[House Hearing, 116 Congress]
[From the U.S. Government Publishing Office]


                        THE PATIENT PERSPECTIVE:
                       THE DEVASTATING IMPACTS OF
                        SKYROCKETING DRUG PRICES
                          ON AMERICAN FAMILIES

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


                                HEARING

                               BEFORE THE

                              COMMITTEE ON
                          OVERSIGHT AND REFORM
                        HOUSE OF REPRESENTATIVES

                     ONE HUNDRED SIXTEENTH CONGRESS

                             FIRST SESSION

                               __________

                             JULY 26, 2019

                               __________

                           Serial No. 116-55

                               __________

      Printed for the use of the Committee on Oversight and Reform

[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]


                  Available on: http://www.govinfo.gov
                     http://www.oversight.house.gov
                        http://www.docs.house.gov
                        
                                 __________
                               

                    U.S. GOVERNMENT PUBLISHING OFFICE                    
38-320 PDF                  WASHINGTON : 2019                     
          
--------------------------------------------------------------------------------------                        
                        
                   COMMITTEE ON OVERSIGHT AND REFORM

                 ELIJAH E. CUMMINGS, Maryland, Chairman

Carolyn B. Maloney, New York         Jim Jordan, Ohio, Ranking Minority 
Eleanor Holmes Norton, District of       Member
    Columbia                         Paul A. Gosar, Arizona
Wm. Lacy Clay, Missouri              Virginia Foxx, North Carolina
Stephen F. Lynch, Massachusetts      Thomas Massie, Kentucky
Jim Cooper, Tennessee                Mark Meadows, North Carolina
Gerald E. Connolly, Virginia         Jody B. Hice, Georgia
Raja Krishnamoorthi, Illinois        Glenn Grothman, Wisconsin
Jamie Raskin, Maryland               James Comer, Kentucky
Harley Rouda, California             Michael Cloud, Texas
Katie Hill, California               Bob Gibbs, Ohio
Debbie Wasserman Schultz, Florida    Ralph Norman, South Carolina
John P. Sarbanes, Maryland           Clay Higgins, Louisiana
Peter Welch, Vermont                 Chip Roy, Texas
Jackie Speier, California            Carol D. Miller, West Virginia
Robin L. Kelly, Illinois             Mark E. Green, Tennessee
Mark DeSaulnier, California          Kelly Armstrong, North Dakota
Brenda L. Lawrence, Michigan         W. Gregory Steube, Florida
Stacey E. Plaskett, Virgin Islands   Frank Keller, Pennsylvania
Ro Khanna, California
Jimmy Gomez, California
Alexandria Ocasio-Cortez, New York
Ayanna Pressley, Massachusetts
Rashida Tlaib, Michigan

                     David Rapallo, Staff Director
                    Ali Golden, Chief Health Counsel
                           Laura Rush, Clerk

               Christopher Hixon, Minority Chief of Staff

                      Contact Number: 202-225-5051
                         
                         
                         C  O  N  T  E  N  T  S

                              ----------                              
                                                                   Page
Hearing held on July 26, 2019....................................     1

                               Witnesses

David Mitchell, Patient, Founder- Patients for Affordable Drugs, 
  Bethesda, MD
    Oral Statement...............................................     4
Ashley Krege, Patient, Houston, Texas
    Oral Statement...............................................     6
Laura McLinn, Mother of Patient (Minority Witness), Indianapolis, 
  Indiana
    Oral Statement...............................................     7
Sa'Ra Skipper, Patient, Indianapolis, Indiana
    Oral Statement...............................................     9
Pam Holt, Patient,Grangier, Indiana
    Oral Statement...............................................    10

Written opening statements and witness' written statements are 
  available at the U.S. House of Representatives Repository: 
  https://docs.house.gov.

                              ----------                              

The documents listed below are available at: https://
  docs.house.gov.

  * Rep. Connolly's Statement for the Record.

  * Unanimous Consent: National Hispanic Medical Association 
  Letter, and Initiative for Medicines Access and Knowledge 
  Letter; submitted by Chairman Cummings.

 
                        THE PATIENT PERSPECTIVE:
                       THE DEVASTATING IMPACTS OF
                        SKYROCKETING DRUG PRICES
                          ON AMERICAN FAMILIES

                         Friday, July 26, 2019

                   House of Representatives
                  Committee on Oversight and Reform
                                           Washington, D.C.

