[Senate Hearing 116-553]
[From the U.S. Government Publishing Office]
S. Hrg. 116-553
THE COMPLEX WEB OF PRESCRIPTION
DRUG PRICES, PART I: PATIENTS
STRUGGLING WITH RISING COSTS
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HEARING
BEFORE THE
SPECIAL COMMITTEE ON AGING
UNITED STATES SENATE
ONE HUNDRED SIXTEENTH CONGRESS
FIRST SESSION
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WASHINGTON, DC
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MARCH 6, 2019
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Serial No. 116-03
Printed for the use of the Special Committee on Aging
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Available via the World Wide Web: http://www.govinfo.gov
__________
U.S. GOVERNMENT PUBLISHING OFFICE
47-616 PDF WASHINGTON : 2022
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SPECIAL COMMITTEE ON AGING
SUSAN M. COLLINS, Maine, Chairman
TIM SCOTT, South Carolina ROBERT P. CASEY, JR., Pennsylvania
RICHARD BURR, North Carolina KIRSTEN E. GILLIBRAND, New York
MARTHA McSALLY, Arizona RICHARD BLUMENTHAL, Connecticut
MARCO RUBIO, Florida ELIZABETH WARREN, Massachusetts
JOSH HAWLEY, Missouri DOUG JONES, Alabama
MIKE BRAUN, Indiana KYRSTEN SINEMA, Arizona
RICK SCOTT, Florida JACKY ROSEN, Nevada
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Sarah Khasawinah, Majority Acting Staff Director
Kathryn Mevis, Minority Staff Director
C O N T E N T S
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Page
Opening Statement of Senator Susan M. Collins, Chairman.......... 1
Opening Statement of Senator Robert P. Casey, Jr., Ranking Member 3
PANEL OF WITNESSES
Michelle Dehetre, Lewiston, Maine................................ 6
Pamela Holt, Granger, Indiana.................................... 7
Donnette Smith, Huntsville, Alabama.............................. 9
Sheldon Armus, Boynton Beach, Florida............................ 10
Barbara Cisek, Rural Ridge, Pennsylvania; Accompanied by David
Cisek.......................................................... 11
APPENDIX
Prepared Witness Statements
Michelle Dehetre, Lewiston, Maine................................ 37
Pamela Holt, Granger, Indiana.................................... 39
Donnette Smith, Huntsville, Alabama.............................. 41
Sheldon Armus, Boynton Beach, Florida............................ 43
Barbara Cisek, Rural Ridge, Pennsylvania; Accompanied by David
Cisek.......................................................... 45
Statements for the Record
Closing Statement of Robert P. Casey, Jr., Ranking Member........ 49
Association for Accsessible Medicines............................ 50
Premier Inc. Healthcare Alliance................................. 56
THE COMPLEX WEB OF PRESCRIPTION
DRUG PRICES, PART I: PATIENTS
STRUGGLING WITH RISING COSTS
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WEDNESDAY, MARCH 6, 2019
U.S. Senate,
Special Committee on Aging,
Washington, DC.
The Committee met, pursuant to notice, at 9:31 a.m., in
Room 138, Dirksen Senate Office Building, Hon. Susan M.
Collins, Chairman of the Committee, presiding.
Present: Senators Collins, Tim Scott, Rubio, Hawley, Braun,
Rick Scott, Casey, Gillibrand, Blumenthal, Jones, Sinema, and
Rosen.
OPENING STATEMENT OF SENATOR
SUSAN M. COLLINS, CHAIRMAN
The Chairman. Good morning. The hearing will come to order.
Today the Senate Aging Committee is holding the first of
three hearings focusing on the high cost of prescription drugs.
These hearings build on the work we have done since 2015, which
has produced new laws to encourage more competition from
generic drugs and to prohibit ``gag clauses'' that prevented
pharmacists from informing their patients about the least
expensive way to purchase their medicines, but it is evident
that much more work needs to be done.
We have heard the statistics:
More than half of all Americans, including 90 percent of
seniors, take prescription drugs regularly. One out of four
Americans has a difficult time affording their medicine, and we
have seen the headlines: ``Drugmakers Raise Prices on Hundreds
of Medicines.'' ``Diabetes Patients at Risk from Rising Insulin
Prices.''
Behind these headlines and statistics, however, are real
people: Average Americans trying to make ends meet, and at a
loss to understand why the cost of a drug that they need to
remain active, healthy, and, in some cases alive, continues to
rise to the point where it is unaffordable.
Here are some of the stories of Mainers struggling to
afford their prescription drugs.
Elizabeth, a 70-year-old from MidCoast Maine, lives with a
severe low blood pressure disease that makes daily activities,
such as making her bed, difficult. Her neurologists have tried
multiple treatments and concluded that the medicine she needs
is Northera, but with a price tag in the thousands of dollars,
she simply cannot afford this treatment. Instead, she takes a
different medicine that she says is ``just barely keeping me
able to function.'' She told us, ``I am just treading water.''
Philip from Yarmouth, Maine, had his epilepsy under control
for years since the 1990's. Every 3 months, he would drive to
Canada to buy enough Onfi to last a quarter of the year at the
price of $120. Years later, he tells us, when this same drug
got approved in the United States, his monthly costs
skyrocketed to $1,200, so he stopped taking it. He is now
taking an alternative drug for $75 a month that does not work
as well and causes a host of unpleasant side effects, from
balance to mood problems.
We have talked to Vereen from Lewiston, Maine, who
describes the deteriorating condition of her 34-year-old son,
Mark, who cannot afford to treat his diabetes properly, and
Renee from Portland, Maine, who one day found that the refill
for her multiple sclerosis maintenance therapy would be
$12,000. She went without, risking her life until she was able
to restore coverage.
When taken as prescribed, prescription drugs can work
wonders keeping blood pressure in check and seizures under
control, lowering cholesterol levels and triglycerides,
combating nausea and infection, and balancing hormones in the
body and chemicals in the brain. For some conditions,
prescription drugs represent a lifeline that allow individuals
to live, breathe, eat, and sleep, but in the face of rising
costs, these therapies are becoming increasingly out of reach
for those who need them most. Prescription drugs do not work
for those who cannot afford to take them.
On a national level, we are spending an enormous amount,
while millions of Americans continue to be unable to afford the
treatments they need. This year alone, Americans are expected
to spend more than $360 billion on prescription drugs. Of this
amount, individuals will pay about $49 billion out-of-pocket.
The Federal Government will pick up another $163 billion in
payments through Medicare, Medicaid, and other programs.
Americans are going to great lengths to pay for their
prescription drugs--cashing in retirement accounts, working
three or four jobs at retirement age, choosing medicine over
food. These statistics do not capture the tribulations that
Americans encounter every day because the drug they need
carries a prohibitive price tag--causing them to stretch or
skip doses, settle for an alternative that works poorly, or
simply go without.
The entire drug supply chain is appallingly opaque. While
family members and doctors are often doing everything they can
to help, navigating the complex web of prescription drug prices
is not easy, even for the experts. Renee summed up the problem
well after getting back on her MS maintenance therapy. She
said: ``I am lucky. As a community advocate, I knew who the
players were and how the system worked. How does the average
resident manage through all of this?''
The complexity in the current system seems designed to
benefit everyone except the patient.
Of course, we want new medicines to reach consumers and for
companies that invest in the research and take the risks
necessary to develop these drugs to see a fair return on their
investment, but we must do more to ensure that these essential
medicines are more affordable and their prices more
transparent.
Addressing the rising costs of prescription drugs is a top
priority for this Committee. Today we will hear about the
impact of high prescription drugs directly from patients.
Tomorrow we will focus on potential policy solutions. At a
third hearing later this spring, we will hear from
administration officials on their proposed solutions.
I am so grateful to each and every one of our witnesses for
being willing to come here today and share their stories.
I now turn to our Ranking Member, Senator Casey, for his
opening statement.
OPENING STATEMENT OF SENATOR
ROBERT P. CASEY, JR., RANKING MEMBER
Senator Casey. Thank you, Chairman Collins, for holding
this hearing.
When I talk to people in Pennsylvania, whether they are
families or workers or seniors, one of the main topics that
keeps coming up over and over again is, ``How do I make ends
meet?''
We have seen unacceptably slow growth in wages over not
just years but now literally decades, and certainly at least
the last four decades. The cost of living continues to rise. It
is more expensive to put food on the table; the amount of money
families must save to pay for priorities like child care or a
college education. The cost of prescription medications, of
course, is at the top of that list. The cost of these
prescription drugs is busting the budgets of many families
across Pennsylvania and across the country. Seniors and their
families are stretched to the limits. We will hear more about
that today.
The costs are overwhelming. Just last week, the Senate
Finance Committee heard from the companies that make the
prescription medications and set the prices of these drugs.
None of the executives that testified last week have difficulty
making ends meet because of the cost of one of their products.
I hope, we all hope, that they will watch this hearing, or at
least see it after the fact, and listen to our witnesses share
their personal stories and their struggles to afford needed
medications.
These are the stories of patients who take only half of a
dose in order to make their medication stretch, and they are
the stories of families who never expected to need to decide
between putting food on the table and paying for a
prescription.
We will hear all of this in the testimony of Americans from
Pennsylvania, Maine, Georgia, Indiana, and Florida. They are
the voices of our loved ones--our parents and grandparents, our
aunts and uncles, our brothers and our sisters, and the money
they are spending now has a significant impact on the resources
they will hurricane available for their children and our
children--indeed our future.
We must heed the warning of our witnesses today. These
prescription drug prices are unsustainable and for far too many
families, of course, unaffordable. If we want families to have
the money they need for child care or for retirement, and
everything in between, we must take action on this issue, so
tomorrow I look forward to a dialog about solutions after we
have heard stories today from Americans who are appearing
before us.
Once and for all, we must advance common-sense policies to
help Americans afford the medications they need.
I want to thank each of our witnesses for being here today,
and I especially want to express my gratitude to Chairman
Collins for holding this important hearing. Thank you.
The Chairman. Thank you very much, Senator.
We are now going to turn to our panel of witnesses. Again,
I want to thank you for courageously sharing your personal
stories with us. I know that you have traveled from many
different places and that testifying before Congress may not
feel easy to you, but you are doing a wonderful public service
by bringing your personal experience in navigating the health
care system just to get your everyday prescription drugs and
making that experience available to us. Your voices are
powerful, and we are very grateful.
