their families for whom private alternatives do not represent a
reasonable choice. The evidence is overwhelming that individuals
currently receiving benefits under the Medicaid program are
disproportionately older age, female gender, minority race/ethnicity,
less educated, tend to be unmarried, have very low net wealth, are
living below the Federal Poverty Level (FPL), have poor self-rated
health, higher chronic conditions, and they are much more likely to
have depression. For this group of highly exposed Americans, Medicaid
represents more than a social safety net, it offers a literal lifeline
of essential support to them. Making it more difficult for such people
to access the social safety net is at odds with the purpose for which
such a safety net exists--namely, to protect our most vulnerable
citizens who lack the means to do so on their own.
Question. Beyond consumer financing, LTSS providers also face
hurdles that will likely increase as our population continues to age.
With regards to growing nursing home workforce needs, the statutory CNA
training lockout stands, in my view, as a key impediment. Under current
law, nursing homes that receive a fine above a certain level,
regardless of cause, automatically lose their ability to train staff to
attain State certification as CNAs through so-called Nurse Aide
Training and Competency Evaluation Programs (NATCEPs). This lock-out
lasts for 2 years, even if the home in question acts quickly and
proactively to address deficiencies and become compliant. I have
collaborated with my colleague, Senator Warner, to draft bipartisan
legislation aimed at better targeting this penalty to encourage nursing
home quality without needlessly restricting training programs that
could otherwise help to meet workforce needs. If, for instance, the
deficiency that triggers a CMP does not harm patients and is promptly
addressed, then the facility should have its approval restored. Our
bill would also promote workforce integrity by allowing providers
participating in Medicare and Medicaid to access the National
Practitioner Data Bank to conduct employee background checks.
Outside of increased Federal subsidies or grants, what steps can
Federal policymakers take to better address nursing home workforce
needs without increasing the regulatory burden for facilities?
Answer. The CNA training lockout is indeed a significant challenge
for nursing homes. Even if a nursing home corrects the deficiency and
comes into compliance, it is forbidden to run a training program for a
full 2 years, which is a counterintuitive (and counter-productive)
policy response. Impeding a nursing home's ability to train nurse aides
runs counter to the goal of assuring the best quality resident care.
That is why it is so important to move S. 2993 (the Ensuring Seniors'
Access to Quality Care Act) through the legislative process to
successful passage.
Another step the Congress can take to address nursing home
workforce needs is to direct and fund the National Academies of
Science, Engineering, and Medicine to undertake a consensus study of
the evidence base for nursing home quality and then map the evidence to
the participation requirements that all Medicare and Medicaid supported
nursing homes must comply with. While certain regulatory provisions may
not directly affect the quality of care one way or the other, such a
review of current regulatory enforcement approaches could lead to more
collaborative and less punitive methods of nursing home regulation that
better align with the ultimate goal of improving care. For example,
inclusion of staff into the problem-solving process could encourage
greater staff engagement and lower turnover, both significant problems
facing the industry right now. The fact is, the regulatory approach we
use today was designed a generation ago. It could benefit greatly from
an overhaul that takes into account all that we have learned over the
past 32 years about quality and that also recognizes staffing
realities.
There are additional steps to consider to address the overall
current and growing nursing workforce shortage. The Geriatric Workforce
Enhancement Program (GWEP), under title VII and title VIII of the
Public Health Service Act, is the only Federal program that trains
health-care professionals at every level in the special health-care
needs of older people. As our population ages, this program will become
more critical than ever and requires greater resource support to keep
up with increasing need. The program currently is funded at $40.7
million and an $11 million increase in funding, to $51 million, would
allow eight more training sites to become operational. Several
educational institutions have developed training programs and applied
for GWEP money to put them into operation, but the program's funding
limitations have prevented approval of their applications. Moreover, an
increase in resources for the program would also be important for the
Geriatrics Academic Career Awards which support skilled clinicians in
researching and training other health-care professionals to care for
older people.
LeadingAge, representing thousands of non-profit LTSS providers
serving millions of seniors across the LTSS spectrum--from subsidized
senior housing and home care to assisted living, nursing homes and
hospice--has advocated for approaches to help foreign-born workers come
to the United States to work in the aging services system. For example,
the LeadingAge IMAGINE Initiative puts forward concrete steps that
could be taken to assure that there are enough people to fill the jobs
that will grow and are associated with the rapid aging of the US
population. These include such things as: (1) enacting an ``H2Age''
temporary guest worker program for certified nurse aides (CNA) and home
care aides; (2) expanding the EB-3 visa program to allow more foreign-
born direct care workers to enter the U.S.; (3) modifying the EB-3 visa
to increase the number of visas available specifically to address LTSS
needs; (4) modifying the R-1 visa program to provide religious visas to
temporary workers in faith-based organizations; (5) Enacting ``Carer
Pairer,'' a new authority under the J-1 visa program, to include aging
services workers in addition to child care workers; (6) amending the
North American Free Trade Agreement (NAFTA) to include aging services
workers, and; (7) increasing the number of refugees permitted to enter
the U.S. accompanied with concrete steps to employ those refugees in
the LTSS sector.
In my testimony to the committee, I made the point that relatively
few Americans have private insurance that covers long-term nursing home
care. This therefore leaves Medicaid as the primary source of funding
for nursing home care; on average 62 percent of nursing home revenues
come from Medicaid. Nursing homes depend on Medicaid not only to cover
the cost of day-to-day care and operations but also to pay for staff
training. Yet, due in part to low reimbursement rates, this funding
source has created significant challenges for nursing homes. In fact,
median operating margins for facilities have now dipped below zero
(CliftonLarsenAllen, 2019, 34th Skilled Nursing Facility Costs
Comparison and Industry Trends Report). Moreover, many nursing homes
are struggling to generate enough cash flow to cover operations. It is
therefore not surprising that many are no longer in a position to
reinvest in their organizations. Moreover, this can handicap them in
recruiting and retaining the staff they need to care for residents, and
underscores the critical need I discussed in my testimony for moving
the system toward an insurance-basis--public and private--to provide
financial protection to Americans and support the development of a high
quality service infrastructure.
In the meantime, and while we work to move toward a public and
private system that insures greater numbers of Americans against the
potentially catastrophic costs of long-term care, Congress and the
Centers for Medicare and Medicaid Services should help to assure that
Medicaid funding levels match the growing needs of an aging population;
that reimbursement for services is closely linked to current cost data
in the State; that rates are updated annually, and; that individual
nursing homes do not face financial exposure from untimely processing
of Medicaid applications. Clearly, Congress needs to work with CMS,
with States, with providers, with consumers, and with the research
community to address the myriad of questions facing the direct care
work force and in particularly, those serving our most vulnerable
citizens in nursing homes. This must be done with a full recognition
that given population aging, effective reform will require tradeoffs
among all interests and it will require more financial resources for
the system to provide the level of care required.
______
Question Submitted by Hon. Maggie Hassan
Question. According to a 2019 National Academy of Social Insurance
report that you coauthored, as many as one in six working adults act as
a caregiver for a senior in their family.
Many of these individuals are ultimately left with the impossible
choice between earning a paycheck and taking care of a loved one in
need. That's why it is critical to ensure access to paid family and
medical leave programs that provide wage replacement to workers who
need to care for a sick family member.
Based on your research, can you please explain the socio-economic
impact that a federal paid family and medical leave policy could have
on individuals with Alzheimer's and family caregivers?
Answer. The Federal paid family and medical leave policy can have a
major and positive impact on individuals with Alzheimer's and family
caregivers. As was pointed out in the report, ``. . . there is a wealth
of research showing that access to paid leave increases maternal
workforce attachment after giving birth, reduces poverty for households
with children, and may also be associated with increased earnings for
mothers. Access to paid parental leave for new fathers hasbeen
demonstrated to increase women's employment and future earnings. Paid
medical leave can help workers with disabilities avoid income loss,
separation from the workforce, or unwanted reductions in hours. Workers
who experience a serious medical incident are also more likely to
return to work when paid leave is available. Additionally, as the Baby
Boomer generation ages, the demand for family caregivers who can
provide support to their parents and other aging loved ones will grow,
especially for those suffering from Alzheimer's disease. As the
challenges of balancing work and caregiving responsibilities mount,
many workers--particularly women, people of color, and low-wage
workers, who may have more care responsibilities and less access to
paid family leave--risk negative economic outcomes, such as lost
earnings, undesired shifts from full- to part-time work, or being
pushed out of the workplace altogether. One study found that women over
the age of 50 who left the labor force early to care for an elder
suffered forgone wages averaging $142,693 and reductions in lifetime
Social Security benefits averaging $131,351; for men, forgone wages and
Social Security benefits averaged $89,107 and $144,609, respectively
(MetLife Mature Market Institute, 2011).
In addition to the financial benefits for workers and their
families, access to paid parental leave has been associated with
positive health outcomes for both children and parents. Regarding
parents, and more specifically, new mothers, they benefit from the time
to recover and bond with their infants; women with more generous leave
benefits showed decreased depressive symptoms and higher overall health
status after childbirth compared to those who took shorter leaves.
Additionally, paid leave is correlated with higher participation in
preventive health screenings and care, both for workers themselves and
for their dependent children. The available literature does suggest
that health outcomes for sick older children and aging individuals
alike are improved with support from family members. One recent study
on paid family leave in California found that the program is correlated
with an 11 percent relative decline in nursing home utilization among
seniors (Kanika and Wolf, 2017). In short, such a policy should
increase the capacity of family caregivers to provide support to those
suffering from Alzheimer's and help to reduce the negative effects on
their financial well-being.
______
Prepared Statement of Jason Karlawish, M.D., Professor of Medicine,
Medical Ethics and Health Policy, and Neurology; and Co-director, Penn
Memory Center, University of Pennsylvania
Thank you, Senators Toomey and Stabenow, for you and your
colleagues' invitation to talk to the Senate Committee on Finance,
Subcommittee on Health Care, about the state of research and care for
persons living with Alzheimer's disease. I am a physician trained in
geriatric medicine and researcher at the University of Pennsylvania. I
am the co-director of the Penn Memory Center, a center dedicated to the
diagnosis, care and research for persons living with Alzheimer's
disease and their family members.\1\
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\1\ The services and research performed at the Penn Memory Center
are described at www.pennmemorycenter.org.
My overall message is this: America has made remarkable, even
spectacular, progress with research to develop better treatments, and
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to understand the natural history and costs of the disease.
America has not made the same progress with diagnosis, treatment,
and care coordination, or, in a word, care.
America has made tremendous progress in research to understand the
natural history and costs of Alzheimer's disease and therefore to
improve diagnosis and treatment.
In 1981, the physician and National Book Award-winning essayist
Lewis Thomas published ``The Problem of Dementia'' in the popular
science magazine Discover.\2\ The esteemed and accomplished former dean
of New York University's and Yale University's medical schools and, at
time of this essay, President of Memorial Sloan-Kettering Cancer
Center, pushed Congress to give special consideration and high priority
for one particular disease: Alzheimer's disease. He called it ``the
disease-of-the-century'' and ``the worst of all diseases.'' He urged
Congress to use its budgetary powers to exercise a target and frontal
assault on the disease. It took Congress some years to listen to his
admonition, but you did. Below, I highlight three of your
accomplishments:
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\2\ Lewis Thomas. ``On the Problem of Dementia.'' Discover. August
1981, pp. 34-36. Reprinted in: Late Night Thoughts on Listening to
Mahler's Ninth Symphony. The Viking Press, New York: 1983, page 121.
In April 1990, at the joint senate-house hearing
``Alzheimer's--the Unmet Challenge for Research and Care''
Senator Mark Hatfield, Republican of Oregon, brought room 2322
of the Rayburn House Office Building to a hushed, plaintive
silence as he opened the hearing. ``My father was a third
generation in our family of blacksmithing. . . .'' He told his
colleagues about a man of extraordinary physical strength who
became so forgetful that he lived his last years in a nursing
home, ``a powerful man reduced to practically nothing--as
almost a vegetable.'' You listened to your colleague. Senator
Hatfield's CARE Act increased funding to NIH by $100 million, a
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doubling in research funds.
On January 4, 2011, President Obama signed the National
Alzheimer's Project into law. This created and maintains an
integrated National Alzheimer's Plan to address the disease.\3\
All Federal agencies and departments whose charge affects the
lives of persons with Alzheimer's disease participate in
providing information and coordinating research and services.
Advisory Council members are drawn from across multiple Federal
departments and agencies as well as 12 members from outside the
Federal government including caregivers, patient
representatives, researchers, and ``voluntary health
association representatives.'' The plan is accelerating the
development of treatment to prevent, halt, or reverse the
disease, improve diagnosis, and coordinate care and treatment.
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\3\ U.S. Code, Title 42. The Public Health and Welfare. Chapter
118. Alzheimer's Disease and Related Dementias Research. Subchapter
III-A. National Alzheimer's Project. Section 11225. The National
Alzheimer's Project. 42 U.S. Code Sec. 11225. The National Alzheimer's
Project.
In December 2014, Congress passed the ``Alzheimer's
Accountability Act.''\4\ The Act authorized the director of the
National Institutes of Health to prepare an annual budget to
meet the benchmarks and goals of the National Alzheimer's Plan.
This budget is unique. It bypasses the usual process that
begins with congressional review and revisions, but instead
goes directly to the president. Simply put, NIH had been
granted the power to ask Congress for exactly how much money is
needed to address the Alzheimer's crisis.
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\4\ https://www.congress.gov/113/plaws/publ235/PLAW-113publ235.pdf.
These efforts have created and sustained a research infrastructure.
Highlights, but by no means exclusive parts, of this infrastructure
include Alzheimer's Disease Research Centers, the Alzheimer's Disease
Neuroimaging Initiative, the Alzheimer's Disease Cooperative Study (now
the Alzheimer's Clinical Trials Consortium), the Resources for
Enhancing Alzheimer's Caregiver Health, and the Health and Retirement
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Study's Aging Dementia and Memory Study.
This infrastructure has revolutionized the ways we understand the
costs of Alzheimer's disease and how we treat it. The Health and
Retirement Study's Aging Dementia and Memory Study has shown the
disease's total yearly costs to the U.S. in 2010 were as much as $215
billion.\5\ As much as one-third to one-half of this arresting total is
the cost of a family caregiver's time and effort providing care.
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\5\ Hurd M.D., Martorell P., Delavande A., Mullen K.J., Langa K.M.
Monetary Costs of Dementia in the United States. New England Journal of
Medicine. 2013;368(14):1326-1334. doi:10.1056/NEJMsa1204629.
Resources for Enhancing Alzheimer's Caregiver Health has shown that
caregiver education, problem-solving strategies, care navigation
support, support after discharge from a hospital or nursing home, and
decision-making support reduce caregiver distress, costs of care and
improve patient quality of life.\6\ These interventions might also
reduce the costs.
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\6\ For an overview of the results of the REACH studies, see
Richard Schulz, ed. ``Handbook on Dementia Caregiving: Evidence-based
Interventions for Family Caregiver.'' Springer Publishing Company,
2000. ISBN-13: 978-0826113122.
This infrastructure has revolutionized the ways we understand what
is Alzheimer's disease. When I began my practice in 1997, a person had
to have disabling cognitive impairments to be diagnosed with
Alzheimer's disease. In other words, a person had to be diagnosed with
dementia in order for me to diagnose whether she had Alzheimer's
disease or some other disease that caused her dementia. A definitive
diagnosis was only possible after death, when a neuropathologist
performed a brain autopsy. In 20 quick years, researchers transformed
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this.
We made discoveries that allow my colleagues and me at the Penn
Memory Center to diagnose the disease when a person has only mild
cognitive impairment, commonly called ``MCI.'' \7\ We are able to
detect biological markers of Alzheimer's pathologies (that is,
biomarkers) in the brain of a living person. These markers have led to
a revision of the diagnostic criteria for Alzheimer's disease.\8\
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\7\ For an overview of MCI, see Ronald Petersen. ``Mild Cognitive
Impairment.'' New England Journal of Medicine. 2011; 364:2227-2234.
Petersen led the team of Mayo Clinic researchers who discovered the
concept.
\8\ Jack C.R., Knopman D.S., Jagust W.J., et al. ``Tracking
pathophysiological processes in Alzheimer's disease: an updated
hypothetical model of dynamic biomarkers.'' The Lancet Neurology.
2013;12(2):207-216. doi:10.1016/S1474-4422(12)70291-0.
The gothic horror story--the need to die to get an accurate
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diagnosis--is ending.
We are also studying drugs that target the disease. Most
provocatively, as part of the NIA-funded Alzheimer's Clinical Trials
Consortium, we are testing these drugs in persons who have either
biomarkers of the disease or genes that increase the risk of developing
dementia, but have no signs and symptoms.\9\ At the Penn Memory Center,
we have study subjects taking the morning off from work or delaying
their departure for a turkey-hunting trip to come in for study visits
testing a drug that we hope will delay the time before they have to
stop working or hunting because of mild cognitive impairment or
dementia.
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\9\ See for example the A4 Study, www.a4study.org.
This research has taught us that Alzheimer's disease is a complex
disease. Among the most important recent discoveries is that biomarker
patterns in patients with ``early onset Alzheimer's disease,'' meaning
before the age of 65, differed from those with ``late onset Alzheimer's
disease.'' We have also discovered that dementia in persons over 80 is
commonly caused not by the classic Alzheimer's pathologies of amyloid
and tau but by those two pathologies and a third and not well
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understood pathology called ``pathologic TDP-43.''
These findings are of substantial importance to America. Persons
over 80, sometimes called ``the oldest old,'' are the largest
proportion of persons with dementia. The aging of the ``baby boom''
generation assures they're the fastest growing proportion as well.
These findings, therefore, suggest that for persons who are 80-
plus, treatment for any one pathology alone, such as amyloid, may not
be sufficient to slow the disease. They suggest that a person who
started treatment at, say, 70 and lives to 80 may develop a new cause
of cognitive impairment.
The unifying word that summarizes these findings is
``heterogeneity.'' Alzheimer's disease is not like polio, a disease
caused by a single virus that will be tractable to a single treatment.
A reasonable expectation is a cure for some, a chronic disease for
many.
Let me close this summary of the progress in our research with an
assessment by George Vradenburg, chairman of USAgainstAlzheimer's:
I think we're going to be in a world in which we have some
successful drugs but the drugs are only going to be partially
effective and where we're going to need high-quality care
institutions for a very, very long time.\10\
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\10\ Cynthis Helzel. ``Making a Difference.'' Argentum. 25 August
2017.
Simply put, we're not going to drug out way out of this complicated
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problem. We are going to need to care for each other.
Care for persons living with Alzheimer's disease needs to improve.
On Tuesday, July 15, 1980, at a few minutes before half past 10 in
the morning, in room 4232 of the Dirksen Senate Office Building, the
people of the United States of America met Alzheimer's disease for the
first time. The occasion was ``Impact of Alzheimers disease on the
Nation's elderly,'' a joint hearing before the Subcommittee on Aging of
the U.S. Senate's Committee on Labor and Human Resources and the
Subcommittee on Labor, Health, Education, and Welfare of the House
Committee on Appropriations. The host, and the only Congress person
present at the hearing, was the chair of the subcommittee on aging,
Senator Robert Eagleton of Missouri.
The first witness, the first American to speak to her fellow
Americans about living with Alzheimer's disease, was Mrs. Bobbie Glaze,
one of the founding members of the organization that would come to be
called the Alzheimer's Association.
Glaze told the story of her husband's dementia. Life with the
disease was ``a funeral that never ends.'' Her husband was once ``a
handsome, vital, athletic man, a civic leader, a public speaker, a
highly respected businessman.'' Now, she explained, he was ``a
statistic.'' It had been 4 years since he spoke or recognized her. She
too felt stripped of identity.
She narrated their years long decline. It was their decline
because, as he became more and more disabled, agitated and withdrawn,
they became impoverished and she, isolated.
Along the way were unremitting indignities. The neurologist
delivered his diagnosis in the waiting room. Ignorance and indifference
were the norm. ``I was given no explanation of what Alzheimer's disease
is, what to expect, how I might learn to cope, nor was I directed to
someone who might be able to direct me in the monumental problems
ahead.''
I am confident that had the Glazes been cared for at a memory
center such as where I practice, they would not have suffered as they
did. I am sad however that there are still too many persons living with
dementia and their families who are telling the same stories Bobbie
Glaze told some 40 years ago.
The typical new patient visit at the Penn Memory Center begins with
a family recounting a despairing narrative of frustrating months, even
years, searching for answers and struggling to get care.
To make a diagnosis and care for a person living with Alzheimer's
disease I need about 60 minutes to discover that the person has
cognitive impairment and that this impairment causes her to be either
less efficient performing day to day tasks, or needs someone else to
assist her with tasks. ``Day-to-day tasks'' means activities of daily
living such as managing a check book, using the computer, cooking a
dinner, traveling from one place to another. ``Less efficient'' means
the person struggles and takes longer but still can carry on.
A person with cognitive impairment who is less efficient in their
day-to-day tasks has what we call ``mild cognitive impairment,'' or
MCI. A person with cognitive impairment who ``needs someone else to
help'' has dementia. The person is disabled.
To gather this information, I interview not one, but two people--
the patient with the memory problem and someone else who knows him
well, such as a partner or adult child. That person typically becomes
the caregiver. I obtain about 25 minutes of cognitive testing and, in
most cases, I order tests, most commonly an MRI of the brain.
Later, I see the patient and caregiver for a 30-minute diagnostic
follow up visit. At that visit, I explain the diagnosis, stage and
care, answer questions and then they meet with a social worker to
develop a plan to address the functional inefficiencies and
impairments.
This care plan educates the patient and caregiver about the
diagnosis, stage and what to expect in the future. It addresses the
patient's functional impairments and the sources of caregiver strain.
For example, we may recommend the patient undergo a driver's evaluation
or the caregiver gain view only access to the patient's bank and credit
accounts. This care planning is ongoing. In time, we train the
caregiver how to talk to the patient about attending an adult day
program and help the caregiver locate and figure out how to pay for the
program.
We are able to do this at the Penn Memory Center because we benefit
from cross subsidies from research and philanthropy. Our entire social
work team is made possible by a generous donation the caregiver of one
of our patients.
Some key points.
We do not have a ``test'' for dementia or MCI. There is,
therefore, no ``test for Alzheimer's disease.''
An MRI is very helpful to show neurodegeneration, but it
does not explain what caused neurons to die.
Amyloid and tau tests, such as measured using a PET scan,
are very important to show why neurons are dying. When both are
present, they show that Alzheimer's disease is the cause of a
person's MCI or dementia. Amyloid and tau however are seen in
other diseases. These scans are, at present, most valuable when
they are negative. A negative result removes Alzheimer's
disease as the cause of the person's cognitive impairment. Of
course, in the event a drug is discovered that targets tau or
amyloid and, as a result, slows the death of neurons, then
these tests will be valuable as a means to guide treatment
decision making.
Cognitive testing is a very important part of the
assessment, but cognitive testing is just one part, and it
needs context. This context includes the quality of the
person's education and the nature of their occupation. At Penn,
we see college graduates who are accomplished executives with
nearly normal testing but have MCI or even mild stage dementia
caused by Alzheimer's disease. Quality of education is a
notable issue for America's older adults, particularly persons
of color who were raised and educated in schools that were
segregated. Cognitive testing done without context is simply
hard to interpret. Context explains why there is not ``one test
for all.'' This explains, at least in part, why the Medicare
annual wellness visit's requirement for ``the detection of the
presence of any cognitive impairment'' has been difficult to
implement.
There are tremendous benefits to this approach to diagnosis and
care. Individuals with cognitive decline who sought care from a
specialist (that is, a neurologist, psychiatrist or geriatrician) had a
shorter time to diagnosis of Alzheimer's disease \11\ and had lower
Medicare costs in the year after receiving a diagnosis of Alzheimer's
dementia than those diagnosed by a non-specialist.\12\
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\11\ Kirson, Noam Y., et al. ``Assessing the economic burden of
Alzheimer's disease patients first diagnosed by specialists.'' BMC
Geriatrics vol. 16 138. 11 Jul. 2016, doi:10.1186/s12877-016-0303-5.
\12\ Alzheimer's Association. ``2019 Alzheimer's Disease Facts and
Figures.'' Alzheimer's and Dementia 2019;15(3):321-87.
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Why is what we do at a memory center not routine?
Reason #1: There is a scarcity of physicians skilled in making and
disclosing a diagnosis and discussing a treatment plan with a person
living with dementia or MCI and their caregiver.
1. There is a shortage of geriatricians.\13\
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\13\ Fried, L.P. and Hall, W.J., (2008). ``Leading on Behalf of an
Aging Society.'' The Journal of the American Geriatrics Society,
56(10), 1791-1795. doi: 10.1111/j.1532-5415.2008.01939, and The
American Geriatrics Society. ``Current Geriatrician Shortfall.''
Available at: https://www.americangeriatrics.org/sites/default/files/
inline-files/Current-Geriatrician-Shortfall_0.pdf.
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The American Geriatrics Society estimates 30 percent of the 65-plus
patient population will need a geriatrician. One geriatrician can care
for 700 patients. This means ``30,000 geriatricians will be needed by
2030 to care for about 21 million older Americans.'' In 2016, there
were 7,293 certified geriatricians in the U.S. or 1 geriatrician for
every 1,924 Americans age 65 or older in need of care. The United
States has approximately half the number of certified geriatricians
that it currently needs.
2. There is a shortage of geriatric psychiatrists.\14\,
\15\
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\14\ Membership Directory, American Association for Geriatric
Psychiatry [cited November 13, 2019].
\15\ IOM Study on Mental Health Workforce of Older Adults Fact
Sheet.
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The American Association of Geriatric Psychiatry has about 2,000
active members. The 2003 President's Commission on Mental Health
Subcommittee on Older Adults (2003), concluded that ``at the current
rate of graduating approximately 80 new geriatric psychiatrists each
year and an estimated 3 percent attrition, there will be approximately
2,640 geriatric psychiatrists by the year 2030 or one per 5,682 older
adults with a psychiatric disorder.''
3. There is a shortage of neurologists.\16\
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\16\ Burton, Adrian. ``How do we fix the shortage of
neurologists?''. The Lancet Neurology 17.6 (2018): 502-503.
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A report by the National Center for Health Workforce Analysis
estimates that while the supply of US neurologists may have grown by 11
percent between 2013 and 2025, demand will have grown by 16
percent.\17\ The current national and geographic shortfalls of
neurologists are likely to worsen, exacerbating long wait times and
reducing access to care for Medicaid beneficiaries.\18\ A large number
of neurologists do not accept new Medicaid patients and most do not
pursue cognitive disorders. Most pursue more lucrative fields such as
stroke, MS, epilepsy and neuro-critical care.