    The committee met, pursuant to notice, at 9:29 a.m., in 
room 2154, Rayburn House Office Building, Hon. Elijah Cummings 
(chairman of the committee) presiding.
    Present: Representatives Cummings, Maloney, Norton, Raskin, 
Rouda, Welch, Speier, Kelly, DeSaulnier, Khanna, Gomez, Ocasio-
Cortez, Pressley, Tlaib, Jordan, Meadows, Hice, Grothman, 
Cloud, Roy, Miller, and Keller.
    Chairman Cummings. The committee will come to order. 
Without objection, the chair is authorized to declare a recess 
of the committee at any time. This full committee hearing is 
convening regarding the patient's perspective and the 
devastating impacts of skyrocketing drug prices on American 
families. I recognize myself for five minutes to give an 
opening statement.
    Today, we are closing this work period the way we started 
our work this Congress, with a hearing on prescription drug 
prices. This is a bipartisan issue that I have focused on for 
many years. The first witness in our hearing this Congress was 
a woman named Antoinette Worsham, a mother whose daughter died 
at 22 years of age after rationing insulin because she could 
not afford it. And it was the subject of our hearing on the HIV 
prevention drug in May.
    Today, five patients and their family members are here to 
share their stories. I urge all members to go back to your 
districts and to talk to your constituents about their 
experiences struggling to pay for life-saving drugs. I fear you 
will discover that we are facing a drug-pricing crisis in 
America. We've seen time and time again drug companies 
skyrocketing prices are forcing families to make gut-wrenching 
choices every day. Many families have to choose between caring 
for themselves and their loved ones or paying for basic 
necessities. These skyrocketing prices are forcing families to 
take on debt, sacrifice their homes, or sacrifice their 
healthcare altogether. Imagine having to pick between having a 
roof over your head or protecting your child's life, between 
eating that day or taking a pill that you need to simply stay 
alive. For Americans around the country, these situations are 
an everyday reality.
    Think about it. Americans are dying every year while 
pharmaceutical companies enjoy more and more profits. Our 
witnesses today represent the one in four Americans who 
struggle to afford the drugs that keep them healthy and, in 
many cases, keep them alive. Unfortunately, drug companies 
continue to raise prices, rake in record profits, and lavishly 
reward their executives and shareholders, all while stifling 
competition and preventing access to life-saving drugs. Drug 
companies make up only a quarter of the healthcare industry, 
but they collect more than half of its profits. Some drugs are 
developed with Federal funding, yet the industry ignores its 
responsibilities to the American taxpayer and reaps massive 
profits from our investments.
    Drug companies use a variety of tactics to increase their 
profitability. They use loopholes in the patent system and the 
pay-for-delay agreements with competitors to extend monopolies 
so they can keep increasing their prices. Even when there is 
supposed to be competition, so-called competitors increase 
their prices in lockstep, stuffing their pockets while the 
American families are left paying the bill. To be sure, we all 
want drug companies to be successful. We want them to innovate. 
All of us depend on the pharmaceutical industry to develop 
cutting-edge therapies and breakthrough drugs, but what we 
cannot abide is profiteering at the expense of patients and the 
American taxpayers. That is why the committee has been 
investigating the pharmaceutical industry's price increases.
    This investigation, which began in January, focused on the 
17 highest costing drugs for the Medicare part D program. Our 
investigation has made significant progress, but we plan to do 
more. Let me be very clear, the committee will take all the 
steps necessary to ensure full compliance with our 
investigation, including with our requests to drug companies 
for documents showing why they're increasing their prices 
dramatically, and how they're using the proceeds, and what 
steps can be taken to reduce the prices.
    Our investigation will allow the American public to lift 
the veil on the industry's pricing practices, and we will help 
inform the policy solutions to bring drug prices down. This is 
a problem that everyone, even in this polarized time, can come 
together to address. And I am hopeful this hearing will be 
another step in that direction.
    Now I yield to the distinguished ranking member of our 
committee, Mr. Jordan.
    Mr. Jordan. Thank you, Mr. Chairman. The cost of 
prescription drugs is way too high. The chairman knows it, I 
know it, our constituents know it, and certainly--certainly--
our panelists know it. I want to thank you all for being here 
today. Some on the other side of the aisle, though, feel that 
that these high drug prices represent a failure of markets, a 
failure of capitalism. They feel that markets don't work, and 
the result is companies exploiting patients to line their 
pockets. They have gone so far as to embrace socialism as the 
answer to this problem.
    The reality is they have the situation completely backward. 
It's not a failure of the free market that has resulted in drug 
prices being too high. The failure stems from government's 
intervention in the pharmaceutical and healthcare markets. How 
