[Senate Hearing 113-647]
[From the U.S. Government Publishing Office]


                                                        S. Hrg. 113-647
 
                      CHRONIC ILLNESS: ADDRESSING 
                         PATIENTS' UNMET NEEDS

=======================================================================

                                HEARING

                               BEFORE THE

                          COMMITTEE ON FINANCE
                          UNITED STATES SENATE

                    ONE HUNDRED THIRTEENTH CONGRESS

                             SECOND SESSION

                               __________

                             JULY 15, 2014

                               __________


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            Printed for the use of the Committee on Finance

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                         COMMITTEE ON FINANCE

                      RON WYDEN, Oregon, Chairman

JOHN D. ROCKEFELLER IV, West         ORRIN G. HATCH, Utah
Virginia                             CHUCK GRASSLEY, Iowa
CHARLES E. SCHUMER, New York         MIKE CRAPO, Idaho
DEBBIE STABENOW, Michigan            PAT ROBERTS, Kansas
MARIA CANTWELL, Washington           MICHAEL B. ENZI, Wyoming
BILL NELSON, Florida                 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
MARK R. WARNER, Virginia

                    Joshua Sheinkman, Staff Director

               Chris Campbell, Republican Staff Director

                                  (ii)




                            C O N T E N T S

                               __________

                           OPENING STATEMENTS

                                                                   Page
Wyden, Hon. Ron, a U.S. Senator from Oregon, chairman, Committee 
  on Finance.....................................................     1
Hatch, Hon. Orrin G., a U.S. Senator from Utah...................     3

                               WITNESSES

Dempsey, Stephanie, patient, Blairsville, GA.....................     6
Lehmann, Mary Margaret, caregiver, Minneapolis, MN...............     8
Bornstein, Dr. William A., chief quality and medical officer, 
  Emory Healthcare, Atlanta, GA..................................    11
DeMars, Cheryl, president and CEO, The Alliance, Fitchburg, WI...    13

               ALPHABETICAL LISTING AND APPENDIX MATERIAL

Bornstein, Dr. William A.:
    Testimony....................................................    11
    Prepared statement...........................................    33
    Responses to questions from committee members................    39
Burrell, Chet:
    Prepared statement with attachments..........................    46
    Responses to questions from committee members................    56
DeMars, Cheryl:
    Testimony....................................................    13
    Prepared statement...........................................    61
Dempsey, Stephanie:
    Testimony....................................................     6
    Prepared statement...........................................    65
Franken, Hon. Al:
    Prepared statement...........................................    67
Hatch, Hon. Orrin G.:
    Opening statement............................................     3
    Prepared statement...........................................    68
Klobuchar, Hon. Amy:
    Prepared statement...........................................    71
Lehmann, Mary Margaret:
    Testimony....................................................     8
    Prepared statement...........................................    73
    Responses to questions from committee members................    76
Wyden, Hon. Ron:
    Opening statement............................................     1
    Prepared statement...........................................    79

                             Communications

American Academy of Family Physicians............................    81
American Academy of Physician Assistants.........................    85
American College of Clinical Pharmacy (ACCP).....................    90
American Diabetes Association....................................    93
Diabetes Advocacy AllianceTM..........................    98
National Association of Chain Drug Stores (NACDS)................   106
National Community Pharmacists Association (NCPA)................   109
Special Needs Plan Alliance (SNP)................................   112

                                 (iii)


                      CHRONIC ILLNESS: ADDRESSING 
                         PATIENTS' UNMET NEEDS

                              ----------                              


                         TUESDAY, JULY 15, 2014

                                       U.S. Senate,
                                      Committee on Finance,
                                                    Washington, DC.
    The hearing was convened, pursuant to notice, at 10:08 
a.m., in room SD-215, Dirksen Senate Office Building, Hon. Ron 
Wyden (chairman of the committee) presiding.
    Present: Senators Stabenow, Carper, Bennet, Casey, Warner, 
Hatch, Thune, Isakson, and Toomey.
    Also present: Democratic Staff: Michael Evans, General 
Counsel; Hannah Hawkins, Research Assistant; Elizabeth Jurinka, 
Chief Health Policy Advisor; Matt Kazan, Health Policy Advisor; 
Tom Klouda, Senior Domestic Policy Advisor; Jocelyn Moore, 
Deputy Staff Director; Joshua Sheinkman, Staff Director; and 
Kelly Tribble Spencer, Detailee. Republican Staff: Erin 
Dempsey, Health Care Policy Advisor; and Jay Khosla, Chief 
Health Counsel and Policy Director.

   OPENING STATEMENT OF HON. RON WYDEN, A U.S. SENATOR FROM 
             OREGON, CHAIRMAN, COMMITTEE ON FINANCE

    The Chairman. The Finance Committee will come to order.
    Today the Finance Committee focuses its attention on what, 
in my view, is the biggest challenge ahead for Medicare and the 
future of America's health care system; that is, managing 
chronic illness.
    To understand why this is a growing issue, one need only to 
look at how Medicare has changed over the years. When the 
Medicare program began--and in those early days, I was co-
director of the Oregon Gray Panthers, with a full head of hair 
and rugged good looks--Medicare was mostly about caring for 
seniors who needed to go to the hospital. If a senior slipped 
on the kitchen floor and broke an ankle, for example, they 
would head to the hospital, they would get treatment, and they 
would head home.
    In 1970, nearly 70 percent of Medicare spending was for 
hospital care. Now that number is closer to 40 percent. The 
change shows how Medicare is very different than it was 4 
decades ago. Rather than broken ankles or pneumonia, Medicare 
is now dominated by chronic conditions such as cancer, 
diabetes, and heart disease. More than two-thirds of those on 
Medicare now are dealing with challenging multiple chronic 
conditions. That care accounts for almost all--93 percent--of 
Medicare spending.
    And we are going to hear today that it is not just seniors 
who are affected by chronic illness. Half of all American 
adults have at least one chronic condition. These diseases 
account for 70 percent of deaths, limit the activities of tens 
of millions more Americans, and cost the economy billions each 
year.
    The problem is only going to be compounded as chronic 
illnesses become more common. In fact, there are a number of 
health care experts who have warned that this generation could 
be the first in modern times to have shorter life spans than 
their parents. And this is not just a health issue. The growing 
prevalence of chronic disease is also a major driver of health 
care costs that are putting a growing burden on the government, 
business, and family budgets.
    Here is my bottom line: the way health care in America is 
delivered has to change. And I will repeat that: it has to 
change. Doctors and hospitals often do not coordinate care or 
even talk to one another. Patients receive medication for one 
disease that conflicts with another. Paper medical records 
force time and energy away from patient care only to be spent 
on burdensome red tape. There is even data showing that 
caregivers of those with chronic disease face higher rates of 
stress and depression and have higher mortality rates. 
Virtually all Americans get touched by these kinds of issues, 
and certainly those suffering with chronic diseases are hurt 
the most by the flaws in American health care.
    This morning's hearing is going to look at the problems 
faced by millions of Americans every day as they try to 
navigate--navigate--America's chaotic system of treating 
chronic illness. The committee is going to hear how the tragedy 
of chronic disease is exemplified by a single mom who, before 
her 31st birthday, had major heart surgery and can no longer 
work or even drive a car because of the onslaught of these 
diseases.
    We are going to hear about patients with multiple chronic 
conditions who are left on their own to shuttle themselves 
between a whole array of different providers that often are 
located hours away from each other. We are going to hear a 
story from a wife struggling to take care of a husband with 
Alzheimer's, trying to make sure that the doctor appointments 
are kept, medication is taken, and the marriage is intact.
    I think we all understand this is not something that is 
going to be solved overnight. This chronic care hearing marks 
the beginning of what will be a bipartisan effort to address 
the dominant problems in America's health care system that 
practically everyone over the last decade has managed to 
ignore.
    In the months ahead, the committee can find bipartisan 
solutions to meet the challenges and strengthen the American 
health care system. I am very much committed to working with 
Senators on both sides of the aisle.
    [The prepared statement of Chairman Wyden appears in the 
appendix.]
    The Chairman. Let me recognize Senator Hatch.