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\17\ https://bhw.hrsa.gov/sites/default/files/bhw/health-workforce-
analysis/research/projections/BHW_FACTSHEET_Neurology.pdf.
\18\ Timothy M. Dall, Michael V. Storm, Ritashree Chakrabarti,
Oksana Drogan, Christopher M. Keran, Peter D. Donofrio, Victor W.
Henderson, Henry J. Kaminski, James C. Stevens, Thomas R. Vidic.
Neurology Jul 2013, 81 (5) 470-478; DOI: 10.1212/WNL.0b013e318294b1cf
4. Primary care physicians struggle to diagnose and treat patients
with MCI and dementia.
Documented barriers are: time constraints, inadequate knowledge, an
inadequate skill set, fear of making an incorrect diagnosis, lack of
remuneration, and lack of coordination between physicians and community
services.\19\
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\19\ Hinton, Ladson, et al. ``Practice constraints, behavioral
problems, and dementia care: primary care physicians' perspectives.''
Journal of General Internal Medicine 22.11 (2007): 1487-1492.
Reason #2. Physicians who have the skills to detect and work up
cognitive impairment lack the resources to practice them. In my
research on the Alzheimer's crisis in America, I found only one center
that is like the Penn Memory Center and is not affiliated with an
academic medical center or a clinical trial center. Memory Care in
Asheville, NC, run by Margaret (Peggy) Noel, M.D. is supported some by
Medicare billing but as well depends on donated space, a fee charged to
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the caregiver for their counselling, and annual fundraising.
What needs to be done?
1. Expand the physician workforce.
Medicare should consider how its influence over
reimbursements to teaching hospitals can incentivize the
numbers of persons pursuing residency and fellowship training
in geriatrics, geriatric psychiatry and cognitive neurology.
Persons pursuing geriatrics, geriatric psychiatry and
cognitive neurology ought to be able to apply for grants to
cover the salary of the trainee.
2. Create a better business model for the diagnosis and care of
persons with Alzheimer's disease. The majority of persons with
Alzheimer's disease are over 65 and so covered under Medicare. Medicare
therefore has a key role in shaping the business model for the care of
persons with Alzheimer's disease.
In January 2017 CMS introduced the G0505 Medicare procedure
code.\20\ Its purpose is to pay clinicians to assess patients with
cognitive impairment, including dementia, and the creation of a care
plan. One year later, the G0505 code was superseded with CPT code
99483, ``Cognitive Assessment and Care Plan Services.'' These billing
codes are tremendous steps forward. Their key innovations are they
recognize the complexity of a workup; explicitly include caregivers;
require a written, shared care plan.\21\
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\20\ Perry, William et al. ``Population Health Solutions for
Assessing Cognitive Impairment in Geriatric Patients.'' Innovation in
Aging vol. 2,2 igy025. 12 Oct. 2018, doi:10.1093/geroni/igy025.
\21\ ``Advisory Council on Alzheimer's Research, Care, and
Services.'' Measuring Progress, Recommendations, and Moonshot Updates.
Washington: Department of Health and Human Services (U.S.) (2019),
https://aspe.hhs.gov/system/files/pdf/261851/Mtg32Sum.pdf.
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This is what Bobbie Glaze was looking for.
I applaud the effort of several Senators who just 1 month ago,
wrote to Seema Verma at CMS that in 2017 less than one percent of
seniors eligible to receive this benefit actually accessed it in 2017.
The senators were right to urge Administrator Verma to educate
clinicians to use the codes and discover the barriers to implementing
it.\22\
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\22\ https://www.mcsally.senate.gov/mcsally-bipartisan-group-
senators-urge-expanded-access-families-alzheimers.
We must study who is using this code and who is not, why, and how
well it works. We should do this with the same urgency as our studies
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of Alzheimer's biomarkers.
I close with the results of some preliminary studies to begin to
answer these questions.
1. I have learned that some Medicare advantage plans were not
paying for it.
2. Primary care physicians need to be instructed on how to spread
this work out over several visits.
3. Medicare should study how to integrate this code into its
Comprehensive Primary Care Plus initiative.
4. The code should recognize that many of the services for dementia
care are effectively and efficiently delivered by nurses, social
workers, and community health workers. We at the Penn Memory Center are
not using it. Why? The code allows ``Any practitioner eligible to
report E/M services can provide this service. Eligible providers
include physicians (MD and DO), nurse practitioners, clinical nurse
specialists, and physician assistants.'' Social workers perform our
care planning.
5. The code does not reimburse for ongoing care management
services.\23\
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\23\ Boustani, Malaz, et al. ``An alternative payment model to
support widespread use of collaborative dementia care models.'' Health
Affairs 38.1 (2019): 54-59. https://doi.org/10.1377/HLTHAFF.2018.05154.
The code ought to cover interventions that can prevent or reduce
patient's symptoms and caregiver stress training. These include support
to enhance the caregiver's skills, case management and coordination of
services and supports among providers and community resources such as
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an adult day program.
______
Questions Submitted for the Record to Jason Karlawish, M.D.
Questions Submitted by Hon. Todd Young
development of an alzheimer's test
Question. You mention in your testimony that we currently do not
have a ``test'' for dementia or MCI.
Where are we in terms of research and development for this type of
test?
Answer. When the topic is Alzheimer's disease, nuance reigns.
We in fact don't have ``a test'' for either mild cognitive
impairment (MCI) or dementia. We do have a number of tools that can
assist a clinician to detect these conditions. Both MCI and dementia
describe the severity of a person's cognitive and functional problems.
Alzheimer's disease is one cause of MCI and dementia. Other diseases
cause MCI and dementia, such as, for example, Lewy Body Disease (this
disease caused Robin Williams dementia).\1\
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\1\ Susan Schneider Williams, Robin Williams' widow, recounts her
husband's diagnosis in this essay in Neurology. https://
n.neurology.org/content/87/13/1308.
``Cognitive problems'' means changes in a person's memory, word
finding, problem solving, attention and spatial abilities. We typically
assess these using pencil and paper tests. There are many different
kinds of tests and some of the more well-known ones include the
Montreal Cognitive Assessment, or MOCA.\2\
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\2\ See https://www.mocatest.org/--President Trump's clinician used
the MOCA in his 2018 annual physical.
Unlike, say blood pressure or weight, there is no single and widely
accepted test. Test scores need to be interpreted in light of the
person's background, particularly their educational and occupational
attainment. This need for interpretation is why it is possible for a
person to have a ``normal score'' on a common test used as part of an
assessment for cognitive impairment and yet be diagnosed with MCI or
even mild stage dementia, or alternatively have an ``abnormal score''
and yet not have cognitive impairment (the problems of false negative
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and false positive assessments, respectively).
``Functional problems'' means changes in a person's ability to
perform day-to-day tasks, such as traveling from home to the store,
shopping, managing money, cooking a meal, and using the computer. We
typically assess these by talking to someone who knows the person well,
such as a spouse, friend or adult child.
MCI describes a person who has cognitive problems and is less
efficient doing functional tasks. They take longer to shop or pay the
bills. They may make a few mistakes but they catch them, usually.
Dementia describes a person has cognitive problems and, as a
result, is unable to perform at least come functional tasks. Someone
else has to help the person shop or manage money or drive. Beginning in
about the mid-1980s, we began to label this person ``a caregiver.''
Clinicians have many, many tools to assist them to determine
whether a person has MCI or dementia. There is, however, no one test
that can do this without the work of a clinician. That clinician needs
to talk to someone else such as a spouse or family member to determine
if there has been functional decline. The clinician, or someone she
designates such as a nursing assistant, needs to perform cognitive
testing.
All of the above points are leading up to two points:
1. Testing cognition alone does not detect cognitive impairment. In
other words, testing cognition alone does not detect either MCI or
dementia, particularly mild stage dementia. Yes, of course, in a person
who have moderate to severe stage dementia, a cognitive test alone
could detect that. Why? Because the person performs so poorly on the
test. The problem with detecting MCI and dementia, particularly mild
stage dementia, is the overlap between ``normal scores'' and ``abnormal
scores.'' Hence the need for the functional assessment.
2. An ``Alzheimer's test'' is a test that detects the pathologies
that cause MCI and dementia. We are able to detect these pathologies.
We can measure amyloid protein in spinal fluid or with PET scan of the
brain. We can detect tau protein in spinal fluid and soon with a PET
scan.
An Alzheimer's test does not detect dementia or MCI.
The Medicare annual wellness visit requirement for the detection of
the presence of ``any cognitive impairment'' is a well-intentioned
effort to make American medicine attend to their patients' brain
health. It was an idea written by Congress. Not medicine.
All of the above is leading up to a policy change. A smart revision
to the requirement would be to assess cognition and function in order
to detect the presence of cognitive impairment. This would align with
the intentions of CPT code 99483, designed to support ``Cognitive
Assessment and Care Plan Services.''
Question. What more could be done at the Federal level to encourage
research into the development of an Alzheimer's test?
Should we be encouraging prize competitions, like that of EUREKA?
Answer. What is a vision for a future for the development of tests
to detect cognitive impairment and Alzheimer's disease? Two things.
First, unobtrusive monitoring that shows how a person is
functioning in her day-to-day life. The term ``unobtrusive monitoring''
describes sensors of common everyday activities such as traveling
about, driving, banking, managing medications, and using technology
like the stove and computer. Think of a ``smart phone'' or even a
``smart home'' that monitors day to day activities. Imagine a future
when financial transactions are monitored for signs of cognitive
decline. There is tremendous opportunity to use real-world financial
data to identify persons who are having problems with financial
capacity or are victims of fraud and abuse.
Second, a blood test that detects biomarkers of amyloid and tau,
and, someday as well the other diseases that cause MCI and dementia.
Imagine for example a blood test for Lewy Body Disease.
We should encourage the development of these biomarker and
monitoring technologies. Much research is under way.
Would a prize help to speed research along? With a clear goal and
flexibility in the timeline, a prize is a great motivator. The biggest
challenge, and so the biggest prize, is translating these discoveries
into routine clinical practice.
Right now, in America, what would most help would be to create a
health-care system that allows a clinician to administer cognitive
tests, talk to an informant about function, and if these assessments
raise concerns, perform a workup. The Medicare CPT code 99483 could
facilitate this, but it is notably underutilized. If we figure out why
that will be a eureka moment.
assessment tools
Question. You talk a lot about cognitive testing and its importance
in assessing whether a patient could have dementia.
Should we be encouraging the Centers for Medicare and Medicaid
Services to utilize the existing Welcome to Medicare initial exam and
Medicare annual wellness visits to try to screen, detect, and diagnose
Alzheimer's and related dementias in their earliest stages?
Answer. We should encourage the detection of dementia. This will
require cognitive testing and functional assessment. In the Welcome to
Medicare exam and the annual wellness visit the clinician can obtain
cognitive testing. The challenge is obtaining a functional assessment.
This is best done by talking to someone who knows the person well, such
as a spouse, adult child, neighbor or friend.
We ought to create a health-care system that allows a clinician to
administer cognitive tests, talk to an informant about function, and if
these assessments raise concerns, perform a workup. As referenced
above, the Medicare CPT code 99483 could facilitate this, but it is
notably underutilized.
______
Questions Submitted by Hon. Benjamin L. Cardin
caring for persons living with alzheimer's disease
Question. While efforts to find a cure for Alzheimer's disease are
critical, we must ensure that patients who are diagnosed have the care
coordination that meets their personal, medical, and financial needs.
Ms. Kovach's selfless act to care for her grandmother is tragically
common, as many people with Alzheimer's disease come to rely on a
partner or a child as a caregiver. The Alzheimer's Association
estimates that there were 293,000 caregivers in Maryland last year that
provided 334 million hours of unpaid care at a value of $4.2 billion.
Since 2013, I have been proud to annually introduce a resolution
with Senator Collins recognizing the work of Direct Support
Professionals (DSPs). DSPs are integral to the system of providing
long-term support and services for Alzheimer's patients.
In your testimony, you describe some of the steps of the care
planning benefit that the Penn Memory Center employs, including
discussing optional caregiver programs like adult day health programs.
We want to ensure that Alzheimer's patients and their families have the
full array of caregiver services available and provided as options.
Can you discuss how Penn Memory Center works to ensure that the
care planning benefit for Alzheimer's patients includes all available
caregiver service options?
Answer. We have social workers with the knowledge of the programs
available in our region and the skills to help a patient and family
member decide what services they need, how to access them and how to
pay for them. A social worker or other health-care or social-service
professional is an essential part of the care team. The general term
for such a person is a ``care manager.''
At the diagnostic follow up visit, the patient and family routinely
meet with a care manager to review and create a care plan. The policy
message here is that clinicians need to have easy and unencumbered
access to persons who can help a family assemble a care plan.
Question. Are there best practices around this that you would
recommend to Medicare?
Answer. A critical need is for care managers to assist a patient or
family member to access care services and support. One examples of this
in practice is at UCLA.\3\ I refer you as well to this review of how to
design systems of care for older adults with dementia.\4\
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\3\ See the UCLA dementia management program. https://
www.uclahealth.org/dementia/.
\4\ Callahan et al. Health Affairs. ``Redesigning Systems of Care
for Older Adults With Alzheimer's Disease.'' https://
www.healthaffairs.org/doi/10.1377/hlthaff.2013.1260.
______
Questions Submitted by Hon. Sherrod Brown
social determinants and alzheimer's diagnosis
Question. Several presenters at the 2017 Alzheimer's Association
International Conference presented data that indicate a link between
social determinants and the development and prognosis of Alzheimer's
disease. Specifically, these studies found that stressful life events
such as interactions with the criminal justice system, poverty, lack of
access to preventive healthcare, lack of education, and food insecurity
were associated with an increased development of Alzheimer's disease
and a worse disease prognosis.
In the course of your practice, have you observed a link between
social determinants like poverty, education, and nutrition with
Alzheimer's risk and prognosis?
It has been well established that preventive health care is a key
to a long and healthy life. In your opinion, does this same paradigm
apply to preventive efforts towards poverty, poor education, and
malnutrition?
In 2017, Alzheimer's cost the U.S. health system an estimated $259
billion, which includes $175 billion in Medicare and Medicaid payments.
Do you believe that additional investment in addressing the social
determinants of health may help reduce future health-care costs
associated with Alzheimer's disease?
Answer. The three questions are thematically linked, and so I'll
answer them together.
In the past 30 years, the risk of developing dementia has been
declining. There still are millions of people with dementia. There just
aren't as many as we expected, and, if we take action, there may be
fewer than the 13 million projected in 2050.
The NIH funded Framingham study found that from 1970 to 2008, the
risk of getting dementia has been steadily declining. A twenty percent
drop per decade.\5\
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\5\ Claudia L. Satizabal, Alexa S. Beiser, Vincent Chouraki,
Genevieve Chene, Carole Dufouil, and Sudha Seshadri. ``Incidence of
Dementia Over Three Decades in the Framingham Heart Study.'' The New
England Journal of Medicine 374;6: 523-32.
This seems ironic. In that same time period, researchers haven't
discovered drugs targeting the pathologies that we think cause
Alzheimer's disease and so prevent dementia caused by those
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pathologies, but something must be working.
What has been working? What interventions are preventing dementia
and keeping the brain healthy despite Alzheimer's pathology? A dive
into the data shows the answers.
Over 30 years, the residents of Framingham who had access to health
care took more and more treatments and interventions to prevent heart
disease, such as anti-hypertensive medications and a heart-healthy
lifestyle, and if they developed heart disease, such as a heart attack
or stroke, they received care. The more care they got, the healthier
were their brains. Their risk of dementia was lower. Drugs to lower
blood pressure and cholesterol were one intervention. The residents of
Framingham also benefited from reductions in rates of tobacco smoking
and other heart-healthy lifestyles.
Framingham's results aren't unique. Similar large studies from
Sweden and the United Kingdom showed the same results.\6\
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\6\ Matthews F.E., Arthur A., Barnes L.E., et al. ``A two-decade
comparison of prevalence of dementia in individuals aged 65 years and
older from three geographical areas of England: Results of the
Cognitive Function and Ageing Study I and II.'' Lancet 2013; 382: 1405-
12.
Qiu C., von Strauss E., Beckman L., Winblad B., Fratiglioni L.
``Twenty-year changes in dementia occurrence suggest decreasing
incidence in central Stockholm, Sweden.'' Neurology 2013; 80: 888-94.
A 2017 report in the Lancet summarized the evidence about what
increases the risk of dementia and so how we can prevent dementia. As
much as 35 percent of the lifetime risk of developing dementia is
caused by things people can do something about.\7\ These risk factors
are: less than a high school education; hypertension; obesity; hearing
loss; tobacco smoking; depression; physical inactivity; social
isolation; and diabetes.
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\7\ See Livingston et al. ``Dementia prevention, intervention and
care.'' Lancet. 390;2017: 2673-2734. https://doi.org/10.1016/S0140-
6736(17)31363-6.
Each of these can be intervened on (see for example, my answer to
Senator Casey's question about the benefits of correcting hearing
loss).
access to proper nutrition and the risk of developing alzheimer's
Question. There is a growing body of evidence linking diet to the
risk of developing Alzheimer's disease and other forms of dementia.
Diets rich in healthy fats, whole grains, fresh fruits, and fresh
vegetables have been linked to a decreased risk of developing various
forms of dementia. Research studies also indicate that children who
partake in a nutritious diet at a young age are more likely to continue
eating healthy as they mature into adulthood.
Earlier today, the Trump administration finalized changes to the
Supplemental Nutrition Assistance Program (SNAP), which could strip
hundreds of thousands of people of their SNAP benefits, causing an
estimated 61,000 households in Ohio to lose access to this important
program. A study by the Urban Institute found that these changes
(imposing stricter work requirements, capping allowance deductions, and
altering the way participants are enrolled in the program) would result
in 3.7 million fewer people per month receiving SNAP benefits along
with 982,000 students loosing access to free or reduced lunches.
Does maintaining a proper diet play a role in reducing the risk of
developing a cognitive impairment like Alzheimer's disease?
Answer. Yes. See answer above for why. To reiterate, a diet that is
heart-healthy, limits obesity, and prevents or treats diabetes is a
brain-healthy diet. Put another way, SNAP is part of our Nation's
effort to prevent dementia.
Question. Can people take preventative measures in childhood,
adolescence, and adulthood to reduce the risk of developing a cognitive
impairment like Alzheimer's disease?
Answer. Yes. Again, see above for why. Several of the risk factors
are events that occur in early life--hypertension, obesity, tobacco
habits, inactivity, and, of course, education.
Question. When treating a patient with a disease like Alzheimer's,
do you recommend that the patient improve or maintain a healthy diet?
Answer. I recommend a heart-healthy life. This includes exercise,
no smoking, and a heart-healthy diet. I encourage social engagement
such as at a senior center or an adult care program.
Question. Would a reduction in access to healthy foods impact the
prognosis for a patient diagnosed with a cognitive impairment like
Alzheimer's disease?
Answer. A heart-unhealthy diet will harm a vulnerable brain.
reduced rates of cognitive assessment
Question. During the hearing, we discussed the many benefits
included in the Affordable Care Act (ACA) that both help individuals
with Alzheimer's as well as their family members and caretakers. One
benefit of the ACA that you mentioned was the creation of an Annual
Wellness Visit (AWV) in the Medicare program, which includes a
screening for cognitive impairment.
In general, does early detection of a cognitive impairment such as
Alzheimer's disease lead to improved prognosis?
Answer. The key term here is ``detection'' and to recognize that
detection is distinct from ``screening.'' ``Detection'' means efforts
that are in part individualized to a person. ``Screening'' describes a
uniform approach for all persons.
The ``detection of cognitive impairment'' requires testing the
person's cognition and also talking with someone close to the person to
assess whether the person is having any inefficiencies or problems
doing day-to-day tasks. My answer to Senator Todd Young's question
details this.
Detection is a sensible thing to do. The longer a person suffers
cognitive impairment, the more the person experiences unaddressed
disabilities. As a result, the person suffers from errors taking
medications, missed doctors' appointments, social isolation, financial
errors, financial abuse or exploitation, and poor nutrition.
Question. In your professional opinion, does the ACA benefit of an
AWV screening help identify patients with early signs of cognitive
impairment, who otherwise might slip through the cracks?
Answer. See answer to previous question.
Question. Would the elimination of this benefit (and the resulting
decrease in the number of individuals undergoing this screening) hurt
our Nation's effort to combat disease like Alzheimer's and care for
patients with cognitive impairments?
Answer. Yes, of course. The smart next step in our Nation's effort
to transform Alzheimer's disease and related disorders from a crisis to
a manageable problem to align the vision of the Annual Wellness Visit
with the CPT code 99483, designed to support ``Cognitive Assessment and
Care Plan Services.''
______
Questions Submitted by Hon. Robert P. Casey, Jr.
Question. Thank you for your testimony at the hearing. I would like
to follow up with you about my question related to hearing loss and
dementia. In your response to my question, you referenced research that
draws a link between hearing loss and an increased risk for dementia.
My legislation, the Medicare and Medicaid Dental, Vision, and Hearing
Benefit Act of 2019 (S. 1423) would ensure that dental, vision, and
hearing services are guaranteed benefits for all Medicare
beneficiaries. I know you have extensively researched Alzheimer's
disease and related dementias, as well as provided care to many people
living with Alzheimer's disease. Would you provide a more detailed
explanation of the impact hearing loss can have on a person's cognitive
function? Do you think that increasing access to hearing services could
help maintain and improve healthy brain activity, especially for aging
adults?
Answer. Hearing loss is common. Among persons over 55, 32 percent
experience it. Many studies show hearing loss is associated with an
increased risk of developing dementia. For a thorough review of these
data, please see the work of the Lancet Commission.\8\
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\8\ Livingston et al. ``Dementia prevention, intervention and
care.'' Lancet. 390;2017: 2673-2734. https://doi.org/10.1016/S0140-
6736(17)31363-6.
The key points are that hearing loss is one of the largest of the
modifiable risk factors for dementia. Preventing or treating hearing
loss could reduce the population risk of developing dementia by as much
as nine percent. In America, this translates into millions and millions
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of older adults.
Multiple mechanisms explain this association. Hearing loss causes
social isolation which, in turn leads to cognitive impairment. The less
aural input the brain receives, the harder it is for a person to learn
and remember facts. The harder a person has to work to learn and
remember, the more the person work to perform other cognitive tasks. As
hearing loss worsens without correction, the many brain regions that
process auditory information are not sufficiently stimulated, leading
to loss of function.
Increasing access to hearing services could therefore help maintain
the cognitive health of aging Americans.
______
Questions Submitted by Hon. Sheldon Whitehouse
Question. In 2020, the Center for Medicare and Medicaid Innovation
(CMMI) will implement a care model for beneficiaries with significant
chronic illness(es), who have high utilization rates and fragmented
care. Through the Seriously Ill Population (SIP) model, CMS will
temporarily raise provider payment rates for beneficiaries in the
program while providers coordinate care and stabilize patients.
What is your assessment of the SIP model?
In what ways could SIP improve care delivery for beneficiaries with
chronic illnesses?
Do you see any areas for improvement to the CMMI proposal?
Answer. Among the many causes of disability and death, as well as
caregiver burden and loss of income, is the health care system.
Fragmented and uncoordinated care is a particular problem for older
adults who have multiple illnesses, especially if one of those
illnesses is dementia. Unlike a disease, this cause of morbidity and
mortality is fixable, even curable.
The Seriously Ill Population model is an example of the kinds of
interventions that can achieve this. It will improve care because it
will eliminate unnecessary medication and test prescribing, educate the
patients and especially the family on how to care for the person,
identify flares of illness before they require hospitalization, and
minimize unnecessary days in hospital.
Question. Many families feel frustrated with the apparent lack of
progress on finding a cure or treatment for Alzheimer's. However, you
all commented on the increase in knowledge and resources available to
families of Alzheimer's patients in recent years.
Please describe any recent advances in our understanding of
Alzheimer's and dementia and any progress towards medical treatment.
What avenues of current research appear to be most promising?
Answer. Twenty years ago, a definitive diagnosis of Alzheimer's
disease could only be made after the person with dementia had died,
from the results of a brain autopsy. Now, we can visualize the
pathologies in the living person. We call these ``biomarkers.'' These
biomarker discoveries are a tremendous advance. They not only allow for
greater diagnostic understanding, they are the route to discovering
treatments that target those pathologies.
We have as well an increasing understanding of the complexity of
the causes of dementia. Again, this is very useful for guiding the
design and testing of drugs.
We have a greater understanding on the kinds of lifelong habits and
behaviors that are associated with harming brain health.
All of this knowledge came from research. Much of it funded by NIH.
The avenues of current research that are promising are studies
designed to: understand the biomarkers of disease and how they relate
to disease progression and clinical problems; intervene on biomarkers
and so slow disease; discover the social, clinical, and ethical
implications of using these biomarkers in clinical practice; discover
how best to deliver life course interventions to reduce the risk of
dementia; and improve the delivery of diagnostic and care services.
Question. In what ways have resources available to families and
caretakers improved?
Answer. The first studies of family caregiving began in the 1980s.
They described the challenges of care for a person with dementia. Soon
thereafter, studies developed and tested interventions to address those
challenges and, in doing so, improve caregiver and patient well-being
and quality of life. For a summary of this research and its results, I
commend the National Academy of Medicine report ``Families Caring for
an Aging America.''\9\
---------------------------------------------------------------------------
\9\ See ``Families Caring for an Aging America'' at https://
nam.edu/families-caring-for-an-aging
-america/.
Question. How can Congress best support advancements in Alzheimer's
---------------------------------------------------------------------------
research and care?
Answer. Support research that will discover better ways to diagnose
and treat the disease (the biomarker based work), identify cognitive
impairment (the detection of cognitive impairment work) and deliver
care to caregivers and patients (the translation of these discoveries
into clinical practice).
______
Questions Submitted by Hon. Catherine Cortez Masto
Question. In 2018, Senator Susan Collins and I introduced the BOLD
Infrastructure for Alzheimer's Act, which Congress passed. The bill
treats Alzheimer's as the public health crisis that it is, taking
advantage of the role that local public health departments can play in
implementing disease interventions like early detection and diagnosis.
How is the disease progression different in a patient who has had the
benefit of an early diagnosis?
Answer. An early diagnosis, meaning at the stages of MCI or mild
stage dementia, allow the person with the disease and their family to
identify functional inefficiencies and problems, address them, and plan
for how to identify and manage future inefficiencies and problems. This
in turn reduces the harms from the failure to address these matters,
such as errors in the management of medications, problems caring for a
chronic disease like diabetes, financial errors or fraud and abuse,
depression and anxiety. Of particular value are interventions that
focus on a caregiver's skills and training. Studies show that these
interventions can delay the time before a person is admitted to a long
term care facility, which is a marker of disease progression.