did we get here? Laws and regulations that the government has 
put in place have led to the abuse of the patent system and the 
lengthy approval process at the FDA. These and other loopholes 
delay needed generic competition.
    These challenges are tough. They require us to roll up our 
sleeves and do the tough work together--together--to figure out 
how to make the system work better. We made some progress, both 
administratively and legislatively. Under the Trump 
administration, the FDA has been approving geriatrics at a 
record rate. In October 2018, the FDA approved 110 generic 
drugs and tentatively approved 18 more, including 23 first 
generics for brands that lacked competition and 17 complex 
generics, resulting in $26 billion in savings for the consumer.
    From May 2017 through September 2017, there was an average 
of almost 73 generic applications approved per month, up from 
about 57 approvals per month from January through April.
    And in May of last year, President Trump signed into law 
the right-to-try bill, which allows terminally ill patients 
access to experimental treatments as soon as they are deemed 
safe by the FDA, rather than having to wait the years it takes 
for the drug to go through the entire bureaucratic process. The 
right-to-try law provides new treatment opportunities for 
patients who exhausted all other existing options.
    We also are working on a number of bills, including a few 
that have already passed the Judiciary Committee unanimously. 
One of those bills is the CREATES Act, a bill that I cosponsor. 
The CREATES Act would ensure that generics get timely access to 
life-saving drugs so that they can be available to more people 
more quickly. I'm hopeful that the bill will be put on the 
House floor in short order. There is speculation that Speaker 
Pelosi and the House Democrats will be putting forward a drug-
pricing bill when we return from the August recess. I hope that 
the approach the Democrats take is different than what we saw 
in the past and seek to deliver real solutions to our real 
concerns.
    Democrats set back the American healthcare system 
drastically the last time they were in charge, when they rushed 
a partisan bill through Congress, with no Republican 
collaboration. It would be wrong to salvage the Obama 
Administration's disastrous healthcare legacy by putting 
controversial partisan bills in the drug-pricing package.
    The United States is light years ahead of the rest of the 
world when it comes to ground-breaking medicine, and it's no 
wonder. Our pharmaceutical companies spend over $169 billion 
annually on research and development. Certainly companies are 
entitled to make money on the drugs they invest in and develop. 
I hope we can all agree on that. But that process cannot be 
distorted by government interventions that result in inflated 
prices.
    We must work to find ways to preserve America's cutting-
edge innovation but ensure that the system works so that these 
innovations make it to as many patients as possible. I want to 
thank David Mitchell for joining the panel. It's good to see 
you again. His commitment to this issue is inspiring. Thank you 
for returning. I know you testified in front of the 
subcommittee I had the privilege of chairing last Congress. And 
I'm especially grateful for Laura McLinn joining the panel as 
well. Her son Jordan has Duchenne muscular dystrophy. Thanks to 
innovation by companies here in the United States, Jordan is 
not just walking but running and living a complete life. He 
would be here himself today, I understand, but he's at summer 
camp, which is probably where kids need to be in the 
summertime. I also want to thank the other witnesses for being 
with us today. I look forward to a productive discussion this 
morning.
    Mr. Chairman, I thank you for holding this hearing, and I 
yield back.
    Chairman Cummings. Thank you very much. Now we will turn to 
our witnesses who are here to share their stories. First, we 
have Mr. David Mitchell. He is a patient and the founder of 
Patients for Affordable Drugs, from my state, Bethesda, 
Maryland. Welcome.
    Ms. Ashley Krege, a patient from Houston, Texas.
    Ms. Laura McLinn, the mother of a patient from 
Indianapolis, Indiana.
    Ms. Sa'Ra Skipper, a patient from Indianapolis, Indiana.
    And Pam Holt, a patient from Granger, Indiana.
    Before I swear you in, let me just explain to you that we 
don't have as many members here today because we were expecting 
to be in session today, and we're not, which means that a lot 
of Members had to leave to go home. But understand, we 
appreciate you being here, and I wanted to make sure--some 
people asked me whether I should postpone this hearing, and I 
said, out of respect to you all, I wanted to make sure that we 
held this hearing, and so I hope that you understand that.
    If you would all please rise and raise your right hand, I 
will begin swearing you in. Raise your right hand, please. Do 
you swear or affirm that the testimony you are about to give is 
the truth, the whole truth, and nothing but the truth so help 
you God?
    Let the record show that the witnesses answered in the 
affirmative. Thank you. You may be seated.
    The microphones are extremely sensitive, so please speak 
directly into them. And, without objection, your written 
statement will be made a part of the record.
    With that, Mr. Mitchell, you are now recognized for five 
minutes.