First, we will hear from one of my constituents, Michelle
Dehetre, from Lewiston, Maine. Michelle is a mother and a
grandmother who works full-time and is an active member of her
community. She also lives with Type 1 diabetes. She will talk
about her struggles in affording expensive insulin and other
treatments that she needs literally to survive day to day.
I am going to have Senator Braun to introduce our second
witness who hails from Indiana. Senator Braun.
Senator Braun. Thank you. Pam and I met yesterday, and she
is from Granger, Indiana, a retired school teacher, widowed at
age 40, raised three children on her salary, and now helps out
with two grandchildren. Pam suffers from multiple myeloma, a
form of cancer, and her co-pay for her cancer-treating drug,
Revlimid, is $577 per month. I think it used to be lower, and
that is where it is now. She makes too much in retirement to
qualify for assistance, had to go into debt for $10,000
currently when she was 3 years from having her mortgage paid
off, and now that is a 30-year commitment.
Finally, last year she was able to qualify for a grant to
cover the cost of Revlimid and is now paying zero, but it was a
long journey to get there, and that is part of the uncertainty
on any ailment and how you access the drug that is going to
help you.
In addition to Revlimid, she is taking other high-cost
drugs that she pays for out of her own pocket, kind of
adversely impacting her quality of life.
Pam, thank you for being here.
The Chairman. Thank you, Senator.
I will now turn to Senator Jones to introduce our witnesses
from Alabama.
Senator Jones. Thank you, Chairman Collins, and I am so
pleased to welcome and introduce Ms. Donnette Smith. Ms. Smith
is a retired Federal worker who joins us from Huntsville,
Alabama. She now serves as the president of Mended Hearts, a
national nonprofit that provides support services to heart
disease patients, caregivers, and their loved ones.
As both a heart disease advocate and a patient herself, she
has become well acquainted with the challenges of high
prescription drug costs. It is my understanding, at least in my
information--and we will hear more from Ms. Smith--that her
prescription drugs run upward of $6,000 per month and that she
has had to spread samples from her doctor as thin as she can to
make ends meet. Today she is going to share some of those
challenges with us that she has faced in getting the medicine
that she needs in order to live a full and healthy life.
Ms. Smith, thank you so much for joining us. Thank you for
your advocacy, and I look forward to learning more about your
experiences.
Thank you.
The Chairman. Our next witness is from Florida, and we are
so fortunate on this Committee to have both of Florida's
Senators serving on it. We will start with Senator Rubio and
then turn to Senator Scott to introduce the witness.
Senator Rubio. Thank you, and I want to thank both you and
the Ranking Member for holding this hearing--I do not know of
any topic we hear about more--and for giving us the opportunity
to introduce Mr. Sheldon Armus, who is from my home State of
Florida. He resides in Boynton Beach, where at this moment it
is 70 degrees and sunny, and we still have no State income tax,
and he will be able to provide important insight on high-cost
drugs are financially harmful for those that rely on them to
manage chronic conditions. He spent 35 years working in the
health care industry, from a pharmaceutical sales
representative to the owner of a medical device company, so he
has a unique perspective on the industry, and I want to thank
him for being here today and for sharing his story so that we
are better informed when we examine policy changes that will
lower the cost of prescription drugs.
The Chairman. Thank you.
Senator Scott?
Senator Rick Scott. Senator Rubio and I are happy to have
somebody from Florida here. It is a lot warmer there. I could
not believe how cold it is up here, and my wife told me, ``You
worked really hard to get this job to move to cold.'' We are
honored to be joined by a fellow Floridian, Sheldon Armus, of
Boynton Beach. He is on Medicare A, B, and D. During a hospital
visit 2-1/2 years ago for bypass surgery, he was diagnosed with
Type 2 diabetes. After 4 months on prescriptions to manage his
insulin, Sheldon went to the pharmacy expecting to pay, I
think, $60 for each prescription. He was hit with a bill of
over $300, and we are hearing this, especially with insulin,
all over the country.
Sheldon, like so many in our country, is being subjected to
the rising cost of prescription drugs and is forced to pay a
lot of money out-of-pocket just to get the care he needs.
On Monday, I met with, I think, six individuals in my
hometown of Naples all on insulin, and it was just--their
stories are just shocking, how much the cost of insulin has
gone up in just a very, very, very short period of time, so
whether it is insulin or other things, we have got to figure
out how to drive down the cost of prescription drugs. You know,
we just cannot afford it.
Thanks for being here.
The Chairman. Thank you very much, Senator Scott, and now
last, but certainly not least, I will turn back again to the
Ranking Member to introduce our witness from Pennsylvania.
Senator Casey. Thank you, Madam Chair. I am honored to
introduce Barbara Cisek from Rural Ridge, Allegheny County,
Pennsylvania, the same county that Pittsburgh is in, but we are
here to promote Rural Ridge today. Barbara is here with her
son, David, and Barbara is, to say the least, a true advocate
for herself and for others, and today not just her and her
family, but, of course, many Americans.
She has been a caregiver to her Mom when her Mom was
battling ovarian cancer and has direct experience with a lot of
the challenges we are here to talk about today.
Barbara, thank you for being here and for being willing to
share your story. We are going to learn a lot by listening to
you today.
Thanks very much.
The Chairman. Thank you, Senator, and, Ms. Dehetre, we will
start with you.
STATEMENT OF MICHELLE DEHETRE,
LEWISTON, MAINE
Ms. Dehetre. Good morning. Thank you, Chairman Collins,
Ranking Member Casey, and distinguished members of the
Committee for inviting me to testify before you today.
My name is Michelle Dehetre. I was diagnosed with Type 1
diabetes in 1985 as a freshman in high school. I am 48 years
old, a mother of five, and I have four grandchildren. My dream
is to see my 11-year-old son graduate high school.
Diabetes threatens my life. Just last week, on Thursday
night, while driving my middle son home to his father's, I had
low blood sugar. The paramedics came and arrived on the scene,
and I was sent to the emergency room.
Unfortunately, this is not an unusual occurrence, because I
cannot afford the treatment I need, paramedics end up visiting
me two to four times a month. I require two types of insulin to
live: a long-acting and a short-acting. I take Lantus and
Humalog. I work full-time and shell out nearly $300 per month
out of pocket on insulin, syringes, and test strips that keep
me alive.
Ending up in the ER always scares me, not only because I
know it is a close call, but because on top of my medicine, I
cannot afford another medical bill. When the paramedic visit
results in a ride to the hospital, it is $600 for the ride and
up to $2,000 just for the ER visit.
I have tried to save costs on my treatment. I asked my
doctor about using an older insulin and found an option at
Walmart for $25. I picked up a vial of Humulin N and Humulin R.
It is basically the same insulin that I started using in 1985,
but as I have grown older, my blood sugar levels have gotten
more and more unpredictable, even when I eat the same thing
from day to day, so the older insulin did not work well.
I was able to successfully save money on test strips. The
brand that my insurance covers cost me $99. Thankfully, I was
able to get a brand from Walmart and use them, and it only cost
me $51 a month, without using my insurance. I use the test
strips to check my blood sugar levels at least six times a day:
when I wake up in the morning, before and after every meal,
when I go to bed at night, and in between.
I cannot feel when my blood sugar is going low. It tends to
go too low at night. My Mom and my aunt are nurses. Even in my
family of caretakers, it has proven very difficult to keep my
blood sugar in check.
My doctor says that what I really need is a continuous
glucose monitor and a pump. I had that in 2007, and it worked
really well. When my insurance coverage changed, my costs to
keep that pump running skyrocketed to $1,500 for a 3-month
supply, and that is after the insurance coverage. There is no
way I could afford that, so I am using syringes and test
strips.
The money I am spending on diabetes treatment already is
too much. In addition to buying food, paying the electric bill,
and other monthly bills for my household, spending at least
$300 per month for my diabetes medication is a major financial
strain. I cut back on spending whenever I can. I am always
looking for ways to save money on food and gas and sometimes
fall short at the end of the month.
Treating my diabetes is a matter of life and death. When my
body does not get the insulin it needs, it makes my blood sugar
go very high, which over time can lead to diabetic
complications, such as blindness, neuropathy, and even death.
Sadly, I actually know that I am better off than others. In
the year 2019, I wonder how many others are also struggling to
cover the cost of insulin and other diabetes medicines and
supplies. How many others are trying to save costs by using
insulin from 1985 to no avail?
In 2019, no one should have to go through this. I want
insurance companies and pharmaceutical companies to wake up.
What they think they are doing to save money is not helping
people like me.
Thank you for the opportunity to testify, and I am happy to
answer your questions.
The Chairman. Thank you very much for your testimony.
Ms. Holt.
STATEMENT OF PAMELA HOLT,
GRANGER, INDIANA
Ms. Holt. Hello, Chairman Collins, Ranking Member Casey, my
home Senator, Senator Braun, and members of the Committee.
Thank you for the invitation.
My name is Pamela Holt, and I am from Granger, Indiana. At
the age of 40, I was widowed when my husband died of a heart
attack; therefore, I raised my three children on my own. I was
fortunate at that time to be a teacher and later an
administrator with good benefits, and that set me up to have a
good retirement, I thought.
That all changed, however, when I was diagnosed with
multiple myeloma 3 years ago. I had been recently retired.
Multiple Myeloma is an incurable but treatable blood cancer.
Upon my diagnosis, I underwent a bone marrow transplant and
chemotherapy. I am very grateful to be currently in remission.
To keep my cancer at bay, however, I must take the drug
Revlimid. Initially, this prognosis felt good. I could live
longer. I could help raise my grandchildren. I could spend
summers at our favorite lake in Wisconsin. I am deeply grateful
for that, but when I learned the cost of Revlimid, I was
horrified and frightened.
On Medicare Part D, I went into and out of the donut hole
in January--I do that every year--paying $4,950 the first month
and then $640 for Revlimid every 28 days for the rest of the
year. That cost was really unaffordable for me, and after just
1 year, I found myself in debt. I was completely underwater and
it became necessary for me to refinance my home. That was
devastating because I was only 3 years from having it paid off,
and having been a single parent all those years, it was a
struggle, but I look at it as a fortunate experience because I
had a home that I could refinance, so I could afford the drugs.