The National Academy of Medicine report, ``Families Caring for An
Aging America,'' provides a well-organized and thorough summary of the
studies testing caregiver interventions.\10\ The report also makes
recommendations that Congress can enact. Many of these recommendations
are ensconced within the BOLD Act.
---------------------------------------------------------------------------
\10\ The report, a report in brief, and recommendations are all
available at https://nam.edu/families-caring-for-an-aging-america/.
Question. BOLD will support the development of care planning
services for people living with Alzheimer's; Medicare covers those
services, and we have to ensure people can take advantage of them. Can
you speak to the difference in health outcomes between those who have a
clear care plan, versus families who do not have access to that type of
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assistance?
Answer. See above.
Question. BOLD requires CDC to increase the analysis and timely
public reporting of data on Alzheimer's, cognitive decline, caregiving,
and health disparities. What kind of difference will additional
surveillance information have on your research? What are the areas of
greatest need when it comes to population health data that would help
in Alzheimer's research?
Answer. America needs data that describe and track America's
patients and caregivers. These data will greatly inform the impact of
dementia on our Nation's economy and families. It will also aid in
documenting the effectiveness of interventions. Public health data are
especially valuable to show how all Americans are experiencing
dementia.
These data will allow America to identify and so address
disparities in detection and outcomes. This is especially important in
settings such as rural and suburban regions (cognitive impairment
hinders a person's ability to travel about to get help), poverty (much
of long-term care services and supports are paid ``out of pocket''),
and ethnic and racial diversity (the experience of cognitive impairment
is often influences by how people understand cognition and aging).
Someday America will have an effective treatment for Alzheimer's
disease (a drug that slows the disease). Someday America will
effectively deliver health care to patients and their caregivers.
Surveillance data will be tremendously important to inform how well
these treatments are being prescribed throughout America (i.e., access)
and their outcomes on the persons with dementia and their family
members.
Question. One of the recommendations in the National Plan to
address Alzheimer's is to explore the effectiveness of new models of
care for people with Alzheimer's disease. Have you seen models that are
promising in addressing the needs of Alzheimer's patients? Does
Congress need to push CMMI to develop Alzheimer's specific models?
Caregivers are critical to a patient's outcomes--do you have thoughts
on how we account for that in payment models?
Answer. CMMI efforts such as comprehensive primary care (CPC) and
Medicare's CPT code 99483 are impressive steps in the right direction
so that Medicare supports the care of older adults with chronic
diseases, especially older adults with dementia (caused by Alzheimer's
disease, and other diseases as well). Congress ought to continue this
move in the right direction.
Caregivers are critical to a patient's outcomes. Payment models
should account for the time that a clinician needs in order to talk to
the patient and the caregiver. These models should account for the fact
that these conversations may occur face-to-face in the office or via e-
communication in the electronic medical record, or the telephone.
Americans need a health-care system that can do the following:
Diagnose a person with dementia or MCI: this means provide
adequate compensation to the provider to take the time to interview and
examine the patient and to identify and interview the caregiver.
Identify the caregiver and document them in the patient's
medical record.
Provide caregivers access to the patient's medical record.
Expect that at the time of discharge from hospital the patient
is asked to identify a caregiver (and, if the patient is unable to do
to so, the clinicians seek one out). This caregiver should then receive
education about the patient's diagnoses and post hospital plan of care.
Provide the person with dementia and MCI, and their caregiver
education and training.
Provide access to care and support for care services and
supports, especially transportation, adult day activity programs, and
respite care.
______
Prepared Statement of Lauren Kovach, Alzheimer's Advocate
Good afternoon, Chairman Toomey, Ranking Member Stabenow, and
distinguished members of the committee. Thank you very much for the
opportunity to share my personal story on the impact Alzheimer's has
had on my family. My name is Lauren Kovach, and I'm here today to share
my story as a caregiver and an advocate with the Alzheimer's
Association and Alzheimer's Impact Movement. Twenty years ago, my life
took an unexpected turn when my grandmother, Helen Tannas, was
diagnosed with Alzheimer's at the age of 82.
Alzheimer's is a progressive brain disorder that damages and
eventually destroys brain cells, leading to a loss of memory, thinking,
and other brain functions. Ultimately, Alzheimer's is fatal. We have
yet to celebrate the first survivor of this devastating disease.
My grandmother lived to take care of her family--we're Macedonian,
that's what we do. Growing up, my mom, brother, and I lived four houses
down the street from my grandmother and since my mom was a single,
working mom, we were always over at grandma's. My grandmother helped my
brother and me with our homework, she cooked dinner for us, and was the
center of countless family celebrations. As a child, my grandmother was
a daily part of my life. I never imagined life without her down the
street.
I was 21 years old and in my third year at college when my
grandmother was admitted to the hospital. I was terrified at the
thought of losing her. My grandmother spent 10 days in intensive care
undergoing a battery of tests, which resulted in several diagnoses. All
of the conditions were treatable except one--early-stage Alzheimer's
disease.
When I was growing up, my grandmother had a pet name for me. She
called me ``moe chupe, moe chupe,'' Macedonian for ``my girl, my
girl.'' One day after the diagnosis, I turned to my grandmother and
said, ``You're my chupe; you're my girl.'' The nickname she had given
me so many years ago had come full circle. It was now our turn to give
back the love and sacrifice my grandmother had always given us. And so
my mom, my brother, and I made a pact that we would do whatever it took
to keep my grandmother at home. We prepared for the longest good-bye of
our lives.
After her diagnosis, we adjusted our lives to become full-time
caregivers. I withdrew from school and eventually my mom had to retire
early from her teaching career. We knew we needed to take steps to care
for the woman who spent most of her life caring for us, but we didn't
know what those steps were or how to make a plan. We didn't even really
know what deciding to be a full-time caregiver meant--there was a long
and bumpy road ahead for all of us.
When we were discharged from the hospital, that was it. They gave
us our discharge papers and wished us the best of luck. No pamphlets,
no explanations, no support. We were fortunate to be near the
University of Michigan, which has an Alzheimer's Disease Center, and a
neurologist who confirmed the Alzheimer's diagnosis. That neurologist
was great, but again, she didn't provide us with any resources or
information on what to expect from this diagnosis or what we were
supposed to do next.
There we were facing this life-changing news and having to
immediately make one major decision after the other, with no time or
guidance to make a long-term plan. We weren't aware of resources that
could have helped my mom and me manage the stress of caregiving, like
adult day services and respite care. Unfortunately we learned about
those too late--after she had passed away.
Fortunately, families now facing an Alzheimer's diagnosis have new
options that were not available to my family back then. In 2017,
Medicare began reimbursing physicians and other health-care
professionals for providing comprehensive care planning services to
individuals with cognitive impairment--a critical step in improving the
quality of care and quality of life for those with Alzheimer's and
their caregivers.
Comprehensive care planning is crucial to helping those living with
Alzheimer's and their families answer those important first questions
after a diagnosis of ``how do I take care of my loved one?'' and ``what
do I do now?'' A care planning visit includes an evaluation of
cognition and function, measuring neuropsychiatric symptoms, a safety
evaluation, identifying and assessing a primary caregiver, development
of advance care directives, and referrals to community services.
Dementia-specific care planning can lead to fewer hospitalizations,
fewer emergency room visits, and better medication management. It
allows diagnosed individuals and their caregivers to access medical and
non-medical treatments, clinical trials, and support services available
in the community. Everyone should have access to this lifeline.
However, analysis has shown that fewer than one percent of those
living with Alzheimer's and other dementias eligible to receive these
services, actually received care planning in 2017. In order for more
Americans affected by Alzheimer's to receive these critical care
planning services, more clinicians must use the care planning benefit.
That is why I am so thankful to Ranking Member Stabenow for
introducing the bipartisan Improving HOPE for Alzheimer's Act (S. 880),
which is already cosponsored by 46 Senators--including many of you on
this subcommittee. This important bill would help achieve that goal by
requiring the Department of Health and Human Services to first educate
clinicians on the existence and importance of Medicare's care planning
benefit, and second, report to Congress on the barriers to individuals
receiving care planning services and how to increase their use.
If this care planning code had existed 15 years ago, it would have
significantly improved the quality of life for my grandma, my mom, and
me. Full-time caregiving while navigating the health-care system is
both physically and emotionally draining. I can't describe the level of
exhaustion and desperation we felt.
It wasn't always easy, but my mom and I were able to keep my
grandmother at home for her entire journey--from the time she was
diagnosed, my grandmother never spent a single night by herself. If my
mom wanted the night off, I would stay home with her. If we went to
visit family in Chicago, grandma would come with us.
During the day, when we left for work, we'd leave post-its around
the house. Simple things like ``remember to brush your teeth,''
``coffee is made,'' and ``lunch is in the fridge.'' And that worked for
a while. But as the disease progressed, we had to move past the ``post-
it phase.'' My mom would call her during the day to ask how lunch was
and my grandma would say it was great--but we would get home and her
sandwich would still be in the fridge.
I learned to live in the moment, figuring out what to do as I went
along, because I didn't know how much time I had left with her. We kept
on fighting. We held on tightly as the disease stole her from us. I
felt like I was living the same day over again for years, struggling to
keep her alive and healthy. But even as she forgot who we were, there
was no question that my grandmother loved us. We loved each other until
the very end.
It wasn't until 7 years after her diagnosis that I found my purpose
in life, thanks to the Alzheimer's Association. As my grandmother's
cognition and memory declined, I wanted to learn more about the
disease. I set out looking for information. Somehow I knew that purple
was the color of Alzheimer's awareness. I Googled ``purple Alzheimer's
shirts'' and the Alzheimer's Association was the top hit.
Poring over the Association's website, I learned about the
Association's Walk to End Alzheimer's and reached out to my local
chapter. I educated myself, spoke with families going through the same
hardships, and fully committed myself to spreading awareness of the
disease. I've been a volunteer, fundraiser, and advocate ever since.
I'm proud to have led the planning committee for the annual Walk to End
Alzheimer's in my hometown of Brighton, MI, which raises awareness and
funds for Alzheimer's care, support, and research. I eventually became
involved with the Alzheimer's Association Advocacy Forum, where I've
made huge strides in advocacy.
Even as I watched the person who meant the most to me slip away for
15 long and brutal years, I knew that I had found my niche, my purple
tribe, to help me through the hardest years of my life. Though there is
no cure, treatment, or prevention for Alzheimer's, that didn't mean I
would go down without a fight.
In 2017, my grandmother declined into the late stage of the
disease. My mom and I had handled the day-to-day care of my grandmother
together for 15 years, but we had reached the point where we decided we
needed the help of hospice care. By definition, hospice provides
comfort to both the person dying and to the family, but our family had
a terrible experience with it.
I had a bad feeling right off the bat. The social worker talked to
us for about an hour but not once sat with or visited my chupe.
The next day there was another knock at the door. This time it was
Adult Protective Services, responding to an abuse and neglect complaint
filed against my mom and me by the hospice care company. We were
stunned. We spoke with the agent at length before he turned his
attention to my grandmother. The pair was soon singing and clapping.
We knew we needed Medicaid coverage to help cover the cost of her
care, but there was a 6- to 12-month wait. The agent told me to keep
this horrible, false abuse and neglect complaint on file, because as
embarrassing as it was for us, it meant she would get bumped to the top
of the list.
The agent offered reassurance on his way out. ``If only everyone
could be as loved as her,'' he said. ``Keep doing what you're doing.''
We also applied for help through our local Area Agency on Aging. A
caregiver who was contracted through one of the authorized companies
called my mom to set up a time for our first home consult. But, she
never showed up for the visit and when my mom called to check on where
she was, she told us she had taken another job. That meant we went back
on the wait list and my grandmother died before we got any help. I wish
we had had the lifeline that Senator Stabenow's Improving HOPE for
Alzheimer's Act would provide for families. Having a caregiving plan
rather than muddling through day by day would have been such a relief.
My chupe started dying on a Saturday. She had lived with
Alzheimer's for 15 years and passed away on June 3, 2017 at age 97. I
crawled in bed and laid my head on her chest as she was taking her
final breaths. I told her through tears that it was okay to go. And I
promised her that I would never stop fighting for her, for the three of
us, and the immeasurable bond we shared.
I am determined to fulfill that promise. It is why I continue to
volunteer hundreds of hours each year as an advocate.
Today, more than 5 million Americans are living with Alzheimer's.
The number of Americans living with Alzheimer's is growing--and growing
fast. With the aging of the baby boom generation, the number of
Americans aged 65 and older with Alzheimer's is expected to
dramatically escalate. By 2050, nearly 14 million Americans may be
living with Alzheimer's.
That is why it is so critically important to prepare now. To
increase awareness of and access to important services like the
Medicare care planning code. Robust care planning is the first step to
learning about and selecting appropriate, patient-centered supports and
services for persons with dementia, families, and caregivers. It was
overwhelming when my grandmother was diagnosed. It can be difficult for
families to juggle the stress of a diagnosis with the immediate care
needs of their loved one living with Alzheimer's while also trying to
research services such as adult day, home health, respite, skilled
therapy, residential facilities, and nursing home care.
Thank you for holding this hearing today and I respectfully request
that you continue to make Alzheimer's research a priority and work
together to pass critical legislation like the Improving HOPE for
Alzheimer's Act. We must do all we can to ensure the best quality of
care and quality of life for those living with Alzheimer's and the
people who care for them. Again, thank you for the opportunity to share
my story. I look forward to answering any questions you may have.
______
Questions Submitted for the Record to Lauren Kovach
Questions Submitted by Hon. Sherrod Brown
the economic strain of caregiving
Question. When an individual is diagnosed with a disease like
Alzheimer's, generally speaking, unpaid caregivers provide the majority
of daily care. These caregivers can be family members, friends, or
other community members, but regardless of who they are, the vast
majority of unpaid caregivers shoulder a significant economic burden as
a result of taking on these duties.
Experts have estimated that unpaid caregivers contribute as much as
18.5 billion hours of care, which is valued at approximately $234
billion. A recent study showed that 18 percent of unpaid caregivers
went from working full time to only part-time, and 9 percent left the
work force completely, with 6 percent retiring early. With reduced
work, loss of work, or retirement comes increased financial burden,
decreased income, and possibly loss of retirement benefits.
As you and I discussed during the hearing, current Federal law does
not allow for unpaid caregivers to take paid or unpaid leave from their
jobs if the person they are caring for is not a spouse or a child.
These factors leave unpaid caregivers with a mountain of life altering
decisions and too few tools to handle them. Recent efforts by the Trump
administration could entirely eliminate the small set of tools that
remain at the disposal of caregivers, things like SNAP and the ACA.
Ms. Kovach, you were an unpaid caregiver for many years, and now
you are an advocate within that community. In your experience, are the
financial challenges that you experienced while caring for your
grandmother the norm for other unpaid caregivers?
Answer. The financial challenges my family faced are absolutely the
norm for other unpaid caregivers, not just throughout Michigan but
across the entire country. The number one thing I hear from other
unpaid caregivers, especially those taking care of an elder parent or
their spouse, is that they have no choice but to unexpectedly spend
down their retirement savings. These hard working people responsibly
save money in their 401(k)s for their entire careers and it seems that
in this current caregiving era, their retirement accounts will instead
be used to pay for loved ones' long-term care.
Question. Do you believe that reduced access to benefits such as
SNAP and health-care subsidies would hurt not only unpaid caregivers,
but also the vulnerable people that they care for?
Answer. Access to resources and financial assistance is so
important to people living with Alzheimer's and also to their
caregivers. Our country needs to expand the amount of available
resources in order to help the millions of families struggling to
provide unpaid care to their loved ones.
Question. Would expanded access to paid and unpaid leave have
helped you and/or your family while you were caring for your
grandmother? Do you believe they it would help other families who are
currently serving as unpaid caregivers for a family member?
Answer. I did not qualify for FMLA, because my loved one was not a
spouse, child, or parent. That was incredibly frustrating to me because
I shared the same legal address as my grandmother and I was one of her
two primary, and only, caregivers. I was caregiving throughout my
entire twenties, when I should have been working full time,
contributing to my 401(k) and investing money for my future. Instead, I
had to figure out a way to be in two places at one time. Paid, or even
unpaid, family leave would have helped me manage work and my job as a
caregiver.
Paid family leave would have certainly helped my mom, who was
forced into early retirement way before she was ready for it. If she
had paid family leave, she could have continued working and caring for
her Mom, not forced to make the agonizing decision between the two.
It's all or nothing the way the current system is set up, there is no
room for a healthy balance between work and home life when someone
needs 24/7 care. You will hear that caregivers often pass away before
the person living with the disease and I truly believe this is due to
stress, exhaustion and caregiver burnout. My perfectly healthy Mom who
had never been on a single medication her entire life, was almost a
prime example of that. She had four stents put in after Chupe died, and
the cardiologist said she was close to having a widowmaker heart
attack. In all those years, she never once noticed the symptoms because
she was too busy taking care of Chupe.
______
Prepared Statement of Hon. Debbie Stabenow,
a U.S. Senator From Michigan
Thank you, Mr. Chairman, for holding this important hearing today.
Welcome to our witnesses, and thank you for being here.
Everyone in this room knows the numbers: 5.8 million Americans are
living with Alzheimer's today, including one in 10 people over age 65
and 190,000 people in my home State of Michigan. By 2050, it's
estimated that as many as 14 million people nationwide will have the
disease. And Alzheimer's cost the United States $290 billion this year,
and at the current rate, costs will rise to $1.1 trillion by 2050.
But we're not here to talk about numbers. We're here to talk about
people's lives. And we're here to talk about the families who watch
this horrific disease steal their loved ones away, one memory at a
time. We need better treatments. Families need more support. Most of
all, we need a cure.
The good news is that we have made some progress on both fronts.
For decades, research on the brain, which is the most complex organ in
the body, was funded as if it was one of the least important. That has
changed.
Since 2011, Federal funding for Alzheimer's has more than
quadrupled. New researchers are entering the field and moving the
science of Alzheimer's forward. We need to keep up that momentum--
because telling a smart scientist with a great idea today that there
simply isn't the money to fund her research could mean a cure passes us
by.
I've also led the effort to provide more supports to patients and
their families. After a successful bipartisan push, the Centers for
Medicare and Medicaid Services implemented my HOPE for Alzheimer's Act.
This means that Medicare is now providing a doctor's visit to create an
individual care plan for newly diagnosed Alzheimer's patients. The
benefit ensures doctors give a clear diagnosis to patients, including
information about what treatment options and what medical and community
services are available. This is good for patients, families, and the
Medicare program.
Unfortunately, the Centers for Medicare and Medicaid Services did
not conduct an outreach and education campaign to health-care providers
and patients, as called for in my original legislation, so uptake of
the code has been too slow. That's why I have introduced the Improving
HOPE for Alzheimer's Act, cosponsored by 46 bipartisan Senators
including Senators Menendez, Scott, Carper, Cassidy, Cardin, Daines,
Brown, Lankford, Whitehouse, and Cortez Masto on this subcommittee.
Our bill requires HHS to conduct a nationwide campaign to increase
awareness and usage of the care planning visit. HHS could do this right
now, even before we pass the legislation, and we've asked them to do
so.
Building on the care planning benefit, I've also introduced
legislation with Senators Capito, Menendez, and 15 others called the
CHANGE Act, which will encourage timely and accurate detection and
diagnosis using evidence-based tools. Only 16 percent of seniors
receive regular cognitive assessments during health-care check-ups. Our
bill will fix this.
We've made a lot of progress, but we all know there's a lot more to
do. I look forward to our discussion today about how we can work
together to combat Alzheimer's disease.
______
Prepared Statement of Janet Tomcavage, R.N., MSN,
Chief Nursing Executive, Geisinger
Good afternoon, Mr. Chairman and members of the Senate Committee on
Finance Subcommittee on Health Care. My name is Janet Tomcavage, and I
am Geisinger's chief nursing executive. I want to thank the
subcommittee for holding this hearing on an important health-care issue
facing our country--one that Geisinger is invested in: providing the
best possible care for our patients and health plan members while
testing new innovative care models for the future.
Today, I speak to you as a nurse and health-care executive who has
worked at Geisinger in a variety of roles for more than 30 years. I
began my current position as chief nursing executive in August of this
year. Before assuming this role, I was chief population health officer
and have had the honor and privilege to work with seniors for much of
my career. Consequently, this has afforded me the ability to look
critically at how we deliver health care to our most vulnerable
individuals and work together with health care teams to redesign care
for those populations who have multimorbid and debilitating chronic
health conditions.
Geisinger is one of the Nation's largest integrated health services
organizations serving a population of more than 3 million residents
throughout central, south-
central, and northeast Pennsylvania, and in southern New Jersey at
AtlantiCare, a member of Geisinger. Our physician-led system includes
approximately 32,000 employees, nearly 1,800 employed physicians, 13
hospital campuses, two research centers, a school of medicine, and a
580,000-member health plan. The integration of hospitals, clinics,
providers, and a health plan has allowed Geisinger to test innovative
care delivery models, integration, quality, and service while driving
our mission to make health easier for the patients and communities we
serve.
current state
Alzheimer's disease is increasing in incidence, and recent
estimates now indicate that it may be as high as the third leading
cause of death behind only heart disease and cancer. One in 10
Americans over the age of 65 has Alzheimer's. In 2016, over 40 percent
of residential care community residents had Alzheimer's and almost 48
percent of nursing home residents have the diagnosis.
Alzheimer's is the most common form of dementia and identifies the
loss of cognitive functioning as well as behavioral abilities which
leads to challenges with thinking and remembering, agitation,
wandering, and aggression as well as difficulties with simple
activities of daily living including meal preparation, grocery
shopping, driving, or personal hygiene. While medical treatment is an
important component, managing the behavioral symptoms is often a more
complex scope and one of the biggest barriers to care for individuals
with dementia.
I'd like to outline the challenges and opportunities we see that
are needed to improve care of the aging brain including Alzheimer's,
describe some of the innovative programs we've launched at Geisinger
and identify how CMS can remove the barriers to caring for patients and
families dealing with dementia.
First, we know there are several modifiable risk factors for
developing Alzheimer's. If given appropriate time and support, primary
care providers and their teams could more aggressively address those
risks with their older patients and, we believe, reduce the rate of
future memory loss and dementia.
One of the biggest barriers to reduce the risk of developing
dementia is a lack of understanding and education on how to take
action--by the individuals affected and their families as well as
physicians caring for the elderly. Often people will say, ``Oh well,
I'm just getting older,'' thereby minimizing the subtle signs of memory
loss or confusion and not drawing it to a physician's attention. There
is also a fair amount of complacency in the medical community around
treating common conditions such as hypertension, which we know
contributes to physiologic changes that occur in the aging brain.
``Brain-impairing'' medications are another critical area to
address. Older individuals are often more susceptible to the side
effects of medications that are used to treat medical conditions such
as overactive bladder, sleep issues, allergies, mood disorders, COPD,
and Parkinson's disease. And those side effects can often cause
dementia-like symptoms.
Medicines such as anticholinergics actually increase the risk of
developing dementia because of the action of the drug. We need better
education for families and physicians around those risks, and stronger
warning labels. We need better, safer options and drug formulary
management.
In most cases, ``memory and thinking'' challenges are identified
too late. Better education, more time with seniors and reliable
assessment tools are needed in the primary care setting. We need to
include memory and cognition as part of an annual wellness examination
and complete formal memory assessments on our seniors. A focused
assessment that leads to a high-quality diagnosis of memory issues in
the older population needs to become the standard of care.
We need to develop a new series of health-care services that can
``push out'' care to patients and their families where they need it--in
their home. For instance, resources for telehealth services would allow
us to leverage clinical experts, particularly in rural areas, to
appropriately assess, treat and monitor patients who we know are
starting to demonstrate mental decline. In addition, home services can
evaluate the safety and social supports in the home which are critical
components of a comprehensive treatment plan for individuals with
Alzheimer's.
A separate issue from the above clinical improvements, is the
support and reimbursement for caregiving. The health-care system has a
very weak infrastructure to support patients with Alzheimer's and their
caregivers. Services such as transportation, adult daycare, respite
care, in-home assistance, and better advanced care planning lack
funding. These services can keep people safe and in their own homes and
are also needed for respite for the families but are not adequately
reimbursed by Medicare or Medicaid. Payment for unlicensed caregiver
support will be critical to the long-term success of keeping
individuals with dementia in their homes and communities. And in cases
where funding from Medicare does support home aide services, if
families were to choose hospice, the support for caregiver assistance
is no longer available and often the reason that families do not enroll
their loved ones in hospice in the last months of their lives.
Finally, we need funding for research on how to stop these
diseases. Alzheimer's, Parkinson's, and dementia have not had the
investment needed to find treatment options, although they are
prevalent and drive the utilization of costly health resources. The
focus and funding level should be similar to cancer and other
conditions. We need clinical trials that test novel preventative,
symptomatic and curative treatments for memory disorders.
new clinical models at geisinger
I'd like to turn now to what we are doing at Geisinger to address
these risk factors and gaps in caring for patients with the aging
brain. At Geisinger, we are developing a more comprehensive and
integrated approach to senior care. We're testing new delivery models,
including several that were recently implemented over the last year.
Geisinger opened its first Memory and Cognition center led by a
behavioral neurologist surrounded by a team of individuals with a mixed
skill set that complements the needs of the patients served.
Pennsylvania has the second oldest population in the United States--
Florida is number one. In addition, 80 percent of Geisinger's inpatient
hospital volumes are over age 65 and the senior segment of our
population is the only segment growing in our clinical footprint. The
business case is relevant--but not yet self-sustaining. The team is a
multidisciplinary alliance with primary care leveraging neurologists,
pharmacists, case management, nutrition, speech therapy, occupational
therapy and physical therapy. Consultation outreach clinics are also
available in two other locations across our network one day per month.
However, the wait times to get into the center are significant.
Expansion is limited due to inadequate funding for the non-reimbursed
but important services such as care management, exercise therapy, etc.
Anecdotal outcomes are very evident and clinical trials are underway to
test the Center's impact, but no current impact outcomes are yet
available.
Another newly implemented care model is Geisinger at Home. For our
highest-risk patients, those with multiple and complex conditions often
including dementia, we send a team of health-care clinicians into
targeted patients' homes. Physicians, advanced practitioners, nurses,
pharmacists, nutritionists and mobile health paramedics provide a full
complement of care and service right in their home as needed. These
services provide thorough clinical and social assessments, optimized
treatment plans, and acute care services directly in the home in an
effort to avoid unnecessary emergency department and hospital
utilization. In addition, the team works closely with the patient and
family to understand the patient's goals of care specifically around
advanced illness and end of life care.