  STATEMENT OF DAVID MITCHELL, PATIENT, FOUNDER, PATIENTS FOR 
              AFFORDABLE DRUGS, BETHESDA, MARYLAND

    Mr. Mitchell. Thank you, Chairman Cummings, Ranking Member 
Jordan, thank you, and to my Congressman, Mr. Raskin, thank you 
for being here. I'm honored to be here. I'm David Mitchell, 
founder of Patients for Affordable Drugs. More importantly, I 
have an incurable blood cancer, and prescription drugs are 
keeping me alive. Every two weeks, I spend a half a day at a 
clinic getting an infusion of drugs that are currently priced 
annually at $650,000. I've relapsed twice, and, unfortunately, 
I'm failing on this current drug regime. Eventually, I'm going 
to run out of options. So the importance of innovation is not 
theoretical for me, it's literally life and death.
    But my experience as a patient taught me one irrefutable 
fact, and that is, drugs don't work if people don't afford 
them. When I learned I was sick, my doctors put me on a drug 
called Revlimid. Pam Holt will talk about her experience with 
Revlimid, but for Medicare patients in general, out-of-pocket 
costs for Revlimid can run to $15,000 a year. The principal 
reason it's so expensive is because its maker, Celgene, has 
gamed the system and refused to sell samples to generic 
companies who want to bring a competitor to market.
    But Celgene isn't alone in making high prices for drugging. 
Take Johnson & Johnson, I take one of its drugs called 
Darzalex. The monthly price is $36,000. It has increased almost 
20 percent in just a little over three years. Or Pfizer: Meg 
Jackson Drache (ph) from Magna, Utah, has fibromyalgia and 
neuropathic pain. Meg was prescribed Lyrica, but when she found 
out it would cost her $550 out-of-pocket each month, even with 
a discount card, she decided to take only a third of the dose 
her doctor recommends for her.
    But to address the problem of out-of-control prices, we 
really have to come to grips with some larger facts. Despite 
what drug companies tell us, sky-high prices are not about 
innovation. Multiple studies show that there is no correlation 
between the cost of R&D and the price of the drug. And 
taxpayers foot a huge portion of bill for the basic science 
that leads to new drugs. Every single drug approved by the FDA 
from 2010 to 2016 was based on science funded by taxpayers 
through the NIH. In fact, the NIH is the single largest funder 
of biomedical research in the world.
    Meanwhile, independent analyses show that nine out of 10 
drug companies spend more on advertising and marketing than 
they do on R&D. Why do drug companies charge so much? Because 
they can. Yes, drug companies should profit when they develop 
innovative drugs, but we are way out of balance right now, and 
it's costing us all in our family finances, our health 
outcomes, and our lives. So I want to suggest three things that 
we could do today to rebalance the actual risk of innovation 
with a fair price for patients: one, reform patent law; two, 
end the days of monopoly pricing power without taxpayer 
negotiations and force transparency from drug middlemen.
    Let's start with patent law. Brand drug companies are 
abusing our system to extend their government-granted 
monopolies and block competition. They use a whole array of 
tactics. Mr. Jordan mentioned REMS abuses, anticompetitive pay-
for-delay deals, patent thickets, evergreening, sham citizen 
petitions. We need to correct those, and there are bills moving 
through Congress to do that.
    Next, we need direct Medicare price negotiations, and we 
need to restructure Medicare part D. Our current system isn't 
working. We pay two to three times what other countries pay for 
the exact same drugs. One big reason is that other countries 
negotiate. We should, too. International reference pricing, as 
proposed by the administration, or inflation caps that were 
just passed out of the Senate Finance Committee on a bipartisan 
vote are other ways to approach this to restrain list prices.
    We also need to restructure Part D along the lines of the 
legislation that cleared Senate Finance yesterday.
    And, finally, we need more transparency around PBMs. These 
huge companies cut deals that determine how much patients pay, 
but it's all secret. Competition, free markets, can't work 
without transparency.
    Right now, there's a fundamental question drug companies 
want us to ask about drug prices. What are we willing to pay to 
save a life? And while that's easy when it's your child's 
ability to live, to breathe, when it's your wife's diabetes, 
when it's your own cancer, the answer is anything. But that's 
the wrong question. The question we should be asking is, what 
is the right amount of money that drug companies should make on 
these drugs? With literally hundreds of clinical trials under 
way for new gene therapies that are currently priced at a half 
a million dollars or more, we can't pay just any price the drug 
companies demand. Neither American families nor or healthcare 
system can afford that.
    I feel incredibly grateful to be here today representing 
patients all across the country. I believe the moment is at 
hand, and we can address this problem, and with bipartisan 
support, we will. Thank you again for having me.
    Chairman Cummings. Thank you very much.
    Ms. Krege?