           OPENING STATEMENT OF HON. ORRIN G. HATCH, 
                    A U.S. SENATOR FROM UTAH

    Senator Hatch. Thank you, Mr. Chairman.
    I am pleased that we are finally including a health care 
hearing today. Frankly, I think this committee should hold more 
hearings on health care.
    We all know the implementation of Obamacare has come under 
intense scrutiny, and for good reason, in my view. It is 
imperative that the Senate start exercising proper levels of 
oversight to determine whether or not the law is working as 
promised. I do not say this out of politics or partisanship, 
but because patients, taxpayers, and policymakers deserve 
honest answers.
    That said, today this committee has an opportunity to delve 
into the very important topic of chronic illness. This is one 
area where, if we choose to work together, I believe the 
committee can find real bipartisan solutions that not only 
improve care coordination and lower overall health care costs, 
but also give complex patients better tools to more effectively 
navigate the health care system.
    The Medicare Payment Advisory Commission has long said that 
fee-for-service Medicare creates silos, incentivizing providers 
to deliver more care, not necessarily higher-quality 
coordinated care. The successful Medicare Advantage program 
does give patients the option to receive benefits from private 
plans that are incentivized to manage care across all settings. 
However, traditional Medicare fails to meaningfully encourage 
providers to engage in labor-
intensive and time-consuming patient care coordination.
    Perhaps this is why in 2013 Medicare Advantage enrollment 
increased by 9 percent to 14.5 million patients. That number 
represents 28 percent of all Medicare enrollees. Even with 
these advances, today's health care system remains fragmented, 
and there is significant evidence that communication between 
providers is lacking both in the Medicare program and in the 
private sector.
    The Medicare Payment Advisory Commission estimates that 
Medicare patients with five or more chronic conditions see an 
average of 13 physicians and fill an average of 50 
prescriptions each year. So it is no surprise that patients 
with high-cost chronic conditions routinely visit multiple 
specialists, often repeat medical histories and tests, receive 
inconsistent medical instructions, do not get health 
transitioning from one site of care to another, and use more 
expensive care settings when it may not be necessary.
    Today, one remarkably brave patient, as well as a devoted 
and loving caregiver, will share their personal stories with 
us. Their testimony will show that the current health care 
system is not serving all patients well.
    But there is hope. We are also going to talk to a medical 
provider and an employer about the promising efforts underway 
to address the unique needs of chronic care patients. I applaud 
these innovative approaches, but we all need to know that there 
are no easy answers. Developing and implementing policies 
designed to improve disease management, streamline care 
coordination, improve quality, and reduce Medicare costs, is a 
daunting challenge.
    Based on past experiences, with the Medicare program in 
particular, there is still much more work to be done. For more 
than a decade, the Centers for Medicare and Medicaid Services, 
or CMS, has tried numerous demonstration programs to find out 
what does and does not work to improve care coordination for 
patients with chronic diseases. These demonstration programs 
have at best shown mixed results.
    According to the Congressional Budget Office, CMS has paid 
34 programs in six major demonstrations to provide disease 
management or care coordination services in traditional 
Medicare. On average, these 34 programs had little to no effect 
on hospital admissions or Medicare spending.
    In 2010, Obamacare created Accountable Care Organizations, 
ACOs, which, of course, allow certain providers to work 
together to coordinate and integrate Medicare services. These 
provider groups must meet specific quality standards in order 
to share in any savings they achieve for the Medicare program. 
The ACO initiative is relatively new. There is no definitive 
data to prove if ACOs actually improve quality, if they show 
any promise to save Medicare money, or if they are simply 
failing.
    While the jury is out on whether these ACOs will produce 
results, Obamacare also gave the Secretary of Health and Human 
Services broad authority to create and implement new Medicare 
pilot programs. Through the Center for Medicare and Medicaid 
Innovation, CMMI, the Obama administration is actively 
conducting care coordination programs in various Medicare 
settings. My hope is that the CMMI research will yield results. 
As we all know, health care costs place enormous strain on the 
Federal budget. By identifying cost-effective, data-driven ways 
to improve patient health, policymakers can better target 
scarce Federal resources to get more value for the dollars 
spent.
    U.S. health care spending grew 3.7 percent in 2012, 
reaching $2.8 trillion or $8,915 per person. In fact, total 
health care spending consumes 17.2 percent of the Nation's 
gross domestic product, or GDP. Adding insult to injury, last 
year the Medicare trustees issued a report showing that the 
Part A hospital insurance trust fund deficit reached $23.8 
billion and will be exhausted in 2026.
    Given the current fiscal reality, we have to find ways to 
provide high quality care at greater value and lower cost, all 
without adding to the deficit. So I am glad we are holding this 
first hearing to understand the problem, but we cannot stop 
there. I believe this must be the start of a long-term 
transparent discussion with additional stakeholders, including 
the administration, CBO, MedPAC, and others that will allow us 
to work together to identify solutions in an open and 
transparent way.
    Again, thank you, Mr. Chairman, for holding this hearing 
today. I look forward to hearing from our panel of witnesses. I 
think it will be very interesting.
    The Chairman. Thank you, Senator Hatch.
    [The prepared statement of Senator Hatch appears in the 
appendix.]
    The Chairman. Also, let me recognize your years and years 
of advocacy in terms of trying to come up with fresh, creative 
approaches for our health care challenges.
    For our witnesses, you should know that I am essentially 
flanked by three, on this side, Senators who have real roots in 
terms of challenging the status quo and looking at fresh 
approaches to chronic disease and health care services, and the 
same is true on the other side of me. So flanked really by 6 
percent of the United States Senate that cares passionately 
about these issues, and I am very pleased that all of you could 
be here.
    Now, we are going to hear from Stephanie Dempsey, a chronic 
disease patient from Blairsville, GA. Ms. Dempsey is currently 
taking on coronary artery disease, Lupus, a seizure disorder, 
and arthritis. And we very much appreciate your willingness to 
come, Ms. Dempsey.
    Mrs. Mary Margaret Lehmann is here. She is a caregiver for 
her husband, Ken Lehmann, who is facing Alzheimer's, a disease 
my mother faced.
    Dr. Bill Bornstein comes to us from Emory University. Dr. 
Bornstein is the chief medical officer and chief quality 
officer for Emory Health.
    Finally, Ms. Cheryl DeMars, the president and chief 
executive officer for The Alliance, is here. The Alliance is a 
cooperative of employers who are focused on the delivery of 
health care benefits.
    I also want to note that Chet Burrell, the president and 
CEO of CareFirst BlueCross BlueShield, was scheduled to 
testify. Many of us know him and his good work. But as we all 
know, late last night the skies burst open, and Mr. Burrell is 
not able to join us.
    Senator Isakson, we do have two witnesses from Georgia. You 
have done a lot of work on these issues, and I appreciate it. 
Let us have you introduce Ms. Dempsey and Dr. Bornstein to the 
committee.
    Senator Isakson?
    Senator Isakson. Thank you, Mr. Chairman.
    Georgia is very fortunate to have two of our four witnesses 
today, and I am very pleased to introduce both of them to the 
committee and to the audience.
    First, Stephanie Dempsey. Stephanie is a relatively new 
citizen of Georgia who lives in Blairsville, GA, which is the 
capital of the Blue Ridge Mountains of north Georgia and a 
rural part of our State. She deals with multiple conditions and 
can talk firsthand about the challenges of having multiple 
conditions and reaching the services that are necessary in a 
rural area of the State.
    Dr. William Bornstein is a tremendous individual whom you 
and I have met before, Mr. Chairman, because he was at our 
rollout, if I am not mistaken, when we first brought the 
coordinated care bill to the committee. He is the chief quality 
and medical officer for Emory Healthcare in Atlanta, which is 
the home of the Emory University Hospital, which is one of the 
major teaching hospitals in the United States and a major 
system that provides health care to a significant portion of 
our 10.2 million citizens in Georgia. He is a nationally 
recognized leader in the use of health information and 
technology to drive better outcomes and decisions, and I think 
the committee will really like hearing from him because he is 
not somebody who just talks about doing it, he has done it, 
implementing successful systems throughout the Emory Healthcare 
system.
    We are glad to have Dr. Bornstein here today.
    Thank you, Mr. Chairman.
    The Chairman. Thank you, Senator Isakson. And thank you for 
your good work on these issues. I literally could go around the 
room and point out the efforts of every Senator who is here, 
and I very much appreciate your leadership.
    Let me also say to our witnesses that your written 
statements will be included in the record automatically--all 
that you have put together for your written statement. If you 
could perhaps summarize your key views for your oral 
presentation, that would be very welcome.
    Let us start with you, Ms. Dempsey.

                STATEMENT OF STEPHANIE DEMPSEY, 
                    PATIENT, BLAIRSVILLE, GA

    Ms. Dempsey. Chairman Wyden, Ranking Member Hatch, and the 
members of the committee, thank you for allowing me the 
opportunity to testify today. My name is Stephanie Dempsey. I 
am 44 years old. I live in Blairsville, GA, and I have been 
battling multiple chronic medical conditions for much of my 
life.
    I have always considered myself a middle-class American. I 
had a well-paying job, I owned my own home, and I was happily 
married. Unfortunately, this is not the case today.
    The very illnesses that I battle every day have taken that 
from me. I have lost my independence, my financial security, 
and, most importantly, my family. I hope my story can help you 
and those listening today better understand what people with 
chronic medical conditions face day in and day out, and I hope 
my story gives you some sense of the challenges that I and so 
many others go through daily.
    I would like to take a few minutes to share my story with 
you.
    I was diagnosed with coronary artery disease at the age of 
21. My heart disease is hereditary and has impacted all of the 
women in my family. My only sister died at the age of 28 from 
heart disease. My mother, who is 69, underwent quadruple bypass 
surgery at the age of 48. And my maternal grandmother died at 
the age of 72 from coronary artery disease.
    At the age of 30, I underwent quadruple bypass surgery for 
severely blocked arteries caused by high cholesterol. Since 
then, I have had the placement of 27 stints, another bypass 
surgery, and countless other medical procedures.
    I take 15 different medications in the morning and an 
additional four in the evening, plus a multitude of supplements 
recommended by my doctors. At times, as you can imagine, it is 
very difficult to keep track of all my medicines. So I use 
these different baskets to keep track, and every one is labeled 
by condition, with my coronary----
    The Chairman. Ms. Dempsey, can I ask a question?
    Ms. Dempsey. Yes.
    The Chairman. That basket is what you have to navigate 
through on a daily basis?
    Ms. Dempsey. Absolutely, every day and every night. They 
are labeled by condition so that I can stay organized, because 
there are so many.
    In addition to heart disease, I am fighting the effects of 
Lupus, arthritis, and a seizure disorder, all of which have 
become debilitating. I can no longer work, although I would 
desperately like to, and I depend on my parents to help care 
for me.
    I always believed--as I am sure some of you have, that you 
would be taking care of your parents--and I always knew that I 
would be taking care of my parents as they grew older. Instead, 
they are taking care of me because I simply had no other 
choice.
    This has been difficult to accept, but this is my reality. 
Battling a number of complex illnesses has not only taken a 
toll on me, it has taken a toll on my entire family. As you 
might imagine, my medical expenses are significant and are 
becoming more significant by the day.
    We fell behind on our mortgage, and we were forced to sell 
our home. It was difficult to make ends meet. At the time, my 
first priority was to buy medicine that my son, who is now 20 
years old, needed for his own health condition. This required 
us to scrape money together to make sure that he had the 
necessary medicine that he required.
    Paying for my numerous costly medications was out of the 
question. Therefore, I was unable to purchase them. As a 
result, I was hospitalized five times over the course of 6 
months, which resulted in five additional stints. As it became 
more difficult for me to manage my illnesses, the growing 
burdens became overwhelming for my husband, and, after 21 years 
of marriage, he decided to walk away.
    I had no choice but to move from South Carolina to Georgia 
to live with my parents. I now live in the rural mountains of 
Georgia, and, although my primary care physician is nearby, I 
have had to travel over 2 hours to see my specialists. And 
because of my seizure disorder, I depend on my parents to take 
me to my appointments.
    In addition to my primary caregiver, I also must see 
multiple doctors. I have a cardiologist who helps me manage my 
heart disease, a neurologist and a neurosurgeon who help me 
manage my seizure disorder, and I have a rheumatologist who 
helps me manage my Lupus and my arthritis. I interact with 
countless other health care professionals, such as nurses, 
physician's assistants, therapists, and others.
    Although my doctors are all well-intentioned, they often do 
not talk with each other or share information about my care. 
This ultimately leaves me to be my own health care coordinator.
    To give you an example, my Lupus disorder keeps my body in 
a constant state of inflammation for which one of my 
specialists prescribed me a medication to reduce that symptom. 
Unfortunately, that medication can cause seizures. He did not 
remember my seizure disorder, and the medication caused me to 
have an increase of seizures. After a visit with my 
neurologist, he took me off the medication, knowing the seizure 
side effect. Getting this resolved took days, countless phone 
calls, and much persistence on my part, not including the 
increase of seizures.
    Issues like this happen frequently, and, although I 
consider myself an educated person, navigating this maze is 
very difficult and very exhausting, but it is my life at stake, 
and I do not have a choice but to be engaged.
    To give you another example, I recently had to change to a 
new primary care doctor since my former doctor is now only 
accepting private-pay patients. This has been a challenge as it 
will take some time for me to become familiar with my doctor 
and for her to become familiar with me and my medical history.
    In an ideal world, I would want my primary care doctor to 
manage all of my care, but I have come to realize that this is 
not realistic because I require specialized physicians.
    For a long time, I was privately insured through my 
employer, and later through my husband's insurance policy. 
However, when my husband was laid off and his health benefits 
terminated, I was left without insurance. Fortunately, I was 
able to qualify for Medicare in 2004 because of the Federal 
Disability Act. Although it took 2 years of fighting to qualify 
for Medicare, the program has been extremely helpful. But it 
still leaves me constantly struggling to pay my portion of my 
medical bills.
    My last surgery in September of 2012 cost $51,000 for an 
overnight visit. Medicare covered all but $1,138 of that fee.
    I have encountered countless challenges along this journey, 
and I am extremely fortunate to be here today to share my 
story. I am confident that you will not forget me and countless 
other people who are dealing with chronic illnesses when you 
develop policies that will help all of us. Our goals are all 
the same: to live long, healthy, and productive lives.
    I sincerely thank you for giving me this opportunity to 
share my story with you.
    The Chairman. Ms. Dempsey, thank you. You have delivered a 
powerful and eloquent wake up call here that really speaks to 
the dimensions of chronic illness, and I want you to know that 
I think the strongest, richest country on earth can do better 
by those who have these kinds of chronic conditions. And you 
ask that you not be forgotten, and you have Senators here, 
Democrats and Republicans, who are committed to making sure 
that does not happen, and I thank you for it.
    [The prepared statement of Ms. Dempsey appears in the 
appendix.]
    The Chairman. Mrs. Lehmann, we welcome you from 
Minneapolis, MN.