We have seen almost 5,400 patients in Geisinger at Home, and the
results have been incredible. Families who have been overwhelmed by
managing their loved one's complex care are extremely thankful for the
program. We've seen a decrease in hospital admissions for patients in
this program by 35 percent. And emergency department utilization is
also down about 20 percent. The longer patients are in the program, the
more significant impact we're seeing. For our Medicare Advantage
members, we have realized about a $500 PMPM improvement in the first
year of the program.
And finally, our most recent implementation is a new approach to
primary care called 65Forward--a new primary care model implemented in
August of this year. 65Forward is primary care practice that is
dedicated only to the care of seniors--individuals over the age of 65.
This program was developed in conjunction with our health plan for
Medicare Advantage members.
In addition to regular primary care visits, these locations will
focus on coordinated annual wellness visits, comprehensive memory and
cognition testing, functional status and mental health assessments and
other services to meet the individual needs and maintain their health
and wellness. The practices include nursing support, nutrition
resources, and an on-site pharmacist and wellness coach. They also
support activities that are proven to contribute to health and
wellness, including exercise classes and equipment, cooking classes and
social activities such as knitting, crafts and book clubs.
Since the physicians in Geisinger 65Forward see only Medicare
patients, we have decreased the number of patients that a primary care
provider would normally see in his/her panel to 450 (as opposed to
2,000) to ensure they have the time needed for these seniors. Because
the practices just opened in late summer, we don't yet have outcomes to
share from this delivery model. We will be evaluating these services by
looking at total cost of care, and quality outcomes including both
preventative and chronic care measures.
Caring for those with these progressive neurological conditions and
finding better answers is a burden and responsibility shared by our
healthcare system, government and private funders, and American
families. I believe the most urgent need and the biggest opportunity is
funding to ease the burden of families caring for their loved one with
declining health and Alzheimer's. New payment models are needed to
support caregiving services to help keep people safe and in their homes
for as long as possible.
Second, we need funding to support more comprehensive education and
tools for primary care providers as well as for the support of in-home
therapies. Early detection, screening, and intervention can make a
difference. We must address the lack of research into the causes and
treatment of dementia with the goal to avoid and delay the effects of
the aging brain.
With the right focus and attention we can make a difference in the
trajectory of these devastating neurologic conditions and the toll they
are taking on our loved ones and communities across the country.
I will leave you with a simple example that is reflective of what
can be easily done. Patricia is an older woman who came to the Memory
and Cognition center for the first time with a diagnosis from her
primary care provider of Alzheimer's disease. On her screening with the
commonly used Mini Mental State Examination (MMSE) she was 23 out of
30, consistent with a mild dementia level of impairment. On the initial
review, there was one medication she was taking that caused concern--a
low-dose benzodiazepine that she took at bedtime every night for sleep.
The family indicated that she had been on that medication for years and
it couldn't possibly be the cause of her problems. Her neurologist
shared that he couldn't cure Alzheimer's disease, but likely could get
her a good night's sleep without the use of this medication. Though
skeptical, they took the Memory and Cognition program's advice on
establishing good sleep habits and use of melatonin. When the patient
came back for follow-up, she reported that she was sleeping better than
she had in years, and that she felt more like her normal self. When
rescreened with the MMSE she now scored a 29 out of 30, consistent with
a more normal level of performance. Our lead neurologist has shared
that Geisinger's Memory and Cognition unit, simply by transitioning
people from high risk medications to better targeted therapies, has
``cured'' more people's memory and thinking problems than anything else
he has seen in his career.
Geisinger is committed to being a resource and an engaged partner
in the work supporting physical and mental wellness in seniors. Thank
you again for the opportunity to provide you with our thoughts on this
critical health issue. I am happy to answer any questions you may have.
______
Questions Submitted for the Record to Janet Tomcavage, R.N., MSN
Questions Submitted by Hon. John Thune
Question. Thanks for your testimony about how we need to get care
out to patients where they need it. South Dakota has led the way in
advancing telehealth and remote monitoring to help seniors stay in
their homes and out of more costly settings of care. We're also using
it to connect rural providers with support in providing specialty care.
The inclusion of telehealth as a supplemental benefit in the
CHRONIC Care Act was an important step in promoting access to care
through telehealth. How are health plans and health systems taking
advantage of telehealth as a new benefit for MA patients with
Alzheimer's? Are there still any barriers to uptake policymakers should
be aware of?
Answer. I think that many MA plans are ready to reimburse but
health-care systems are still working to leverage this technology in a
reliable way. Many health-care systems are implementing telehealth
services from hospital to hospital or from a primary care provider
office to a specialist office but what remains needed is to leverage
technology directly from patient homes into specialty providers
offices. Health-care systems are still ``figuring out'' how to most
effectively deliver those services as the availability on in-home
technology is often too complicated for patients to do on their own. At
Geisinger we are using community health workers to facilitate the use
of in-home telehealth services.
Question. Along the same lines, I have long supported the
principles of value-based insurance design to help plans meet the needs
of chronically ill patients, like those with Alzheimer's.
I recognize the CHRONIC Care Act's provisions on supplemental
benefits for items that are not primarily health related
(transportation, home care, home modifications) have only been in
effect for a short time, but is there anything policymakers should
consider to further promote plan uptake of this flexibility that could
help Alzheimer's patients?
Answer. The challenge that many families face is the need for
ongoing services such as in-home aide services. Unlike home
modifications or even transportation, in home care services are
generally needed daily and often for a long period of time. This
service can be costly and often not affordable for most families. MA
plans are beginning to provide services, but the amount of support
needed is still not affordable for families and we have a long way to
go to improve this level of support that is clearly the biggest need.
______
Questions Submitted by Hon. Benjamin L. Cardin
using primary care to reduce the risk of dementia
Question. According to the Alzheimer's Association, Americans
living with Alzheimer's disease is projected to more than double by
2050--from 5.8 million Americans living with Alzheimer's to nearly 14
million Americans. Furthermore, by 2050 the number of baby boomers is
projected to rise to 88 million Americans.
Since those affected by Alzheimer's disease is expected to grow, we
must expand and prepare our health-care workforce to take care of these
patients as well as support families and caregivers.
I am very interested in your comments about how to engage primary
care physicians with their patients to reduce the risk of developing
dementia. You mentioned in your testimony that if given appropriate
time and support, primary care providers and their teams could more
aggressively address risk factors for developing Alzheimer's.
What are your recommendations for improving how providers reduce
risk of dementia in primary care settings?
Answer. Adding an assessment process to the annual wellness visit
is one way to help prioritize this assessment for PCPs. I also think a
patient awareness campaign--where we educate the public much like we
have done with heart disease or stroke or drug abuse. Put knowledge in
the hands of the consumer and they will ``force'' providers to address
management of things like hypertension or assessing early in our
seniors.
Question. What are the current barriers you face in implementing
these changes? How can Congress be helpful?
Answer. I would suggest again adding in a short assessment
requirement as part of the annual wellness visit.
______
Questions Submitted by Hon. Sheldon Whitehouse
Question. In 2020, the Center for Medicare and Medicaid Innovation
(CMMI) will implement a care model for beneficiaries with significant
chronic illness(es), who have high utilization rates and fragmented
care. Through the Seriously Ill Population (SIP) model, CMS will
temporarily raise provider payment rates for beneficiaries in the
program while providers coordinate care and stabilize patients.
What is your assessment of the SIP model?
Answer. I think the potential for the model is exciting. The key
will be where the care coordination investment is made. Naturally,
dollars typically go to primary care but for some subsets of the
population with extremely advanced illness--the PCP is not always the
lead. For example, for patients with advanced heart failure, connecting
services to the cardiologist might make sense or in patients with
chronic lung disease the role of pulmonary specialists is critical.
Same would go for end stage renal disease. So, allowing a model that
encompasses home based services that connect to primary and specialty
care might be a better solution for these very complex patients who in
many cases are declining, increasing in frailty and the need for home-
based services.
Question. In what ways could SIP improve care delivery for
beneficiaries with chronic illnesses?
Answer. If the services truly allow for care management/care
coordination services that support patients across both primary and
specialty care in different delivery models, then this will be helpful.
The other remaining gap that poses significant gaps in the ability to
help individuals stay in their home is the lack of support for in-home,
but non-medical services. Aide services for bathing, food preparation,
lifting, mobility, night time oversight etc. are very much needed to
help keep individuals in their homes and out of hospitals and skilled
nursing facilities. Much of the acute utilization is not driven by
medical exacerbations but rather by caregiver exhaustion or poor
support to manage their condition in the home. This is very evident in
the hospice benefit. Many individuals turn down the hospice benefit
because it does not help with daily support that many patients and
families need as the patient declines.
Question. Do you see any areas for improvement to the CMMI
proposal?
Answer. As above.
______
Questions Submitted by Hon. Maggie Hassan
Question. The Office of Disease Prevention and Health Promotion at
HHS has stated that Alzheimer's disease and other forms of dementia are
more frequently undiagnosed among patients living in rural communities.
As we already know, even those who receive a diagnosis face
significant hurdles when it comes to accessing care.
How can Congress work to ensure that those living with dementia in
rural communities are able to receive a more timely diagnoses?
Answer. I believe adding the assessment for dementia in the annual
wellness visit is one way to support earlier diagnosis. I also believe
that we need to develop a community awareness campaign much like has
been done around heart disease, breast cancer and other common
conditions. Using public service avenues to educate families about the
symptoms to bring to their loved one's primary care providers.
Question. How can we then ensure that these patients have adequate
access to follow-up care and support services?
Answer. Many of the new care models that CMS is supporting, and
testing should help improve this work. Telehealth is another avenue
that needs to be expanded as it is a cost-effective way to monitor
directly in patient's homes to provide ongoing assessment of the
individual's progress.
______
Questions Submitted by Hon. Catherine Cortez Masto
Question. BOLD will support the development of care planning
services for people living with Alzheimer's; Medicare covers those
services, and we have to ensure people can take advantage of them. Now
that Medicare reimburses providers for care planning, what are the
barriers that families run into in accessing those services?
Answer. The biggest gap that I see is that CMS has brought forward
so many new billable services and I believe that many providers are not
aware of these opportunities. Secondly, access to Alzheimer's COEs is
limited and wait times are extremely long.
Question. One of the recommendations in the National Plan to
address Alzheimer's is to explore the effectiveness of new models of
care for people with Alzheimer's disease. Have you seen models that are
promising in addressing the needs of Alzheimer's patients? Does
Congress need to push CMMI to develop Alzheimer's specific models?
Caregivers are critical to a patient's outcomes; how can we account for
that in payment models?
Answer. Geisinger has been testing new models of care that support
more comprehensive care of individuals with serious chronic illnesses
including Alzheimer's. Memory Centers are key services, but the number
of such services are not enough. Developing models such as focused
senior centers like Geisinger's 65Forward that will support a
comprehensive primary care model only for seniors is one such model. We
are early in the delivery of this model so outcomes are as of yet
unknown. Geisinger at Home supports a comprehensive in-home care
delivery model that has demonstrated an almost 38-percent reduction in
admissions and 20-percent reduction in ED utilization. Both models need
to continue to be studied and tested. And finally, caregivers are at
the foundation of a successful model. None of our payment models really
support this need. The recent changes that allows Medicare Advantage
plans to offer non-medical services will only skim the service. Some
families simply do not have the resources to provide in-home care and
supervision for individuals with Alzheimer's. Home support services
(non-licensed caregivers) are in my opinion the most important need in
providing support to individuals with Alzheimer's. Most of these
patients need supervision and help with activities of daily living--we
need to assure their safety. They do not need nursing or licensed care.
And for families who do provide the direct care--having respite care
periodically or even on a regular basis to help them continue to manage
their loved one's needs but also allow the family to ``get away'' is
important. Recognizing the need for non-licensed ``care'' support is an
vital component of what CMS and Congress needs to continue to address.
______
Prepared Statement of Hon. Patrick J. Toomey,
a U.S. Senator From Pennsylvania
Welcome to the Senate Finance Subcommittee on Health Care hearing:
``Alzheimer's Awareness: Barriers to Diagnosis, Treatment, and Care
Coordination.''
It is my pleasure to welcome four witnesses today for an important
conversation on challenges with treating and caring for Alzheimer's
patients and the emotional toll this disease takes on caregivers.
Alzheimer's disease is really in a category of its own:
One in 10 senior citizens has Alzheimer's disease;
According to the Alzheimer's Association, in 2019 alone this
disease and other related memory disorders are estimated to cost $290
billion in health care, long-term care, and hospice services;
The majority of these costs--about two thirds--are borne by
the Medicare and Medicaid programs; and
Worst of all by far, there is no cure.
With November being National Alzheimer's Disease Awareness Month, I
want to briefly share a story about an individual with Alzheimer's who
candidly shared his experience with thousands of Pennsylvanians. Bill
Lyon, a beloved sports writer at The Philadelphia Inquirer, passed away
on Sunday at the age of 81, after a hard-fought battle with Alzheimer's
disease.
Bill wrote many columns detailing his 6-year battle with the
disease. In one column, he described it as an insidious, relentless
and, ``a gutless coward who won't come out and fight. Instead, he lies
in ambush in my brain, and the only way I can put a face on him is to
look in the mirror.'' I'd like to ask unanimous consent to enter a
couple of articles detailing his battle into the record without
objection.
Like Bill and his family, there are millions of Alzheimer's
patients and their loved ones who know this disease all too well. I
know first-hand just how devastating it is to families. My own father
and grandmother passed away after years of struggling with Alzheimer's.
Finding a cure for this disease must remain a top priority, and I
am optimistic that a cure will be discovered in my lifetime. That said,
progress has been very slow. Despite billions of dollars in public and
private investment, Alzheimer's patients have very limited options.
Just a handful of medicines are available, and they only slightly
reduce the symptoms of the disease. For this reason alone, Congress
must not undermine future investment by the private or public sector in
their efforts to find cures by upending drug research and development.
While finding a cure is one challenge, access to necessary long-
term care services is another. Medicare offers very limited coverage
for long-term care needs. Now if you're very wealthy, these services
are easily affordable, and for very low-income individuals, these
services are available through Medicaid at little or no cost. But the
average American approaching retirement is not at all likely to have
nearly enough cash savings to cover the average cost of a typical long-
term care event, such as the need for nursing home care or in-home care
due to the onset of a chronic illness. A large number of middle-class
families face financial ruin at the hands of Alzheimer's.
To guard against extraordinarily high costs, long-term care
insurance can be a viable option. Yet only 17 percent of adults
actually own such a policy. Many families without long-term care
insurance find premiums to be unaffordable, but insurers have had to
charge higher prices due in large part to the longer-than-expected life
expectancy of beneficiaries with Alzheimer's disease.
One way to address high premiums is to expand the risk pool by
attracting healthier or younger enrollees. Congress ought to consider
legislation that makes it easier for families who are planning ahead to
buy long-term care policies. Toward that end, today I released a
discussion draft of legislation that would empower individuals to use
their retirement plans to buy long-term care policies on a tax-free
basis. Today, some individuals can use their 401(k)s to buy life
insurance; similar treatment ought to be given to long-term care
insurance. I hope to gather additional feedback on this idea and to
introduce formal legislation soon.
I look forward to hearing from our witnesses and hope to work on a
bipartisan basis to reduce the barriers that we discussed today.
______
From The Philadelphia Inquirer, November 17, 2019
Bill Lyon's Fight With Alzheimer's: He Never, Ever Quit--Perspective
Jessica Griffin/Staff
Legendary Inquirer sports writer Bill Lyon died at age 81 on Sunday.
In 2016, Lyon stunned readers by revealing his Alzheimer's diagnosis.
Over the next two years, Bill wrote candidly about his illness,
nicknaming it Al--or in feistier moments, That Rat Bastard. He
chronicled what it was like to move out of his multi-story home and
into a place with no steps, a necessary adjustment as he got sicker. He
shared anecdotes about using a cane and working with therapy dogs.
``My intent is to write columns about my dementia,'' Lyon wrote in
2016. ``My hope is that the columns will be cathartic and perhaps be of
some help to anyone else who's going down this same long and winding
road. . . . My intent is to write until . . . well, until I can't.''
Eventually that day came and Lyon shared his struggles with writing--
both the mental challenges from increased writer's block, and the
physical impediments like tremors that shook his hands so much he
couldn't type. But even after that, Lyon continued to share stories,
dictating columns to Inquirer editors who visited him.
What stuck with readers most about Lyon's story was his fighting
spirit. In his inaugural Alzheimer's piece, he wrote, ``You wake up one
morning and something is missing and you're not sure how or what. So
what do we do? Resist. And persist. And never, ever, ever give in.''
Lyon didn't give up, even after the tragic loss of his beloved wife and
``best pal'' Ethel in 2018.
In his last column for the Inquirer, Lyon wrote of his sincere hope
that a cure for Alzheimer's would be found so that others who had been
diagnosed with the disease could eventually say, ``Up yours, Al!''
My Alzheimer's fight: Never, ever quit
Al is an insidious and relentless little bastard, a gutless coward who
won't come out and fight. Instead, he lies in ambush in my brain, and
the only way I can put a face on him is to look in the mirror.
``So what do you want to do?'' the man in the white lab coat asked.
``I should very much like to kick Al's ass,'' I said.
My Alzheimer's fight: Adjust, adapt, push on
With your tremors tap-tap-tapping at warp speed, try to tie your
shoelaces. Thank you, whoever invented Velcro.
Of course that still leaves the socks. And the assumption that you have
the right foot where the right foot goes. And the left foot--look, I'm
happy if I can average three for 10. That gets you in the Hall of Fame,
right?
My battle with Alzheimer's: Mind, body, meds
I awaken each morning--thank you for that--and gingerly swing my legs
over the side and down to the floor. It sounds like the Gunfight at the
OK Corral. Slowly I stand upright, and this sound is like milk being
poured on cereal . . . snap . . . crackle . . . pop. . . .
And so another day is launched and it sure does beat the alternative.
What, I inquire of my body, new surprises do you have in store for us
today?
My Alzheimer's fight: Shaping other minds
How come I can remember the lyrics from a long-forgotten ballad, but I,
for the life of me, can't remember what I had for lunch?
There's long-term memory and medium-term memory and the ultimate
indignity, the dreaded short-term memory, which involves the marching
from room to room, fuming and venting, and where-oh-where are my &*#@
glasses, and the answer, of course, is on top of your head, you poor
pathetic wretch.
Thanks, and what's your name again?
My battle with Alzheimer's: Finding my way back
I walked on, panic-stricken, past banks and funeral parlors and
schools, and looked up to find myself standing in the middle of a
median strip on West Chester Pike with traffic roaring past on both
sides. I had no idea how I got there. It was as though I had been
sleepwalking.
Bill Lyon: In battle against Alzheimer's, giving ground only grudgingly
All in all, I have good days and some not-so-good days. Sometimes I can
dress myself and sometimes I can't. Sometimes I can read one paragraph
all the way through and sometimes I can't. Sometimes I get discouraged
and sometimes I--no, I won't give in.
I do not delude myself. Al is a killer, but I try at every turn to cut
him off and stomp on his mangy butt. I'll go kicking and screaming all
the way, hoping this journal will be of some comfort and inspiration to
those who have been diagnosed and to those who care for them.
Bill Lyon: Secret weapon against Alzheimer's
Of all the meds and all the walking and all the therapy, what keeps me
going, always so hard and so fast, what makes me want to stick around
for more, stands at the top of a hill and calls to me: ``Come on, Pop-
Pop . . . Come on. . . .''
Packing up a house full of memories while battling Alzheimer's
The place in which we have lived the last 42 years . . . the place in
which we have raised three generations . . . the place into which we
have stuffed a basement and a garage and an attic and a backyard
storage shed with . . . with, well, good grief, and did we ever throw
anything away?
But we will be now, because we're leaving it.
For ever.
Each day the pile of discards grows higher.
Coming home, to the land of no steps
One step . . . one lousy little step . . . one %&#%$!!!! step, and I
ended up ingloriously sprawled on a surface of unforgiving linoleum
that had been laid over concrete that you could build an interstate on.
I noticed I was leaking blood from my left knee, which was swelling
into a rainbow of colors and was sending a rather urgent message to my
brain, to wit: ``Damn but this hurts.''
I couldn't move.
I tried to yell, but all that I could coax out was a pathetic squeak.
How humbling. How unmanly. I was living a TV commercial. I was also
hearing that familiar mocking of the rat bastard Al, my Alzheimer's
nemesis: ``What's wrong, Candy Ass? Can't get up?''
Bill Lyon: Time to shine a light on Alzheimer's
What we don't know we fear and we lock up and throw away the keys. So
for many of my generation there has been a stigma attached to whatever
that is in the basement . . . and never dare speak.
It's time to shine a light on Al. So now we mobilize, starting with
public awareness. There are more than five million of us out there, and
the toll is rising, just as our population rate rises. Remember that
Alzheimer's is called the Family Disease because in virtually any
household there are apt to be patients and those who care for them.
Bill Lyon: Still lessons to learn while fighting Alzheimer's
A confession: The cane cast an ominous shadow of dread over me--I saw
it as a symbol of impending doom, a fate hopelessly sealed.
There is, after all, a progression of descent, isn't there? Isn't this
the cycle of decline?
First a cane.
Then a walker.
Then a wheelchair.
Then. . . .
But not me. No sir, no damn way. I had made a silent vow when the
Alzheimer's first hit, a vow of defiance. You'll not be getting me off
my legs. I'll stand 'til the very end.
Ghostly visits and the power of hugs
Can't say for sure when I softened. But I think it was around the
arrival of Al. Alzheimer's brings with it sorrow and misery and before
I knew it I was offering solace and comfort to those whose lives he
touched.
We all, every one of us, has a load to carry, and while a hug may seem
a trifle, it has remarkable recuperative powers.
And isn't it deliciously ironic how this show of affection just fries
Al?
Bill Lyon: Alzheimer's chips away at your ability to communicate
I taught myself how to type as a sophomore in high school in 1955. You
know, two fingers, hunt and peck. I got to be pretty good, and pretty
fast, which pleased me greatly. I used to be able to make a typewriter
sound like a machine gun.
But some months ago I found it was taking me longer to write. Then
pretty soon I could barely put pen to paper. First, the paragraphs took
a lot longer, and then the sentences. I couldn't get it back. It's
writer's block, and we all know what that is. But this was different
because it was not only mental but physical. Literally physical. I
couldn't lift my hand up off the desk.
Life after Ethel, and why I'll never, ever give in to Alzheimer's
My wife is gone now, and I struggle with what I am supposed to do.
Everyone grieves in their own way. There is no manual for grief. What
you should do, I am told, is to go ahead and mourn. Then celebrate the
good times, and we had a lot of those.
So I'm going to resume my crusade against Alzheimer's in her memory,
and remember the mantra we shared: resist, persist and never, ever give
in.
How two Bernese mountain dogs are helping me battle Alzheimer's
When Darla and Harvey make their rounds, Darla instinctively goes to
the walkers and wheelchairs, while Harvey poses for pictures.
Meanwhile, Al mutters and stews. For all the meds that are forced on
us, for all the surgeries and rehab, none are quite as soothing as a
dog's nuzzle.
We are tethered to each other, man and dog. They reach the deepest part
of us.
Fighting to the finish for an Alzheimer's cure
Give us time, the researchers say. Funny thing is, that's all we've
got.
You know the drill by now: Resist. Persist. Never, ever give up.
In my mind, I play games with the Cure. I envision a lab technician
drops a beaker of some exotic drug, the glass shattering on the floor,
splashing behind a desk, there to merge with another drug. Eureka!
If only it were so easy.
Additional articles by Bill Lyon on his fight with Alzheimer's disease
can be found at the following link: https://www.inquirer.com/news/bill-
lyon-alzheimers-philadelphia-inquirer-sports-writer-20191117.html.
______
Communications
----------
Alzheimer's Foundation of America
322 Eighth Avenue, 7th Floor
New York, NY 10001
(866) 232-8484
Fax: (646) 638-1546
https://alzfdn.org/
Chairman Toomey, Ranking Member Stabenow, and Members of the Senate
Finance Subcommittee on Health:
On behalf of the Alzheimer's Foundation of America (AFA), a nonprofit
organization whose mission is to provide support, services and
education to individuals, families and caregivers affected by
Alzheimer' disease and related dementias nationwide, and fund research
for better treatment and a cure, we commend the Subcommittee for
honoring National Alzheimer's Awareness Month by holding this hearing
on Alzheimer's disease to raise awareness and highlight obstacles in
diagnosis, treatment and care that impacts the quality of life for the
millions of American families who live with dementia.
Alzheimer's Disease and Its Impact
Alzheimer's disease is the sixth leading cause of death in the U.S.\1\
and the only cause of death in the top 10 with no cure or treatment to
reverse or slow its progression. It is an irreversible, progressive
brain disease that slowly destroys memory and thinking skills, and
eventually even the ability to carry out the simplest tasks. As our
population ages, incidences of the number of persons affected by this
insidious brain disorder are expected to double by 2060 according to
the Centers for Disease Control and Prevention (CDC).\2\
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\1\ While the Centers for Disease Control and Prevention (CDC)
lists Alzheimer's disease as the sixth leading cause of death in the
U.S. (see www.cdc.gov/nchs/fastats/leading-causes-of-death.htm), recent
studies cite that over 500,000 Americans a year die as a result of
dementia, making Alzheimer's disease the third leading cause of death
in the U.S. See ``Contribution of Alzheimer disease to mortality in the
United States,'' James, Bryan Ph.D. et al., Neurology (March 5, 2014)
(www.neurology.org/content/early/2014/03/05/WNL.0000000000000240).
\2\ Matthews, Kevin A. et al., ``Racial and ethnic estimates of
Alzheimer's disease and related dementias in the United States (2015-
2060) in adults aged 65 years,'' Alzheimer's and Dementia: The Journal
of the Alzheimer's Association, Volume 15, Issue 1, 17-24 (2018).
Individuals with Alzheimer's disease use a disproportionate amount of
health care resources; for instance, they are hospitalized two to three
times as often as people the same age who do not have the disease.\3\
Similarly, nearly half of all nursing home residents have Alzheimer's
disease.\4\
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\3\ ``Caregiving Costs: Declining Health in the Alzheimer's
Caregiver as Dementia Increases in the Care Recipient,'' National
Alliance for Caregiving, November 2011 (www.caregiving.org/pdf/
research/Alzheimers_Caregiving_Costs_Study_FINAL.pdf).
\4\ See ``Comparison of Characteristics of Nursing Homes and Other
Residential Long-Term Care Settings for People With Dementia,'' AHRQ
Publication No. 12(13)-EHC127-EF (www.
ncbi.nlm.nih.gov/pubmedhealth/PMH0050127/) (approximately 45-67% of all
nursing home residents have dementia).