In the last year I have been fortunate to receive a grant
through HealthWell for the cost of my Revlimid, but that money
is not a given. At any time through the year, they can run out
of funds. I just read that seven of the eight granting people
that work for multiple myeloma have closed their funding, so
think of all the other people out there that have not received
money to cover this cost.
Also, I do not feel I should be dependent on a grant. I
felt I could be comfortable in my retirement, and that is not
the case. I have to keep following where there is money to help
me supplement.
I spent my life doing the right things--contributing to my
community, teaching in public schools, raising my children. I
feel it is rather unfair that, despite my hard work and careful
planning, I must face all these financial challenges along with
the illness that I have no control over.
I am grateful for the additional time Revlimid has given me
with my family. Having cancer is really hard enough; I should
not have to lose all my savings just to stay alive.
I am encouraged by the action Congress is starting to make
in the hearings over the last couple of months. I am
particularly grateful to this Committee for listening to
patients.
What patients need most is real change to the system and
congressional action that will bring down drug prices.
For me, one solution would be the CREATES Act. It addresses
a tactic the company that makes Revlimid, Celgene, uses to deny
generic companies access to samples of Revlimid. There are no
competing drugs for the drug I need to take, so they can charge
whatever they want. I understand this year it is up to $740
rather than my $600-and-some I was paying. Celgene can set the
price at whatever they want.
I came to D.C. last year to encourage Congress to pass this
important piece of legislation. I was grateful when my Senator,
Senator Young, agreed to cosponsor the legislation, but I was
disappointed that it did not get completed, but I am excited
that it is back on the table.
I am hopeful the members of this Committee will sign on to
the legislation and take meaningful steps to pass it.
For myself and many other patients across the country,
congressional reform would be life changing.
Thank you for taking the time to hear my story. I look
forward to the action that you will take on drug prices for
myself and for the many other patients across the United
States.
The Chairman. Thank you very much, Mrs. Holt.
Mrs. Smith.
STATEMENT OF DONNETTE SMITH,
HUNTSVILLE, ALABAMA
Ms. Smith. Thank you. Chairman Collins, Ranking Member
Casey, and members of the Committee, thank you for the
opportunity to be here today to talk about the challenges I
have had in getting the medication that I need. My name is
Donnette Smith, and I am from Huntsville, Alabama. I have
suffered from heart-related conditions from birth, and the
efforts and skills of some excellent doctors along the way have
enabled me to have a full, if complicated life, but today I sit
before you as a person at high medical risk.
I am a retired Federal employee, and I live in Huntsville,
Alabama, where I spent my career as a technical writer for the
U.S. Army and NASA. I have also had the honor to be an advocate
and resource for heart patients as president of Mended Hearts,
a national peer-to-peer support organization for heart
patients, providing hope and encouragement for over 67 years. I
am also on the board of directors for Heart Valve Voice US.
My medical story began at birth, although I did not know
that until much later. I was born with a heart defect that led
to aortic stenosis and heart failure. After suffering from
debilitating shortness of breath throughout my childhood, I
finally learned the truth about my condition in my late teens,
when a NASA physical revealed a severe heart murmur. I was
devastated.
Just after my 40th birthday, I had open heart surgery to
replace my deformed aortic valve. I did well for a number of
years, but a failing valve and severe cardiovascular disease a
few years later led to two more heart surgeries and five
stents. After the third surgery in 2009, my doctors said it was
urgent to dramatically reduce my cholesterol level, which was
off the charts. I believe I tried every statin and step therapy
available, but nothing worked for me. I was a stroke or a heart
attack waiting to happen.
When Repatha, a new type of cholesterol-reducing drug--a
PCSK9 inhibitor--became available several years ago, my
cardiologist believed that it could dramatically reduce my
risk.
He tried unsuccessfully to get my insurance to cover it.
Without insurance, it would have cost me over $14,000 per year.
The applications and appeals process were very detailed and
complicated and extremely time-consuming for my doctor and his
staff. Even with all his effort, it was not approved. When I
spoke about my struggles at a cardiology town hall meeting in
2015, a physician there became an advocate for my case. My
insurance company eventually approved 3 months of coverage in
January 2018, and I began taking Repatha. The drug dramatically
changed the quality of my life. My LDL cholesterol level fell
from 283 to 70 in 1 month, and I felt the cloud of fear hanging
over me finally lift.
The drug is very expensive, and with insurance my co-pay
was $583 per month. That is not a small amount of money, but I
was willing and able to pay it if necessary, and I was
fortunate enough to discover a manufacturer co-pay card which
sharply reduced the cost. However, the coupon only works if the
prescription is covered by insurance. Unfortunately, after 3
months I received a notice from my insurer telling me that I
would have to go through pre-authorization again. That was 1
year ago, and I am still waiting. I heard that the drug's price
was recently reduced, which may provide better options if my
doctor's latest pre-authorization request is not approved.
Right now I am taking samples of Repatha that my doctor has
been able to get for me, which I stretch out by not doing the
injections as often as possible. He thinks that any amount I
can take is better than nothing. I hope that the latest pre-
authorization is approved. I have been hanging in there, but I
do not know what this is doing to my health for the rest of my
life.
In some ways, I consider myself lucky. I encounter many
people who have not had the medical care I have had. I urge you
to do something, for all of the seniors and others who cannot
afford their medications.
Thank you again for the chance to share my story with you
today.
The Chairman. Thank you very much, Mrs. Smith.
Mr. Armus.
STATEMENT OF SHELDON ARMUS,
BOYNTON BEACH, FLORIDA
Mr. Armus. Chair Collins, Ranking Member Casey, and members
of the Committee, thank you for having me today.
My name is Sheldon Armus. I am 71 years old and live in a
senior community in Boynton Beach, Florida. I am a constituent
of Senators Rick Scott and Marco Rubio, members of this
Committee.
I spent the first 35 years of my career working in the
health care industry. I started as a young pharmaceutical sales
representative, and I worked my way up to management for
several companies, including manufacturers of medical devices.
Before retiring in 2014, I owned my own medical device
company and then worked as a science teacher for 10 years.
One month into retirement, I underwent a quadruple cardiac
bypass operation. Surgery saved my life. However, the surgery,
as well as my diabetes that they discovered when I was in the
hospital, and other cardiac conditions left me taking seven
different drugs each day.
All of these drugs keep me alive, and I am very thankful
for their existence. However, they also have proven to be a
real financial burden.
Xarelto is one of my drugs; it is a blood thinner that
prevents dangerous blood clots that can lead to heart attacks.
It is a new and expensive drug with a list price of more than
$450 for a 30-day supply. That is one tablet a day. It is
outrageous, and, yesterday, on my way to the airport to come
here, my doctor's office called me and placed me on another
highly advertised patented new drug called ``Brilinta.''
You have probably heard of Xarelto because it is heavily
advertised also to consumers on TV. Janssen Pharmaceuticals
makes this drug, and they have also promised to start
disclosing the list price of its medications on those ads,
which is more information than Janssen would like doctors to
know.
Last month, I dropped a Xarelto on the bathroom floor. I
guarantee you all bathroom floors are sterile when it comes to
your medications, and there is no 5-second rule.
There is not a generic on the market for Xarelto. I am
lucky to be on Medicare Part D, where I pay only a portion of
the price, but it is still too much.
Before Congress closed the donut hole, I would fear the
month that my out-of-pocket costs would spike, because of
fluctuations in the list price, I never knew when I would hit
the donut hole threshold. At some point I would go to the
pharmacy to pick up my prescriptions and discover that they all
cost much more than I expected. Sometimes I would actually have
to wait several days for a Social Security check to arrive
before I could afford to pay for the drug. It was always a
shock to my system.
Like most middle-income folks, my wife and I live mostly on
Social Security plus some savings. The deductible for the
premiums for Part D equals over $1,000, and that is before
filling the first prescription.
The donut hole will be closed for patients, but it does not
solve the problem of high list prices. I struggle to afford my
drugs with Medicare Part D coverage, but I feel even worse for
those without coverage who must pay the list price. The list
price of insulin these days, which has been talked about here
before, which has been around for 100 years, has skyrocketed.
Patients and taxpayers still pay for a percentage of the
list price. That is a very important thing to note because,
therefore, it is in the best interest of the pharmaceutical
companies to artificially inflate the list price.
I know because I worked in the industry; I attended
meetings in which maintaining and increasing the high list
prices, which back in those days were called ``average
wholesale prices,'' was discussed and encouraged.
Pharmaceutical reps such as myself as well as the public are
told that the high drug prices are due to the high cost of
research and development. However, according to the Washington
Post, nine out of ten big pharmaceutical companies spend more
on marketing than on research. Being from Florida, I had to buy
a new overcoat to come here today. I can assure you my 30
Xareltos cost more than my overcoat.
At one time I was proud to have worked in the
pharmaceutical industry, but now, being a patient, I no longer
feel that way. In fact, I am embarrassed to tell my fellow
seniors of my past work experience.
I am grateful to the Committee for holding this hearing and
delving into the issue of high drug prices. The issue starts at
the top with high list prices set by drug companies, but it
ends at the bottom, with us, patients just trying to continue
to live their lives.
Thank you for your time.
The Chairman. Thank you very much for your testimony.
Mrs. Cisek.
STATEMENT OF BARBARA CISEK,
RURAL RIDGE, PENNSYLVANIA
Ms. Cisek. Chairman Collins, Ranking Member Casey, and
members of the Committee, thank you for inviting me to testify
today. It is an honor to be here.
My name is Barbara Cisek, and I am 72 years old and live in
Rural Ridge, Allegheny County. My husband, Ed, and I were high
school sweethearts, married just shy of 43 years when he passed
away in 2009. We raised two sons together, David and Michael,
who now have four kids between them, and my son David is here
with me today.
Raising my family, keeping our hairdressing shop open, and
caring for my mother as she battled chronic illnesses was hard.
Like me, she had a lot of different medical issues and was sick
a lot of the time, but always fought to get back on her feet.
She was diagnosed with ovarian cancer at the age of 80 and lost
her battle to cancer before her 83rd birthday.
I wonder what will happen if I live to be the age of my
mother. With all the medical expenses I am facing on a fixed
income, I am scared there will not be anything left. I pay
about $500 out of my own pocket for medicine and over-the-
counter items every month. If I actually take all my
medications my doctor prescribes, the costs would total over
$1,500 per month. That is on top of my Medicare, which is $134,
and my Medicare Advantage, which is $293.