              STATEMENT OF MARY MARGARET LEHMANN, 
                   CAREGIVER, MINNEAPOLIS, MN

    Mrs. Lehmann. Thank you. Good morning, Chairman Wyden, 
Ranking Member Hatch, and members of the committee.
    On behalf of caregivers for individuals living with 
Alzheimer's disease and other dementias, thank you for the 
opportunity to testify before you today on the topic of chronic 
care.
    Alzheimer's is a devastating, progressive, and ultimately 
fatal disease. It currently impacts more than 5 million 
Americans living with the disease and their 15.5 million 
caregivers. These men and women living with Alzheimer's are 
husbands and wives, fathers and mothers, brothers and sisters, 
business leaders, medical professionals, Republicans, 
Democrats, and my dear husband of 50 years, Ken, is one of 
them.
    I am honored to be here today to share our story and 
discuss the issues facing individuals with Alzheimer's and 
their caregivers. The more we share our story and talk about 
Alzheimer's, the less of a stigma it will become for others 
facing this disease.
    While Ken is fortunate to have a devoted care partner to 
advocate for him and, finally, a definitive diagnosis, 
initially a care plan to ensure that he lives as well as 
possible with Alzheimer's was not available to us. Our journey 
to get here was long and difficult. There are many who live 
with this disease who never get the care and support they need.
    Ken's tentative diagnosis came in October of 2009. However, 
I became aware of changes in his personality and behaviors as 
far back as 1995. It was then that I began to notice his 
withdrawing from family, friends, and social situations, having 
difficulty navigating familiar places, as well as challenges in 
executive function involving problem-solving and reasoning. His 
judgment was often compromised, especially in regard to our 
finances. Ken communicated to me that he was having 
difficulties at work, particularly learning new computer 
programs.
    We were both patients of a well-known, highly respected 
internist for 30 years. Over the years, I reported my 
observations to him. Our internist brushed off my concerns that 
these signs might be something serious by responding with, 
``Well, these things can happen,'' or ``It might be just part 
of his aging.''
    I would tuck away my fears until the next time and the next 
time. The wake up call, however, came when my love told me we 
had to file for bankruptcy. His compromised financial judgment 
had escalated to financial failure. Subsequently, we lost our 
home as well.
    I was left thinking, how could this ever have happened to 
us? I encouraged Ken to see another doctor to learn the reasons 
why. After seeing four neurologists and three internists in a 
year and a half, Ken was finally diagnosed definitely with 
Alzheimer's disease in January of 2011. Our story is not 
unique. Many families struggle to get a definitive diagnosis of 
Alzheimer's disease just like we did.
    Following his diagnosis, his second internist prescribed 
Aricept and told him to return in a year for a checkup. After 
receiving the diagnosis, Ken went through what he calls the 
three Ds--denial, depression, despair. I was devastated and 
desperate for more answers. We were given the diagnosis, but no 
information on what to expect or how to deal with the symptoms 
or how to even manage his atrial flutter along with the 
Alzheimer's.
    After three appointments with three different neurologists, 
we were finally able to find one with experience in treating 
people with Alzheimer's. Today, Ken is a patient at the Center 
for Memory and Aging in St. Paul with Dr. Michael Rosenbloom. 
And along with the Alzheimer's Association, we have developed a 
plan not only for Ken to live well, but also for me as his 
caregiver.
    Maria Schriver's HBO documentary ``The Alzheimer's 
Project'' reports that 74 percent of caregivers do not survive 
the persons for whom they are caring. It is not only the person 
with the disease who needs care and support, but the care 
partner as well, especially to reduce stress. From our 
networking with others, we have also learned that our story, 
our financial hardship associated with the disease, is not 
unique.
    In many ways, I see my role as Ken's care partner much like 
that of an operations manager. I try to make sure he can be as 
independent as can be. We make a concerted effort to engage in 
social activities, to have a healthy diet, for Ken to exercise 
his mind and body, and for him to engage in creative 
expression. I find myself monitoring, monitoring, and 
monitoring him throughout the day to ensure his safety and 
well-being.
    Dr. Terry Barclay, neuropsychologist at the Center for 
Memory and Aging, submits that ``Living with Alzheimer's can be 
lengthened 10 percent with medication, but 90 percent by living 
well, and especially with socialization.''
    Through our experience, I have learned that there are 
definite deficiencies in our health system when it comes to 
dealing with Alzheimer's. Far too many physicians are not 
familiar with the warning signs of Alzheimer's or how to 
properly advise patients and their caregivers. Additionally, 
there is a lack of communication and coordination among 
physicians. Ken sees an internist, a cardiologist, and a 
neurologist to deal with various conditions. He carries a list 
of his 11 medications and supplements to each appointment to 
ensure that each physician is aware of what his other health 
providers have prescribed for him. Sadly, this is more often 
the case than the exception for many individuals with 
Alzheimer's and their caregivers.
    Thank you for the opportunity to testify today. I 
appreciate the steadfast support of the committee and its focus 
on chronic care. Alzheimer's is a disease that not only impacts 
the diagnosed person, but also the lives of their loved ones.
    I ask Congress to address chronic care issues around 
Alzheimer's with the same bipartisan collaboration demonstrated 
in the passage of the National Alzheimer's Project Act. This 
focus on quality dementia care will help individuals living 
with Alzheimer's disease and their caregivers around the 
country.
    An epidemic is well upon us, and too many families are in a 
situation like ours, facing a fatal brain disease that 
currently we have no way to prevent, cure, or even slow the 
progression of, and we are left without a support system to 
guide us.
    As a Nation, we cannot afford to wait until Alzheimer's 
bankrupts the Nation just as it already has so many hardworking 
families in Oregon, Utah, and across this country. We must make 
the smart investment now to realize a better, healthier future 
for our families and our Nation. Right now all we have is hope.
    Thank you.
    The Chairman. Thank you, Mrs. Lehmann. And in addition to 
hope, we have you, and I sort of see a size 7 halo over there 
by the witness table. And listening to your story, it also very 
much exemplifies what my mother dealt with. My mother had 
Alzheimer's and dementia, she got a master's degree from Yale 
in the days when no woman got a master's degree, and we saw 
very much the same evolution of events you did, and I very much 
appreciate your coming.
    [The prepared statement of Mrs. Lehmann appears in the 
appendix.]
    The Chairman. We have a number of champions here on this 
committee on both sides of the aisle, Democrats and 
Republicans, who want to follow up on your Alzheimer reforms, 
including me. So we thank you.
    Mrs. Lehmann. Thank you.
    The Chairman. Thank you very much for it.
    Dr. Bornstein, welcome.