       STATEMENT OF ASHLEY KREGE, PATIENT, HOUSTON, TEXAS

    Ms. Krege. Chair Cummings, Ranking Member Jordan, members 
of the committee, thank you for having me here today to share 
my story. My name is Ashley Krege. I'm 35 years old, and I live 
in Houston, Texas. I'm one of the thousands of Americans who 
took the world's top selling drug known as Humira. I took 
Humira to treat a chronic autoimmune condition called 
psoriasis, which causes pain and inflammation. After finally 
getting approved for the drug, I had to pay $753 a month. To 
say this was a financial hardship would be an understatement. 
The drug cost more than my car payment, more than my business 
insurance, more than my food bill each month, but I made the 
decision to suck it up and pay because the drug worked. After 
months of successful pain and symptom management on Humira, I 
was informed the drugmaker AbbVie had raised the price, and my 
new monthly payment was going to be almost $1,100 a month. I 
simply could not afford it any longer. I had to make the 
difficult decision to wean myself off of the drug that had 
provided me months of relief. It was already expensive for me 
at $750 a month, and I couldn't afford the 40 percent price 
increase.
    Let me tell you a little bit about Humira. The drug is far 
from new. It's been on the market since 2002, and the price has 
gone up nearly 400 percent, at $5,174 a month. AbbVie is making 
billions on the backs of patients, $20 billion alone in global 
sales last year. That is more revenue than every NFL team 
combined.
    And AbbVie has done everything in its power to block 
competition and keep cheaper generics off the U.S. market. They 
have struck deals with more than a dozen companies that try to 
develop biosimilars. They filed 247 patent applications in 
order to delay competition in the U.S. But while AbbVie was 
hiking prices and blocking competition in the U.S., a 
biosimilar came to the market in Europe. As a result, AbbVie 
began selling Humira for 80 percent less--overseas.
    Unfortunately, that's not the end of my story. I had a 
similar experience on Enbrel, which is another drug examined by 
your investigation. Price hikes again led to unaffordability, 
and I stopped taking that drug. As a result, my symptoms came 
back. To give you an idea of what a full-body psoriatic flare-
up feels like, I'd like to imagine getting a terrible sunburn, 
the kind that makes your entire body feverish, then add falling 
into a bed of fire ants. That is what it feels like during a 
flare without medication, and that is why I'm here today. 
Because there are two bills in the House of Representatives 
that would help patients like myself. H.R. 1499 and H.R. 2296 
have both passed the Energy and Commerce Committee. The first 
bill would stop branding companies like AbbVie from paying off 
generic companies that plan to bring a competitor to market. In 
exchange for this payment, the generic manufacturer often 
delays its product's entry into the market, and patients like 
me are stuck facing bills of $1,100 per month for Humira.
    The second bill called the Fair Drug Pricing Act would 
increase transparency and require justification for price hikes 
like the one AbbVie enjoys taking on the backs of patients like 
me. These bills are just a start. They would not solve all of 
the problems in our drug-pricing system or end all of the ways 
that drug companies abuse their monopolies. Americans like me 
are desperate for relief for high-cost prescription drugs, and 
you have the opportunity to advance legislation that curbs two 
of Pharma's most egregious practices. I hope today's hearing 
isn't the last stop, and thank you for your time.
    Chairman Cummings. Thank you very much.
    Ms. McLinn?