I have battled bleeding ulcers, high blood pressure, high
cholesterol, and severe migraines for years and was diagnosed a
year and a half ago with diabetes. I am recovering from a
stroke that I suffered last November and need to get a total
shoulder replacement in the next several months. I am living
with chronic pain caused by a bulging disc, spinal stenosis,
and sciatica. In addition to the injections for my shoulder--I
pay $50 every 3 months for those injections--I use an inhaler
to manage my COPD, have an oxygen concentrator at home, and
will need to start using portable oxygen tanks. With ovarian
cancer in the family, I get tested every year, so I feel like I
am a puzzle with a piece missing.
What makes managing all these conditions worse and more
stressful is never knowing what the insurance will cost from 1
year to the next and my prescription drug costs will be. The
Imitrex that I take for my migraines cost $150 before it became
generic. Now that it is generic, my insurance will not cover
it, and I pay $45 for 27 pills. Phenergan, a medicine the
doctor recommended for me for nausea is not covered, and there
is no way I pay the $1,032 price. Elavil, a medicine that helps
with my migraines, is no longer covered, and I have to pay $85
for a 30-day supply. I spend $100 for two ounces of cream that
treats a rash that the insurance will not cover. It is hard to
make the cream stretch, but I use the tiniest amount that I can
to make it last. I just found out when I inquired about the
shingles vaccine, it is not covered by my insurance and will
cost me $420 out of pocket.
The most expensive medicine I take is Nexium, and I have to
have it. Other forms of the drug, which treats my slow-bleeding
ulcers, have made me sick to the point where I needed blood
transfusions. I have to go through a step-by-step process every
year, with my doctor sending a letter to my plan confirming
that I do actually need the brand-name drug. For a 90-day
supply, I pay $300. My Spiriva inhaler for my COPD is $150 a
month.
When you add all these drug costs to what I pay for other
supplies, like diabetic test strips and lancets, my oxygen
tanks, my CPAP, an eye vitamin to delay my macular
degeneration, xylimelts and special bottles of mouthwash and
toothpaste to treat dry mouth and receding gums, it is a lot
and it all adds up. That is why I am sharing this with you
today--to help you understand what it is like for those of us
senior citizens who are feeling the full weight of the costs
because we make a little too much to get help from the State or
the Federal Government.
My husband retired as an engineer with Westinghouse for 33
years. He worked hard, as did I, to build a good life and a
good future for our family. I have lived in our home for 45
years and do not want to leave it. I want to be able to afford
my medicines so that I can stay healthy and away from the
nursing home. If things like this keep going up, drugs are
going to cost more and more and my insurance covering less and
less, and I do not know what I will do.
I came here today to speak not just for myself, but every
other senior citizen who has had to stand at the pharmacy
counter and leave something behind.
Thank you for the invitation to testify before this
Committee. I look forward to answering your questions.
The Chairman. Thank you very much for your testimony.
All of you are coping with very serious illnesses, and I
could not help but think, as I listened to your individual
stories, that your illnesses are also worsened by the fact that
you are coping with this anxiety and uncertainty about what
your prescription drug costs are going to be from month to
month, so I would like to ask each of you a question: Do you
understand what you are going to be faced with when you get to
the pharmaceutical counter and why you are paying what you pay?
We will start with Michelle. I am sorry. We need your mic
turned on. Thank you.
Ms. Dehetre. I am unsure how to answer that question. I
have asked at the pharmacy when, you know, a price has changed
in my prescriptions, and it is usually because my insurance
company has changed the way that they cover it.
The Chairman. Thank you.
Ms. Holt?
Ms. Holt. I just recently had the experience of going to
the pharmacy to pick up a drug that I need to offset the
results from my chemo medication, and it is an antinausea/
antidiarrheal that I typically paid $46 for a 3-month supply.
The last time I went to the drive-through to pick up my
prescription, it was $500-and-some. There was no pre-warning. I
had to leave. Obviously, I was not prepared for that payment,
and I asked if there was anything, you know, that had happened,
anything they could do, and then I had to go back and pick it
up. I was at a standstill. I cannot get by day to day without
that drug, and they had me.
The Chairman. You do not have much choice.
Ms. Holt. No.
The Chairman. Ms. Smith?
Ms. Smith. Yes, it is a shock when you go to the pharmacy
to pick up something, especially a new drug, and discover the
price, and you may or may not be ready to dole out that kind of
money at that point.
I take 12 different drugs, so my problems with getting the
Repatha and it being so expensive, it is nothing, you know,
when you add everything up together, and, honestly, I have
talked with other people who are in the same boat that I am in
as far as prescription drugs, and I had one lady tell me that,
``Well, I picked up my drugs today, and I was going to the
grocery store, but when I paid for my drugs, I cannot go to the
grocery store.'' I mean, that is really concerning.
The Chairman. It certainly is.
Mr. Armus?
Mr. Armus. Well, as I mentioned in my comments, I now have
a new anticoagulant that has been added to my drug regimen. I
have no idea what that will cost because the prescription was
just written in the last day or so.
I feel that the situation is not only out of control, it
has been going out of control for the last 10 or 15 years, and
we are just to the point where it is so painful that we--I
think it is a bipartisan effort to really do something about
it, because the pain is excruciating at this point, and there
are many people--and those other people at the dais here--that
pay a lot more than I do for drugs.
I do not know what I am going to pay for this. I do not
know what I am going to have to sacrifice. It might be, ``Leave
the gun. Take the cannoli.''
The Chairman. Thank you.
Mrs. Cisek?
Ms. Cisek. It is frustrating when you go to get a
prescription filled that you take out a health insurance plan
and they seem to change it from month to month, if you say it
is going to be a $15 co-pay, and then you go and realize, ``Oh,
no, it is going to cost me $100.'' When I listened to the
speeches last week about why somebody's medications do not come
down that had been up for years, they said research and
development. How about the cost to the patient? And that is the
part, but you know, you say this amount or this amount, but I
have joked when I go to get my Nexium pill, I will say, ``Well,
I mortgaged the house.'' That is how you feel with the cost of
the medication, that you just do not know anytime you get
something filled what it is going to cost.
The Chairman. Thank you.
Senator Casey, good timing.
Senator Casey. Well, thanks very much. We are doing a
little juggling here today.
First of all, I want to thank everyone for their testimony.
This is, I think, for people here but also, I think people
listening, a real exposure to real life, not some theory but
how people get from day to day and week to week and month to
month, and it is just a searing reminder about the challenge
that we have, and I am grateful our witnesses are willing to
share their personal stories. It is very difficult in any
circumstance to testify in a setting like this. It is ever more
so when you are testifying about your own life and your own
challenges, but I want you to know that it helps us be able to
convey not just the reality of this problem, but the urgency to
take action.
We are hearing about real life today, and I wanted to just
start with what I usually do not do, which is a very simple
yes-or-no question, because I think that it highlights what
many of you are facing and what we have got to try to do to
react and to take action in light of your testimony, so I just
want to ask some basic questions.
The first one is: Do you believe Medicare should be able to
use its purchasing power to negotiate drug prices? I will just
start from left to right. Michelle, I will start with you. Just
give a yes-or-no answer to that question.
Ms. Dehetre. I fully do not understand the question, so
that one is hard for me to answer.
Senator Casey. Okay. Pamela?
Ms. Holt. Yes for me.
Ms. Smith. Yes for me.
Mr. Armus. Definitely.
Senator Casey. Barbara?
Ms. Cisek. Absolutely
Senator Casey. The second question is: Do you believe the
United States should be able to safely import medications from
other countries where they--meaning the drugs--are more
affordable in countries like Canada? I will start again with
Michelle. Yes, the question is: Do you believe the United
States should safely import medications from other countries
where they are more affordable, like, for example, Canada?
Ms. Dehetre. While I think it is sad that we would have to
do that in order to bring more affordable costs to us, the
people that live here, I would have to say yes to that, but it
is sad that we have to do that to take away from our local
pharmaceutical companies.
Senator Casey. Pamela?
Ms. Holt. Vehemently, yes, if it would cause competition
and cause drug prices to go down.
Ms. Smith. I agree also if it can be done safely.
Mr. Armus. I agree. There are people in my community that
are already sending for drugs from Canada.
Senator Casey. Barbara?
Ms. Cisek. Yes, and I know of ones that do.
Senator Casey. Thank you, and I appreciate your answers to
those. None of them are necessarily easy questions.
It is my hope that Congress can act upon the
recommendations that we hear from folks either testifying today
or otherwise. One bill that I am particularly interested in is
Senator Stabenow's bill which she has introduced and which I
support to allow Medicare to negotiate for lower prices. That
is one.
I have another bill on the other issue that we raised with
Senator Sanders to allow for the safe importation of
prescription drugs, in this case from Canada, maybe down the
road other countries as well, so we are grateful for the
testimony you provided.
I will wait for my second round to ask a question of
Barbara so that we can keep the hearing moving. Thanks very
much.
The Chairman. Thank you, Senator.
Senator Braun?
Senator Braun. Thank you, and thank you for convening a
discussion like this. It is so important. This has been a
passion of mine for years. I took on the health insurance
companies in my own business 10 years ago, and you do have
recruits and reinforcements on both sides of the spectrum here
that enough is enough.
I was tired of the litany of every year you are lucky it is
only going up 5 to 10 percent. That started when I had a
company of just a few employees, and I did not have anything I
could do about it until I hit 300, which was 10 years ago, and
I could tell what a looming issue this was going to be and did
what most companies did not do, did not have the nerve to do,
and that is, take on the status quo.
This is going to give you hope because I have got three
bills I just dropped yesterday, and there are a few of us,
whether you are looking at maybe Government getting more
involved, which I do not blame that because the industry has
done such a poor job of providing a product and a service at a
value, embarrassed by the fact that 30 other nations have a
better ranking when it comes to cost and total measurement of
value along with it. We have got to do better.
In a nutshell, I made my system consumer-driven, and I can
tell from the testimony it is so opaque, it is so confusing,
that it is hard to participate as a consumer. I forced it into
the system, encouraged that to be done, did things like pay 100
percent of wellness so we are preventing rather than
remediating, and to make a long story short, actually lowered
costs out of the gate by 50 percent and have not had a premium
increase now in 9 years for my employees. It is unbelievable
what, if you really tackle the system by changing all the
things we have come to just accept--and that is that you spend
this much money, you never ask how much it costs because you
are frustrated that you would not get an answer and an easy way
to do it. That is going to change.