   STATEMENT OF DR. WILLIAM A. BORNSTEIN, CHIEF QUALITY AND 
         MEDICAL OFFICER, EMORY HEALTHCARE, ATLANTA, GA

    Dr. Bornstein. Thank you, Chairman Wyden, Ranking Member 
Hatch, and members of the Senate Finance Committee, for 
inviting me to discuss Emory Healthcare's efforts related to 
caring for our chronic care patients. I also wish to extend a 
special thanks to Senator Johnny Isakson, who is Emory's 
Senator and a good friend and strong supporter of our work.
    As the Chief Medical Officer of Emory Healthcare in Atlanta 
and as a practicing endocrinologist, I know firsthand the 
challenges faced by our patients with multiple chronic medical 
conditions, about which you have heard eloquent testimony. Many 
of my patients have diabetes, and most patients with diabetes 
have other medical problems: hypertension, coronary disease, 
kidney disease, and many others. Many of these patients see 
multiple specialists. They may be seeing me for diabetes, a 
cardiologist for care of the coronary disease, and a 
nephrologist for care of the kidney disease. And everything 
that each of us does, as you have heard already this morning, 
affects the whole patient.
    Many problems, like elevated blood pressure and elevated 
cholesterol, overlap each of our specialties. Each of us 
strives to take a patient-centered approach to treating a set 
of problems, but the challenge is, how do we make sure that all 
the care is coordinated so that we can take a patient-centered 
approach to the care of the whole patient?
    At Emory, we have a highly sophisticated, single electronic 
medical record system that spans our hospitals and outpatient 
clinics so that all providers can see the entire medical 
record. However, coordination of care requires more than 
technology and good intentions. It requires reallocation of 
time, from face-to-face interactions, to time devoted to 
coordination of efforts among providers, and in non-face-to-
face interactions, providing continuous care of patients.
    So in addition, we are hiring and training nurse care 
coordinators. We embed these nurses into primary care practices 
and feed them data identifying the highest-risk patients, and 
the care coordinators stay in touch with those patients, 
helping to make sure that they are doing well and, when they 
are not, providing them the care they need.
    However, as you know, care coordination and technology 
infrastructure are expensive. When these investments are 
successful, they help keep our patients out of emergency rooms 
and hospitals, thus reducing the revenue of our health care 
system. Under fee-for-service, I am in the awkward position of 
asking our health system to fund efforts that will reduce our 
revenue within a context of declining reimbursements like the 
2-percent sequester cut and the ever-looming specter of SGR.
    To try to deal with these challenges proactively, we have 
formed a clinically integrated network, the Emory Healthcare 
Network or EHN, which is our Accountable Care Organization, 
that provides extensive infrastructure and support for 
physicians in a collaborative and quality-based environment 
that drives outstanding performance, improves care 
coordination, enhances outcomes, and controls costs for our 
patients and our community. EHN is contracting with payers in 
ways that liberate us from the constraints of fee-for-service 
and move us towards better alignment of needs among patients, 
providers, and payers.
    We now have a ``shared savings'' contract with BlueCross 
BlueShield and are negotiating similar contracts with other 
commercial payers. Under shared savings, if we are able to 
lower the total cost of care and improve quality through better 
coordination of care, we share in the savings. Shared savings 
can help offset what would otherwise be negative financial 
consequences of the investments needed to improve patient care.
    It costs in the range of $6 million to $10 million annually 
to run EHN, and that does not fully include the costs incurred 
by private practices to connect to our Emory Health Information 
Exchange, which we require for their participation in EHN.
    As the leading academic medical center, we care for some of 
the most complex cases in the country. Emory has been 
remarkably successful in working within current constraints. 
Emory is the only health system in America to have more than 
one hospital ranked among the top 10 academic hospitals in the 
prestigious University HealthSystem Consortium Quality and 
Accountability Scorecard. Indeed, both of our eligible 
hospitals, Emory University Hospital and Emory University 
Hospital Midtown, have been in the top 10 for the past 2 years 
and are ranked number 2 and number 3, respectively.
    We are proud of this achievement, most importantly because 
of what it means for our patients. However, we are by no means 
satisfied. We need to apply and extend these achievements 
across the continuum to achieve the triple aim of better 
health, better health care, and lower costs for the population 
we serve.
    We can only achieve this through better coordination of 
care. Our physicians and staff desperately want to take better 
care of these patients. That is why we practice medicine. 
Current structures create frustration among our providers, as 
well as for our patients. Our primary care teams feel these 
frustrations most acutely, and these stresses contribute to the 
relative lack of interest in primary care and other non-
procedural specialties. Frankly, it is easier and more 
profitable to do procedures than to try to coordinate care in 
our current system.
    Our Nation's capacity to grow its physician workforce is 
predicated on doctors being able to do what they enter medicine 
to do--care for all their patients' needs. American health care 
should be in a golden age. We have so much to offer patients, 
and so much more than just a few years ago. To deliver on this 
promise, we need a new framework that removes barriers and 
rewards high-quality coordinated care.
    Thank you for shining a spotlight on the challenging issue 
of chronic care. I look forward to answering any questions you 
may have.
    The Chairman. Doctor, thanks for the help that you have 
given the committee and also for highlighting how flawed the 
incentives are in today's system. And we look forward to 
questions.
    [The prepared statement of Dr. Bornstein appears in the 
appendix.]
    The Chairman. Ms. DeMars?