Overall, health costs for persons with dementia are substantially
larger than those for other diseases, and many of the expenses are not
covered by private or public health insurance programs.\5\ This places
a large financial burden on families, and these burdens are
particularly pronounced among the demographic groups that are least
prepared for financial risk.\6\
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\5\ Kelley A.S., McGarry K., Gorges R., et al. ``The Burden of
Health Care Costs for Patients with Dementia in the Last 5 Years of
Life.'' Ann Intern Med. 2015;163:729-736 (October 27, 2015) (https://
doi.org/10.7326/M15-0381).
\6\ See Kelley A.S., Ibid. ``Average total cost per decedent with
dementia ($287,038) was significantly greater than that of those who
died of heart disease ($175,136), cancer ($173,383), or other causes
($197,286) (P < 0.001). Although Medicare expenditures were similar
across groups, average out-of-pocket spending for patients with
dementia ($61,522) was 81% higher than that for patients without
dementia ($34,068); a similar pattern held for informal care.''
In addition to costs of care, there's an additional human toll. For
each person with Alzheimer's disease, there are multiple caregivers who
respond to 24/7 needs related to activities of daily living. Caregiving
duties often fall on family members who are overwhelmed both
emotionally and physically, and whose health and well-being often
suffer as they fulfill this role.\7\ There is a higher incidence of
sickness and mortality among Alzheimer's disease caregivers, compared
to other caregivers.\8\ In 2011, family caregivers provided an
estimated 17.4 billion hours of unpaid care, a contribution to the
nation valued at over $210 billion.\9\
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\7\ ``Caregiving Costs: Declining Health in the Alzheimer's
Caregiver as Dementia Increases in the Care Recipient,'' National
Alliance for Caregiving, November 2011.
\8\ Ibid.
\9\ A. Stevens, Ph.D., ``Next Steps in Family Caregiving Research:
Interventions Designed for Impact'' (www.nia.nih.gov/sites/default/
files/alan_stevens_0.pdf).
Finally, there is no drug or modifying treatment to stop or slow the
progression of dementia. Four decades of intense research efforts have
failed to yield any effective pharmaceutical interventions for
Alzheimer's disease with a clinical trial failure rate of nearly 99.6%
(compared to a 20% success rate for cancer drugs).\10\
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\10\ Z.S. Khachaturian, Ph.D., ``40 Years of Alzheimer's Research
Failure: Now What?''. MedPage Today (September 13, 2018) (https://
www.medpagetoday.com/neurology/alzheimersdisease/75075).
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Barriers to Diagnosis
Several barriers remain in place that make it difficult for physicians
to diagnose dementia. A study examining the literature around these
obstacles identified six common themes \11\ including lack of support
for patients, caregivers, and physicians, time and financial
constraints, stigma, diagnostic uncertainty, and concerns around
disclosure of the diagnosis.\12\ Further, a 2006 editorial in the
Journal of the American Geriatric Society estimated that missed
diagnoses are greater than 25 percent of the dementia cases and may be
as high as 90 percent.
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\11\ D. Judge, J. Roberts, R. Khandker (et al.), ``Physician
Perceptions about the Barriers to Prompt Diagnosis of Mild Cognitive
Impairment and Alzheimer's Disease,'' International Journal of
Alzheimer's Disease, vol. 2019, Article ID 3637954, 6 pages, 2019,
https://doi.org/10.1155/2019/3637954.
\12\ Id.
Accurate and timely diagnosis can provide greater opportunities for
people with Alzheimer's disease to participate in clinical trials. New
drug therapies currently being tested focus on stopping progression in
the early stages of the disease, requiring trial participants to have
low to mild cognitive impairment. Cognitive screening can help identify
this pre-symptomatic population who will be essential to accelerate
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promising drug development.
Early detection will allow individuals to adopt prevention strategies
that help slow or plateau progression of dementia.\13\ Lifestyle
activities like increasing aerobic exercise, maintaining a
``Mediterranean'' diet, controlling hypertension and engaging in
cognitive ``brain'' games have been shown to decrease cognitive decline
and dementia by increasing an individual's cognitive reserves.\14\
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\13\ Crous-Bou M., Minguillon C., Gramunt N., Molinuevo J.L.
``Alzheimer's disease prevention: from risk factors to early
intervention.'' Alzheimer's Res Ther. 2017;9(1):71. Published September
12, 2017. doi:10.1186/s13195-017-0297-z.
\14\ Stern Y. ``Cognitive reserve in ageing and Alzheimer's
disease.'' Lancet Neurol. 2012;11(11):1006-12.
Given the obstacles to early detection, a simple, inexpensive and non-
invasive cognitive screening should be promoted and encouraged. AFA
recommends that Congress expand memory screening efforts and promote
the benefits of memory screening and early detection of Alzheimer's
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disease. To accomplish this, we urge Congress to:
Fund the BOLD Act initiatives at CDC which will go to increasing
education of public health officials, health care professionals and the
public on Alzheimer's, brain health and cognitive health disparities.
Increase physician and public awareness of Medicare's annual
wellness visit and its cognitive screen component, as well as its
reimbursement.
Incentivize private insurers to reimburse health professionals
for conducting cognitive screens of older Americans or those who have a
genetic link--or other predisposition (i.e., play contact sports)--for
dementia.
Barriers to Treatment
In 2012, Congress approved the National Plan to Address Alzheimer's
Disease which sets a goal for preventing and effectively treating
Alzheimer's disease by 2025. AFA is grateful that Congress, in the past
several budget cycles, has honored this commitment by approving
historic increases in federal funding for clinical research into a cure
for Alzheimer's disease. Appropriations for the National Institute on
Aging (NIA), the nation's leading federal funder of Alzheimer's disease
research, has increased from just over a billion dollars in 2012, to
over three billion in fiscal year 2019.
This influx in funding has allowed NIA to fund new and innovative
targets in the hopes of finding a cure. These new targets include
inflammation, tau proteins, neurotransmitters, genetics, hypertension
and growth hormones to name a few. Failure to provide such an
investment will leave promising research unfunded and further increase
the timeline to get us to a cure or modifying treatment.
In addition to funding, the lack of an Alzheimer's disease
infrastructure will pose as a barrier to treatment should one or more
therapies become available. A substantial number of existing cases with
mild cognitive impairment (MCI) would have to be screened, diagnosed,
and then potentially treated as quickly as possible when a therapy
first comes to market, in order to prevent progression to Alzheimer's.
A 2018 study found the infrastructure for Alzheimer's disease to be
lacking and that the US health system was unprepared and currently
insufficient to handle the expected caseload if there was a cure.\15\
According to the study, the most pressing constraint is limited
capacity of specialists to evaluate and diagnose patients, but access
to imaging to confirm Alzheimer's disease and to infusion centers to
deliver the treatment would also contribute to waiting times.\16\
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\15\ Liu, Jodi L., Jakub P. et. al., ``Assessing the Preparedness
of the U.S. Health Care System Infrastructure for an Alzheimer's
Treatment,'' RAND Corporation, 2017 (www.rand.org/pubs/
research_reports/RR2272.html).
\16\ Ibid.
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To alleviate these barriers to treatment, AFA recommends that Congress:
Continue robust investment into research of dementia at the
National Institute of Aging (NIA) and other federal health agencies.
Invest in Alzheimer's disease infrastructure which includes
promotion and expansion of a geriatric workforce, increased awareness
of brain health and access to imaging and other tools to aid in
diagnosis and treatment.
Barriers to Care Coordination
Caring for a loved one with Alzheimer's disease or a related dementia
poses enormous and life-changing challenges for families and
caregivers. Person-centered, coordinated care delivery models and smart
investments in supports and training will extend limited resources by
lowering overall costs of care for a person with Alzheimer's disease.
Coordinated care delivery that avoids unnecessary hospitalizations and
provides tools to care partners that can delay nursing home placement
are necessary policy changes that will allow Americans to provide
quality care until such time as clinical research discovers a cure or
effective treatment for this fatal brain disorder.
According to an AARP study, despite a growing evidence that person-
based coordinated care models coupled with dementia caregiver
supportive services are effective, few of these care models have been
implemented into everyday practice.\17\
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\17\ AARP Public Policy Institute, ``From Research to Standard
Practice: Advancing Proven Programs to Support Family Caregivers of
Persons Living with Dementia'' (September 2017) (www.aarp.org/ppi/info-
2017/from-research-to-standard-practice.html).
AFA urges Congress to call on federal health programs to fully adopt
person centered care coordination models and caregiver support
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programs, including:
Medical homes for persons living with dementia--Medical homes
deliver care that is coordinated, comprehensive, efficient and
personalized. Practitioners manage all aspects of care, not just
treatment.\18\ Coordinated care prevents unnecessary services and
reduces overall health care costs by targeting the precise needs of the
person.
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\18\ The Patient-Centered Primary Care Collaborative, Joint
Principles of the Patient-Centered Medical Home (February 2007).
Independence at Home (IAH)--The IAH model uses primary care
teams led by physicians or nurse practitioners to deliver timely, in-
home primary care to Medicare beneficiaries with multiple chronic
illnesses and functional impairments, including those living with
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dementia.
Program of All-Inclusive Care for the Elderly (PACE)--PACE
focuses only on seniors, who are frail enough to meet their State's
standards for nursing home care. PACE features medical and social
services that can be provided at an adult day health center, home, or
inpatient facility. For most people, the service package allows them to
continue living at home while receiving services.
The REACH VA Program--is designed to assist caregivers with
challenges such as self-care; problem solving; mood management; asking
for help; and stress management. Caregivers are matched with a trained
and certified REACH VA Program Coach who provides individual sessions
where the caregiver receives support, training and best practices.
AFA appreciates the opportunity to provide some recommendations that
could help overcome the current barriers to the diagnosis, treatment
and care coordination of Alzheimer's disease. AFA stands ready to
assist 'you and the Committee in any way to advance these and other
proposals that will provide optimal care, while creating efficiencies
that lower costs of care without compromising access or quality. Feel
free to contact Eric Sokol, AFA's senior vice president of public
policy at: esokol@alzfdn.org if you have any questions or need further
information.
______
American Council of Life Insurers and
National Association of Insurance and Financial Advisors
Statement for the Record of Susan K. Neely, President and Chief
Executive Officer (ACLI), and Kevin M. Mayeux, CAE, Chief Executive
Officer (NAIFA)
The American Council of Life Insurers (ACLI) and the National
Association of Insurance and Financial Advisors (NAIFA) appreciate the
opportunity to submit this statement for the record on ``Alzheimer's
Awareness: Barriers to Diagnosis, Treatment and Care Coordination.'' We
thank Chairman Pat Toomey (R-PA) and Ranking Member Debbie Stabenow (D-
MI) for holding this important hearing, and applaud Chairman Toomey's
leadership in advocating solutions. Chairman Toomey's proposal would
help families by allowing them limited access to their retirement
savings to help pay for long term care insurance. By providing this
flexibility, more families will have protection against spending down
their hard-earned savings to pay for long-term care.
ACLI advocates on behalf of 280 member companies dedicated to providing
products and services that promote consumers' financial and retirement
security. Ninety million American families depend on our members for
Long-Term Care Insurance (LTCI), life insurance, annuities, retirement
plans, disability income insurance, reinsurance, and dental, vision and
other supplemental benefits. ACLI represents member companies in state,
federal, and international public policy forums that support the
insurance marketplace and the families that rely on life insurers'
products for peace of mind. ACLI members represent 95 percent of
industry assets in the United States.
Founded in 1890, NAIFA is the oldest, largest and most prestigious
association representing the interests of insurance professionals from
every congressional district in the United States. NAIFA members assist
consumers by focusing their practices on one or more of the following:
life insurance and annuities, health insurance and employee benefits,
retirement planning, multiline, and financial advising and investments.
NAIFA's mission is to advocate for a positive legislative and
regulatory environment, enhance business and professional skills, and
promote the ethical conduct of its members.
Long-Term Care Financing
By 2030, those 65 years of age and older will represent 21 percent of
the population, and 70 percent of individuals living past age 65 will
need some long-term care.\1\, \2\ On average, women need 3.7
years and men 2.2 years of care. Twenty percent of these people will
need long-term care services for more than five years. During the next
20 years, the share of the U.S. population that is 85 years or older
will more than double.\3\ Currently, about 42 percent of those 85 and
older have severe long-term care needs, but only 26 percent use paid
long-term care.\4\ As the elderly population grows, demand for long-
term care will increase. By 2050, up to 14 million seniors will require
some form of long-term care.
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\1\ U.S. Census Bureau, 2019 Statistical Abstract of the United
States, Table 8.
\2\ U.S. Department of Health and Human Services (extracted on
November 15, 2019); and Genworth, 2019 Cost of Care Survey.
\3\ U.S. Census Bureau, 2019 Statistical Abstract of the United
States, Table 8.
\4\ U.S. Department of Health and Human Services, Office of the
Assistant Secretary for Planning and Evaluation, ``What is the Lifetime
Risk of Needing and Receiving Long-Term Support Services,'' April 2019.
Based on 2014 data.
The cost of long-term care is high and increasing. According to a
recent survey, adult day care costs approximately $19,500 per year. An
assisted living facility costs approximately $48,612 per year. A
private room in a nursing home costs approximately $102,200 per year.
Costs are rising approximately 3 percent per year.\5\ Long-term care
ranks as the second greatest financial concern for Americans, behind
only retirement savings.\6\
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\5\ Genworth, 2019 Cost of Care Survey.
\6\ 2019 Insurance Barometer Report, LIMRA.
According to the AARP, in 2017 spending for Long-Term Services and
Supports (LTSS) totaled $235 billion. Medicaid accounted for 57 percent
of that cost, out-of-pocket expenditures made up 23 percent, private
long-term care insurance comprised four percent, and the remaining 16
percent was for other products. These numbers show that more can be
done to help alleviate the pressure on Medicaid by allowing the private
marketplace to take on more of the cost. This current path is not
sustainable for either individuals, their families, or the public
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treasury.
Given the strong possibility that the typical senior will require long-
term care, and given its high and escalating cost, whether seniors
enjoy a comfortable retirement or suffer economic hardship may depend
largely on their ability to afford long-term care. Most Americans have
not planned for this and face the prospect of paying large sums ``out-
of-pocket'' or relying on Medicaid, which in its current form requires
one to ``spend down'' virtually all assets and retirement income in
order to be Medicaid-eligible. Neither option is appealing and may
leave seniors and their spouses impoverished, with few choices other
than reliance on federal and state safety nets.
The private long-term care insurance marketplace offers meaningful
solutions. Private long-term care insurance currently pays for only 4
percent of total nursing home expenditures for seniors.\7\ There is
clearly a large gap in the market which private long-term care
insurance can fill.
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\7\ ACLI calculations of Centers for Medicare and Medicaid
Services. Health Expenditure Survey (extracted on November 14, 2019).
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Long-Term Care and Alzheimer's
As the American population ages, the prevalence of Alzheimer's disease
increases. Currently an estimated 5.8 million Americans are living with
Alzheimer's disease and that number is projected to increase to nearly
14 million by 2050.\8\ Alzheimer's disease is the leading cause of
long-term care insurance claims,\9\ and the impact of a growing
population afflicted with the disease will increase the need for long-
term services and supports. Additionally, almost two-thirds of
Americans with Alzheimer's disease are women. Women are nearly twice as
likely to develop the condition as men.\10\ This highlights the growing
financial risk that Alzheimer's disease poses to women who are not
protected by long-term care insurance coverage.
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\8\ 2019 Alzheimer's Disease Facts and Figures Report p. 22.
\9\ The American Association for Long Term Care Insurance (quoting
Society of Actuaries LTC Experience, extracted on November 15, 2019).
\10\ 2019 Alzheimer's disease Facts and Figures Report p. 18.
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Long-Term Care Insurance
Millions of Americans' financial and retirement security are at risk
from exposure to unfunded long term care needs. Access to expanded
options to meet and finance the need for long-term services and
supports will enable consumers to address those needs without eroding
other assets or burdening family and friends.
Long-term care insurance covers services that assist individuals with
cognitive difficulties and to those who are unable to perform
activities of daily living, such as eating, bathing, or getting
dressed. There is a misconception among many Americans that Medicare
will cover their long-term care expenses. In fact, most of those costs
are not covered. Long-term care insurance provides financial assistance
for necessary care separate from ``medical treatment.'' Since most care
is not treatment, it is not typically covered by medical expense
coverage or Medicare.
Long-term care insurance is a relatively new product. It was introduced
in the 1970s to meet a growing need of American families with loved
ones requiring care for long-term services and supports. The first
generation of these products suffered pricing challenges due to actual
experience and generous benefits. Insurers have stabilized more
traditional products, and concurrently have developed next-generation
hybrid and combination products that provide both life insurance or
annuity payments and long-term care benefits. These developments enable
consumers to protect against long-term care events, with far less price
volatility than the first generation of products.
Approximately 7.4 million people have purchased long-term care
insurance to help manage their future care needs. The number of
Americans needing long-term care is expected to rise to 27 million by
2050.\11\ In 2018 alone, consumers received nearly $12 billion in long-
term care insurance claims payments.\12\ By covering long-term care
costs, insurers will save Medicaid approximately $50 billion in the
coming years, benefitting the solvency of federal and state Medicaid
programs.\13\
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\11\ H. Stephen Kaye, Charlene Harrington, Mitchell P. LaPlante,
``Long-Term Care: Who Gets It, Who Provides It, Who Pays, and How
Much?'', Health Affairs, January 2010.
\12\ ACLI calculations based on 2018 NAJC Annual Statement data.
\13\ Life Plans, Inc. for AHIP ```The Benefits of Long Term Care
Insurance and What They Mean for Long Term Care Financing,'' November
2014.
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Building Awareness and Facilitating Purchase of Long-Term Care
Insurance
ACLI and NAIFA applaud Chairman Toomey's leadership in putting forth a
proposal that would assist families to prepare for their long-term care
needs by allowing them to have limited access to their retirement
savings to help pay for long-term care insurance. With this sort of
flexibility, more families would have protection of retirement savings
and be far better positioned to meet long-term care expenses.
ACLI and NAIFA also continue to work with the recently organized U.S.
Treasury interagency task force on long-term care insurance. We
understand that the task force has been reviewing various proposals to
reform federal laws and regulations concerning long-term care
insurance, including, among other options, federal policy options
presented by the NAIC to Congress for its consideration in April 2017.
Alongside the NAIC options, ACLI and NAIFA offer recommendations we
believe are achievable and would substantially improve consumer access
to private long-term care insurance coverage. These recommendations
specifically identify potential reforms to federal laws, regulations,
and policies that would complement regulatory reforms at the state
level related to long-term care insurance.
There may be additional and more comprehensive reforms warranted that
will require systemic changes to the way we view long-term care funding
with the ultimate goal of creating a comprehensive long-term services
and support financing system. One such approach that warrants
discussion is to have private insurance plans cover initial costs and
the government serve as ``catastrophic backstop.'' However, we believe
the task force's current consideration of the achievable near-term
changes described below would lead to measurable improvements for
American consumers seeking to access long-term care coverage. Included
in this statement is the NAIFA letter to the task force and the joint
ACLI and American's Health Insurance Plans (AHIP) letter to the task
force regarding such recommendations, they are summarized here:
Launch a national educational campaign to help consumers
understand both the need for and benefits of long-term care insurance
coverage.
Provide tax incentives to expand consumer access to long-term
care insurance coverage through workplace and retirement plans:
Making long-term care insurance coverage
available through Internal Revenue Code Section 125 cafeteria
plans and Flexible Spending Arrangements;
Allowing tax-free premium payments for long-
term care insurance policies from 401(k)s, 403(b)s, IRAs, and
other retirement plans; and
Permitting employees to make additional
contributions to Health Savings Accounts to pay for long-term
care insurance premiums.
Support legislation or regulatory guidance that would confirm
and allow the payment of long term care insurance incidental benefits
from policies that enhance care options for policyholders and provide
access to benefits including those intended to support healthy,
independent living and aging in place, prior to satisfying the current
eligibility requirements of a severe cognitive impairment or
substantial assistance with the requisite activities of daily living.
This allowance should not cause the policy to forfeit its tax qualified
status.
Revise current federal requirements surrounding inflation
protection for long-term care insurance policies to encourage policy
design innovations that would meet the needs of consumers more
effectively.
We believe these recommendations align with our mutual goals to expand
consumer choice and access to quality long-term care insurance
coverage, reduce out-of-pocket long-term care costs faced by consumers
and protect retirement savings, manage long-term care insurance
premiums, and improve health outcomes for long-term care insurance
policyholders in the most cost-efficient manner possible.
Again, thank you for the opportunity to comment on this vitally
important issue. The life insurance industry looks forward to working
with you as your work and consideration of policy solutions continues.
______
America's Health Insurance Plans and American Council of Life Insurers
August 30, 2019
The Honorable Michael Faulkender
Assistant Secretary for Economic Policy and
Chair of the Federal Interagency Task Force on Long-Term Care Insurance
Department of the Treasury
1500 Pennsylvania Avenue, NW, Room 3454 MT
Washington, DC 20220
RE: AHIP-ACLI Comments on Potential Federal LTC Reforms to Improve
Financial Security of Americans
Dear Mr. Faulkender:
America's Health Insurance Plans (AHIP) and the American Council of
Life Insurers (ACLI), on behalf of their member insurers, appreciate
the opportunity to respond to the Federal Interagency Task Force on
Long-Term Care Insurance's (Task Force) invitation for comments on
potential reforms to federal laws, regulations, and policies that
complement reforms at the state level relating to the regulation of
long-term care insurance (LTCI). We commend the Task Force for
considering the challenges of long-term care (LTC) financing that
American consumers face as a matter of national interest, requiring a
coordinated response from the federal government.
Millions of Americans' financial and retirement security are at risk
from exposure to unfunded LTC events. Access to additional options to
meet and finance the need for long term services and supports (LTSS)
will enable consumers to address those needs without eroding other
assets or imposing on family and friends. We welcome the opportunity to
work with the Task Force to develop policies that would improve the
private financing of LTSS.
AHIP is the national association whose members provide coverage for
health care and related services to millions of Americans every day.
Through these offerings, we improve and protect the health and
financial security of consumers, families, businesses, communities and
the nation. We are committed to market-based solutions and public-
private partnerships that improve affordability, value, access and
well-being for consumers. Our members provide a range of products to
millions of consumers, including major medical coverage, disability
income insurance, dental insurance, LTCI, reinsurance, pharmacy
benefits, and administrative services for self-funded health plans.
ACLI advocates on behalf of 280 member companies dedicated to providing
products and services that promote consumers' financial and retirement
security. Ninety (90) million American families depend on our members
for LTCI, life insurance, annuities, retirement plans, disability
income insurance, reinsurance, dental and vision and other supplemental
benefits. ACLI represents member companies in state, federal, and
international public policy forums that support the insurance
marketplace and the families that rely on life insurers' products for
peace of mind. ACLI members represent 95 percent of industry assets in
the United States.
We understand that the Task Force has been reviewing various proposals
to reform federal laws and regulations concerning LTCI, including,
among other options, the federal policy options presented by the NAIC
to Congress for its consideration in April 2017. Having also reviewed
the NAIC options, we offer recommendations that we believe are
achievable and would meaningfully improve consumers' access to private
LTCI coverage. Further, as the Task Force requested, our
recommendations specifically outline potential reforms to federal laws,
regulations, and policies that would complement regulatory reforms at
the state level related to LTCI. There may be additional and more
comprehensive reforms warranted that will require systemic changes to
the way we view LTC funding with the ultimate goal of creating a
comprehensive LTSS financing system. One such approach that warrants
discussion is the government serving as ``catastrophic backdrop'' and
private insurance plans covering initial costs. However, we believe the
Task Force's current consideration of the more achievable near-term
changes described below would lead to meaningful improvements for
American consumers seeking to access LTC coverage.
Below we summarize our recommendations regarding the Task Force's
consideration of proposed options to expand consumer access to LTCI
coverage:
Launch a national educational campaign to help consumers
understand both the need for and benefits of LTC coverage.
Provide tax incentives to expand consumer access to LTC coverage
through workplace and retirement plan options:
Making LTC coverage available through Internal
Revenue Code (IRC) Section 125 cafeteria plans and Flexible
Spending Arrangements (FSA);
Allowing tax-free premium payments for LTCI
policies either from or within their 40 l (k)s, 403(b)s, IRAs,
and other retirement plans; and
Permitting employees to make additional
contributions to their Health Savings Accounts (HSA) to pay for
LTCI premiums.
Support legislation or regulatory guidance that would confirm
and allow the payment of LTCI incidental benefits from LTCI policies
that enhance care options for policyholders and provide access to
benefits, including those intended to support healthy, independent
living and aging in place, prior to satisfying the current eligibility
requirements of a severe cognitive impairment or substantial assistance
with the requisite activities of daily living. This allowance should
not cause the policy to forfeit its tax qualified status.
Revise current federal requirements surrounding inflation
protection for LTCI policies to encourage policy design innovations
that would meet the needs of consumers more effectively.
Our detailed recommendations are outlined in the enclosed attachment.
We believe these recommendations align with our mutual goals to expand
consumer choice and access to quality LTCI coverage, reduce LTC costs
faced by consumers, manage LTCI premiums, and improve health outcomes
for LTCI policyholders in the most cost-efficient manner possible.
We appreciate Treasury's efforts to seek detailed input on how to
expand and improve private LTCI coverage to help achieve these mutual
goals. We look forward to working with the Task Force throughout this
process as a resource to provide further clarification on any of these
comments and to offer additional perspectives on the issues that impact
our members.
Sincerely,
Susan Coronel Charles Piacentini
Executive Director for LTC Vice President, Insurance
Regulation
AHIP & Associate General Counsel
ACLI
Enclosures: AHIP-ACLI Recommendations
______
AHIP-ACLI RECOMMENDATIONS
To Federal Interagency Task Force on Long-Term Care Insurance
In Response to Request for Public Comments on
Public Policy and Reform Proposals That Would Have the Most Impact on
Improving the Long-Term Care Insurance Market
The public and private sectors must partner to improve access to long-
term care insurance (LTCI) coverage, enabling individuals to preserve
their health and protect their ability to remain financially secure as
they age. Initiatives that (1) promote consumer awareness, (2) increase
access to coverage, and (3) encourage innovation, both to address the
diverse care needs of individuals and families and to respond to
changes in the care delivery landscape, will enhance consumer choice
and improve access to quality LTCI coverage. In addition, these
initiatives will serve to reduce LTC costs, manage premiums, and
improve health outcomes for LTCI policyholders. By expanding LTCI
coverage among middle class Americans, the social safety net will be
preserved for those who need it most.