I did drop three bills that address things to me more
comprehensively. There needs to be a general bill of
transparency. If you are in the business of health care at any
level, you publish your prices in print or on the Web so people
can see it, so it is not that confusing to access it.
Just recently there was a ruling on PBMs to take this whole
gimmick of rebates. There is nothing like that in any other
industry. The reason we have it here is because there is so
much profit margin there. You have a whole other middleman that
operates off these artificial rebates. They carve up most of
the profits between themselves and the insurance companies and
it never gets down to the individual.
I have got a bill that wants to do that for private
insurance, not just through Government.
I have got another bill, safely importing drugs. All these
rules, not being able to get insurance across State lines, all
the things that have been embedded into our health care system
like not being able to pool or associate, that needs to change.
I have got a bill that is going to fast-track good drugs
that work elsewhere, get them into this country, and it is sad
that we cannot do that here on our own.
Another gimmick, when it comes to brand names transitioning
to generics, there are things like citizen petitions, which you
would think would help us. It is actually a tool the insurance
companies use to thwart the process of generics coming
onstream.
I want to give you hope that this is now an issue both
sides of the spectrum are serious about, and you cannot blame
some for wanting Government to do more when an industry has
been so dysfunctional. I will leave it at that because I do
want to ask a couple questions.
I know just from the testimony it is difficult finding
comparison. I know when I was in between being CEO of my
company and my company's insurance, I had to actually call to
find a prescription. I called two places. It is a generic, and
I figured it would be easy, quick, and they would be within a
few bucks of one another. I called one place; it is $34.50. It
took them 2 minutes. They fumbled around to give me a price. I
said I had no insurance, and that was true. I was in between. I
called--and I am going to mention the name--Walmart. They gave
me an answer within 10 seconds, 10 bucks, and I could pick it
up within 15 minutes. You should not have that type of
discrepancy between one or the other.
Would you folks, as you are looking for better ways to
compare prices--either one or two of you real quick because I
am running out of time. Would you engage as consumers if the
information was there to shop around? Because I think that is
the key to bringing prices down. Pam, let us start with you.
Ms. Holt. I definitely would when it came to $46 versus
$100 or $500-and-some. That was cause me to do quite a bit of
phone shopping before I could have a prescription----
Senator Braun. Great example. Anyone else?
Mr. Armus. I think the time has come for prices to actually
be fixed, because if we continue to work on percentages of
list, the list prices are just going to go sky-higher and sky-
higher, and the way that insurance is structured actually
increases the cost of drugs because when I worked as a young
pharmaceutical rep years ago, the average price of the pills
that I sold wholesale to pharmacies was about a dime a pill,
and as soon as there was a Medicare Part D, the prices
skyrocketed because now they were getting--the pharmaceutical
companies were getting the money from the Government.
Senator Braun. Thank you for your testimony. It was great.
I am out of time, so I yield.
The Chairman. Thank you.
Senator Jones?
Senator Jones. Thank you, Chairman Collins.
Unfortunately, it seems like from all of you--and I
appreciate everyone's testimony and being here today--it is all
too familiar stories that we are hearing today.
Ms. Smith, I want to just kind of focus on you for a moment
if you do not mind. It sounds like you had to jump through a
lot of hoops with your insurance company, which is also not
uncommon, and I am sure that that had some impact.
Before I ask about the impact, what was it that they
hesitated--what did the insurance company tell you when they
were denying you coverage, and also then when they approved you
for only 3 months? I mean, it is not like that this drug was
going to cure you, but they only approved you for 3 months. Why
was that? Or what did they tell you?
Ms. Smith. They did not give me a reason. I just assumed,
when I finally after 2 years got approved for the drug and
actually got it, that, you know, it was good for a year. I did
not know that it was only for 3 months, so at the end of 3
months, I got a letter from the insurance company that said you
will have to go through pre-authorization again, which took me
2 years to get done in the first place, and now I am a year
later still trying to get it.
Senator Jones. Tell me about that 2-year period. What were
you doing during this period? What all did you have to do
during that time? And how did that impact your care?
Ms. Smith. Oh, my goodness. Well, first of all, I could not
take a statin because side effects were just--I mean, I was
almost to the point of being in a wheelchair. I could not walk,
and so my cardiologist said stop taking it, so I did, so I was
without any protection whatsoever with an extremely high
cholesterol, which was dangerous because I have had so many
heart surgeries and have cardiovascular disease as well.
We would send in an appeal. It would be denied. We have to
start all over again, so that went on and on over and over, and
finally, as I said in my statement, a physician who heard my
story decided to help me, and he got on board and was doing a
lot of actually shaming the insurance company that they were
not doing something to help me, and he actually got it
approved, but then it was only for 3 months, and we had to
start all over again, so we are back in the appeal process.
Senator Jones. Is it twice that you have gotten it for 3
months each or just----
Ms. Smith. No. Just once.
Senator Jones. Just the one time for 3 months.
Ms. Smith. For 3 months. Now I am getting samples from my
doctor, and instead of two injections a month, I am doing one,
and sometimes one every other month just so I will have some of
it my system.
Senator Jones. During this time did the insurance company
ever give you any explanation of why they were denying you
coverage for this drug?
Ms. Smith. No.
Senator Jones. None at all?
Ms. Smith. No.
Senator Jones. Your doctor is having to continue to do the
appeals to work with you?
Ms. Smith. Correct.
Senator Jones. How long has that appeal process been going
on now?
Ms. Smith. Three years total.
Senator Jones. So you are an advocate here. You are an
advocate for patients like you. What do you tell patients when
they face these kind of hurdles? How do they manage this?
Because it is not only the hurdle of managing---trying the
appeals and trying to get these drugs, but they have still got
to manage their health care during this time. What advice do
you give folks like that?
Ms. Smith. That is true. I really encourage them to be
their own advocate and to speak out and do not give up, and I
have done everything and even jokingly said that I would chain
myself to the door of the insurance company until they gave
this old lady the drugs that she needed, but you just really
have to be your own voice and speak up and say this is just not
working and do something. People are not willing to do that, so
you know, I encourage them, and I work alongside of them to get
them to do that. They just have to be their own advocate.
Senator Jones. Well, I think that is real critical, and I
am glad you said that, because people just cannot give up.
Ms. Smith. Right.
Senator Jones. You know, you have got to pester these
folks.
Ms. Smith. Exactly.
Senator Jones. Just continue to stay on it, because it
makes no sense to me. Look, I am a lawyer. I am not a doctor. I
am not a pharmacist, but it makes no sense to me that someone
would, one, just approve you just for 3 months.
Ms. Smith. Correct.
Senator Jones. Then make you go through all these hoops.
You have the same illness. It is the same issues. It is the
same drug, so they have got to just stay at it. They have just
got to pester these people.
Ms. Smith. They have got to stay at it, absolutely, and
talk with their physician, because, you know, they do have the
samples that they can help you with, and as my doctor said,
some is better than nothing, so just keep at it.
Senator Jones. Okay. Well, I am going to yield back my time
on that. I think that is an important message for everyone,
that we just cannot take no for an answer when it comes to your
health, so thank you so much for being here. I appreciate it,
and thank you all for being here and sharing your stories.
Thank you, Madam Chairman.
The Chairman. Thank you.
Senator Scott?
Senator Rick Scott. First off, thanks to each of you for
coming here. I think others have said this. First off, I want
to thank Senators Collins and Casey for putting this together,
but I think there is a time now that I think there is a lot of
interest up here to figure this out, so I think that is real
positive, because these stories are ridiculous, not being able
to take care of yourselves.
First, Ms. Dehetre, I wanted to ask you a question. How
often do you end up in the hospital a year?
Ms. Dehetre. If I actually went with the ambulance, I would
be in the hospital three to four times a month.
Senator Rick Scott. So your insurance company has to pay
for that.
Ms. Dehetre. Actually, the insurance company does not get
billed if they just show up and I do not go with them. It is
the part that I have to pay that I cannot afford, so if they
tell me I do not have to go with them, I do not go.
Senator Rick Scott. The amount that you are not being able
to afford for your insulin easily should be covered by the fact
that your health gets worse and the insurance company in theory
is responsible for the hospitalization side, right?
Ms. Dehetre. That is what I said when they do not want to
cover my pump supplies until I meet my $6,000 deductible.
Senator Rick Scott. What is their answer?
Ms. Dehetre. Their answer is they designate my pump
supplies and my blood glucose monitor supplies as ``durable
medical equipment,''
Senator Rick Scott. It seems like it is a foolish economic
decision for them.
Ms. Dehetre. It seems that way to me, too, having been
there and having to keep calling them, you know, calling and
getting the paramedics and the police and all that fun stuff
that have to come over every time my blood sugar goes low where
they have to get calls.
Senator Rick Scott. All of you have--all of you that are on
Medicare, you have a supplemental policy? Everybody has one?
When you sign up, do they tell you what drugs are covered and
what you co-payment is going to be? They do not tell you? So
you have no idea.
Ms. Holt. There are categories, and you can look up drugs
in those categories, and you are given--like mine, there are
tiers. There is Tier 1, Tier 2, Tier 3. My cancer drug is a
Tier 3. They do not give you prices. They just tell you it is
in the highest category.
Senator Rick Scott. Then they change what you have to pay
whenever they want to during the year?
Ms. Holt. It is totally opaque.
Senator Rick Scott. No one else, you have no idea we you
get your plan?
Ms. Smith. If I could, she is absolutely right about the
tier, and even when the drug companies reduce the prices of
their drugs, it depends on--it does not filter down to the
consumer because it gets caught up in that tier. If they do not
move it from the highest-priced tier, then you are still going
to pay the price, even though the insurance company has lowered
the price.
Senator Rick Scott. Okay. If you are sitting in our
position and we have the ability to pass legislation, what
legislation would you pass? I think the CREATES Act is one
thing that makes all the sense in the world, but what else
would you--I mean, I think Senator Casey asked a variety of
questions, which is potential legislation, and Senator Braun
did something similar. Is there anything else you would do? At
this point are you just fed up? Are you just saying, look, the
Government ought to set the price?
Ms. Cisek. It gets to the point where, when you do call and
they say we will change the tier, which has happened to me,
then you turn around and they have not changed it, and they
keep it at the same price. They tell you there will be a
certain co-pay, but when you go the pharmacy, it is not what is
in your plan, so what do you do? Do you pay for the medicine?