        STATEMENT OF CHERYL DeMARS, PRESIDENT AND CEO, 
                  THE ALLIANCE, FITCHBURG, WI

    Ms. DeMars. Good morning, Chairman Wyden, Ranking Member 
Hatch, and members of the committee. I am here today to 
represent The Alliance, which is a not-for-profit cooperative 
owned by over 200 employers in Wisconsin, Illinois, and Iowa, 
who together provide health benefits for over 90,000 employees 
and their family members. Employers who are members of The 
Alliance are working to address chronic diseases by creating 
healthy workplaces, by reducing the financial burden to 
patients through value-based benefit designs, and by raising 
the bar on our expectations for health care delivery.
    Our efforts in wellness and in benefit design are 
important, but alone are insufficient to address the cost 
problems we face in health care. The results of our efforts are 
too modest and too slow. So simultaneously, we need to use our 
role as purchasers of health care to make faster progress, and 
that is the idea behind a new initiative that we are developing 
called Quality Path.
    Through Quality Path, we will move market share to high-
value physicians and hospitals and, in doing so, overcome some 
of the barriers to faster progress; specifically, lack of 
information to help us understand the performance of individual 
physicians, and incentives that are misaligned or nonexistent 
for patients and providers. We are starting with high-cost, 
schedulable procedures in cardiology and orthopedics, because 
those are the areas where our members spend the most money.
    Here is how the program will work. First, Quality Path will 
evaluate individual doctor and hospital pairings. Consumers, 
patients, want and deserve information to help them understand 
the performance of their doctors. Yet, physician-specific 
public reporting remains an elusive goal, and the promise of 
the Physician Compare website is yet to be realized. We will 
address this unmet consumer need by requiring physicians to 
disclose their performance on quality measures as part of the 
Quality Path application process.
    Second, Quality Path will set a high bar. We intend to make 
a real and lasting difference in health care and so have 
carefully chosen the criteria that we will use to designate 
Quality Path providers.
    We have relied on input from the clinicians who deliver the 
care and their specialty societies, and have aligned with 
leading-edge public and private-sector initiatives. The most 
notable is the CMMI-funded SMARTCare project, which was 
developed by the leadership of the Wisconsin chapter of the 
American College of Cardiology and the Wisconsin Medical 
Society.
    Doctors and hospitals that receive the Quality Path 
designation will score high on quality measures, will avoid 
exposing patients to harm associated with the overuse of 
imaging tests, will consult with patients and respect their 
preferences when multiple treatment options are available, and 
will talk with patients about future care needs and document 
their wishes for end-of-life care as appropriate.
    Finally, Quality Path will lower costs for employers and 
patients. We will be negotiating more aggressive, lower, 
bundled prices with warranties. This pricing will only be 
available to employers, our members, who agree to implement 
substantial financial incentives for their employees to choose 
Quality Path providers. That way, Quality Path will 
simultaneously reward patients who seek high-value care and the 
providers that deliver it.
    Quality Path relies on access to data and the flexibility 
for purchasers to innovate, and that is where the Federal 
Government can help. Employer organizations like ours and the 
all-payer claims databases we rely on need access to Medicare 
data to enhance physician level measurement. We also need the 
flexibility to design plans that reward high-value care. And we 
need partners. Market-based efforts like Quality Path will only 
succeed if there is a significant business case for providers. 
State and Federal Governments, acting in their role as 
employers and purchasers, can join with private-sector efforts 
to amplify our signal strength.
    Data-driven innovation holds great promise for improving 
the value of care, and thank you for letting me share 
employers' efforts to help make that happen.
    The Chairman. It is very helpful to have that employer 
input, Ms. DeMars.
    [The prepared statement of Ms. DeMars appears in the 
appendix.]
    The Chairman. Senator Hatch has tried to be in two places 
at once this morning, and he is very much needed in Judiciary.
    So, Senator Hatch, I am pleased to have you start.
    Senator Hatch. Well, I am grateful to all of you. Your 
testimony surely hit home here, and we want to do everything we 
can to help, and we will see what we can do.
    I am sorry that I am split between two committees--and I 
will go over to Judiciary--but I am very interested in 
everything you said and everything you have suggested.
    So with that, I hope you will forgive me for having this 
burden of two committees going at the same time.
    Thank you.
    The Chairman. Senator Hatch, thank you. You cannot quite be 
cloned, so it is great to have your leadership.
    Let me start with a question that I have been struck by, 
having kind of watched the odyssey of those with chronic 
disease over the years, really beginning in those Gray Panther 
days and then over the years. And what you bump up against 
first is the staggering burden, the truly staggering burden on 
patients and families.
    They have the disease, and then they have to try to figure 
out how to make their way through--as you, Ms. Dempsey, said so 
eloquently and you, Mrs. Lehmann--this sort of maze of 
treatments and medications and appointments. It just strikes 
me, it is like the system puts this gigantic boulder on your 
back, this overwhelming burden on your back, when you are 
trying to deal with chronic disease.
    Patients have several physicians. They have this--I always 
called it a mountain of prescriptions, but I guess I have to 
rename it now that I see tray after tray over there, Ms. 
Dempsey, consuming the witness table. They just delivered a 
phone book the other day to the staff, and people now have 
medical records the size of phone books.
    The first question I would like to see if we can get our 
arms around as we try to move forward is--and, as I have 
indicated, there are Senators here who have been really 
passionately interested in these issues: Senator Stabenow, for 
example, and Senator Toomey on this Alzheimer's issue, Senator 
Casey looking at chronic disease for young people, and others--
Senator Isakson, teaming up with me.
    There are a lot of Senators who care about this issue, and 
what I am struck by is, at the outset, how valuable to me, kind 
of by the seat of my pants, it would be to have one individual, 
one single individual, whether it is a nurse, a physician, 
another individual from the health care system, who basically 
would be the go-to person for coordinating the appointments and 
keeping track of the multiple doctors and making sure that one 
doctor communicates with another. That was the whole point of 
the electronic medical record. You did not want Dr. 3 to repeat 
all the stuff that Dr. 2 and Dr. 1 did, but we are still trying 
to make sure that interconnection is there.
    So let us start with you, Ms. Dempsey, and you, Mrs. 
Lehmann, to get on the record how valuable it would be to you 
two to have one single individual. Now, we can have the debate 
about who it ought to be, but it seems important to have one 
single individual be that go-to person to coordinate the array 
of visits and services and the like.
    Let us start with you, Ms. Dempsey.
    Ms. Dempsey. It would be life-changing. It would be 
absolutely wonderful to be able to, I guess, free up some of my 
time and maybe even relax enough to know that I do not have to 
follow a step behind everyone, foot-for-foot, to make sure that 
things are done and make sure that my care is at the top of the 
list.
    If I had that one person who was the go-to person who would 
make sure that everything was done correctly and everything was 
coordinated between everyone else, it would be just invaluable.
    The Chairman. And you, Mrs. Lehmann?
    Mrs. Lehmann. Not only would it be life-changing, it would 
be life-giving, because most of my time is spent feeling 
overwhelmed. Where do I call for this? Where do I call for 
that? We are now facing looking at long-term care. How are we 
going to do that?
    This is a very huge issue. I want to keep Ken at home with 
me. I want to be his caregiver, but I am going to need help. He 
weighs considerably more than I, and I am going to need help, 
and I find this very, very overwhelming.
    If I had one person whom I could call and say, ``How can we 
do this, how can you help me,'' I would so appreciate that.
    The Chairman. Well, thank you both. I am going to have 
plenty of other questions after I make sure my colleagues get a 
turn.
    But literally, since my Gray Panther days, that struck me 
as the prerequisite to turning this around. You all have called 
it life-changing and life-giving. I just would like to take 
some of that boulder off your shoulders.
    When you are dealing with the conditions that you have 
described this morning, and you have to figure out how to 
navigate this byzantine health system--I saw it with my mother, 
and I said to myself at one point, so here I am, I am a U.S. 
Senator, that is a pretty important position, and everybody in 
the health care system knew about it, and my mother got a 
master's degree from Yale, and we were in her hometown where I 
played basketball, and I said to myself, if it is this hard for 
somebody like me and my family, what is it like for everybody 
else who is not starting with that?
    That is what we have to turn around.
    So let me allow my friends to have at it.
    Next is Senator Stabenow. And you should know she has done 
extraordinary work on Alzheimer's. I do not think a month goes 
by without Senator Stabenow talking to me about what we ought 
to be doing on this committee about Alzheimer's.
    Senator Stabenow, welcome.
    Senator Stabenow. Thank you, Mr. Chairman, for your 
incredible leadership. And thank you to each of you for the 
role that you play and the important work that you are doing.
    Mrs. Lehmann, thank you, and Ms. Dempsey. And before I ask 
some questions regarding Alzheimer's, I do want to just start, 
Mr. Chairman, by saying for the record that, while there are a 
lot of things that folks want to talk negatively about in the 
Affordable Care Act, because we have the Affordable Care Act, 
there are no more preexisting conditions.
    So, Ms. Dempsey, at least you are not having to worry about 
finding insurance, with all the challenges that you have. There 
are no annual or lifetime limits on the number of treatments 
that you can receive. So at least you are not also having to 
battle all of that. And we are in a situation where there are 
more affordable options for people, and, while we are not doing 
everything that we can on cost savings, at least we are having 
the conversation on bundled payments and on coordination and 
the accountable care groups.
    In Michigan, we have seen some real savings to date on 
this. So there is more to do faster, but at least we are 
talking about quality of care and what needs to be done. And in 
my judgment, we have to talk about case management, Mr. 
Chairman, in a much more real way.
    First, let me just say for the record, the number-one cause 
of death of women in this country is heart disease. People do 
not realize that. One out of three deaths of women, Mr. 
Chairman, is because of heart disease. So we need to remind 
ourselves of that, because doctors do not understand, 
unfortunately. Women have different symptoms. They are 
diagnosed differently. Oftentimes, it is said it is stress when 
it is actually something happening in terms of heart disease.
    We have a very important report coming out from the FDA, an 
amendment that I authored in the FDA Safety and Innovation Act 
that we passed, that is going to require an action plan for 
more participation of women in drug clinical trials, because 
women are different than men and have different reactions.
    So we at least want to make sure, Ms. Dempsey, that what 
you are carrying around in there is actually the best for you 
to have as a woman. So it is very important, the FDA action 
plan, Mr. Chairman, that we are waiting on, in August.
    Mrs. Lehmann, let me just say that your story emphasizes 
and reenergizes me to pass something that Senator Collins and I 
have introduced called the Hope for Alzheimer's Act. We have to 
get this done.
    As you know, this would require comprehensive clinical 
diagnosis; evaluation for Alzheimer's disease; caregiving plans 
for newly diagnosed individuals and caregivers about all the 
options, all the things that you are talking about, to make 
that available; as well as documentation on the planning going 
into the medical records and so on--that on top of critical 
research that we have to continue to do, because there is hope, 
and we should be doubling down on that health research.
    But I am wondering if you could just speak to, if 15 years 
earlier you had been able to have the tools to diagnose your 
husband's Alzheimer's symptoms and so on, what difference would 
that have made to both of you in your lives if you had really 
known earlier and been able to get the care that you could have 
had at that time?
    Mrs. Lehmann. It would have been tremendous, just 
absolutely tremendous. By the grace of God, I am still 
standing. That is how I feel. This last 15 years has been very, 
very difficult.
    It is the love that we have for each other that has truly 
sustained us. It is our faith and our family. Without those 
elements, I cannot imagine having been through this.
    Just going to the myriad of doctors and neurologists, whom 
we expected would know or be knowledgeable about Alzheimer's, 
but were not, I was hoping at the time, when I was looking for 
the second neurologist, that there was just a guide in the 
yellow pages that would say ``specializes in Alzheimer's.'' And 
the Alzheimer's Association was able to get me a list of 
doctors who did specialize, but it was later in the process.
    Senator Stabenow. And it should not be that hard. It should 
not have been that hard.
    Mrs. Lehmann. No, it should not. It should not. And if only 
a doctor--one of the very first doctors we had seen had 
referred us to the Alzheimer's Association. It was actually a 
friend in California who called and said, ``How are you 
doing?'' And when she heard how I was not doing, she said, 
``Call the Alzheimer's Association. My dad had Alzheimer's, and 
they were such a help to me. Maybe they will be a help to 
you.''
    So here is another instance of the caregiver help line, 
which I now refer to as my caregiver lifeline, being the 
beginning of the change.
    Senator Stabenow. That is a wonderful group.
    Mr. Chairman, I know you know this, but just for the 
record, let me say that one out of five Medicare dollars goes 
to the treatment of Alzheimer's, one out of five Medicare 
dollars. This is a huge issue, predominantly of quality of life 
and life itself, but it is also a huge issue for us in tackling 