I. LAUNCH A NATIONAL AWARENESS CAMPAIGN TO HELP CONSUMERS UNDERSTAND
THE IMPORTANCE OF PLANNING FOR A LONG-TERM CARE (LTC) EVENT
Recognizing that consumers must appreciate the risks associated with a
potential LTC event, implementing a comprehensive awareness campaign is
a key component of efforts to expand access to LTCI, especially among
the middle class. Educational programs must effectively explain, among
other things, (1) the risks of potentially needing long-term supports
and services (LTSS) later in life, (2) why planning for LTSS is a
necessary part of a comprehensive retirement security strategy, and (3)
the meaningful options available to assist consumers in covering their
LTC needs, including the purchase of LTCI. A targeted education program
will help consumers understand the importance of planning and may
encourage the middle class to purchase LTCI.
A well-researched education and awareness effort is critical to
encouraging and enabling consumers to take personal responsibility for
their future LTC needs. Based on their past effectiveness, the ``Own
Your Future'' Awareness Campaign and the National Clearinghouse for LTC
Information website should be re-launched. Notably, consumer interest
in purchasing insurance to address potential LTC needs increased as a
result of ``Own Your Future.''
LTCI carriers are committed to working with federal and state
government leaders to support education and awareness efforts to inform
consumers about the valuable protection LTCI coverage provides.
II. PROVIDE TAX INCENTIVES TO EXPAND CONSUMER ACCESS TO LTC COVERAGE
THROUGH WORKPLACE AND RETIREMENT PLAN OPTIONS
Nearly 180 million Americans obtain health care coverage in the
workplace, which suggests that employers are well-positioned to help
individuals understand the value of Qualified Long-Term Care Insurance
(QLTCI) and expand investment in this coverage. Workers should be
permitted to leverage workplace channels and retirement plan options to
save for their LTC needs. Approaches that should be considered include:
a. Cafeteria Plans (IRC 125) and other Flexible Spending Arrangements
(FSA): Cafeteria plans (often incorporating an FSA) provide employees
an opportunity to receive certain qualified benefits on a pre-tax
basis. Under current law, qualified benefits include most accident and
health benefits, adoption assistance, dependent care assistance, group
term life insurance, and health savings accounts.
Permitting LTC coverage to be included in a cafeteria plan would
make it more affordable. This solution would have limited impact on the
tax dollars received from employees, because most employees would
simply shift their cafeteria plan/FSA dollars from other pre-tax
benefits to LTCI coverage. Adding QLTCI as a qualified benefit gives
employers a new way to add value for their employees--and provides
additional opportunities for Americans to become more educated on why
QLTCI is important to their financial stability and peace of mind.
b. Distributions from Retirement Plans: An uninsured LTC event
significantly threatens the financial and retirement security of most
Americans. Expanding consumer access to pre-tax funds to purchase LTCI
will protect retirement savings from erosion resulting from funding
costly LTSS.
Enabling individuals to make LTCI premium payments from their
401(k)s, 403(b)s, IRAs, and other retirement plan options, income tax
free (or with a lesser tax burden imposed) and subject to limits, would
permit the purchase of meaningful LTCI coverage. Consumers would be
able to use these pre-tax assets to fund either a traditional LTCI
policy or a ``hybrid'' (LTC benefits in conjunction with a life
insurance policy or an annuity contract), which would reduce the cost
of this coverage, making it accessible to more Americans. By utilizing
a limited amount of their retirement assets to fund LTCI, consumers can
protect themselves against LTC events as these assets accumulate while
enhancing overall retirement security.
c. ``Within Plan'' Investments: Individuals currently saving for
retirement through 401(k)s, 403(b)s, IRAs, and other retirement plans
would be permitted to make premium payments for LTCI coverage that will
be considered a retirement plan investment (``Within Plan'').
Individuals would be allowed to leverage their retirement savings
through the ``Within Plan'' approach to invest directly in QLTCI
coverage. Premium payments would be treated as a movement of monies
from one plan investment to another, so they would not be taxable
distributions. Should the policyholder become chronically ill or
otherwise entitled to QLTCI policy benefits, the benefits would be paid
to the retirement plan which would then pay them to the participant as
a plan distribution.
The benefits would be treated in the same manner as income on any
other plan investment and, therefore, considered taxable income when
distributed under existing tax rules governing retirement plan
distributions. This approach would have only a modest tax revenue loss
since pre-existing retirement savings used to pay premiums are already
in a tax-favored format.
d. Health Savings Accounts (HSA): Under current law, individuals with
high deductible health plans can choose to make tax-deductible
contributions to an HSA. In addition to helping to pay for out-of-
pocket health costs, these tax-deductible dollars can be used to pay
premiums for QLTCI.
We support changes to the contribution limits for HSAs that would
allow individuals to make additional contributions to their HSAs equal
to what they would pay in premiums for qualified LTC plans. In
addition, individuals should be allowed to contribute to their spouse's
HSA if the spouse is covered by QLTCI.
Under current law, if an individual has an HSA but no longer has
high deductible health plan coverage, he or she cannot contribute
additional amounts to the HSA. However, under this proposal, if the
individual has QLTCI coverage during a taxable year, he or she would be
allowed to make additional contributions in that year, pursuant to this
special rule, equal to their QLTCI premiums as long as they already
have an HSA. This approach provides more flexibility and choice,
allowing employees to save more pre-tax dollars to buy LTCI coverage
for themselves or their spouse.
III. ALLOW PAYMENT OF LTC INCIDENTAL BENEFITS THAT WOULD ENHANCE CARE
OPTIONS FOR LTCI POLICYHOLDERS
Older adults will need assistance as their levels of dependence begin
to increase. Waiting until the onset of chronic illness or severe
cognitive impairment is too late. LTCI policies can help policyholders
and their families delay the need for more substantial levels of
facility care and keep them in their homes. Since facilities tend to be
more expensive, this would be a benefit to care recipients, their
families, and ultimately to private and public payers.
Federal legislation or regulatory guidance should confirm that tax
qualified LTCI policies may provide incidental benefits prior to the
onset of an insured's chronic illness where such benefits are (a)
incidental to a policy' s overall benefits (e.g., less than 10% of the
policy' s lifetime benefit limit), and (b) expected to delay the onset
of an insured's chronic illness or the severity of the insured's future
chronic illness. Examples would include the provision of home
assessments to identify risks which could lead to chronic illness (such
as tripping hazards), installation of ramps and railings, caregiver
training for family members, and sharing information regarding local
LTC providers to those who need (or anticipate needing) assistance.
This allowance should not cause a LTCI policy to, forfeit its tax
qualified status. Providing these benefits would allow insurers to
provide personalized services to their policyholders and permit
consumers to stay in their homes and communities, which is what they
generally prefer.
IV. AMEND CURRENT FEDERAL INFLATION PROTECTION REQUIREMENTS
Inflation protection is an important LTCI feature. However, existing
laws governing this benefit option often discourage consumers from
seeking LTC protection altogether. Eliminating or revamping inflation
protection requirements could encourage policy design innovations that
would meet the diverse needs of consumers. Given that ``one-size-fits-
all'' solutions do not work for everyone, it is important for consumers
to have a variety of products and options from which to choose when
evaluating their LTC protection needs.
Below are specific recommendations to revise current inflation
protection requirements contained in Health Insurance Portability and
Accountability Act (HIPAA) and the Deficit Reduction Act of 2005 (DRA):
a. HIPAA_Remove the requirement that 5% inflation coverage be offered
to all applicants and replace it with a requirement to offer some form
of inflation protection. A carrier may offer the applicant inflation
coverage (compound, simple, or a guaranteed purchase offer) that best
meets their needs without requiring an expensive 5% compound offer that
may not even be appropriate. This change would simplify the sales/
disclosure process. An LTCI policy should still retain its tax-
qualified status with this change so long as some offer of inflation
coverage is made that is approved by the applicable state regulatory
authority.
b. DRA_Remove the inflation coverage age tier requirements. As long as
an LTCI policy meets all tax qualification requirements under HIPAA
(i.e., the inflation requirement as described above), the DRA Medicaid
Partnership requirements should be fulfilled as well. Thus, a tax
qualified policy would satisfy the DRA Partnership requirements.
______
National Association of Insurance and Financial Advisors
2901 Telestar Ct.
Falls Church, VA 22042-1205
703-770-8100
https://belong.naifa.org/
August 27, 2019
Federal Interagency Task Force on Long-Term Care Insurance
Department of the Treasury
1500 Pennsylvania Avenue, NW, Room 3454 MT
Washington, DC 20220
RE: Federal reforms to complement state level long-term care insurance
reforms
Dear Chairman Faulkender and Task Force members:
The National Association of Insurance and Financial Advisors
(``NAIFA'') appreciates this opportunity to comment on potential
reforms to federal laws, regulations, and policies to complement
reforms at the state level relating to the regulation of long-term care
insurance (LTCI).
Founded in 1890 as The National Association of Life Underwriters
(NALU), NAIFA is the oldest, largest and most prestigious association
representing the interests of insurance professionals from every
Congressional district in the United States. NAIFA members assist
consumers by focusing their practices on one or more of the following:
life insurance and annuities, health insurance and employee benefits,
retirement planning, multiline, and financial advising and investments.
NAIFA's mission is to advocate for a positive legislative and
regulatory environment, enhance business and professional skills, and
promote the ethical conduct of its members.
NAIFA supports proposals at the federal and state level to increase
consumer conversations and awareness of the social need for long-term
care supports and services. The NAIFA Limited and Extended Care
Planning Center is a community with a common purpose to maximize
professional and consumer awareness and the distribution of limited and
extended care solutions.
LTCI can be vital in addressing our nation's long-term care needs,
particularly with an aging ``boomer'' generation that could eventually
overwhelm our nation's already financially strained government
programs. LTCI is sold to individuals or through a group plan offered
by an employer. It is imperative that LTCI play a significant role in
the financing of long-term care services. LTCI can ensure that
significant personal care expenses are met without burdening one's
family or depleting other financial assets, while lowering Medicaid and
Medicare costs for taxpayers.
NAIFA supports a broad array of solutions to increase coverage
opportunities that fit individual and family needs as well as provide
affordable meaningful benefits to a wider consumer market including the
following:
Establish a Federal Retirement and LTC Education Campaign
While Americans recognize the need to save for retirement, few are
aware of the need to protect their savings against the steadily growing
costs of long-term care services. Unfortunately, far too many
individuals mistakenly believe health insurance, Medicare or Medicaid
will cover their long-term care services. Others believe they can self-
finance only to learn that their assets will not pay for care unless
they are sold. These misconceptions stop or delay planning for long-
term care expenses. A robust education campaign to increase the
public's knowledge of LTCI, promote the need for LTCI planning, and
educate consumers on the options for LTCI coverage--both private and
public plans--and the benefits and limitations of those options.
NAIFA was a strong supporter of the previous Own Your Future Awareness
Campaign and the National Clearinghouse for LTC Information Website. A
relaunch of these initiatives, especially with the vast array of social
media opportunities now available, can increase awareness and planning
to meet care needs.
Permit LTCI Purchase Through Sec. 125 Cafeteria Plans and Flexible
Spending Arrangements
Helping people plan for their long-term care needs by allowing them to
purchase LTCI coverage at their place of employment should be part of
our nation's answer to the long-term care financing challenge. Nearly
180 million Americans get health care coverage through their place of
employment. Federal legislation could facilitate access to LTCI
coverage, such as amending federal law to permit workers to buy LTCI
with contributions to their employer-sponsored cafeteria plans or
flexible spending arrangements (FSAs). We believe workplace offerings
will raise workers' awareness of the risk, increase their understanding
of coverage options, and enable them to plan for long-term care
expenses in an affordable manner.
Permit Penalty-free Distribution from Retirement Plans to Purchase LTCI
For well over a century, NAIFA members have helped individuals,
families and businesses reduce risks and protect asset s, fund major
expenses like college, long-term care and retirement, plan their
estates, provide employee benefits and group insurance, and reach their
financial goals. Public policy should support initiatives to encourage
comprehensive planning and flexibility to address evolving financial
needs. Allowing retirement plan participants to make tax-free
distributions from 401(k), 403(b) or an Individual Retirement Account
(IRA) to purchase LTCI--both traditional and hybrid policies--will
allow workers to customize and comprehensively address their financial
protection needs to include long-term care .
Enhance Use of HSAs for LTC Expenses and Premiums
Permitting workers to make additional contributions to their Health
Savings Accounts (HSA) to pay for LTC plans. Under current law,
individuals who have a high deductible health plan can choose to make
tax deductible contributions to an HSA. In addition to helping to pay
for their out-of-pocket costs immediately, these tax-deductible dollars
can be used to pay premiums for Qualified Long-Term Care Insurance
(QLTCI). The tax-preferred treatment of HSAs, combined with higher
deductibles, offer an incentive for people to make informed health care
choices often leading to the greatest cost value. The same benefit can
be recognized in QLTCI by adding flexibility for consumers. NAIFA
supports changes to HSA contribution limits allowing individuals to
make additional contributions to their HSAs equal to what they would
pay in QLTCI premiums. Account holders should also be allowed to
contribute to their spouse's HSA if the spouse is covered by QLTCI.
Revamp Inflation Protection Requirements
Current inflation protection requirements substantially increase LTCI
premiums and often discourage consumers from seeking LTC protection.
Inflation protection is an important LTCI insurance feature. However,
flexibility in feature design, including inflation protection, would
encourage policy design that would better meet the needs of consumers
and broaden protection coverage. Recommended revisions follow:
Health Insurance Portability and Accountability Act (HIPAA)--
Remove the requirement that 5% inflation coverage be offered to all
applicants; and replace it with a requirement to offer some form of
inflation protection. The carrier may offer the applicant inflation
coverage (compound, simple or a guaranteed purchase offer) that best
meets their needs without requiring an expensive 5% compound offer that
may not even be appropriate for the applicant and his or her needs.
This would simplify the sales/disclosure process. A LTCI policy should
still retain its tax-qualified status with this change so long as some
offer of inflation coverage is made that is approved by the applicable
state regulatory authority.
Deficit Reduction Act (DRA)--Remove the DRA inflation coverage
age tier requirements. If an LTCI policy meets all tax qualification
requirements under HIPAA (i.e., the inflation requirement as described
above), the DRA Medicaid Partnership requirements should be treated as
met, too. Essentially, this simplifies DRA Partnership requirements so
that if it is a tax-qualified policy, DRA requirements are satisfied.
We appreciate this opportunity to provide comments and your
consideration of our views. Should you have any questions, please
contact NAIFA staff Diane Boyle dboyle@naifa.org or Steve Kline
skline@naifa.org.
Sincerely,
Jill M. Judd, LUTCF, FSS
NAIFA President
______
America's Health Insurance Plans
601 Pennsylvania Avenue, NW
South Building, Suite 500
Washington, DC 20004
Alzheimer's Disease is the most common form of dementia.\1\ As of 2019,
5.8 million Americans are living with Alzheimer's Disease, with this
number projected to increase to 14 million by 2050.\2\ Alzheimer's
Disease and other dementias cost the United States more than $290
billion, with more than 16 million Americans providing unpaid care for
this population.\3\ With the increasing number of people and their
families affected by Alzheimer's Disease and the high costs associated
with caring for this population, it is essential that we work to
improve care by ensuring stable funding for patient care and
maintaining an appropriate workforce. America's Health Insurance Plans
(AHIP) \4\ and our member health insurance providers are committed to
finding solutions to these issues, and we support the Committee's focus
on addressing Alzheimer's awareness and their commitment to caring for
the people living with this disease and their caregivers.
---------------------------------------------------------------------------
\1\ https://www.cdc.gov/aging/aginginfo/alzheimers.htm.
\2\ https://www.alz.org/alzheimers-dementia/facts-figures.
\3\ https://www.alz.org/alzheimers-dementia/facts-figures.
\4\ AHIP is the national association whose members provide coverage
for health care and related services to millions of Americans every
day. Through these offerings, we improve and protect the health and
financial security of consumers, families, businesses, communities, and
the nation. We are committed to market-based solutions and public-
private partnerships that improve affordability, value, access, and
well-being for consumers.
---------------------------------------------------------------------------
Funding Care for Those With Alzheimer's Disease
People struggling with Alzheimer's Disease deserve high-quality care.
The care they need can often be expensive and be required for several
years. In fact, the total cost of care for someone with Alzheimer's or
other forms of dementia is estimated to be $341,850.\5\ America needs
real solutions to provide for these patients' needs from diagnosis and
treatment to long-term care, including funding for the long-term care
services they require. Expanding access to long-term care insurance can
provide this financial security and peace of mind. Solutions to make
long-term care insurance coverage more available include:
---------------------------------------------------------------------------
\5\ https://www.alz.org/media/Documents/2015FactsAndFigures.pdf.
Launching a national educational campaign to help consumers
---------------------------------------------------------------------------
understand both the need for and benefits of long-term care coverage.
Providing tax incentives for employers to offer long-term care
coverage to employees. Incentives may include:
Making long-term care coverage available through Internal
Revenue Code (IRC) Section 125 cafeteria plans and Flexible Spending
Arrangements (FSA);
Allowing tax-free premium payments for long-term care
policies either from or within their 401(k)s, 403(b)s, IRAs, and other
retirement plans; and
Permitting employees to make additional contributions to
their Health Savings Accounts (HSA) to pay for long-term care premiums.
Allowing patients to access long-term care insurance benefits
that support healthy, independent living and aging in place before they
are technically eligible.\6\
---------------------------------------------------------------------------
\6\ Currently, providing these types of benefits may cause an LTC
insurance policy to forfeit its tax qualified status. Issuance of
legislation or regulatory guidance that allows for these benefits would
help consumers remain healthy and independent longer.
Allowing for different types of financial protections against
inflation for long-term care policies; this would encourage more
innovation among long-term care insurers as they design new types of
policies for consumers.\7\
---------------------------------------------------------------------------
\7\ HIPAA and many states require LTCI policies to offer a benefit
that automatically increases a policyholder's benefit at an annual
compounded rate of 5 percent. This inflation protection offer is
expensive and discourages consumers from seeking protection altogether.
Eliminating or revamping inflation protection would meet the diverse
needs of consumers. Given that ``one-size-fits-all'' solutions do not
work for everyone, it is important for consumers to have a variety of
products and options from which to choose when evaluating their LTC
protection needs.
Enacting these policies will offer individuals with Alzheimer and other
forms of dementia, as well as others with long term care needs, a new
pathway to independence and financial security, while ensuring the best
use of taxpayer dollars that are spent on care.
The Role of Federal Programs in Funding Alzheimer's Care
Medicare. Medicare covers eligible services for individuals with
Alzheimer's Disease or other dementias. Those services include
cognitive assessments, home safety evaluations, planning for care, and
hospital stays.\8\ Medicare Part D also covers many prescription drugs
for beneficiaries with Alzheimer's Disease and other dementias.\9\
---------------------------------------------------------------------------
\8\ https://www.ems.gov/Outreach-and-Education/American-Indian-
Alaska-Native/AIAN/Downloads/Medicare-and-Medicaid-Benefits-for-People-
with-Dementia.pdf.
\9\ https://www.ems.gov/Outreach-and-Education/American-Indian-
Alaska-Native/AIAN/Downloads/Medicare-and-Medicaid-Benefits-for-People-
with-Dementia.pdf.
Starting with plan year 2019, CMS expanded the definition for primarily
health-
related supplemental benefits, permitting MA plans to offer benefits
such as adult day care services, in-home support services, respite
care, and home and bathroom safety devices and modifications.\10\ Via
these new flexibilities, MA plans are able to offer additional benefits
to address unmet medical and social needs for these individuals.
---------------------------------------------------------------------------
\10\ CMS HPMS Memo. Medicare Advantage Organizations and Section
1876 Cost Contract Plans. April 27, 2018.
The Bipartisan Budget Act of 2018 (Public Law No. 115-123) also
included a provision that expanded the types of supplemental benefits
that MA plans can offer to eligible chronically ill enrollees. These
benefits are referred to as Special Supplemental Benefits for the
Chronically Ill (SSBCI). The SSBCI do not have to be primarily health-
related, but the item or service offered must have a ``reasonable
expectation of improving or maintaining the health or overall function
of the chronically ill enrollee.''\11\ Examples of benefits covered
under the SSBCI criteria include food and produce deliveries,
transportation for non-medical needs, social needs benefits, and
general supports for living. These recent benefit flexibilities allow
MA plans to offer important, valuable services.
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\11\ CMS HPMS Memo. Implementing Supplemental Benefits for
Chronically Ill Enrollees. April 24, 2018.
As a result, health insurance providers are offering services
specifically tailored to those with Alzheimer's Disease. For example,
Tufts Health Plan in Massachusetts is working with the local chapter of
the Alzheimer's Association to help those with Alzheimer's Disease and
their caregivers.\12\ Within the program, a Tufts Dementia Care
Consultant directly connects patients to resources at the Alzheimer's
Association. Resources include: referrals to community resources, care
planning, educational materials, answers to disease-related questions,
information on support groups, and more.\13\ This model has seen
success and is now being replicated in other parts of the country.
---------------------------------------------------------------------------
\12\ https://www.ahip.org/board-spotlight-tom-croswell-president-
ceo-of-tufts-health-plan/.
\13\ https://www.tuftsmedicarepreferred.org/members/caring-loved-
one/alzheimer%E2%80%99s
-association-partnership-tufts-health-plan-members.
Aetna's Resources for Living Program also aims to fill the gaps in
caring for those with Alzheimer's Disease by providing access to at-
home services such as cleaning and cooking, caregiver support services
such as help with childcare and respite care, and social activities
such as transportation and classes for skills and interests.\14\
---------------------------------------------------------------------------
\14\ https://www.aetnamedicare.com/en/live-well/resources-for-
living.html.
Medicaid. In addition to Medicare, Medicaid covers a broad range of
services for people with Alzheimer's Disease and other dementias. In
fact, 27% of people with Alzheimer's Disease or other dementias who
have Medicare also have Medicaid.\15\ For people with both Medicare and
Medicaid, Medicaid coverage wraps around their Medicare benefits,
covering Medicare cost sharing and long-term services and support
(LTSS) like nursing facility and home- and community-based services.
For people covered only by Medicaid, Medicaid covers important services
like assessments, physician and diagnostic services, LTSS, care
management, hospital stays, and prescription drugs.
---------------------------------------------------------------------------
\15\ https://www.alz.org/media/documents/alzheimers-facts-and-
figures-2019-r.pdf.
Services health insurance providers serving Medicaid eligible members
with Alzheimer's Disease include: community-based services such as
therapeutic care, personal care, meals, speech therapy, and
occupational therapy.\16\ In some cases, Medicaid also covers respite
care and supportive services for family members who provide unpaid care
for relatives with Alzheimer's Disease who are enrolled in Medicaid.
Respite care allows family caregivers time to attend to their own lives
and personal affairs, helping to reduce caregiver ``burn-out.''
---------------------------------------------------------------------------
\16\ https://www.molinahealthcare.com/members/ca/en-US/mem/
medicaid/medical/coverd/lts/Pages/cbas.aspx.
One example of the kinds of supports provided by Medicaid health
insurance providers to members and their caregivers is Centene's
Caregiving Collaborations Program which provides tools for informal
caregivers such as: information on balancing needs; a Caregiver Journal
to stay organized and track daily routines; a Caregiver Portal for
authorized caregivers to view the member's care plan and other
information; resources on early symptoms and managing illnesses; and
other resources to increase collaboration between caregivers and
Centene's medical teams.\17\
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\17\ https://www.pahealthwellness.com/members/ltss/caregiver-
resources/organizational-tools
.html.
Commonwealth Care Alliance (CCA) is another example; CCA provides
members of their Senior Care Options plan personalized care designed to
expand as the member's needs increase over the course of their disease.
Members receive ongoing health and functional assessments, assistance
with health care appointments and personalized comprehensive care plans
which include individualized goals identified by the member and their
---------------------------------------------------------------------------
caregivers.
CCA is able to wrap long-term services and supports around the member
and their family consistent with the member's needs and goals; examples
of those services include home making, tech enabled supports such as a
``medication box'' for medication management, home delivered meals,
personal care services, Adult Family Care, Adult Day Health and home
based health care delivered by a CCA Nurse Practitioner who
collaborates with the member's primary care provider and other health
care providers. These services that health plans provide their members
are crucial to ensuring coordinated, effective care for those with
Alzheimer's Disease and other dementias.
Addressing the Caregiver Shortage
Research finds that 83% of help provided to older adults in the U.S.
comes from family members, friends, and other unpaid caregivers.\18\ In
2017, unpaid caregivers contributed 18.4 billion hours--valued at $232
billion--in care to those with Alzheimer's Disease and other
dementias.\19\ As our population ages, the age of the individuals
willing and able to provide uncompensated care is also increasing--
putting this important part of the safety net at risk. A 2015 study
found that the average age of unpaid caregivers was 49.2, and among
them 34% were over the age of 65.\20\ A 2013 study by AARP found that
the nation would see a dramatic decline over the next 20 years in the
caregiver support ratio: from 7 potential caregivers for every person
in the high-risk years of 80-plus in 2010, to 4 for every person 80-
plus in 2030.\21\
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\18\ https://www.alzheimers.net/5-09-16-dementia-financial-costs-
take-toll-on-families/.
\19\ https://www.alzheimers.net/5-09-16-dementia-financial-costs-
take-toll-on-families/.
\20\ https://www.aarp.org/content/dam/aarp/ppi/2015/valuing-the-
invaluable-2015-update-new.pdf.
\21\ http://www.aarp.org/content/dam/aarp/research/
public_policy_institute/ltc/2013/baby-boom-and-the-growing-care-gap-
insight-AARP-ppi-ltc.pdf.
The United States must take steps to ensure a robust paid workforce to
provide care for seniors. According to the Bureau of Labor and
Statistics, approximately 4.5 million people are part of the direct
care workforce, including personal care attendants, home health aides,
and nursing assistants. The direct care workforce is expected to grow
by 41% between 2016 and 2026.\22\ Individuals who take on the job of
direct care are tasked with providing some of the most important care
needed by patients with complex medical needs. Direct caregivers assist
patients with bathing, toileting, meal preparation, eating, and a
variety of other services that are highly personal and essential to a
patient's well-being.
---------------------------------------------------------------------------
\22\ https://www.americanprogress.org/issues/healthcare/reports/
2019/04/10/468290/state-options-making-wise-investments-direct-care-
workforce/.
Despite the importance of the work, compensation for these workers is
low. From 2008 to 2018, these workers experienced little to no pay
increases.\23\ Caregivers often receive few of the benefits that other
employers offer, such as paid leave. This combination of low pay and
few or no benefits leads to low job satisfaction, high rates of
caregiver burnout, and, consequently, high rates of turnover.