Or do you go home and call? Then they tell you the same thing,
but they do not tell you why, and even in my case, with Nexium
that I take, I went to the pharmacy to get it filled, and the
pharmacist said, ``Barbara, they will not cover the Nexium
brand.'' I was on the generic, so each year I have to go
through a pre-authorization with my doctor on a yearly basis in
order to get that, because the generic does not work for me. I
have a letter from my previous doctor that stated all the
medicines I had been on for my ulcers. They did not work, and I
thank God I saved that letter because that was dated in 2004,
but you do not know what to expect from refill to refill, even
though your plan says, ``This is what we will pay.'' They do
not stick to it, so if you call them, they tell you, ``We will
change it.'' They do not, so it is not like you do not inquire.
Senator Rick Scott. Right.
Mr. Armus. There are different co-pays for generic drugs
and for brand-name drugs, and my understanding is if there is a
generic, they will not pay for the brand name.
Now, also in the State of Florida, there is a generic drug
law where they are required to fill with a generic drug if one
exists. Even if the doctor writes for the brand name and there
is a generic, the pharmacist is required to fill with the
generic. You do not know what you are getting half the time.
You do not know what percentage. You do not what the list price
is that you are paying a percentage of, and you do not know
when you are going to go into the price gap or the donut hole
until you get there, and not only is it that drug that threw
you into the donut hole, you are paying the highest prices or
donut hole prices for all the drugs you take at that point
until you reach another threshold, which is much higher--you
may never reach that. I have never reached it.
Senator Rick Scott. Yes?
Ms. Holt. My Revlimid tablets I understand cost $1 to
manufacture, yet they charge me $740 a pill, so I think
something needs to go back to Celgene to say, ``You cannot do
that.''
There was a lawsuit that they lost last year in regard to a
different drug, and there was a public article--I believe it
was in the Washington Post--that they would just raise the cost
of their flagship drug, which is Revlimid, to cover the lawsuit
costs, so that drug has gone up and up and up just because they
can, and I do not--I am not a policymaker. I am not a
legislator, but I wish there was something to be able to
control that.
Senator Rick Scott. Thank you.
The Chairman. Thank you.
Senator Rosen.
Senator Rosen. Thank you. I want to thank you, first of
all, for bringing this hearing and for your willingness to come
here and advocate and share your stories, because there are so
many who cannot advocate for themselves. It is not that they
are not willing. They are just not able because of their
disease, because of their lack of access or understanding of
technology and ability to communicate or potential disability,
so you are acting on behalf of so many people, you will never
know, and we really appreciate that.
You know, before coming to Congress, I stepped back from my
career to be a caregiver for my parents and in-laws. I went
from everything from cancer to Alzheimer's, and I was in every
rehab and nursing home and through many courses of diseases
with many of my friends, so I know all too well on a personal
basis how difficult this web is to maneuver, and so in 2018,
six States, Nevada being one of them, have passed drug-pricing
transparency laws. We talk about you do not know--you cannot
even predict what is going on, and I do not care if you are the
biggest technologist in the world; you cannot find it, and so
these drug-pricing transparency laws, they require disclosure
from drug manufacturers and insurers to help lawmakers and the
public better understand how drugs are priced and how those
prices not only affect you but affect insurance premiums and
everything else.
I just want to ask you, in your own words, how do you think
a predictable monthly cap on out-of-pocket prescription drug
costs would help you and how would it change your life? Please.
Ms. Cisek. I think if you knew what you were going to pay
each month and amortize that over the year, that might be a
help, but what if it is the month that you have that high
medication and say every 90 days you might----
Senator Rosen. Putting a cap on prescription drug costs per
month for a family or an individual would be more helpful?
Ms. Cisek. It would be.
Mr. Armus. Well, putting a cap, a dollar amount, not a
percentage----
Senator Rosen. Yes.
Mr. Armus [continuing]. would be very helpful, but also it
must be affordable.
Ms. Smith. I agree. I think that would be a great start in
helping folks like us to afford drugs if we only knew, because,
I mean, at our age we are pretty much on a fixed income, and
you know, one of the things I tell my children and my
grandchildren, you know, be prepared for when you get older.
You might just be in your early 20's, but, you know, old age is
coming, and you really do not know what to expect. You cannot
plan for it, so you know, if you had a cap on drugs and you
actually knew what you were going to be able to pay, I think it
would help you in the long run to be able to plan for that each
month and maybe do something that could help you afford your
drugs rather than just being surprised when you go to the
drugstore.
Senator Rosen. Well, I think not just for people who are a
bit older. It affects families, too. Kids have chronic disease,
born with severe illness, and so it would help everyone, no
matter what stage you are in, trying to plan for that.
Ms. Smith. That is so true, and also, Mended Hearts works
with children born with congenital heart defects, and those
families can be devastated because usually one of the family
members, the mother or the father--usually the mother--has to
quite their job and take care of the child. It is really
devastating for those families, so I agree.
Senator Rosen. Thank you. Ma'am?
Ms. Holt. I also totally agree. I think there needs to be a
cap, and I think it would be helpful to know before we got to
where we were going what our costs would be.
Senator Rosen. Thank you.
Ms. Dehetre. I also think it is beneficial to have a cap
because, like all the other witnesses here, if you know what
that cap is, you know that you are not going to pay more than
that for your monthly supply.
Senator Rosen. Thank you, and again, I really appreciate
your willingness to advocate for those who cannot be here and
do not have a voice. You are going to make a real difference.
Thank you. I yield back.
The Chairman. Thank you very much.
Senator Hawley?
Senator Hawley. Thank you so much, Madam Chair and Ranking
Member. Thank you for calling this important hearing and
dealing with this extremely important and pressing subject. I
know that in my home State of Missouri there is no topic that I
hear about more from folks than the astronomical, out-of-
control, unpredictable costs of prescription drugs, and so I am
so glad that you are all here. Thank you for taking the time to
be here and for telling your stories. I have read your
testimony. I got to hear pieces of some of your testimony as
you delivered it here, and I know it takes a lot of courage to
be here and to testify, and of course, you have taken time out
from your own work and jobs and lives, so thank you so much for
that.
I wanted to share briefly a story I know you all can relate
to from my home State. There is no shortage of stories of
Missourians struggling with the same thing that you have helped
inform us about today, but just yesterday--just yesterday--I
heard from a gentleman who gave me permission to share this
story. His name is Jamal Horton. He is with the National
Multiple Sclerosis society, and of course, MS medication has
gotten astronomically expensive, and so a lot of folks, as you
have been describing, stretch their dosages to try and control
the costs, but then that makes it less effective, and it starts
a terrible cycle
Here is Jamal in his own words. He says: ``Due to the
debilitating effects of MS, I lost my high-paying IT job. As a
result, access to the medication I needed became financially
impossible, and then I lost almost everything. Due to the
fatigue and cognitive issues, I lost my job, I lost some
friends, my marriage. I even lost my dignity, because I lost my
job, I could no longer afford the MS medication that was
stabilizing my disease, and because of this, my condition
worsened and worsened, and now I am living with more progressed
disability. This is particularly difficult because I was an
aspiring athlete, and now I have lost my ability to even walk
very easily.''
I know that you can relate to this, as you shared today,
with your own struggles.
Can I just ask, Mr. Armus, you have a unique perspective as
someone who has seen the pharmaceutical industry up close and
personal, and I noticed in your written testimony you mentioned
the difference between the relative amounts of money that the
pharmaceutical industry spends on research and development
versus marketing. I thought that was such an interesting point.
Could you say something more about that?
Mr. Armus. Well, there are two kinds of marketing. There is
market toward the industry so that might be print
advertisements in journals, and then, of course, they spend an
enormous amount of money on a sales force, which I once was
part of, and I would like to point out also, because I have
given it some thought, and the 10 to 15 years that I was
actually in sales, we never discussed price with doctors, and
that is when the price of pharmaceuticals was relatively low,
and even more interesting to me, not once in those, let us say,
13 or 14 years, not once did a doctor ask me how much the drugs
cost, and so I never told them. It was not in my best interest
to talk about price. I was there to talk about the features and
benefits of the product.
To this day--now I see doctors a lot for my own personal
benefit, not just as a marketing person, and doctors still do
not know the prices. I just spoke with my cardiologist actually
this week, and I told him that I was coming up here, and well,
I happened to see two doctors. One of them did not know
anything about pricing, and the other one apparently did. He
was a family doctor, and he said, ``Those pharmaceutical
companies are criminal.'' That is the word he used.
I mean, I did not want to use that in my statement, but the
more I listen to my fellow witnesses here, I think it is
appropriate.
Senator Hawley. Thank you so much for sharing that. Let me
just ask all of you, insurance companies often portray
themselves as shielding the consumer, you know, standing in
between the consumer and the efforts of health care providers
or drug producers to drive up prices, and so they say, you
know, they are really on the side of the patients. Can I just
ask you, in your experience, has that been the case? Have you
found that these insurance companies--do you feel like they are
on your side and really advocating for your interests? Go
ahead, Ms. Smith.
Ms. Smith. I would love to answer that. No, they are not in
the business to protect the patient. They are not. In fact,
when I was trying to get my PCSK9 inhibitor approved, I
discovered that the insurance company, even though my doctor
would send in the prescription with the reasoning why, there
has to be a peer-to-peer review, a peer review, so some other
doctor somewhere out there in IT land would review my case who
has never seen me before and deny that I needed the drug. That
makes absolutely no sense to me.
I also found out that it depended on where you live. I am
in the South. Alabama, Louisiana, Mississippi, they are all
notorious for denying this drug. We could go north and get it
approved, but in the South, because there is one insurance
company that dominates in that area, they can charge whatever
the heck they want, so no, they do not care about the patient.
Senator Hawley. Well, thank you so much for sharing that,
and I see that my time has expired. I just want to say, you
mentioned one insurance carrier. I noticed that in our present
health care system there seem to be some people who are doing
really well and then others who are not. The people who are not
doing very well are the patients. The people who doing really
well are the insurance companies and the drug companies, and to
my mind, that is a big, big problem. Thank you all so much for
being here.
Thank you, Madam Chair.
The Chairman. Thank you.
Senator Sinema?