  STATEMENT OF LAURA MCLINN, MOTHER OF PATIENT, INDIANAPOLIS, 
                            INDIANA

    Ms. McLinn. Chairman Cummings, Ranking Member Jordan, 
members of the committee, it's an honor to be here today. Thank 
you very much. My name is Laura McLinn, but most people just 
know me as Jordan McLinn's mom. I come here today simply as 
that--Jordan's mom. The words I speak are my own, and they come 
straight from my heart. Jordan is my amazing, funny, kind, 
compassionate, faith-filled little boy, but he's also in a race 
with the clock for his life. Because just before his 4th 
birthday, a doctor told us he has a rare and fatal muscle-
wasting disease called Duchenne muscular dystrophy.
    According to the natural history of this disease, Jordan 
has already lived about half of his life, at just 10 years old. 
DMD affects about one in every 5,000 boys, and over a short 
time, it robs them of their ability to do the things that most 
boys love to do--walk, run, play, climb, participate in sports, 
ride bikes, use the bathroom independently, feed themselves, 
dress themselves. Eventually, even the strength to hug their 
moms is ripped away. Jordan gives the best hugs ever. So for 
him not to be able to do that to me is not okay. The heart and 
lungs are eventually affected which leads to a very young and 
devastating life expectancy.
    Because of innovation and laws that Congress has passed 
over the years, I'm here today to tell you that my Jordan now 
has hope. He is the epitome of hope. He's defying the natural 
history of this disease, and he is a direct participant in 
helping to create hope for others.
    About two and a half years ago, Jordan became one of 16 
lucky boys in North America to be accepted into a clinical 
trial for a therapy designed to slow the progression of his 
Duchenne. He's made weekly trips out of state during this time 
to receive infusions without a single complaint, ever. During 
this time, we've noticed that Jordan is doing things that we 
were told a 10-year-old child with Duchenne wouldn't typically 
be able to do. He's still walking, quite well. He's playing 
outside for hours. He's climbing stairs in a normal way, while 
most kids at this age can't climb the stairs at all or can't do 
it very easily. He's dancing, running, jumping into pools, 
catching balls. Keep in mind, Duchenne progressively robs boys 
of these very things.
    Just last week, a research team showed me MRI images of 
some of Jordan's muscles, and they told me that they did not 
look like the images of a person with Duchenne muscular 
dystrophy.
    When Jordan was first diagnosed, there was no clinical 
trial that he could participate in. Now there are multiple 
treatments in the pipeline. It is absolutely incredible how 
fast the science is moving. But Jordan and other patients like 
him cannot afford to see this innovation slow or stop. I 
desperately need these scientists, doctors, and drug companies 
to continue to develop drugs for my son and the millions of 
others with devastating diseases. And for that reason, I'm here 
today to remind you that we must continue to encourage and 
reward innovation.
    Because of bipartisan work that many of you have been a 
part of over the years, fast-track designation, accelerated 
approval pathway, innovative trial designs, I expect that 
Jordan's drug is going to be approved soon. When that happens, 
it's probably going to be expensive, as are most drugs for rare 
diseases. These aren't old drugs that have been around for 
years, though. Let's please be careful in these conversations 
about drug pricing, not to mesh those two. Innovation is 
expensive, and it's also the only thing that's going to help 
ensure that boys like my Jordan can be a part of the first 
generation to change the natural history of this devastating 
disease.
    If we lose innovation, we lose the most valuable thing that 
we can't put a price tag on--human lives. We cannot afford to 
let that happen. So, as we work to tackle these issues of 
access and affordability of existing treatments, treatments 
currently in clinical trials, and treatments and cures yet to 
be discovered for boys like my friend Maurice's son Joseph, who 
is 16 and waiting because he doesn't have anything yet. I 
implore you to do so carefully and remember that one size does 
not fit all. We can't afford to discourage those discoveries 
and the development of new therapies. If we had done that 10 or 
20 years ago, Jordan wouldn't be doing what he's doing today; 
he wouldn't be benefiting from these treatments.
    Back home in Indiana today, parents are gathering to pick 
up their kids from MDA camp, and they're hearing all about 
their kids' adventures. I won't be there for Jordan. Instead, 
with his blessing, I came here to share this with you--the 
critical importance of driving forward the promise of new and 
better treatments for all of those who wait. I can't wait to 
get home to hug him tonight, and hopefully I'll never have to 
stop receiving those hugs.
    Because Jordan can't be here today, to speak for himself, I 
did want to leave you with a favorite quote of his. It's his 
life verse. It's from Jeremiah 29:11, from his favorite book. 
It says: For I know the plans I have for you, declares the 
Lord. Plans to prosper you and not to harm you. Plans to give 
you hope and a future.
    Thank you today, all of you, from the bottom of my heart, 
for wanting to make hope tangible, for caring about the future 
of millions of patients depending on you to keep innovation 
alive, and for also caring about helping patients access these 
treatments, which is very important. Keeping in mind, though, 
please, that one size does not fit all. I hope you ask 
questions, and I also welcome each of you to reach out to me 
personally after the hearing to just continue this important 
dialog. Let's work together and just keep doing the next right 
thing. Thank you very much.
    Chairman Cummings. Thank you very much.
    Ms. Skipper?