---------------------------------------------------------------------------
\23\ https://phinational.org/policy-research/workforce-data-center/
#tab=National+Data&natvar
=Wage+Trends.
Understanding the physical and emotional toll caregiving can take,
health plans are giving caregivers access to free nurse help-lines;
comprehensive educational programs including information on enrollment
timelines, plan benefits, differences between plan types, etc.;
caregiving overviews; incentives for preventive care services, and
access to mental health services.\24\ Health plans are committed to
reducing the burden on caregivers and ensuring caregivers get the
information and support they need.
---------------------------------------------------------------------------
\24\ ``Let's Recognize the Importance of Family Caregivers.'' AHIP
Blog Post. Published: November 11, 2019.
In the coming years, aging Americans who require assistance, including
those with Alzheimer's Disease and other forms of dementia, will
continue to face even more significant challenges in identifying and
retaining caregivers. The decline in the availability of family
caregivers coupled with the challenges of the paid workforce will place
a significant burden on private financial resources, and stress
publicly financed programs.
Conclusion
AHIP thanks the Committee for focusing on the important issue of caring
for Americans with Alzheimer's Disease. As our population continues to
age rapidly, we must urgently address funding for long-term services
and supports and ensuring an adequate caregiver workforce. We look
forward to working with the Committee on solutions to ensure efficient
and effective care for this population moving forward.
______
Center for Fiscal Equity
14448 Parkvale Road, Suite 6
Rockville, Maryland 20853
fiscalequitycenter@yahoo.com
Statement of Michael G. Bindner
Chairman Toomey and Ranking Member Stabenow, thank you for the
opportunity to submit these comments for the record to the Committee on
Finance.
Alzheimer's is a very sexy topic. It demands dollars for research and
drug development. There is a better way to approach the topic. In her
book, Dementia Reimagined, Dr. Tia Powell shows that curing Alzheimer's
should not be our goal, as current and future treatments are unlikely
to produce significant rewards for patients. Managing dementia, which
is low tech but not inexpensive, is a better and more necessary course.
We are already spending money to do it and there is value in doing it
better. She should be scheduled as a future witness.
Her book is available on Amazon at https://www.amazon.com/dp/
073521090X/ref=cm_sw_r_cp_apa_i_jcAZDbVW4198M.
She gave a talk on C-SPAN book TV that can be viewed at https://www.c-
span.org/video/?460544-1/dementia-reimagined.
As I stated in the recent full committee hearing on Drug Misuse,
employers who hire their own doctors and pharmacists, whether as part
of a cooperative purchase program or as an offset to a single-payer
program (whether it is Single Payer Catastrophic or Medicare for All)
will provide better treatment for dementia patients at lower cost.
Including franchise and 1099 employees in the employee pool would also
be advantageous to employees, companies, and society. Please see
Attachment One for more on Employee Ownership.
Thank you for the opportunity to address the committee. We are, of
course, available for direct testimony or to answer questions by
members and staff.
Attachment One
A. Employee Ownership, March 7, 2019
Employee ownership is the ultimate protection for worker wages. Our
proposal for expanding it involves diverting an ever-increasing portion
of the employer contribution to the Old-Age and Survivors fund to a
combination of employer voting stock and an insurance fund holding the
stock of all similar companies. At some point, these companies will be
run democratically, including CEO pay, and workers will be safe from
predatory management practices. Increasing the number of employee-owned
firms also decreases the incentive to lower tax rates and bid up asset
markets with the proceeds.
Establishing personal retirement accounts holding index funds for Wall
Street to play with will not help. Accounts holding voting and
preferred stock in the employer and an insurance fund holding the
stocks of all such firms will, in time, reduce inequality and provide
local constituencies for infrastructure improvements and the funds to
carry them out.
ESOP loans and distribution of a portion of the Social Security Trust
Fund could also speed the adoption of such accounts. Our Income and
Inheritance Surtax (where cash from estates and the sale of estate
assets are normal income) would fund reimbursements to the Fund.
At some point, these companies will be run democratically, including
CEO pay, and workers will be safe from predatory management practices.
This is only possible if the Majority quits using fighting it as a
partisan cudgel and embraces it to empower the professional and working
classes.
The dignity of ownership is much more than the dignity of work as a cog
in a machine.
B. Hearing on the 2016 Social Security Trustees Report
In the January 2003 issue of Labor and Corporate Governance, we
proposed that Congress should equalize the employer contribution based
on average income rather than personal income. It should also increase
or eliminate the capon contributions. The higher the income cap is
raised, the more likely it is that personal retirement accounts are
necessary. A major strength of Social Security is its income
redistribution function. We suspect that much of the support for
personal accounts is to subvert that function--so any proposal for such
accounts must move redistribution to account accumulation by equalizing
the employer contribution.
We propose directing personal account investments to employer voting
stock, rather than an index funds or any fund managed by outside
brokers. There are no Index Fund billionaires (except those who operate
them). People become rich by owning and controlling their own
companies. Additionally, keeping funds in-house is the cheapest option
administratively. I suspect it is even cheaper than the Social Security
system--which operates at a much lower administrative cost than any
defined contribution plan in existence.
If employer voting stock is used, the Net Business Receipts Tax/
Subtraction VAT would fund it. If there are no personal accounts, then
the employer contribution would be VAT funded.
Safety is, of course, a concern with personal accounts. Rather than
diversifying through investment, however, we propose diversifying
through insurance. A portion of the employer stock purchased would be
traded to an insurance fund holding shares from all such employers.
Additionally, any personal retirement accounts shifted from employee
payroll taxes or from payroll taxes from non-corporate employers would
go to this fund.
The insurance fund will save as a safeguard against bad management. If
a third of shares were held by the insurance fund than dissident
employees holding 25.1% of the employee-held shares (16.7% of the
total) could combine with the insurance fund held shares to fire
management if the insurance fund agreed there was cause to do so. Such
a fund would make sure no one loses money should their employer fail
and would serve as a sword of Damocles' to keep management in line.
This is in contrast to the Cato/PCSSS approach, which would continue
the trend of management accountable to no one. The other part of my
proposal that does so is representative voting by occupation on
corporate boards, with either professional or union personnel providing
such representation.
The suggestions made here are much less complicated than the current
mix of proposals to change bend points and make OASI more of a needs-
based program. If the personal account provisions are adopted, there is
no need to address the question of the retirement age. Workers will
retire when their dividend income is adequate to meet their retirement
income needs, with or even without a separate Social Security program.
No other proposal for personal retirement accounts is appropriate.
Personal accounts should not be used to develop a new income stream for
investment advisors and stock traders. It should certainly not result
in more ``trust fund socialism'' with management that is accountable to
no cause but short-term gain. Such management often ignores the long-
term interests of American workers and leaves CEOs both over-paid and
unaccountable to anyone but themselves.
If funding comes through a Subtraction VAT, there need not be any
income cap on employer contributions, which can be set high enough to
fund current retirees and the establishing of personal accounts. Again,
these contributions should be credited to employees regardless of their
salary level.
Conceivably a firm could reduce their S-VAT liability if they made all
former workers and retirees whole with the equity they would have
otherwise received if they had started their careers under are formed
system. Using Employee Stock Ownership Programs can further accelerate
that transition. This would be welcome if ESOPs became more democratic
than they are currently, with open auction for management and executive
positions and an expansion of cooperative consumption arrangements to
meet the needs of the new owners.
______
Statement Submitted by Michelle Cox
I am a CPA who was looking for information on the tax extenders
recently passed when I stumbled onto the topic of ``Alzheimer's
Awareness: Barriers to Diagnosis, Treatment, and Care Coordination''
which is a subject very near and dear to my heart as I lost my husband
on May 3th of 2019 to a variation on the Alzheimer's spectrum called
Frontotemporal Lobe Degeneration. The last 10 years of his life was a
nightmare scenario unfolding in slow motion as his bosses started to
notice he was not operating at full capacity and took the budget
downturn of 2008 as an opportunity to put his position up for deletion
in a request for budget cuts. He was a Botanist who worked for the City
of San Antonio at the Botanical Garden for 32 years after he had been
recruited straight out of college and was a very well-respected source
of plant knowledge for the region. He was sought out to identify
unknown plants regularly and won every contest for plant and weed
identification that he ever entered. In lieu of being transferred out
he took early retirement to be a full-time dad to our four kids and he
kept working leading tours and giving talks but it was getting harder
for him to remember the plant names and he was getting lost driving the
kids to routine places like school. At that point he was going to the
doctor by himself but he was kind of a problem patient because he
missed appointments and didn't take prescriptions regularly so he kept
getting moved around among doctors and clinics. One doctor declared he
had diabetes at his first visit, another said he had high blood
pressure, another put him on medication for thyroid issues and soon he
was taking a multitude of various pills where he had previously been
healthy. I started to suspect it was all of the prescriptions causing
his dementia-type issues so we decided to switch him to a doctor of a
family friend whom the friend assured us would not over-medicate him
and I started going to the appointments with him. I quickly came to
realize why all of other doctor's offices ran him off because he had
big problems with being on time, filling out paperwork, going to the
bathroom when the doctor was ready to see him, making sexually
inappropriate comments to the nursing staff and doctors, etc. This
doctor agreed to run her own tests and adjust his medicine deciding he
did not have diabetes but basically keeping him on everything else and
wanted to add in an anti-depressant which he refused to take because he
had known several friends who either killed themselves or had suicidal
thoughts while on the drugs. I mentioned to her about his dementia-type
issues and she said depression would cause all of those issues and that
needed to be ruled out first by taking the drugs. He continued to
refuse until things got so bad that he finally agreed to give it a try
and they did stabilize his moods but the confusion was getting much
worse. She said the dose was too low to fix that and doubled it and
sent us back home again for months to see if the new level would help.
When we went back and I reported no improvement she finally agreed to
order neurological testing and gave us the permission slip to see the
neurologist that we needed for the insurance company. It took many
months to get the referral to the neurologist with a preliminary
appointment where he then referred my husband to a neuro-psychologist,
blood testing and an MRI. He was receiving his pension of 3k per month
and I was working as much as I could part-time for my father's CPA firm
but it took us a while to save up the $800 co-pay for the MRI test so
that caused another delay. After many months of getting the referrals
and tests performed and results back to the Neurologist he basically
said ``get your paperwork in order'' and asked if we had all of the
Power of Attorneys, etc. in place and sent us away saying he would send
the full report to the primary care doctor who would brief us. When we
went in (months later) she said she hadn't received the report just to
keep on with the status quo and come back in 3 months which we did and
she still didn't have the Neurologist report but seemed completely
unfazed by it and assured us she would have it when we came back in 3
more months.
At this point things were getting seriously bad like I would ask him to
bring me a fork and he would pick up a box of Kleenex. I started
talking to my clients whom I knew were dealing with similar issues and
got a referral to a gerontologist at the UT Health System which was
like a dream come true for me. I had started attending a support group
for FTD and when I asked for doctor referrals I could never get one
because San Antonio is a big military city and all of the others seemed
to be patients at the VA. I was envious of them because the VA seemed
to take care of everything where I was on my own trying to go to
different places for tests and getting the results back to the doctors
then trying to get them to follow up with anything. The UT Health
System has a multi-story building called the Medical Arts and Research
Center that houses all of the testing my husband ever needed once he
started being seen over there and the doctor immediately had the
results and followed up with us. The doctors were never in a hurry and
even started making home visits when it became too difficult for me to
transport my husband which is not something that I think anyone is
aware of unless they live through the experience. In all of the support
groups I went to the spouses really bear the burden of care and it is
24 hours a day, 7 days a week mentally, physically and emotionally
challenging that I can go into details about but you have probably
already heard those stories. What I would like to share is how much I
needed help with his care that I was unable to get with him having a
Medicare advantage plan and I don't understand if I was not given
proper directions or if it was really true (my husband was 67 when he
died).
My husband had colitis all of his adult life that he managed between
diarrhea and constipation with a careful collection of prescription and
over the counter medications that only he could navigate. In the end it
was his colitis coming out of remission in September of 2018 with 8
months of non-stop diarrhea that cost him his life. When his colitis
first came back and he lost 20 lbs. over a series of weeks we took him
to the hospital and they admitted him and they were tracking his bowel
movements at 23 times in 24 hours. He was a wanderer with poor
cognitive skills at this point and they couldn't get enough medication
in him to keep him in bed so they got the insurance company to agree to
a 24 hour assistant to sit with him day and night for the 5 days he was
there. They also decided it was too harsh on the skin of his bottom to
keep up with the diarrhea so they put a tube into him while the skin
healed. At the end of the 5 days (which is when I believe the medicare
benefits must have expired) they told me he was a hopeless case and we
needed to move him to hospice. I didn't understand but the long and
short of it was that I had to take him home or take the transfer to
their hospice facility which I agreed to do and invoked hospice
paperwork. When we got to the hospice facility and he sat up and
started walking around the nurses quickly told us we would have to keep
someone with him 24/7 because they weren't staffed for that and he
couldn't be walking around as most people in the facility were days or
hours from death and he couldn't be disturbing them. I agreed and we
revoked the hospice paperwork and they put him into an ambulance and
sent him to University Hospital where they left us mostly unattended in
the ER for 13 hours then told me at 3 am that his condition was
untreatable and they were releasing him to me. While we were at the ER
the tube came out and they cleaned him up and informed me that it
wasn't safe to keep one in any longer, we would just need to use diaper
ointment and change him regularly. So here I was at 3 am being released
with my husband who had previously needed 24/7 assistant and a rectal
tube at a hospital who said he was terminally ill and ready for hospice
then suddenly he has ``no treatable conditions'' and I was all alone
taking him back to our house. I called his wonderful doctor the next
day in great distress who did come to see Paul and offered me some
different prescriptions to try to control the diarrhea and told me
there was no prescription benefit for the adult diapers. I was soon
spending upwards of $50 per week on diapers and paying $12 per hour for
nursing assistants on a private basis because I had some help from
friends and family members with watching him prior to the colitis
problems but everyone drew the line there. When tax season started I
had to juggle what I could afford to pay for the CNA and try to work
from home which was actually a bit easier at this point because he had
gotten so weak and slept most of the time. I don't understand why there
are/were no benefits with his Aetna Advantage Medicare plan to help me
with caring for someone who clearly was not able to take care of
himself and had no control over his body functions. He always had a
great appetite and ate continuously which kept him alive for the 8
months. I had a client who is college aged son was injured in a motor
cycle accident and he lost his vision. He never had a job or paid
benefits into any system yet he was accepted onto Medicaid and she was
able to quit her job and get paid to take care of him since he can't
take care of himself. How and why was my husband who worked from age 15
to 56 and paid into the system all of those years not qualified for
help when he couldn't take care of himself and I had to pay out of
pocket for help so I could leave the house to work and raise a family?
Why aren't adult diapers covered by insurance? How can incontinence
caused by a brain that isn't working correctly not be a medical issue
whereas a bandage to cover a wound is? Is this really correct or did I
get bad information from the doctors and insurance company because I
wouldn't begin to know where I was supposed to look to research this
for myself especially not at that time when I had so much on my plate.
There seems to be a lot of resistance with the insurance companies to
accept that a brain that used to work perfectly and now doesn't work
causing an individual to require assistance to stay alive is a medical
necessity. At a minimum I should have been given 40 hours per week of
paid assistance to allow me to work--how can a person just stop working
to take care of a terminally ill family member for free? I am a CPA and
I can tell you the numbers don't work--you will lose everything if you
don't keep generating enough income to pay your bills.
I read an article this morning about a disabled college student who has
a paid assistant through Medicare in her state and she was informed
that if she took a $14 per hour internship her income would be too high
to continue to qualify for these benefits but obviously not high enough
to pay the expenses on her own. This is all wrong and having a
disability or having a family member with a disability should not mean
financial devastation. I hope that you will do something to help the
others who are just starting down the path that I just got off of the
hard way. I loved my husband dearly and did the best I could to take
care of him but we really could have used a lot more help. I almost
feel like I should have been assigned a social worker or given a packet
of information when he got the diagnosis because living with someone
who has Alzheimer's is a full time job in addition to what you already
had on your plate before the diagnosis so caregivers really need to
have all available resources made readily available to them as it
overwhelming to try to figure it out on the fly, trust me I know.
What I think could have happened better:
1. I wish I could have bypassed the whole primary care physician
system and taken my husband straight to an Alzheimer's Center for
Testing as soon as I knew something was wrong--spouses know these
things.
2. I wish I had been handed a packet of information and a social
worker type contact to help me on a daily basis get through what I had
ahead of me and help to understand insurance and benefits and respite
care and my own care. I saved the government tens of thousands of
dollars by keeping my husband at home and taking care of the majority
of his care or paying for what I couldn't do--I should have had some
help. I know the information is out there but expecting me to find it
on my own was too much.
3. I wish there was something in between taking the burden on
yourself or turning your loved one over to an institution. I went to
many support groups and the hardest part seemed to be deciding when you
were just before your breaking point with keeping him/her at home and
finding a facility to take over. Why can't there be more help with
keeping the Alzheimer's patient at home where we are all more
comfortable and able to spend time together and certainly more cost
effective than institutional settings which range from 5k per month to
12k per month for memory care in San Antonio.
4. I wish the cost of the MRI had not been so financially
prohibitive all at once. We hadn't met our deductible so I had that
entire $800 cost all at once and the testing centers don't send you a
bill that you might not pay--they didn't even take him back until I had
paid with a credit card. Families of a person living with a
neurological disorder don't have big savings accounts I can assure you.
5. I wish there was more help for the working-class in dealing
with this situation. We have 4 years left on our mortgage with lots of
equity in our home and a pension that disqualified us from any Medicaid
type benefit. I was told that everything I needed help with wasn't
covered by his Medicare Advantage plan, only ``Medical'' issues like
testing and prescription drugs were covered which is meaning less when
there are no medications or treatments or cures why test or seek
medical interventions. How is it not a ``Medical'' issue when someone
goes from having a fully-functioning brain and body to one that doesn't
work well enough to know how to take care of himself? If I hadn't been
there to cook for him and remind him to eat and buy food to bring into
the house and he starved to death what would the cause of death had
been? Does this happen? What happens to single people who develop
Alzheimer's and don't qualify for Medicaid or have enough income to pay
ongoing bills and hire assistance? I am in that group now so I hope
that this issue will be addressed.
______
Genworth Financial
INTRODUCTION
For forty-five (45) years, Genworth has played a significant role in
addressing the long term care (LTC) needs of Americans by providing
insurance protection to more than two million (2M) people. Decades of
experience in the LTC insurance market has given the company unique
insights into the challenges the country faces in providing LTC
services to the aging population.
The need for long term care is growing in the United States, driven
primarily by cognitive disorders. These impairments--including
Alzheimer's disease and other forms of dementia--account for fifty-one
percent (51%) of Genworth's claim dollars and thirty-five percent (35%)
of the company's total claims.
Meanwhile, our current public financing system is confronting a
significant challenge as our society faces a tsunami of future long
term care needs. Millions of families are stretched thin as retirees
exhaust their savings rapidly, only to become destitute and reliant on
state Medicaid programs, which already are over-burdened.
Genworth appreciates the work of the Senate Committee on Finance and
specifically the Health Care Subcommittee's heightened focus on
Alzheimer's disease and other long term care issues. We also applaud
Senator Stabenow for her ``Improving HOPE for Alzheimer's Act,'' and
Senator Toomey for developing a new proposal that will empower
Americans with options to use some of their employer-based retirement
savings in a tax-advantaged way to plan for potential long term care
events through the purchase of private long term care insurance.
Incentives like this will help make financial planning more feasible by
expanding access to products and services to allow individuals to
achieve that goal.
We offer the Committee the following comments and information about
Genworth's experience in the long term care arena for your
consideration. We hope this information serves as a helpful resource.
Should you have any questions or request additional information, please
contact Lynn White, Senior Vice President and Chief of Staff at
Lynn.White@genworth.com.
About Genworth Financial
Genworth is a leading insurance holding company committed to helping
families become more financially secure, self-reliant, and prepared for
the future. The company holds leadership positions in mortgage
insurance and long term care insurance. Headquartered in Richmond,
Virginia, Genworth traces its roots back to 1871 and became a public
company in 2004.
Genworth has been in the long term care insurance market since its
inception in 1974--forty-five (45) years. The Company has played a
significant role in addressing the long term care needs of Americans by
providing insurance protection to more than two million (2M) people.
Genworth has the most extensive experience in the long term care
insurance industry, with nearly two hundred eighty thousand (280,000)
claims processed and more than eighteen billion dollars ($188) in
benefits paid to date. Each day, Genworth pays more than seven million
dollars ($7M) in claims to cover the cost of care for its
policyholders.
Aging in America, Alzheimer's Disease and the Demand for Long Term Care
Understanding the Need
The need for long term care services is compelling and growing. Despite
the fact that the number of Americans who will require long term care
services is expected to increase significantly, and seventy percent
(70%) of people turning sixty-five (65) can expect to require long term
care in their lifetime,\1\ most have not planned for potential long
term care financing needs. Meanwhile, according to consumer research
commissioned by Genworth, two-thirds (66%) of Americans incorrectly
believe that Medicaid or Medicare will cover all or part of their long
term care needs.\2\ Unfortunately, most Americans do not fully
appreciate the grave financial risks they face from a long term care
event, and how these considerable costs can deplete their retirement
savings. With more than ten thousand (10,000) Baby Boomers turning
sixty-five (65) every day, preparing for a long term care event is a
critical part of retirement planning.\3\
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\1\ Department of Health and Human Services Office of the Assistant
Secretary for Planning and Evaluation, ``Long-Term Services and
Supports for Older Americans: Risks and Financing Research Brief,''
July 2015.
\2\ LTC Consumer Sentiment Study, J&K Solutions, September 2017
(commissioned by Genworth).
\3\ U.S. Census Bureau, ``An Aging Nation: The Older Population in
the United States,'' May 2014.
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Rising Cost of Care
Additionally, the cost of long term care services has increased
steadily over the last several decades. According to the most recent
Genworth Cost of Care survey, the 2019 national average annual cost for
long term care in a private nursing home room is over one hundred two
thousand dollars ($102,000)--and has increased by more than three
percent (3%) per year over the past five (5) years.\4\
---------------------------------------------------------------------------
\4\ Genworth 2019 Cost of Care survey.
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The Drivers of Long Term Care
As the largest long term care insurance provider in the country,
Genworth has the most extensive claims database in the industry with
nearly two hundred and eighty thousand (280K) claims processed and more
than eighteen billion dollars ($188) in benefits paid through December
2018. On average, the company pays over seven million dollars ($7M) in
benefits each business day. This extensive claims-paying experience has
given us a deep understanding of both market and benefit utilization
trends--what causes people to claim, where they claim, claim costs, and
much more.
Alzheimer's Disease and Its Impact on Long Term Care
Dementia, Alzheimer's, and other cognitive conditions account for
thirty-five percent (35%) of Genworth's opened claims and fifty-one
percent (51%) of all benefit dollars paid by the company (primarily
driven by claim duration). Yet, the impact of Alzheimer's disease,
along with other forms of dementia and cognitive conditions, is not
exclusive to Genworth policyholders. With more than five and a half
million (5.5M) Americans age 65 and older living with Alzheimer's
today, this single disease creates more demand for long term care
services than any other ailment by a large margin.\5\ Consider also
that women, for whom Genworth has made the majority of benefit
payments, make up almost two-thirds (nearly 63%) of the people in the
United States with Alzheimer's \6\ and account for approximately two-
thirds of the unpaid caregivers for people with the disease as well.\7\
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\5\ Alzheimer's Association, ``2019 Alzheimer's Facts and
Figures.''
\6\ Alzheimer's Association, ``2019 Alzheimer's Facts and
Figures.''
\7\ Alzheimer's Association, ``2019 Alzheimer's Facts and
Figures.''
It is estimated that more than sixteen million (16M) Americans provide
unpaid caregiving for those afflicted with Alzheimer's disease or other
dementia.\8\ Payments for care are estimated to be two hundred and
ninety billion ($290B) in 2019, including one hundred and ninety-five
billion ($195B) in costs incurred by Medicare and Medicaid.\9\ By 2050,
the total cost of Alzheimer's and other dementias is expected to exceed
one trillion dollars ($1T) annually.\10\ Although the National
Institutes of Health (NIH) projects that it will spend slightly more
than two billion dollars ($2B) in 2019 on Alzheimer's research,\11\
that amount is a fraction of the disease's financial impact and less
than half of the amount allocated to the search for cancer cures this
year ($5.74B).\12\
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\8\ Alzheimer's Association, ``2019 Alzheimer's Facts and
Figures.''
\9\ Alzheimer's Association, ``2019 Alzheimer's Facts and
Figures.''
\10\ Alzheimer's Association, ``2019 Alzheimer's Facts and
Figures.''
\11\ Alzheimer's Association, ``Fiscal Year 2020 Alzheimer's
Research Funding.''
\12\ National Cancer Institute, ``Plans for NCI's Fiscal Year 2019
Budget.''
Investments in Alzheimer's research have led to treatments that may
help delay the onset of symptoms and have helped to reduce the need for
care. Further reducing the incidence of Alzheimer's and dementia, by
either delaying the onset of symptoms or preventing them altogether,
would have a profound impact on the nation's long term care challenges.
Therefore, Genworth supports additional funding allocated by Congress
for Alzheimer's research, which can ultimately lead to more meaningful
advances in the treatment of these devastating diseases.
The Cost of Long Term Care
Unfortunately, as the number of Americans who need long term care has
increased, so has the cost of the services they require. Since 2004,
Genworth has published an annual Cost of Care survey to track and
catalogue the costs of care received in homes, adult day care centers,
assisted living facilities, and nursing homes. The Genworth Cost of
Care survey is the most comprehensive of its kind, covering four
hundred forty-one (441) regions across the United States. The results
are derived from data collected from more than fifteen thousand
(15,000) survey responses submitted by nursing homes, assisted living
facilities, adult day health facilities, and home health providers.
Like the surveys before it, the 2019 Cost of Care results indicate that
expenses for care, no matter where received, continue to rise.
Nationwide median annual costs of care for 2019 are provided below:
Homemaker Services--$51,480 (an increase of 7.14% from the
previous year)
Home Health Aide--$52,624 (an increase of 4.55% from the
previous year)
Assisted Living Facility--$48,612 (an increase of 1.28% from the
previous year)
Nursing Home, Private Room--$102,200 (an increase of 1.82% from
the previous year)
The full interactive survey includes access to cost information by
individual states and metropolitan area.\13\
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\13\ Genworth Financial, ``Cost of Care 2019.''