costs.
    So I very much appreciate your doing this. And also, again, 
Ms. Dempsey, thank you for being here. I mean, listening to 
you, it is overwhelming just listening to you and just 
unbelievable what you are challenged with. So thank you very 
much for taking the extra effort to come and share your story.
    Ms. Dempsey. Thank you for your dedication.
    The Chairman. Thank you, Senator Stabenow.
    In addition, Mrs. Lehmann, you should know that Senator 
Toomey has spoken to us about Alzheimer's, as has Senator 
Warner, and there will be very strong support in this committee 
on both sides of the aisle for reforms on Alzheimer's.
    Before I recognize Senator Isakson, your Senators, Mrs. 
Lehmann, Senators Klobuchar and Franken, would like to submit 
statements for the record.
    I ask unanimous consent that the statements be submitted 
for the record.
    Hearing no objection, so ordered.
    [The prepared statements of Senators Klobuchar and Franken 
appear in the appendix.]
    The Chairman. We very much appreciate the good work that 
Senator Isakson has done in this area. He has been my partner 
now for many, many months. When you work with Senator Isakson 
on health reform, you are running with the right crowd. So I am 
very appreciative.
    Senator Isakson, your questions?
    Senator Isakson. Thank you, Mr. Chairman.
    Dr. Bornstein, thank you for your testimony, and thank you 
for coming to our rollout here. I guess it has been a year ago 
now since you came up on the coordinated care.
    Your testimony was very compelling on one point, and I want 
to kind of repeat a part of it. Your embedded care--what did 
you call it: care coordinators or nurses? Is that correct?
    Dr. Bornstein. Yes, sir.
    Senator Isakson. You are not reimbursed through any system 
for those nurses, are you?
    Dr. Bornstein. Correct.
    Senator Isakson. But you use them to coordinate the care of 
your patients. Is that correct?
    Dr. Bornstein. Yes, sir.
    Senator Isakson. Which lessens the number of visits on a 
fee-for-service basis for which you are reimbursed.
    Dr. Bornstein. Yes, sir.
    Senator Isakson. So, in other words, it costs more to do 
less and less to do more.
    Dr. Bornstein. Yes, sir.
    Senator Isakson. So, if we were doing more care 
coordination, we would be in much better shape financially as a 
country, and we would lessen the burden of health care and 
improve its quality. Is that correct?
    Dr. Bornstein. Exactly.
    Senator Isakson. If Ms. Dempsey was your patient and you 
had an embedded care coordinator in the practice, would the, 
not misdiagnosis, but the improper prescription of the drug for 
rheumatology that affected the seizures have been caught by the 
care coordinator or by health information technology?
    Dr. Bornstein. Well, I think the care coordinator could 
certainly play a role in that. Our information system would 
help alert us to that. I also believe in the important role of 
primary care--as in the earlier discussion--the fact that we 
need somebody who is kind of captaining the ship and looking at 
all those pieces.
    But I think there is another element, and the dependency on 
third parties coordinating care, we need to have that built in, 
but we also need to have all of the individual specialists 
thinking about care coordination through the process of care.
    So, to give you an example, it is very similar to what Ms. 
Dempsey talked about, and I use a kind of a litmus test for how 
our system is performing. So, when I take care of a patient 
with diabetes who might be seeing another specialist, and that 
specialist considers starting the patient on glucocorticoids, 
an anti-inflammatory drug that raises the blood sugar, the best 
thing is for that specialist to coordinate with me and plan 
around the effects of that medication on the blood sugar, so 
that is similar to the case of the medication that might 
increase the risk of seizures.
    The question is, how often does that happen, and the 
answer, in my experience, is almost never. Occasionally, the 
specialist will ask the patient to let me know about this, 
putting the burden on the patient to coordinate the care.
    So I think we know that most of these individuals are 
hardworking, well-intended, and care about the entire patient, 
but the burden of our fee-for-service structure is such that 
there is relentless pressure to see patients face-to-face and 
no real provision for the type of activities that need to go on 
when patients are not there, the conversations that the 
specialists need to have together that complement having care 
coordinators and primary care providers as well.
    Senator Isakson. Well, your testimony affirms what the 
chairman and I have been talking about, and that is that you 
can improve quality and lower the cost of improving the quality 
at the same time by coordinating care for people with multiple 
chronic illnesses.
    Dr. Bornstein. Yes, sir.
    Senator Isakson. On Alzheimer's, my mother passed away from 
Alzheimer's, and I was her caregiver for the first 2 years 
after my father's death, and one of the things I remember that 
aggravated Alzheimer's was when we would have to take her to a 
physician or take her to a medical appointment and take her out 
of her surroundings where she was staying.
    Do you experience that, Mrs. Lehmann?
    Mrs. Lehmann. Ken is still early-stage, but I definitely 
know that that is something that is very common with persons 
who have Alzheimer's. It can be very difficult, and it can 
result in behaviors that we do not see on a day-to-day basis 
necessarily.
    Senator Isakson. A care coordinator can help avoid the 
number of visits you have to make to individual physicians, 
which aggravates Alzheimer's tremendously.
    I remember from my mother's situation that she would go 
from a very docile individual to a very agitated individual 
because she was outside the surroundings that she was still 
familiar with when she was in my home.
    Mrs. Lehmann. Exactly, yes.
    Senator Isakson. Mr. Chairman, the testimony by both Mrs. 
Lehmann and Dr. Bornstein certifies what you have said all 
along, and that is, if we can do a better job of incentivizing 
coordination, the best by-product is better care, but it also 
is less cost, and I think the testimony we have heard today 
verifies both of those things.
    I want to thank our witnesses for being here today. And 
welcome to Georgia, Ms. Dempsey. We are glad to have you here. 
I have a house about two counties over from you, in Rabun 
County. It is God's country, and we are glad to have you there.
    Ms. Dempsey. My mother calls it God's country too. Thank 
you. I appreciate that.
    Senator Isakson. Thank you. Thank you, Mr. Chairman.
    The Chairman. I would just tell our guests that you often 
see Senators kind of engage in this bouquet-tossing contest 
where they say nice things about each other, but on the bill, 
the bipartisan bill that is here in the Senate and in the 
House--the Better Care, Lower Cost Act--that was Senator 
Isakson who, from the get-go, really saw that as the frame 
around which to build.
    So we very much thank Senator Isakson for his leadership.
    Senator Bennet is next. And I will tell you, Senator Bennet 
has been running in and out of this room trying to figure out 
how to juggle meetings and still be here to tackle these issues 
because he cares very much about it.
    Senator Bennet?
    Senator Bennet. Thank you, Mr. Chairman.
    The nice thing I would like to say about my colleague is 
``thank you'' to Senator Isakson for not using all your time. 
That never happens around this place. [Laughter.] They should 
build a statue to you.
    Senator Isakson. I am just coordinating better. [Laughter.]
    Senator Bennet. Mr. Chairman, thanks.
    And thank you all for the testimony. It is very, very 
consistent with what I have heard from patients and others in 
Colorado. I am delighted that this important topic is before us 
today.
    Dr. Bornstein, I have, I guess, a couple of questions for 
you. Senator Grassley and I, as well as others on this 
committee, have been focusing recently on how to improve better 
care coordination for children with chronic conditions who are 
often overlooked and suffer tremendously as a result of that.
    I am sure you encounter this at your hospital, children 
with medically complex conditions. I wonder if you could talk a 
little bit about the challenges that they face and the 
improvements that you have put in place to deal with our kids.
    Dr. Bornstein. Well, care of children at Emory is a 
separate endeavor, but I know that the same principles apply. 
Whether you are a kid or an adult, when you have multiple 
medical conditions--are on numerous medications, seeing various 
medical specialists--coordination is not going to occur 
spontaneously. It requires extra energy and effort. It 
requires, in particular, the allocation of time to do that.
    I think, as we discussed earlier, there has been lots of 
hope placed on information technology, and I think, given the 
complexity of the care we now render, information technology is 
absolutely crucial. It is necessary, but not sufficient. By 
itself, it will not solve these problems.
    Senator Bennet. Our sense is, even beyond just the 
institution of a hospital, if we could figure out how to create 
a set of conditions where the children's hospitals across this 
country were able to work closely----
    Dr. Bornstein. I think that is true for adult care as well.
    Senator Bennet. Yes.
    Dr. Bornstein. While we have our own integrated medical 
record--and that accomplishes quite a bit--as soon as they see 
a provider outside of our network, most of that information is 
invisible to us.
    Senator Bennet. You had mentioned in the discussion with 
Senator Isakson the problematic results that we face because we 
are enslaved to this fee-for-service system. I wonder if you 
could talk a little bit about other ways in which the Federal 
Government and private insurers create incentives that are not 
only not helpful to you, but drag you in a completely different 
direction from where you would like to go.
    I realize that is a big question, but since you are here 
and we have the folks who are, in theory, going to be making 
some of these decisions, think big, do not think small. If you 
were in the Senate, what are the handful of things you would do 
to make your life less of a misery?
    Dr. Bornstein. Well, let me actually try to address that 
from two altitudes. It is a big question.
    Senator Bennet. I am not implying that your life is a 
misery, but to the extent that we cause these problems---- 
[Laughter.]
    Dr. Bornstein. No, no. Well, let me say at the outset, I 
think the fact that we are having these conversations is really 
important, and I have great hope for the future and what is 
possible.
    As I said in my testimony, this should be a wonderful time 
for patients and for caregivers, given all of the wonderful 
things we have to offer, and if we can just break through the 
barriers and improve the structures, I think we can deliver on 
that promise.
    At the granular level, one big concern I have relates to 
how quality measures are used. So, with every quality measure 
and with every implementation, there are always unintended 
consequences. That is just the nature of the universe, more or 
less. But I think what is particularly important when we think 
about these quality measures is, what are the unintended 
consequences and how can we continually improve them?
    So, for example, when Ms. DeMars was talking about 
physician profiling, which I support, we need to make sure that 
severity adjustment is built into that. So, if I am an 
endocrinologist at Emory taking care of the most complex 
patient with diabetes, whose measures of glucose control may 
not be as good as some patients with less complex diabetes, how 
do we account for that, because, if we do not, what we will do 
is undermine the important efforts that are devoted to those 
patient groups in need of the most complex types of care.
    At the other end of the spectrum, if you would ask me for 
some thoughts about how we change all this, again, I think the 
payment structure is a big issue. We desperately need a system 
in which we have time to put energy and effort into 
coordination of care and use all of these tools that we are now 
developing.
    So for patients with diabetes, more and more of that care 
can be delivered when the patient is not there. It needs to be 
continuous care. So their blood sugars can be transmitted to me 
if they choose to have that happen, and I can have a more 
continuous relationship. Within our current structure, if I 
spend my time doing that, I am going to go out of business and, 
obviously, no margin, no mission.
    I also think there is a way to think about how we develop 
quality measures that reflect coordination of care. And this 
may get me in trouble with some of my colleagues, but it is a 
concept I have kind of thought about that, in a way, is joint 
and several liability.
    So, if a patient has a group of medical problems, my 
thought is that each of the providers taking care of that 
patient ought to be responsible for all of the measures of 
quality that patient needs. So, if they are seeing me for 
diabetes and an orthopedist for back pain, I ought to have some 
accountability for the back pain, and the orthopedist ought to 
have some accountability for the diabetes control, because, 
after all, what each of us does has an impact on the whole 
patient.
    The Chairman. Thank you, Senator Bennet. And thank you for 
all your efforts on this over the years. I look forward to 
working with you.
    Senator Warner is another committee member with a 
longstanding interest in Alzheimer's and chronic disease. Let 
us recognize him.
    Senator Warner. Thank you, Mr. Chairman. Thank you for 
holding this hearing. I know it is just the beginning of a 
series of hearings on this subject.
    I know you raised the issue after hearing Mrs. Lehmann 
talk, and I think probably all of us have a personal story. My 
mom had Alzheimer's for 11 years, 9 of which she did not speak. 
My father was the primary caregiver, along with my sister, a 
journey that was much harder than anything else I have ever 
done, and I have enormous respect for both of them for what 
they did.
    That has driven me, from my tenure as Governor and now as 
Senator--and we keep giving shout-outs to Johnny Isakson, but 
Johnny Isakson and I have taken another piece of this journey. 
I know Senator Bennet talked about children. You and Senator 
Isakson have talked about chronic disease. Senator Isakson and 
I have talked about and introduced legislation focused on 
advanced illness and that component of life's journey.
    And where I want to start, I think, with Mrs. Lehmann, Dr. 
Bornstein, and anyone else, is, I think Dr. Bornstein just 
raised some interesting things about joint and several 
liability, which is an interesting concept, an interesting 
idea. I am sure that some of your colleagues' heads exploded 
when you just said that.
    But prior to that kind of tail-end responsibility, one of 
the things at the front end is how you set up a care plan. I 
would like any of you to address this notion of, first of all, 
how we can do a better job of setting up these care plans to 