Senator Sinema. Thank you so much, Chairman Collins and
Ranking Member Casey, for holding the first of two hearings
dedicated to rising prescription drug costs, and thank you to
all of our witnesses who are here today and to those in Arizona
who have shared their deeply personal stories with us.
The issue I hear about most back home is the cost of health
care. There is a gentleman in Mesa, Arizona, who is lucky
enough to be insured, but he has seen the price of his
medication to treat a serious lung condition increase nearly
five times in just 1 year. He has looked, but there are no
generics available that could offer him any financial relief.
A woman from Glendale, Arizona, worries about her husband
who has a serious heart condition, but his medication costs
more than $500 out-of-pocket for a 3-month supply, so he
refuses to fill his prescription because he is worried about
how it will impact their family financially.
Another Arizona woman struggles to afford her specialty
cancer medication. Even though her medication is a generic, she
still has to pay thousands of dollars out-of-pocket and often
spends hours on the phone just to understand the unexpected
cost increases and to research payment assistance options, and
this, of course, is unacceptable.
We can and must come together to increase competition and
innovation, drive down costs, and improve the quality and
accessibility of health care, so I would like to ask our
witnesses today about the complex calculations that you all or
those you know must make in order to refill their medication,
so do you have to ask yourself is there a more affordable
generic for my condition? How much will my insurance cover this
month, if any? What kind of payment assistance options are
available to me?
What I would like to hear from you is a little bit how this
burden falls on you or those that you know to figure it out,
and what is the impact that that has on your well-being, on
your financial health, and on your family stress?
Ms. Cisek. In my case, having had problems with stomach
ulcers, I took the generic, and it ended up that I landed in
the hospital and had to have a blood transfusion, so that is
what the generic did to me, so that is why I insisted I go back
on the brand, but I do have to say my doctor very willingly has
contacted the insurance and gotten the approval. Now, mine is
for 1 year, but with a lot of the generics, though, you do not
have the same regulation. It is supposed to be a 5 milligram
pill. It can either be 4 milligrams or 6 milligrams, and what
fillers did they use?
My husband worked for Westinghouse Electric for 33 years,
had the most fantastic insurance. The medication was--I do not
want to say ``next to nothing,'' but compared to what it is
now, how much I miss that, but upon his retirement, we were
paying $741 as a Westinghouse retiree, so when you have had
really good insurance and then you go paying what you are
paying now, it hurts.
Ms. Smith. I cannot help but think, you know, I am 71. I am
not as sharp in some things as I used to be, obviously, and I
think about patients who are much older. My Mom is 92. She
cannot even comprehend the prices of her drugs. It depends on
me or my sister to do that for her, so I am thinking, as I get
older and I cannot advocate for myself, who is going to do that
for me?
That is really something that really concerns me, and I
think that is probably something that concerns a lot of
caregivers that are caring for our elderly parents or such, but
it is a concern and something that I think we need to really
look at.
Ms. Holt. With my Revlimid drug, which I take to remain
remission for my multiple myeloma, no generics are allowed.
Through manipulation of Celgene, they have kept any and all
generics off the market. Revlimid is the drug that my doctors
choose for me to be on this. With this disease, my symptoms
will come back, and there are only very limited drugs that are
effective, so when you are on a drug, they do not want you to
switch.
I am totally dependent on this drug to keep myself in
remission at this time. To have some type of generic would be
wonderful just to bring the market a little bit more
affordable, but at this point they have manipulated the system.
Senator Sinema. Thank you. Madam Chair, my time has
expired. Thank you.
The Chairman. Thank you.
Senator Gillibrand?
Senator Gillibrand. Thank you, Madam Chairwoman and Mr.
Ranking Member. This is such a crucial hearing.
I have traveled across my State to talk to people about
this crisis. Your stories are heartbreaking. The stories of my
constituents across New York are heartbreaking, and there seems
no end in sight, and so the fact that this hearing is taking
place and that we are shining a light on the abuses in this
industry and how it is affecting people's lives is important.
I talked to an advocate who lost one of her patients. He
was diagnosed with a cancer, and his medication was $5,000 a
month, and they only had $60,000 in savings, and he did not
want to leave his wife without anything, so he chose not to
take the medicine and he died. That is the real choices that
people are making every day because this industry is unwilling
to protect people's lives. They are more interested in profits
than people, and that is wrong. That is not who we are as
Americans. That is not what we represent.
Ms. Holt, thank you for sharing your powerful story. As a
single Mom with three kids, I admire your strength and
resilience. In your written testimony, you discussed having to
refinance your home just to deal with the debt brought on by
prescription drugs. How else has this impossible choice between
life-saving medicine and essential expenses impacted your life?
How is it impacting your children's lives?
Ms. Holt. Well, I obviously am not going to leave them any
inheritance, which may or may not be a good thing. My car is 13
years old, because I have a grant this year to pay for my co-
pay, I have to stay under $60,000 income, so even the savings I
do have, which is minimal, I cannot use because it raises my
income to the point that I will no longer qualify for this
grant, so I cannot take vacations. I cannot do what I would
normally do, which I would like to do because this illness is
going to come back and my life span is limited, but I am in
this strange place where I am like status quo, so that is what
is impacting me.
Senator Gillibrand. Ms. Smith, I appreciate you sharing
your story as well, and I read how you have to get creative
with the ways you pay for your drugs because of the
difficulties with insurance companies covering the cost of your
heart medication, and now you are forced to ration out samples
from your doctor. That to me is absolutely unacceptable and
shows a huge failure in our health care system.
What if the insurance company decides not to cover your
drugs this year? What if you are no longer able to access
samples from your doctor? What will you have to do? What
choices do you think will be in front of you?
Ms. Smith. Well, I would have two options. I certainly
could not pay for it, not in retirement. I would either have to
go back on the statins, which were totally debilitating, or
just not take them at all and take my chances, and that is what
I have been doing for the last 3 years on and off, except for
the 3 months that I did get access to the drug.
I mean, it is risk a heart attack or a stroke or take a
drug that makes me unable to walk. Those are the choices, and I
might add, too, I am a civil service retiree, so I have a civil
service retirement benefit that I get each month, but I am 71
so I get Social Security. My Social Security check that I get
was cut because I have a civil service retirement, so I would
not have enough money from my Social Security to pay for just
one of my drugs, let alone all 12 of them.
Senator Gillibrand. Ms. Dehetre, thank you for sharing your
story. In your testimony, you discuss the struggles with the
climbing cost of diabetes treatment, among other health care
costs, that have left you scrambling to balance your finances
each month. Fifteen years ago, if you needed a vial of insulin,
it would cost about $175. Today the same vial costs $1,500, a
reality of the prescription drug gouging that we all know too
well.
Is there anything in your experience dealing with
prescription drug costs that suggests that pharmaceutical
companies will stop taking advantage of their patients in this
way? And what else should Congress do to hold these bad actors
accountable?
Ms. Dehetre. I do not see an end to it at this point. That
is why I was so willing to come and testify today, because of
this bill and what Ms. Collins is trying to do, not only for
myself but I am friends with other diabetics. I am friends with
somebody with MS, so speaking with them, I have been exposed to
a lot of people going through the same thing, so until there
are changes made and they force them to make them, I do not
think that anything will change for us, the consumer.
Senator Gillibrand. Thank you, Madam Chairwoman. Thank you,
Mr. Ranking Member.
The Chairman. Thank you very much, Senator Gillibrand.
Ms. Dehetre, I want to followup with the conversation that
you started with Senator Scott. I received a letter from Dr.
Irwin Brodsky, who is the medical director of diabetes at the
Maine Medical Center, in which he said that approximately 40
percent of people with Type 1 diabetes, the kind of diabetes
that you have had since high school, will have a severe low
blood sugar reaction over the course of the year, and you have
talked about how often that has happened to you, and that when
it does result--first of all, it endangers your life, and you
talked about one that happened when you were driving your son,
which is scary.
Ms. Dehetre. I actually had two of my sons in the car at
the time, and it is very scary when you start to become aware
and you realize that you could have killed your children.
The Chairman. That has just got to be so frightening and
devastating.
Ms. Dehetre. It is not--yes.
The Chairman. If you go to the hospital, it is going to
cost a minimum of $2,600, so for the life of me, I cannot
understand why your insurance company will not cover a
continuous glucose monitor and a pump for you which would give
you so much better control over your diabetes, and it sounded
like for a time you did have that several years ago.
Ms. Dehetre. The actual pump and glucose monitor was
something new. I got it in 2015, and I was able to use it for
about 4 months because that is when the supplies ran out for
it, and then when I called to get new pump supplies and
realized how much it was going to be and I could not afford it,
I went back to shots, but while I was on it, I did not go to
the hospital even once.
The Chairman. Wow, so what a difference that made.
Ms. Dehetre. Right. Well, it alarms you when your sugar is
going either high or low so that you can take care of it.
The Chairman. Of course, we have had even further advances
with essentially an artificial pancreas with a closed loop
system, which is so exciting, but it is ironic that not only is
your health being endangered, but also if you are being
hospitalized more often, the insurer is ending up paying more
money, except for, as you said, when you refused to go because
you are worried about your co-pay, but that is not a great
solution for you either.
Ms. Dehetre. No.
The Chairman. I am wondering, has your physician tried to
get coverage from the insurance company?
Ms. Dehetre. My physician has tried two or three times to
contact my insurance company and petition with that company
about approving it, and to no avail, which is frustrating. It
is frustrating for me.
The Chairman. It is frustrating, and it is just plain
wrong.
Ms. Dehetre. It is. It is very wrong, and like I said, I am
friends with other diabetics as well as other people with
medical conditions that there is no cure for, and it is
frustrating to see that. My friend with MS, she sometimes does
not get her shots because they are too expensive.
The Chairman. That is why it is so important that we hear
from your experience to help us shape some of the solutions.
Some of us have introduced bills already. We are working on
other proposals.
Mr. Armus, I want to ask you a question because of your
experience in the industry. I have just introduced a bill to
try to do some reforms of the patent system, because we have
seen some real gaming of the patent system by some
pharmaceutical companies. I want to ask, in your experience, do
you believe that the increases in prices that we see on some of
these drugs that are tied to changes in perhaps their packaging
or how they are released into the body--and I realize you do
not have inside information to evaluate each of those, but
could you give us your experience on whether you think these
changes justify what are often enormous price increases? Or are
they just an attempt to game the patent system and block
generics from coming in as competitors?