   STATEMENT OF SA'RA SKIPPER, PATIENT, INDIANAPOLIS, INDIANA

    Ms. Skipper. Good morning, Chairman Cummings, Ranking 
Member Jordan, and members of the House Committee on Oversight 
and Government Reform. My name is Sa'Ra Skipper, a member of 
Affordable Insulin NOW and T1International. Thank you so much 
for inviting me to come speak with you today and for taking the 
time to listen to just some of the ways pharmaceutical 
companies are putting corporate profits above the lives of 
people like me.
    As a resident of Indianapolis, Indiana, I live in the 
shadow of Eli Lilly's national headquarters, and my life has 
been at the whim of the company since I was diagnosed with Type 
1 diabetes when I was five years old. Since then, Eli Lilly's 
refusal to control the cost of the drug I depend on has wreaked 
heartbreak and havoc on my life, my sister's, and those who 
care about us. I don't remember my life without this burdensome 
disease. Being diagnosed at such a young age, I had to grow up 
fast. I had to appreciate life very early on because if my dose 
was miscalculated by one unit, it will cost me my life.
    I can remember being in the hospital multiple times a week, 
nurses secretly spying on my mom to make sure she wasn't eating 
my food because my blood sugar would drop so fast. But, in 
actuality, my body was rejecting the insulin. I can remember 
showing teachers scars on my fingertips from checking my blood 
sugar levels because they didn't believe I was diabetic when I 
complained about not feeling well. Having such a huge 
responsibility at such a tender age makes me feel robbed of my 
childhood.
    Being the middle child, I tried to stay in my lane as a 
little sister, even though my brother may not think so, and I 
take my duty as a big sister very seriously. When my baby 
sister Shelby was diagnosed with Type 1 diabetes at the age of 
seven, the bar of setting a good example was set a thousand 
times higher. I remember seeing my sister and mother weeping. I 
recall taking Shelby in the bathroom of the doctor's office and 
trying to comfort her and tell her it would be okay. Shelby and 
I have a fear of going through the same challenges as our Aunt 
Joy, our mother's sister that passed away at 47 due to 
complications of Type 1 diabetes.
    My sister and I have been fighting for our lives since we 
were children, and it has not been easy. It hurts to know that 
some Type 1 diabetics travel to Mexico or Canada for insulin or 
even buy insulin off of the black market. The fact that four 
people under the age of 30 died last month due to rationing and 
not being able to afford their insulin is gut-wrenching. 
According to a survey done by T1International, one in four 
people ration their insulin. This is unacceptable. This is why 
the movement to make insulin affordable for all is so 
important.
    During my freshman and sophomore year of college, I had to 
ration my insulin. For reasons to this day I still don't 
understand why I was denied Medicaid, and I aged out of my 
pediatric endocrinologist. The last prescription I received 
from my doctor came with a note saying: I'm sorry, but this is 
the last prescription I can fill for you.
    My professors knew my predicament and yet some could care 
less and didn't care to help me in class, since I spent the 
majority of it in the bathroom or asleep. I survived by eating 
less food so that I could take less insulin to make my vials 
stretch. This is the fear that I had to live throughout my 
education. This is the reality that so many people with 
diabetes face every single day.
    Let's shift gears. It's May 2018. I'm working full time for 
a big corporation with benefits, but even with insurance, my 
insulin supply, my 30-day insulin supply was a thousand 
dollars. That's just insulin. That price does not include test 
strips, needles, and other vital supplies.
    I couldn't afford to purchase my full supply of insulin, so 
my sister risked her life by sharing hers. One night I took my 
nighttime dose of insulin, and I left the vial on the dresser 
for my sister to see. I assumed that she would think that I had 
already taken my dose, since I left the vial on the dresser, 
but she didn't. She thought that I still needed to take my 
insulin for the evening, so she took less of her normal dose to 
ensure that there was enough left for me to take. She put 
herself at risk. The next day she went into diabetic 
ketoacidosis, had to be hospitalized for four days, the veins 
in her body blew, and she had to have a PIC line in her neck 
and almost went into a diabetic coma.
    I couldn't afford my insulin because Eli Lilly, and others, 
refused to control the cost of insulin. It almost cost my 
sister her life. Price-gouging is killing people. These 
pharmaceutical companies are committing murder and getting away 
with it. You all as leaders have some say so in making a 
change, and while young people continue to die from rationing, 
you are just as responsible as the people profiting off of 
their lives.
    Change for this issue will not be a sprint. The marathon 
continues. And while young--and as a patient advocate like me, 
I will not stop speaking out until you find a way to put an end 
to the insulin price crisis in America. No matter how long it 
takes, we will be building our numbers and demanding change, 
because our lives depend on it. Thank you.
    Chairman Cummings. Thank you very much.
    Ms. Holt?