make sure that all of the not only medical providers, but other 
stakeholders in the individual's life, particularly as we look 
at advanced illnesses, are engaged, whether that is social 
workers, hospice, or others, number one.
    Then number two, if you could comment on what we from the 
legislative side, kind of the mirror image, if I am more at the 
other end of life as Senator Bennet spoke of, what we in 
Congress can do to advance that goal of having these care plans 
carry weight.
    One of the things that Senator Isakson looked at and I 
looked at is just having these kind of advanced directives or 
other tools be recognized across State lines. We heard from our 
first witness, in her movement from South Carolina to Georgia, 
the advanced directive she had would not be honored in many 
instances across those lines.
    Mrs. Lehmann, do you want to start--and then other members 
of the panel--on care plans, both what we can do from kind of 
the stakeholder standpoint and then from the Congress 
standpoint?
    Mrs. Lehmann. I have to say that this is a new concept for 
me. I have been, as I mentioned, the operations manager. I have 
been the care planner, and I have not gone as far as to make a 
wish list for what could be, because I am dealing with the day-
to-day----
    Senator Warner. Right. You are still living it.
    Mrs. Lehmann. I am indeed living it. But I think it would 
be so very helpful just to even have someone to coordinate 
with. I would not mind making the calls if someone would tell 
me where I should call, whom I should call.
    It is a myriad of lots and lots of resources, and I have 
access to them. I have loads of booklets from the Senior 
Linkage Line in Minnesota. I have so much wonderful 
information, and I look at it and I am overwhelmed.
    Senator Warner. Mr. Chairman, one thing I might mention 
that we started a decade ago, before I was even Governor in 
Virginia--based upon my own family experience--was, we set up 
something called Seniornavigator.com that answered those kind 
of questions, but also provided those kind of resources drilled 
down to zip code level, because so many caregivers or others 
just do not know where to turn. But that is one of the tools 
that could be put in the toolkit.
    Dr. Bornstein, do you want to address this?
    Dr. Bornstein. Yes, sir. Well, I think you put your finger 
on some very important opportunities.
    So, from the standpoint of care plans, I think what we are 
making good progress on is care plans for diseases. So patients 
with multiple diseases will have a diabetes care plan, and a 
coronary artery disease care plan, and so forth.
    What we need is a care plan for all of those diseases, an 
integrated care plan designed for that individual patient that 
takes into account all of their illnesses.
    Again, I think that will not happen without a payment 
structure that does not solely reward visits. It requires one 
that will reward those kind of efforts for producing better 
care.
    Senator Warner. So you do not think it is a rational system 
where we compensate a medical professional treating someone 
with advanced illness for repeated tests, but refuse to 
compensate that same medical professional for sitting down and 
actually talking through with the family this stage of life.
    Dr. Bornstein. Exactly. In fact, we have a very successful 
palliative care program at Emory, but what they tell us is that 
the conversations they need to have with patients and families 
take a long time, and, even under the current palliative care 
reimbursement codes, they are not able to sustain themselves.
    I personally think that there is a great need for more of 
these conversations to occur outside of health care facilities. 
You are probably familiar with Ellen Goodman's Conversation 
Project. These are hard conversations. Even very sophisticated 
families will often do everything they can to avoid the 
conversations. But there are tools out there, and we could do a 
better job of promulgating those tools.
    Again, this goes way beyond health care systems. It is kind 
of a public health opportunity.
    Senator Warner. And one thing I just would mention there. I 
know my time has expired. But oftentimes the doc may actually 
be as uncomfortable having the conversation as the family.
    Dr. Bornstein. Absolutely. Absolutely. And the different 
specialists may be on different pages, and they need to have 
those conversations together as well.
    Senator Warner. Thank you, Mr. Chairman.
    The Chairman. Thank you, Senator Warner. And our guests 
should know that, in addition to always raising these important 
issues, what Senator Warner has described dovetails very well 
into a very large demonstration project that is going to be 
beginning shortly and will run through CMS, called Medicare 
Care Choices. And, for the first time, this would allow 
patients to have an option between curative care and hospice 
care, which in the past has not been permitted.
    All the applications are in, and they are making the 
decisions. So this is about to be rolled out shortly, and I 
think it dovetails well with the important work Senator Warner 
is talking about.
    Senator Casey?
    Senator Casey. Mr. Chairman, thank you very much for the 
hearing, and I want to thank you as well for sharing your own 
personal story about your mom.
    I left here a couple of moments ago and had a meeting about 
a whole set of other topics, foreign policy, and the person in 
the meeting, when I told him where I was going back to, he 
said, ``I have a 94-year-old mother, and she is the equivalent 
of a concert pianist. And she is 94 and she has Alzheimer's, 
but she can still play very well, and yet other parts of her 
life are more complicated.''
    So it affects so many families. Senator Warner and others 
have spoken to this over many years.
    I will direct my questions not to Ms. Dempsey and Mrs. 
Lehmann--and I do not do that for any other reason than that I 
have limited time--but I am especially grateful you are here to 
provide your own personal testimony. It is not easy to talk 
about your own lives in a public setting like this, especially 
something as challenging as this. So we are grateful for your 
presence and your testimony and the information we derive from 
it.
    I will start with Ms. DeMars. I wanted to talk about the 
question of MS, in particular. We know--and this is known to 
medical professionals--that MS is a serious, debilitating 
disease in which a patient's immune system eats away at the 
protective covering on the nerves. We know that the treatment 
for MS is highly individualized, and that is why I ask you the 
question. Because, even though it is complicated and difficult 
to deal with, we know that proper management can yield great 
results in reducing symptoms, slowing disease progression, and 
improving quality of life.
    So I guess the basic question I have for you is, when you 
look at what plans and employers are doing, how do employers 
select plans that ensure that patients with MS and other 
chronic conditions have access to the full range of available 
therapies? Could you speak to that?
    Ms. DeMars. Sure. Thank you, Senator Casey.
    Senator Casey. And I should say, at a reasonable cost.
    Ms. DeMars. Well, that is a tricky part too.
    Our members are self-funded employers. So I will speak from 
that perspective. We understand that the health of our 
workforce is directly related to our business results, and so 
we share an interest in ensuring that our employees and their 
family members get the right care.
    Increasingly, employers are looking to the science, looking 
to research, to help them understand what they should be 
covering and at what levels, to ensure optimal health. Value-
based benefit design is the nomenclature that is being used to 
refer to the practice of providing clinically sensitive, 
clinically nuanced coverage for employees. So the science 
related to MS would be something that would factor into a self-
funded employer's design of their benefit plans to ensure 
adequate coverage for that condition.
    Senator Casey. Is there anything you would hope we would do 
to either further incentivize or facilitate this kind of 
approach to MS, or do you think we are on the right track?
    Ms. DeMars. Well, maybe I could just speak more broadly 
than specifically to MS. I think the PCORI* research has great 
promise to help us understand the relative value of tests and 
treatments that we can begin to factor into how we provide 
coverage.
---------------------------------------------------------------------------
    * Patient-Centered Outcomes Research Institute.
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    Senator Casey. Thank you very much.
    I want to turn to Dr. Bornstein and the question of the 
socioeconomic status of beneficiaries, which, like everything, 
has an acronym: SES. There has been a lot of discussion and a 
lot of recent research on how the socioeconomic status of an 
individual can affect both outcomes and health.
    You know from the work of the committee and from your 
involvement with these issues that delivery system reform is a 
huge priority for us and a major topic. Sometimes what is less 
often discussed is something I am sure you and others have seen 
as kind of a growing body of research and evidence that racial 
and ethnic minorities and people with lower average incomes 
often receive lower quality of care than folks in other income 
or racial categories.
    Can you speak to that in the context of--I guess the basic 
question is, do you think there is a utility and a need to 
include these kinds of what might be called socioeconomic 
status factors when determining health care policy? I know it 
is kind of a broad question.
    Dr. Bornstein. Yes, sir. I think absolutely a critical 
element of improving health is addressing the socioeconomic 
disparities. Right now, there is debate going on as we speak 
around risk adjustment for hospital readmission rates related 
to socioeconomic status, and I think that kind of illustrates 
the case very well.
    From a hospital standpoint, the hospitals that serve the 
more disadvantaged populations typically have higher 
readmission rates. As you know, much of what happens----
    Senator Casey. And they can be penalized because their 
rates go up, even though they have a more difficult challenge.
    Dr. Bornstein. Absolutely. So much of what determines the 
likelihood of readmission occurs after the patient leaves the 
hospital. And so their home situation and their access to care 
and their support structures have a significant impact on that. 
To penalize those hospitals for things that are very much out 
of their control would have the unintended consequence of a 
further deterioration of their economic viability in terms of 
providing that care.
    By the same token, that needs not to fall off the country's 
radar screen, because this is a problem, and the fact that the 
disadvantaged have higher readmission rates and worse outcomes 
does need to be addressed. But the question is, does that need 
to be addressed by the individual hospital which they are just 
being discharged from or some other element of society? So I 
think it is a critical consideration, and we need to never 
forget about it.
    Senator Casey. Thank you very much.
    The Chairman. Thank you, Senator Casey. And I know you have 
talked to me about these chronic care issues, particularly in 
the context of kids, a number of times over the years, and I 
very much appreciate your advocacy.
    We are joined by Pennsylvania's other Senator, Senator 
Toomey.
    Senator Toomey. Thank you very much, Mr. Chairman.
    I want to thank all the witnesses for being here today.
    I direct my question to Mrs. Lehmann. Your story is 
painfully familiar to so many Americans who are suffering 
through some variation on that.
    I wonder if you could just give us some more thoughts from 
your perspective on how health care providers might approach 
care differently: the importance of coordinated care, the 
importance of whether that is a team or whether that is an 
individual. Your husband sees multiple physicians. Who should 
have that responsibility? Do you have any thoughts about how 
the focus of the care could be different and could be helpful 
to the patient and the caregiver?
    Mrs. Lehmann. I think among Ken's doctors, our neurologist 
is our most important person. Alzheimer's is our primary 
concern. It is fortunate that his atrial flutter is somewhat 
under control through medication. So he is able to thrive with 
it.
    When someone asks, who is your primary doctor, I always say 
the neurologist, because in order to live well with 
Alzheimer's, it begins with him. It begins with how he helps to 
coordinate the health plan, which he has to a degree.
    I think it comes in different portions or different 
compartments, but what he is looking at in particular is making 
Ken's life as rich and as powerful as it can be on a day-to-day 
basis. So he is a very important part of a program that Ken is 
in, entitled Living Well. It is run by the Alzheimer's 
Association, by the Wilder Foundation of St. Paul, MN, and by 
the Jewish Community Center, which has opened its doors to 
welcome us on their campus every week.
    With that Living Well program is associated a caregiver 
cafe. So Ken and I go together, and this is very, very 
important. It is not a day program where I drop him off and I 
do my own thing, which once in a while happens, because they 
insist that we have some free time, and we all say ``but we 
want to come, we want to be together, we want to have this time 
together.'' But we come together, we are a couple, we are 
supporting each other in this. He goes to his program where 
they learn about good diet, where they exercise, and where they 
do a lot of creative expression, which is turning out to be a 
very, very important part of living well with Alzheimer's.
    So Dr. Rosenbloom has been very much a part of that. In 
fact, he comes to the Living Well program. He is a part of it 
as far as speaking to the caregivers, speaking to the persons 
with the disease. Also, the neuropsychologist from our center 
comes to answer questions about the disease for the caregivers, 
as well as for the persons with the disease. So that is an 
aspect which is very, very important in dealing with our daily 
living.
    For me, dealing with finances--and the system--is another 
issue where I will need help further down the line. That is 
another triangle or another piece of the pie that I need 
assistance in, but I am so appreciative of the care plan that 
we have with our neurologist.
    Senator Toomey. And does the neurologist sort of take 
responsibility for anticipating that, for instance, at some 
point, Ken is less able to communicate a discomfort or a 
problem that would be an indication of some other problem? So 
is he the point person for making sure that they are keeping up 
with what needs to be monitored?
    Mrs. Lehmann. He is. He is. In fact, at our last 
appointment, he addressed that very issue, just knowing that 
the disease is progressive and we will be looking at different 
living situations and so forth. So he has been the point person 
for that, for which I am very grateful.
    Senator Toomey. Well, thank you very much. Thank you for 
coming and testifying today. We appreciate it.