To put these numbers in perspective, the estimated median household
income for the United States was $61,937 in 2018, less than a one
percent (1%) increase from 2017.\14\ The current federal statutory
minimum wage is seven dollars and twenty-five cents ($7.25) per hour--
which has held steady for the last ten (10) years.\15\ In short, while
income has remained relatively stable, the cost of long-term care has
increased, as has the number of individuals needing care.
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\14\ U.S. Census, ``Household Income: 2018.''
\15\ U.S. Department of Labor, ``Minimum Wage.''
The story of the impact of long term care on the U.S. economy does not
end there. Often, as a result of these growing costs, family members
voluntarily reduce their compensated time at work or leave the
workforce altogether. According to a 2015 study by AARP, approximately
forty million ($40M) Americans serve as unpaid family caregivers, with
the economic value of this care estimated at four hundred seventy
billion dollars ($470B).\16\
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\16\ AARP, ``Valuing the Invaluable: 2015 Update.''
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Beyond Dollars--The Toll of Long Term Care on Families and Caregivers
While the financial impact on caregivers often is significant, the
emotional impact should not be underestimated or overlooked. Genworth
conducts a regular comprehensive research study, Beyond Dollars, to
understand the experiences and perspectives beyond those of the care
recipient.\17\ The 2018 study surveyed more than twelve hundred (1,200)
people with personal involvement in a long term care event lasting more
than thirty (30) days--as caregivers, as care recipients, or as family
members of someone experiencing a long term care event.
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\17\ Genworth Financial, ``Beyond Dollars 2018.''
The 2018 Beyond Dollars survey provided insights into the many ways
that family caregivers are impacted by a care event.\18\ Among the
findings, half (50%) of respondents reported having less time for their
spouse/partner, children, and themselves, and forty-six percent (46%)
reported that the long term care event negatively affected their own
health and well-being. Caregivers estimated spending ten thousand four
hundred dollars ($10,400) of their own funds on out-of-pocket expenses
in support of a care recipient. Additionally, half (50%) reported
negative effects on their careers, and of those, sixty-two percent
(62%) believed they lost income as a result of caregiving, with thirty
percent (30%) reporting missed career opportunities. Notably, fifty-two
percent (52%) of caregivers said they did not feel qualified to provide
physical care.
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\18\ Genworth Financial, ``Beyond Dollars 2018.''
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Paying for Long Term Care
Unlike acute health care, long term services and supports (``LTSS'')
are almost never covered by health insurance policies, HMO plans, or
Medicare supplemental insurance. Medicare only covers limited acute
care for ninety (90) days, although those who have a Medicare Advantage
plan may have access to select long term services and supports if
provided by their particular plan. Most financing of long term care is
provided by families who often pay out of pocket, followed by the
default public payer--state Medicaid programs (which are intended to be
the public safety net for lower income individuals). The chart below
illustrates the distribution of LTSS costs among common payors.\19\
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\19\ The SCAN Foundation, ``The State of Long-Term Care Financing--
Long-Term Care Spending in the United States,'' March 17, 2014.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Without advanced planning, ailing seniors can very quickly drain their
personal and their family's financial resources as long term care costs
continue to rise. These costs often increase the financial burden on
the younger generation providing long-term care--which ultimately could
threaten their own financial security. Consider, in 2016, among
households headed by someone age 65 to 74, median net worth was just
above two hundred twenty-four thousand dollars ($224K), according to
Federal Reserve data--a six percent (6%) decrease from 2013.\20\
However, if home equity is excluded, the median senior-citizen
household has a much smaller net worth (although long term care
expenses often are covered by the sale of a home).\21\
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\20\ Federal Reserve, ``Changes in U.S. Family Finances from 2013
to 2016.''
\21\ ``Retiree Net Work Declines,'' U.S. News and World Report,
July 2013.
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Education and Planning
Before reaching retirement age, it is critical that all Americans
become better informed about the realities surrounding the incidence
and cost of long term care events and plan for possible future needs.
As previously noted, seventy percent (70%) of Americans turning sixty-
five (65) will require some form of long term care in their lifetime--
yet most Americans have not planned for this need.\22\
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\22\ Department of Health and Human Services Office of the
Assistant Secretary for Planning and Evaluation, ``Long-Term Services
and Supports for Older Americans: Risks and Financing Research Brief,''
July 2015.
In the past, the Department of Health and Human Services launched the
``Own Your Future'' campaign in an effort to increase awareness among
the American public about the importance of planning for future long
term care needs. Operational from 2005 to 2012, twenty-four (24) states
and the District of Columbia participated in the initiative's core
activities. The campaign was supported by the governor of each
participating state and utilized direct mail to target households with
family members between the ages of forty-five (45) and seventy
(70).\23\
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\23\ The SCAN Foundation, ``The Own Your Future Long-Term Care
Awareness Campaign: Implications for CLASS.''
The campaign still is active in some states, including Minnesota and
has been viewed as largely successful, having educated Americans about
the need to plan.\24\ However, it no longer is operational in other
states, leaving an ever-increasing knowledge gap among the middle
class. State awareness campaigns did effectively drive both interest in
and the purchase of long term care insurance and enabled individuals to
take responsibility for their long term care needs.
---------------------------------------------------------------------------
\24\ Minnesota Department of Human Services, ``Own Your Future.''
Additionally, in 2005, the National Long Term Care Clearing House was
created. The Clearing House website, which is still operational today,
was developed by the U.S. Department of Health and Human Services to
provide information and resources to help individuals and families plan
for long term care needs.\25\
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\25\ National Long Term Care Clearing House website.
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The Role of the Private Market: Long Term Care Insurance
A comprehensive, national long term care solution must include private
long term care insurance coverage. Given current state and federal
government challenges to pay for entitlements as Americans age, the
public sector simply cannot afford to cover all long term care costs.
While the costs of LTC policies vary, the average annual premium for a
long term care policy is roughly $2,700.\26\ As the Cost of Care survey
indicates, the annual cost of a nursing home potentially could be
nearly thirty-eight (38) times that amount, and often self-funded
savings are not sufficient to cover this expense.\27\
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\26\ AARP, ``5 Things You SHOULD Know About Long-Term Care
Insurance,'' March 1, 2018.
\27\ Genworth 2019 Cost of Care Survey.
Approximately seven million (7M) Americans--only eight percent (8%) of
the population--have a long term care insurance policy.\28\ The private
insurance market can and should play an even more significant role
going forward. However, to do so, change is required. Given appropriate
changes in the regulatory and legislative environments, the LTC
insurance industry can work with the public sector to expand access to
private long term care insurance and identify ways to make it more
affordable for Americans.
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\28\ National Association of Insurance Commissioners and Center for
Insurance Policy and Research, ``The State of Long Term Care Insurance:
The Market. Challenges and Future Innovations,'' May 2016.
There is no doubt that private long term care insurance helps to
shoulder a huge financial burden for policyholders, their network of
caregivers, and reduces some exposure to which state Medicaid programs
are subject. Medicaid is the payer of last resort but has become, by
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default, the nation's largest payer.
Long term care insurance policies offer tremendous value to
policyholders. Genworth's policyholders generally have access to LTC
benefits that are many multiples of the premiums they have paid, and
will pay, in the future. With the cost of a private nursing home room
now averaging approximately two hundred eighty dollars ($280) per day
across America,\29\ it is fair to say the cost of care almost always
will greatly outweigh the cost of insurance many times over.
---------------------------------------------------------------------------
\29\ Genworth Financial, ``Cost of Care 2019.''
For private long term care insurance to play a more meaningful role in
the system, we recognize the need for greater market penetration. Put
simply, we believe more workers should consider and ultimately purchase
LTC insurance in the context of their retirement planning. Through a
combination of (1) changes to the regulatory framework which are
currently being advanced at the state level, (2) new products designed
to be both more accessible and affordable (therefore more appealing to
the middle income market), and (3) tax incentives, such as those
included in Senator Toomey's new proposal, the private market can grow-
both in terms of the number of policyholders and the number of carriers
designing and offering products.
The Path Forward--Public Policy Considerations
America needs to pursue a more rigorous public policy platform to
address long term care needs. Looking beyond the financing imperative,
the multi-dimensional challenges of caregiving, healthy aging, chronic
disease impact, and retirement security planning all must be addressed
as part of comprehensive long term care reform. This is a discussion
the nation and its policymakers need to have, and we appreciate the
attention being afforded to this important issue by the Senate Finance
Committee's Health Care Subcommittee.
Public policy that promotes responsible retirement savings, including
access to meaningful private long-term care insurance options,
especially for the middle class, will encourage accountability,
appropriate planning, and informed decision-making, while addressing
potential long-term care needs.
We believe several changes to public policy are required, including:
Adequate funding of research for Alzheimer's and other chronic
diseases, which make up the majority of long term care expenses;
Increasing public education and awareness of the need to prepare
for long term care costs as part of a comprehensive retirement security
plan;
Making retirement savings and long term care protection an
objective of future tax reform;
Building and maintaining an adequate, skilled, and diverse
workforce to provide care for the growing population of older Americans
and people with disabilities;
Advancing programs that increase awareness of and support for
caregiving--paid and unpaid; and
Expanding support for family caregivers, including funding
initiatives to provide training and other information about available
services such as respite care.
Importance of Long Term Care as an Integral Part of Retirement Planning
As we previously have suggested, the greatest unmet retirement income
security threat for most Americans is the potential cost of long-term
care. For married Baby Boomers, average long term care costs represent
over eighty percent (80%) of a typical couple's total retirement
savings shortfall.\30\ Without insurance to cover those long term care
costs, retirement savings can easily be depleted within a very short
period, often leaving the chronically-ill individual (and later, the
surviving spouse) with little or no retirement income. As a result, any
plan to deal with unmet long term care financing needs should include
changes that make long term care costs and insurance a vital part of
the retirement security conversation.
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\30\ For married Baby Boomers, the average LTC costs represent over
80 percent of an average couple's total retirement savings shortfall
(EBRI, February 2015).
Today, many working Americans have most, if not all, of their
retirement nest eggs in IRAs, 401(k) plans, or other qualified
retirement savings plans. However, the current tax treatment of
distributions from those retirement plans imposes unnecessary and
inappropriate impediments on the use of those savings to protect
against long term care risks in retirement. In effect, the current tax
treatment traps financial resources in the retirement plan when it
could be in the individual's best interest to use some of those funds
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to protect themselves and their families.
Individuals who need to use retirement plan savings to cover long term
care insurance premiums will be taxed immediately, at ordinary income
tax rates, on the amount withdrawn from the plan. In some cases, where
an individual is still working, access to savings in certain types of
qualified retirement plans is prohibited entirely by what is commonly
known as ``in-service distribution restrictions'' of existing law. Even
where retirement plan assets are available for distribution, a ten
percent (10%) excise tax (on top of the ordinary income tax) will apply
if the distribution is made before age fifty-nine and a half (59\1/2\).
Senator Toomey's proposal addresses some of these concerns. Genworth
strongly supports his efforts in this regard and commends the Senator
for all that he has done on this critical issue. It is imperative that
the retirement plan rules are amended to unlock retirement savings and
permit Americans to protect themselves and their families against
potentially catastrophic long term costs in the future.
Tax-free distributions from qualified defined contribution retirement
plans, 403(b) arrangements, and IRAs can fill the long term care gap
that currently exists for many middle class Americans in their planning
for retirement security. Moreover, a change to tax rules could expand
employer engagement, through their human resources functions, in
educating workers on these issues.
Unlocking retirement plan assets could be especially beneficial for the
millions of working Americans who have made sacrifices to save for
retirement. Many of those individuals and couples are now experiencing
(and are often sharing) the LTC financing and caregiving burdens of
their parents, but they also have already tied up most of their savings
in their homes and their retirement plans. Removing the barriers to
retirement plan distributions may be the most realistic way for them to
protect themselves (and their children) from the financial devastation
that unforeseen long term care expenses can cause.
We urge the members of this Subcommittee to continue work on this
critical issue for all Americans.
Conclusion
The need is clear. While the challenge is complex, the realities of the
future require thoughtful deliberation and meaningful action. Genworth
believes that there are effective public policy solutions to address
the long term care financing challenge, and that the private market is
an integral component of a comprehensive, national response. We welcome
the opportunity to participate in the discussion.
______
LeadingAge
2519 Connecticut Ave., NW
Washington. DC 20008-1520
P 202-783-2242
F 202-783-2255
https://leadingage.org/
Chairman Toomey and Ranking Member Stabenow, LeadingAge appreciates the
opportunity to submit this statement for the hearing record. Our
members have a long history of service to older people and we greatly
appreciate the committee's focus on the impact of Alzheimer's on
caregiving and the concomitant need for an adequate financing model for
long term services and supports (LTSS). We think it is highly
significant that this committee, and the House Ways and Means Committee
have elevated the issue of LTSS and its impact on caregiving and as we
stated to the House Committee, we reiterate here--we would be pleased
to work with the committee to address the issues raised.
We represent more than 5,000 aging-focused organizations that touch
millions of lives every day. Alongside our members and 38 state
partners, we address critical issues by blending applied research,
advocacy, education, and community-building. We bring together the most
inventive minds in our field to support older adults as they age
wherever they call home. We make America a better place to grow old.
All LeadingAge members are not-for-profit. About 75% of our members had
their origins in faith-based communities; others were established by
fraternal or cultural organizations. Some have served their communities
for over 100 years. Our members work every day with persons affected by
Alzheimer's--patients, their family, professional caregivers
The Issues:
People come to need a wide variety of services as they age. We
appreciated the range of issues committee members and witnesses
addressed at the November 20th hearing. As witnesses testified,
determining causation of Alzheimer's and related dementias has been
frustratingly elusive. More promising has been the development of
diagnosis, care and treatment modalities, as the testimony from Jason
Karlawish and Janet Tomcavage indicated.
Regardless of geography or provider type, LeadingAge members are
striving to improve the lived experience of individuals with dementia,
and their care partners. People with dementia live in every setting
throughout the constellation of housing, services and supports. While
the current numbers are staggering, as a provider organization we
strive to be guided by the expertise of the lived experience of the
people we serve and focus on helping people live well with dementia. We
are part of the advocates and providers across the country who are
exploring critical questions about serving people with dementia. Should
we segregate people based on a diagnosis? What is meaningful engagement
(vs. entertainment) for people with dementia? How can people with
dementia be involved in decision-making and planning? How do we build
actual and metaphorical ramps so people living with dementia can
continue to thrive long after diagnosis? How we respond to these
questions will help drive both professional and unpaid caregiving for
the foreseeable future.
As Chairman Grassley stated for the record, the consequences of caring
for persons with Alzheimer's falls hardest on unpaid caregivers.
``According to the Alzheimer's Association, more than 16 million
Americans are providing unpaid care for people with dementia, such as
Alzheimer's disease, amounting to 18.5 billion hours annually. The
brunt of this work is done by family members.'' https://www.finance.
senate.gov/chairmans-news/grassley-on-alzheimers-awareness-barriers-to-
diagnosis-treatment-and-care-coordination.
The consequences of this model will last for generations, as was noted
by the caregiver witness at the hearing on Caring for Aging Americans
held by the House Ways and Means Committee on November 14th. Said
Kristina Brown, describing the impact of caring for her mother on
herself and her sister, `Caregiving fuels generational poverty,
disproportionately affecting millennials and women who take on that
role in their families.'' https://waysandmeans.house.gov/sites/
democrats.
waysandmeans.house.gov/files/documents/Kristina%20Brown_Testimony.pdf.
Family caregivers work out of love, and often out of necessity, but the
lack of systemic social and economic supports has significant negative
economic and social outcomes that are just not fair and certainly not
necessary.
This hearing addressed legislation that can alleviate some of the most
serious weaknesses in our care system. The Improving HOPE for
Alzheimer's Act, S. 880, improves comprehensive care planning, and The
CHOICE Act, S. 1126, supports utilizing evidence-based tools to detect
cognitive impairment and provide appropriate referrals. In addition,
potential legislation to encourage purchasing private long-term care
insurance was discussed, reflecting the lack of adequate personal
financial resources available to pay for needed services.
We strongly support efforts to improve care coordination and services,
but with this statement wish to stress the critical importance of
addressing public and private long-term care financing.
Recognizing the inadequacy of the current patchwork of long-term
services and supports financing, heavily dependent as it is on Medicaid
and unpaid informal caregiving, LeadingAge began working in 2004 to
develop proposals for a better system.
By 2030 more than one in five Americans will be over the age of 65,
with a 50% possibility of needing paid long-term services and supports
before they die and few options to pay for it through either public
programs or private savings. And we cannot forget that the need for
LTSS is not limited to older persons; research indicates that
approximately 40% of persons with LTSS needs are under 65. Favreau It
and Johns on, Microsimulation Analysis of Financing Options for Long
Term Services and Supports, (Urban Institute, November 2015, page 4).
https://www.thescan
foundation.org/media/2019/10/
nov_20_revised_final_microsimulation_analysis_of_
ltss_report.pdf.
As Dr. Cohen noted in his testimony before this committee, the need for
long term services and supports is a risk that is appropriate for
insurance to cover. LeadingAge recommends a dignity driven and
universal long-term services and supports insurance program grounded in
the principles of shared risk and consumer flexibility. We are
encouraged that witnesses addressed the importance of a public
insurance program at this hearing and at the November 14 Ways and Means
Committee hearing, ``Caring for Aging Americans.''
For persons with Alzheimer's or other conditions that lead to
functional limitations, a public insurance-based financing system can
provide independence, choice and autonomy now missing, when the only
alternatives are impoverishment (either to pay for services or to
qualify for Medicaid) or dependence on others. These values are
quintessentially American.
For unpaid caregivers, financing alternatives can alleviate the
economic and social consequences described in the testimony of Kristina
Brown at the Ways and Means Committee hearing cited above. While both
Senate and House hearings are targeted at aging Americans, it is
instructive to recall that the need for LTSS is not limited to persons
over 65, and younger persons like Ms. Brown's mother can have disabling
conditions that affect them for decades as well.
Challenges:
We strongly believe that Congress must take up the challenge of
developing a public program. Much work has already been done to
identify potential models and address critical questions like cost.
Final reports from the Bipartisan Policy Center, LeadingAge Pathways,
and Convergence were issued in 2015 and are still relevant. https://
www.thescanfoundation.org/publications/side-by-side-review-of-long-
term-care-financing-policy-recommendations/.
What that public program should look like, how it should be paid for,
and who it should cover are critical questions that must be grappled
with if we are to provide the services needed by persons with
Alzheimer's and other chronic disabilities, support in formal, unpaid
caregivers and ensure the economic viability of the paid workforce.
States are also recognizing that they can play a role in developing
publicly financed long-term care insurance, as states are deeply
affected by the fact that the Medicaid program pays for well over 50%
of all LTSS costs. We were pleased to hear comments at the hearing on
Washington State's new long-term care financing program, which will
finance a capped amount of long-term services and supports with a
dedicated payroll tax. States can serve as a laboratory to develop
insurance and care models supported by taxpayers and determine pain-
points for payment by their citizens.
The second challenge is what should be the role for private long-term
care insurance? As has been well documented, private, voluntary long-
term care insurance has not proved feasible for financing LTSS. Dr.
Cohen's testimony points to many of the reasons private insurance
simply has not and cannot work under our current system. We strongly
support his conclusion that we need a public insurance program as the
predicate model, with private insurance serving in effect as a wrap
around for non-covered services, analogous to the role that Medi-gap
policies play in the Medicare program. The public program makes private
program feasible and allows the private market to develop new products
that might be more attractive and certainly less expensive. We would
just note however, that accessibility must also be addressed,
specifically, the exclusion of persons with pre-existing conditions
from coverage and/or the prohibitive policy costs. These negative
characteristics of private long-term care insurance must at some point
be addressed directly if private insurance is to provide effective
coverage.
Conclusion:
We firmly believe that the nation' s current methods for financing
long-term services and supports are unsustainable, irrational, and
unfair for individuals and families. We commend all of those addressing
this critical issue and we will continue to work with them to frame and
support workable solutions.
______
UsAgainstAlzheimer's
1101 K Street, NW
Washington, DC 20005
Statement of George Vradenburg,
Chairman and Co-Founder
Chairman Toomey, Ranking Member Stabenow, and other Members of the
Subcommittee,
Thank you for holding this hearing today on ``Alzheimer's Awareness:
Barriers to Diagnosis, Treatment, and Care Coordination.'' This topic
is immensely important to the work of UsAgainstAlzheimer's, a
disruptive non-profit organization that is laser-focused on
accelerating our nation towards a cure for Alzheimer's and dementia.
Alzheimer's disease and dementia constitute the top public health
crisis of our time, according to four former U.S. surgeons general who
made this point in an editorial last month. Currently, about 5.8
million Americans are living with this disease--5.6 million of whom are
over the age of 65--at a 2019 cost to our healthcare system of $290
billion. It is the only top-10 cause of death in America without an
effective treatment or cure.
Age remains the No. 1 risk factor for this disease, and neither the
disease pathology nor the demographics are in our favor. The rate of
incidence for Alzheimer's doubles every five years after age 65, and we
know that between 2010 and 2030, the number of Americans age 65 and
older is expected to grow 81 percent. By comparison, the growth rate is
16 percent for the next fastest-growing demographic, 35-44, over the
same time period.
This disease disproportionately affects women and people of color. Two-
thirds of Americans living with Alzheimer's are women, and 60 percent
of those caring for someone with the disease are women. Further,
research from UsAgainstAlzheimer's, Johns Hopkins, and the USC Edward
R. Roybal Institute on Aging projects that by 2030, nearly 40 percent
of Americans living with Alzheimer's will be Latino or African
American. This is an urgent health equity issue.
These trends are only going to continue, and our nation is fast
approaching a tipping point from which it will have immense difficulty
recovering.
This disease is expensive, disproportionately hurts women and
minorities, and is growing as our population ages. Those are all at the
population level. As patient advocates, we know that it is devastating
for each individual person living with the disease and for their
families.
One of the reasons dementia is so devastating is that it is often
diagnosed when it is too late. Studies tell us that doctors miss the
diagnosis about half of the time until patients have serious symptoms.
We would not accept a system that only diagnoses cancer at Stage 4, but
that is more or less where we are with Alzheimer's and related
dementias.
Further, we know that communities of color face acute challenges with
accessing an accurate and timely diagnosis. African Americans are three
times more likely to develop Alzheimer's than non-Hispanic whites, and
Latinos are one and a half times more likely to develop Alzheimer's
than non-Hispanic whites. Despite this higher risk, African Americans
and Latinos living with dementia are, on average, less likely than non-
Hispanic whites to have actually been given a diagnosis by a provider.
Senators Shelley Moore Capito and Debbie Stabenow, along with Senators
Bob Menendez and Roger Wicker, have introduced S. 1126, also known as
the CHANGE Act, which would drive early detection and diagnosis for a
vulnerable population. The bill now has 17 cosponsors. It is a
groundbreaking bill that fights Alzheimer's disease on multiple fronts,
and I urge every Member of the Subcommittee to support it.
The CHANGE Act would incentivize and equip providers with tools they
need to accurately detect and diagnose Alzheimer's at its earliest
stages--the stages where something can be done. It requires testing for
cognitive impairment or progression of cognitive impairment in both the
``Welcome to Medicare'' initial exam and annual Medicare wellness
visits using assessments identified by the National Institutes of
Health. If cognitive impairment or progression of cognitive impairment
is detected, patients would be referred for additional diagnostic
services to specialists trained in diagnosis or treatment of
Alzheimer's disease and related dementias, community-based support
services and appropriate clinical trials. We now know that there is
much we can do for people who are in the early stages of dementia, and
it is time for Medicare to make that possible for more people.
We urge the Senate Finance Committee to pass the CHANGE Act and, as
part of this effort, obtain a Congressional Budget Office score and the
necessary technical assistance from CMS to enact the measure.
Our focus is--and should be--on those living with the disease. But
because of the way this disease works, it also creates turmoil for
families and other caregivers.
Thanks to modern medicine and technology, people are living longer than
ever before. Our nation benefits from these advancements, but it must
also respond to what they mean for a rapidly aging--and even more
rapidly growing--segment of the population.
For example, in 2017, 16.1 million family--that is, unpaid--caregivers
in our country provided an estimated 18.4 billion hours of care. That
is an extraordinary economic cost--but I want to make another point
very clearly.
Alzheimer's is not like other diseases. It is not like cancer. It is
not like heart disease. It is not like diabetes. While millions of
Americans and their families grapple with these conditions, they are
supported with treatments and even cures that ultimately allow many
people to be able to live ``normal'' lives. They are living with or
surviving their disease, even years after initial diagnosis.
That is simply not the case with Alzheimer's--there is no remission
from this disease once it reaches a certain stage. The longer the
disease has to take hold, the more insidious its symptoms become. The
emotional and economic toll this levies on families and caregivers is,
in actuality, unquantifiable. This is a good enough reason, in my mind,
to support the CHANGE Act, comprehensive paid family leave and other
legislation that promotes innovative approaches to supporting family
care partners.
This disease affects patients, their families, and caregivers, and
there is an immense fiscal cost to our nation as well. Much of the $290
billion in 2019 economic costs that I referenced earlier is in Medicare
and Medicaid payments. Medicaid payments are on average 23 times higher
for those with Alzheimer's compared to those without, and Medicare
payments are three times greater on average. By 2050, estimates show
that direct costs alone will increase to $1.1 trillion over a projected
14 million people living with the disease--unless there is a treatment
or cure for Alzheimer's.
This brings me to the U.S. Preventive Services Task Force, which has
issued draft guidance that the latest scientific evidence is
``insufficient'' to justify screening for mild cognitive impairment in
older Americans. Frankly, this couldn't be further from the truth.
UsAgainstAlzheimer's fiercely rebutted that draft guidance with our own
public comments. I mention it here to you today as yet another example
of an under appreciation of the magnitude of the crisis we are facing
in Alzheimer's and dementia and the progress we have made to
understanding what can be done if it is caught early enough. The task
force should understand the importance of cognitive screening for a
highly vulnerable segment of the population--especially when there is a
growing body of mainstream scientific evidence which states that we
can, potentially, do something to slow or even stop the progression of
cognitive decline. The American Academy of Neurology joined with us and
more than 150 dementia-patient-serving organizations in calling for
early detection and screening.
The Committee has gathered today to talk about Alzheimer's awareness
and barriers to diagnosis, treatment and care coordination. This is an
important and timely hearing as November is Alzheimer's Awareness
Month, and at a time when Alzheimer's is the top public health crisis
of our time.
UsAgainstAlzheimer's and others throughout our movement are seeking a
national and global response to Alzheimer's equal to the attention and
urgency given to AIDS, cancer and climate change. I hope it leads to
the day when we finally eliminate the risk of Alzheimer's and dementia.
For patients, for caregivers, for families and for our nation, the
stakes are too high to accept anything less than complete victory over
this disease.
Thank you.