Mr. Armus. The patent system is there for a manufacturer's
exclusivity. In most cases, they get 17 years of patent
protection, which they start from the day that they start
researching it, so if they take 3 to 5 years to come out on the
market, they lose that amount of time as far as their patent is
concerned, but let us say they lost 5 years, they still have 12
years of exclusivity to charge whatever they want. Nobody is
telling them what they can charge. The list price is one of the
key--it is not the only key factor, obviously, but it is one of
the key factors.
You know, I was thinking while I was sitting here, because
I said it myself, they tell us that research and development is
one of the reasons for the high cost of drugs. They get tax
credits and tax deductions for research and development, and
yet they still charge us for research and development on the
retail end. You know, I had a business of my own. I took
deductions for any research and development that I had, and so,
actually, they are getting double the value on the research and
development.
The TV advertising is totally unnecessary. They may have a
necessity if they are going to advertise to doctors because
they want doctors to know what the product is, but they are
advertising to the consumer, who cannot write a prescription.
All he could do is beg his doctor for it. I did that one time.
It put me into the donut hole so fast. I said, ``Why did you
prescribe that for me?'' He said, ``Because you asked me for
it.'' That was his simple answer.
You know, and that one was like $150 a month. I said, ``Is
there anything else that you could prescribe?'' He said, ``Oh,
yes.'' Now I have one that costs me $3 a month. That is how
little they care about prices and costs.
I do not want to take up anybody else's time. I could talk
forever.
The Chairman. Mrs. Smith, let me just end with you before
yielding to my colleague, who is being very patient. I was
struck when in October Amgen, which is the maker of Repatha,
announced that it was going to cut the list price for that drug
by 60 percent. Now, cutting the list price does not necessarily
mean that the patient is going to see a 60-percent reduction,
so we always have to remember that.
Here is the startling part of his or her announcement, the
CEO noted that an estimated 75 percent--75 percent--of Medicare
patients prescribed a PCSK9 inhibitor never actually fill the
prescription because of the high out-of-pocket cost, so here we
have this essential drug, which has been vital for you, but 75
percent of people cannot afford to use it. Would you like to
comment on that?
Ms. Smith. Yes, I would. Thank you. Definitely, and that is
a true statement; people just--they go to the pharmacy. They
find our how much their co-pay is, and they do not fill it. I
have talked with several. I have one friend who the same thing
happened to. Finally, after months and months and months, she
finally got the drug approved by her insurance company. She
went to the pharmacy. It was over $500, almost $600 for the
prescription, and she said, ``I cannot afford it.'' She did not
get it filled.
That story, it goes on and on and on. I hear it so much. I
was pretty much the same way when I first found out how much it
was going to cost, and I thought, ``I cannot afford that every
month, so I just will not get it filled.'' Then I thought,
Okay, you know, I mean, there has got to be--there is a fight
in here somewhere. We have got to figure this out.
I started on this journey of trying to get it approved, and
one of the things that I have discovered with it was the co-pay
card that is available through the company, if you have private
insurance, then you are eligible for that, but if you are on
Medicare and your supplement is a Government-sponsored
supplement, you cannot get that, and to me, those are the ones
who really need it the most, and they are not--that $5 co-pay
card is not accessible to them.
You know, it is kind of a Catch-22, but you are absolutely
right. People go to the pharmacy; they do not--and not just
this drug but others. They do not get it filled because they
cannot afford it.
The Chairman. Thank you.
Senator Casey?
Senator Casey. Thank you, Madam Chair.
I just have one question directed to Barbara. I meant to
get to this question earlier. Barbara, I went through your
testimony, and you cannot see it from where you are, but I
checked off all of the things that you listed that you are
battling or that you have suffered through. I do not want to
remind you of all that, but it is quite a long list, and as I
said before, this is a testament to real life.
I wanted to ask you about another challenge that you had,
but I think a challenge you willingly accepted, and that is
being a caregiver for your Mom when she was battling ovarian
cancer. Not all Americans have someone like you who is both a
close relative and also willing to be a strong advocate and to
be able to speak up. Many do, but many do not as well, and your
Mom was blessed to have that help, I am sure.
I guess I wanted to ask you, having gone through that
experience, what would you say about the kind of support that
you believe that most people would need to both navigate the
insurance issues as well as the prescription drug issues? What
would you tell us about that?
Ms. Cisek. Well, I know in my mother's case, my father died
at a young age. I was 15 at the time she was 45. I had a
supportive family. My husband was helpful. My son, David, very
helpful. Some of the medicines that she was going through,
thank God she had PACE. One of the medications she was taking
was Zofran. For a 1-month supply--now, it has been 20 years
since my mother died, so within that time span of the 3 years,
that was $1,500 then for a 1-month supply, so the doctor would
give the prescription. I would take it to the pharmacy. He
would call the doctor. Then, of course, it had to go through
the State, but once hospice was in the last 15 months,
everything was taken care of by them.
My promise always to my mother was that she would not end
up in a home, and I was glad we were able to do that, but I
think if you can get hospice and maybe more financial support
for the families--my mother and I were both hairdressers, so I
could juggle my schedule so that I could be with her, take her
to the hospital, take her for her radiation, but then it made
it very hectic at home, but, you know, the good days were good
and the bad days were bad.
Thank God one thing with hospice was they did the
compounding as far as medication, so everything fell under that
umbrella, but any durable medical equipment, everything was
covered, but I think so many families just do not have the
family support and the financial support, and you find--and I
dealt with my mother-in-law being in a nursing home 2 months
after my mother died, so you see it from that angle, but it
makes me wonder sometimes, so many end up on Medicaid, you
wonder why some of that cannot be directed to the family so
someone could work part-time. The medicines, if someone is not
on PACE, as my mother was----
Senator Casey. PACE meaning the State prescription drug----
Ms. Cisek. Through the State, yes, because of the income.
After my father died, there was not savings. There was no
pension, but I think there has to be the willingness to do
that, but if people like that can get their medication at a
lesser amount, pretty much as we have talked about here, if
that money could be directed toward the families, maybe you
would not have people having to juggle. You know, I have a
full-time job or the husband has, and you cannot work together
to keep your family together. In that case. my mother was
living with us the last 3 years, but she was with us quite
often. If she had a stroke, she would be with us for 8 months.
She would have a procedure; it would be another few months, but
like I say, she always did fight to get back on her feet, so
she was a strong individual that way.
If there could be more financial help within the home,
maybe it could be better afforded if they did not have to go
into a nursing home, and the care that you would receive from
your family, or at least hopefully, would be much better than
what you would have with the nursing home, but as far as
medication, I do have to say my mother had excellent Blue Cross
and Blue Shield, and that covered her expenses quite well that
way, but once she was able to get on the PACE program, that was
fantastic because when my mother died, she was getting $530 a
month Social Security. That was it, and that was in 1999 when
she died.
Senator Casey. Barbara, thanks very much.
Ms. Cisek. Thank you.
The Chairman. Thank you, Senator Casey.
I want thank all of our witnesses for appearing today and
sharing your very personal stories with the Committee.
Oftentimes when we have hearings in Congress on the cost of
prescription drugs, the witnesses are the pharmaceutical
companies, the pharmacy benefit managers, the insurers, the
hospitals, some health care providers, and today I feel that we
heard from the most important voices of all, and that is the
patients, and it is really important that we start from that
perspective as we work to solve what is an increasingly
difficult and onerous burden of high and ever rising
prescription drug prices.
We have seen increasingly that cost is such a barrier to
following a doctor's orders. It is a barrier to remaining
healthy. It is a barrier to getting well, and that should just
not be. No one should have to choose between paying the rent or
the mortgage and purchasing much-needed prescription drugs.
Nobody should have to choose to go deeply into debt or
refinance a home in order to afford drugs that are necessary to
keep that individual alive. No one should have to face the
choice of being cold and hungry in order to afford prescription
drugs.
I believe that there has been a wake-up call in Congress
that this is an issue we must address. We want to make sure
that we do not discourage innovation and the development of
important new medicines, but we also need to make sure that the
system is not being gamed and people are not being treated
unfairly.
I know that this is a bipartisan cause, as you could see
today by the number of Senators from both sides of the aisle
who attended our hearing, and many of us have introduced bills,
either together or separately. I mentioned the patent bill that
I introduced earlier this week. I know Senator Casey has a
dashboard bill to increase availability of information, and I
am a cosponsor of the CREATES bill that Mrs. Holt mentioned,
and we did have some success in the last Congress in getting
bills all the way to the President's desk and signed into law,
but, clearly, our job is not done, and that is why this is the
first in a three-part series on the cost of prescription drugs.
Tomorrow we are going to hear from experts in the field to help
us untangle this web and understand exactly what we can do to
make the system more affordable and more transparent, and then
our third hearing we will hear from the administration on its
proposals which deal with such issues as rebates and whether or
not they are reaching the patient rather than enriching those
along the supply line.
I want to thank not only our witnesses, who are terrific,
but our great staff who have worked very hard on this issue.
Senator Casey, if you have any closing remarks, I would be
delighted to yield to you.
Senator Casey. Madam Chair, thanks very much. I want to add
that that was a really good statement, and I will submit a
statement for the record.
Senator Casey. I just want to thank our witnesses for being
here and for bringing us your stories and the reality of your
lives that will help inform tomorrow's hearing and future
debates on solutions, and I just want to thank you again.
The Chairman. Thank you very much.
This hearing is adjourned. We will reconvene at 9:30 a.m.
tomorrow in this very hearing room, 138 Dirksen, to continue
this series of hearings. Thank you again.
[Whereupon, at 11:27 a.m., the Committee was adjourned.]
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APPENDIX
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Prepared Witness Statements
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Statements for the Record
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Closing Statement of Robert P. Casey, Jr., Ranking Member
In a country as prosperous as ours, we should be able to do
better. No one should be forced to choose between affording
their medication and putting food on the table. No one should
be asked to deplete their life savings in order to stay
healthy, and no one should need to split a pill or skip a dose
in order to make a prescription last longer.
As our witnesses told us, that is not always the case.
We can and must do better.
To our witnesses, thank you and we heard you.
Your experiences will be front of mind as we sit in these
same chairs tomorrow, listening to experts suggest solutions to
address the rising costs of prescription drugs.
Again, Chairman Collins, thank you for bringing these
patient voices to the conversation.
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