    Mrs. Lehmann. Thank you.
    Senator Toomey. Thank you, Mr. Chairman.
    The Chairman. Thank you, Senator Toomey. We have talked 
about this issue, you and I, a number of times, and I look 
forward to working very closely with you.
    Let me go to the next question. We will involve you in 
this, Ms. DeMars, as one of the payers and employers. We have 
talked a lot about Medicare, for example, which I put a special 
focus on. But chronic disease is often diagnosed well before a 
patient becomes Medicare-eligible.
    In your view, what strategies can the committee pursue, 
again, in a bipartisan kind of fashion, so that when 
individuals age into the Medicare program, they are going to be 
healthier than they would have been otherwise?
    Ms. DeMars. Well, I think the transition to Medicare and 
the health status of people coming into Medicare, of course, is 
contingent upon the health care and the lifestyles that they 
are living prior to Medicare age.
    So I am thinking about an answer to your question--how 
could Congress help promote better health pre-Medicare for 
people with chronic conditions? For employers, we focus on 
early detection. As I said earlier, we have a vested interest 
in the health of our workforce, and so we focus on things like 
health risk appraisals with biometric screenings, which 
oftentimes detect or identify undetected----
    The Chairman. You all offer those biometric screenings?
    Ms. DeMars. Yes. Many of our member companies do annual 
biometric screenings at work, for a couple of reasons. The 
first is, as an employer, they want to understand the aggregate 
health of their employee population and use that baseline data 
as a way to monitor the impact of workplace-based wellness and 
health promotion programs.
    But conducting those biometric screenings also provides 
individual information, confidential information, to each of 
the participants and, unfortunately or fortunately, oftentimes 
people are learning that they have a chronic condition for the 
first time through that biometric screening.
    So early detection is key, and then optimal management once 
people are diagnosed. One of the things that The Alliance is 
doing is realigning how we pay physicians based on optimal care 
of diabetes, a measure that we are using. So that addresses 
early detection and only begins to address the need to realign 
financial incentives.
    Then there is the complicated question of how we can help 
people live healthier lifestyles. Employers work on that 
because they have people there during the workday, but it is a 
much bigger issue than one that employers can tackle alone.
    The Chairman. I very much would like to follow up with you 
and am glad you are working on the program, because we clearly 
want to see if we can come up with some fresh, creative ways to 
involve employers in this. I think we all understand that many 
of the underlying challenges patients face when interacting 
with the health care system are present both in Medicare and 
the non-Medicare population, and to the extent that we can find 
a way, as I describe it, to age into Medicare having played 
offense to the greatest extent possible--as you talked about 
with biometric screenings and the treatment kind of 
approaches--I think that makes a lot of sense.
    So we are very interested in working with all of you, the 
employers.
    Ms. DeMars. That is excellent. I think there are great 
opportunities for alignment between public-sector and 
commercial employers that share the same interests in promoting 
health and optimal health care at an affordable cost.
    The Chairman. Let us turn to another topic that is really 
not for the faint-hearted, but one we have to figure out how to 
make additional progress on, and that is how we ought to go 
about using this array of health information technology.
    I call it the treasure trove that we now have of all this 
technology. It is electronic medical records, and ideally this 
would be good for patients because patients would have this 
information. It would be good for providers because it is going 
to help them do a better job of coordinating care.
    Also, Ms. DeMars made a point that I am interested in about 
the Medicare claims data, and how you use that. So why do we 
not just see if we can bring the four of you into this 
discussion about the health information technology.
    Let us start with you, Ms. Dempsey, and you, Mrs. Lehmann. 
With respect to your ability to access all this medical 
information from the various doctors, how is that working out? 
Is it a useful tool? Is it being shared? Is it hard to figure 
out whom to go to for what? Tell me your thoughts on that, Ms. 
Dempsey.
    Ms. Dempsey. I do not know that it is hard to figure out 
whom to go to. Once you call the doctor's office and explain to 
them what you want, you may wait on hold while they try to 
figure it out, whom they need to get you to and in what hands, 
but, no, for me, I have not found that that is a problem or a 
difficulty.
    The Chairman. You are able to get your hands on the 
information you need.
    Ms. Dempsey. Not right at the time, but through a process, 
yes.
    The Chairman. And it is fairly useful?
    Ms. Dempsey. Yes. Sometimes I do not get exactly what I 
need that would be useful, but I do eventually.
    The Chairman. And you, Mrs. Lehmann, tell me about your 
experience. I call it the treasure trove of data. Sometimes you 
almost wonder if there is too much. Tell me about how your 
experience is with respect to accessing all this information 
from your various doctors, and possibly if there are any 
suggestions you have on how the information could be more 
useful to patients like yourself, Ms. Dempsey, and others.
    Mrs. Lehmann. We have a binder at home, each one of us has 
a binder, and after the appointments with the neurologist, we 
take it home and get the 3-hole punch out and put the new 
paperwork in the binder. But that is the only medical report 
that we receive. Ken does not receive anything from the 
cardiologist, and, if I do not go with him, I have no idea what 
has transpired other than his relating to me what has 
transpired, nor do we get any record from the internist, who 
just makes a follow-up appointment but never gives any specific 
information from that appointment.
    But I so appreciate when I do get that information from the 
neurologist. I am always there, but I also can review what has 
transpired, and any referral that he may give us, he puts down 
the phone number. So everything that I need is right on those 
sheets. So that is wonderful.
    The Chairman. So you are doing well with the neurologist. 
And on the cardiologist front and the internist front, things 
are coming up a little short.
    Mrs. Lehmann. Exactly.
    The Chairman. Then let us get our providers and our payers 
into this whole question of health IT. I know, Dr. Bornstein, 
from being aware of your good work, that you all have put a lot 
of effort into trying to make health information technology 
work.
    What do you think the big challenges are in terms of how we 
tackle this, and even apropos of Mrs. Lehmann and Ms. Dempsey? 
Ms. Dempsey said that she thought it worked okay but that 
sometimes it was hard to kind of pry it out, and Mrs. Lehmann 
had some areas where it worked and some where it did not work.
    What do you think the next steps are in terms of health IT 
as it relates to chronic conditions?
    Dr. Bornstein. As you say, it is not for the faint of 
heart, and it is a big topic, but I think, exactly as you heard 
from Ms. Dempsey and Mrs. Lehmann, America is in a state of 
transition, and providers are at different points in that 
transition.
    At Emory, we are all connected. We have a patient portal, 
and so patients can see their lab results. We can communicate 
with patients about those lab results, and that is a beginning.
    Our goal is for the whole record to be available to 
patients, but it has to be done carefully, because sometimes 
not everybody wants to read everything that is in there, and 
that involves some additional research that needs to be done as 
to how best we use these tools.
    But then, when you start moving across systems, there are 
all kinds of barriers, and while we can see everything that we 
are doing, frequently a patient will be seeing a specialist 
outside of our system. The patient may or may not be getting 
the information from that specialist, and we may or may not be 
able to get that information. So that is a major barrier. 
Meaningful use will help move people toward sharing of 
information, but it is a slow process, and it has had its own 
unintended consequences.
    So I think more than anything, we need more research to 
understand how best to use this health information technology. 
Like everything else we have been talking about, there are 
unintended consequences to all of this. We need to learn how to 
be smart about it, but I think it is an important tool.
    The Chairman. Thank you. I am struck that you characterized 
it as a patient portal. Mrs. Lehmann described it as her binder 
and the like. Obviously, we are going to have to try to figure 
out ways to make this tool user-friendly for both the patient 
and the providers.
    I continue to hear from providers who describe this like a 
water torture kind of routine where they are up until 2 a.m. in 
the morning trying to fill out various and sundry kinds of 
records, and you just have this picture in your head. What this 
is all about is, we have providers up in the middle of the 
night trying to work on their charting. We need them ready to 
go at the crack of dawn to give the kind of quality health care 
services that are so important to our patients and their 
caregivers.
    So we are going to ask you some more questions, Dr. 
Bornstein, on this.
    I was interested by what you said, Ms. DeMars, on this 
Medicare claims data. And as you know, Senator Grassley and I 
have been very involved in the initial efforts to make a 
significant amount of data available.
    But what you are interested in doing is also extremely 
important, because you want to really get it down to the 
patient level, and we are going to have to figure out a way to 
make that doable so it protects the patient's privacy and the 
like.
    Tell us, if you could kind of wave your wand as an 
employer, trying to deal with Medicare claims data down at the 
individual level, what would you be trying to do?
    Ms. DeMars. Senator Wyden, we are one of the founding 
members of the Wisconsin Health Information Organization, which 
is an all-payer claims database to which payers across 
Wisconsin and self-funded coalitions like The Alliance 
contribute data.
    We are fortunate in that it represents 70 percent of the 
care for Wisconsin patients. The big hole is Medicare data, 
and, as Dr. Bornstein commented earlier, the task of getting 
physician-specific information is tricky and sensitive and 
critically important, and the more data we have to work with, 
the better we will be able to do.
    In addition, we need clinical information in addition to 
claims data. We have made a significant investment as a country 
in health information technology and health information 
exchange, and we look forward to the day when clinically 
important indicators can be fed into the administrative claims 
data to allow us to do a much more sophisticated job of risk-
adjusting performance measurements to take into consideration 
some of the things that Dr. Bornstein mentioned.
    The Chairman. You all have been a terrific panel and have 
given us a whole host of valuable ideas. I have been scribbling 
away, as you can see.
    Two hours in, let me kind of give you my take with respect 
to where we are. And I think your testimony has been so 
valuable, and you could see Senators on both sides of the 
aisle--nobody talked about what is the Democratic approach to 
deal with chronic disease, what is the Republican approach to 
deal with chronic disease. You had Senators on both sides of 
the aisle saying, let us talk about what is practical, what is 
fair, how is it going to be user-friendly for patients.
    I will tell you, my own judgment is that chronic disease 
has really gotten short shrift in the debate with respect to 
health care in America. It has gotten short shrift in the big 
debates.
    I do not think it happened deliberately. I see absolutely 
no evidence that a Senator got up in the morning and said, I 
want to be rotten to those with chronic disease or, I do not 
want to pay any attention to this. I think what happens in the 
Congress is, you get up and there are a whole host of issues on 
your plate and off you go for 12 or 14 hours, try to tackle 
them, and a lot gets lost.
    I think what you heard today from Senators, again, on both 
sides of the aisle is, those days are over. Those days are over 
when chronic disease gets short shrift. And you saw 
determination among Senators to look at both the under-65 
population and the over-65 population. I came to this initially 
in terms of the over-65 population for a variety of reasons, 
for instance, my background working with the Gray Panthers.
    Ms. DeMars, also, Senator Portman and I have introduced 
something called the Medicare Better Health Rewards Program, to 
create incentives for those on Medicare to lower their blood 
pressure and lower their cholesterol and quit smoking and the 
like.
    So that is where I started. But what you heard today from 
Senators is that they very much understand that link between 
the under-65 population and the over-65 population and the need 
to try to put in place what amounts to a seamless web of 
services so that, in effect, as I touched on with you, Ms. 
DeMars, when an American ages into Medicare, you will have 
already begun the heavy lifting.
    I could go right down the row with each one of you and 
thank you for the specific contributions that you have made, 
and, because I have worked primarily with patients over these 
years, since before I got elected to Congress, I am leaving 
with that picture, Ms. Dempsey, of all those trays and trying 
to imagine what it is like every single day, day in, day out, 
to make your way through this--and you have been dealing with 
it for a long time.
    To you, Mrs. Lehmann, thank goodness we have caregivers for 
Alzheimer's patients. My mom got to go to a wonderful, 
wonderful facility, Channing House in Palo Alto, CA, where they 
did a great job. I am a Senator and this is the area I 
specialize in and, my goodness, so many patients do not have 
what your husband has. So thank goodness for you.
    Dr. Bornstein, you have been with us--Senator Isakson and 
I--since this journey began, and we very much appreciate the 
good counsel you have given us.
    To you, Ms. DeMars, we had not met before today, but you 
surely account well for the employers. I know Senator Hatch 
urged us to have you on the panel, and I am surely glad that he 
did.
    So the days when chronic disease got short shrift in the 
debates about health care in America and in the Congress are 
now, with this panel, officially over, and you all have been 
present to get this launch off in the right direction.
    So I thank you. God bless. The hearing is adjourned.
    [Whereupon, at 12 p.m., the hearing was concluded.]
                            A P P E N D I X

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