      STATEMENT OF PAM HOLT, PATIENT, SOUTH BEND, INDIANA

    Ms. Holt. Chair Cummings, Ranking Member Jordan, members of 
the committee, thank you for inviting me to share my story. My 
name is Pamela Holt. I'm from Granger, Indiana, just outside of 
South Bend. At the age of 40, I was suddenly widowed when my 
husband died from a sudden heart attack. I raised three 
children on my own. I was fortunate at that time to be a 
teacher and then an administrator, with what I felt were good 
benefits that set me up for a good retirement.
    That all changed, however, when I was diagnosed with 
multiple myeloma three years ago--the same illness as David. 
Multiple myeloma is an incurable but treatable blood cancer. 
Upon my diagnosis, I underwent a bone marrow transplant and 
chemotherapy. I'm literally blessed to be in remission today. 
I'm living on borrowed time, but I'm thankful for every day.
    However, to keep my cancer at bay, I must take the drug 
Revlimid. Initially, this plan felt really good. I would get to 
live longer, help to raise my grandchildren, spend summers at 
our favorite lake in Wisconsin, and for that, I'm really 
grateful. But when I learned the cost of Revlimid, I was 
horrified. The price of Revlimid is over $250,000 per year. 
Last January, on Medicare part D, because I am 70, I went in 
and out of the doughnut hole, paying $4,950 that first month, 
and then more than $8,000 out-of-pocket over the rest of the 
year. This is on Medicare with a good supplement.
    That cost was totally unaffordable for me. After just one 
year, it sent me into serious debt. I was entirely under water, 
and I had to make the heartbreaking decision to refinance my 
house. It was three years from being paid off, and now I'm 
starting completely over. In the last year, I've been fortunate 
to receive a grant for the cost of my Revlimid out-of-pocket, 
but this assistance is year to year, and it can always fall 
through. It's income-dependent. I don't feel I should have to 
depend on these yearly grants to be able to live and afford a 
medication that I need to survive. There are years that I do 
qualify and years that I don't qualify.
    I feel I've spent my life doing some of the right things--
contributing to my community, teaching public school, raising 
my children. I don't feel it's right that despite all this hard 
work and careful planning, I find I face financial challenges 
because of cancer I have no control over. I'm really thrilled 
and grateful for the additional time Revlimid has given me. But 
having cancer is really hard. I shouldn't have to lose my 
savings and stress over finances just to stay alive.
    I'm encouraged by the action Congress is starting to take 
in the hearings of the last couple months, and I'm particularly 
grateful for this committee for listening. What patients need 
most is a real change to the system and congressional action 
that will bring down drug prices.
    For me, one solution would be the CREATES Act, which Mr. 
Jordan talked about. CREATES addresses a tactic the company 
that makes Revlimid, Celgene, uses to deny generic companies 
access to samples of Revlimid. This prevents generic 
competitors from coming to market and allows Celgene to set the 
price of Revlimid high. I came to D.C. last year to encourage 
Congress to pass this important piece of legislation. I'm 
grateful that the bill has passed the House Energy and Commerce 
and Judiciary Committees, and I really hope it gets over the 
finish line as soon as possible. Thank you.
    Chairman Cummings. Thank you very much.
    I now yield myself a few minutes to ask a few questions. 
First of all, I want to thank our witnesses for being here. 
Clearly, you have shared very, very, very personal stories of 
pain. I often say that so often out of our pain comes our 
passion to do our purpose. Pain, passion, purpose. So we thank 
you.
    You are here to remind us that the actions of drug 
companies in raising prices have real consequences for real 
people. Ms. Skipper, let me start with you. What is the most 
difficult choice you or your family members have had to make 
because of the price of a prescription drug? And then just so 
you'll be prepared, Ms. Holt and Ms. Krege, I'm going to ask 
you the same question. Go ahead.
    Ms. Skipper. Thank you. I feel that the most difficult 
thing was just keeping up with rent. We had to move around a 
lot, and my parents--it was either we paid the rent, or we--or 
me and my sister lived. As an adult now, I feel that I've made 
the sacrifice of really just enjoying my life. I'm 23 years 
old, and I'm tired. I don't want to be tired anymore. And I 
don't want anybody else to feel like how I feel. And I feel 
like it's unfair that not just only the four people under the 
age of 30 who died last month, but any and everyone who has 
been affected by rationing, that they didn't get to have that 
decent quality of life.
    Chairman Cummings. Ms. McLinn, I want to go to you, that 
same question. Ms. McLinn, what has been the most difficult 
decision you had to make? Ms. McLinn, you also said something 
that was so powerful when you talked about your son, like, a 
race against time. And one of the things that I've noticed is 
that NIH is a phenomenal place and coming up with things that 
used to be fatal; they're coming up with solutions to make them 
chronic. Hopefully the things that are going on that you talked 
about will be helpful to your son. But go ahead. What's the 
most difficult decision that you had to make with regard to 
your situation, ma'am?
    Ms. McLinn. Well, one difficult situation that I've had to 
face, a decision with Jordan, is actually a decision that was 
difficult but also a decision that when he was diagnosed, I 
didn't even think I would be able to be in the position to have 
to make a decision. Jordan actually qualified for two clinical 
trials for similar drugs that are designed to do the same 
thing. And I actually had to make a decision at the last minute 
to choose one drug company over another because of the clinical 
trial design.
    In one of the clinical trial designs, our boys were asked, 
a third of them, to be on a placebo, for 96 weeks. That's 
really hard when you know what happens so quickly and at this 
age, because like I said, at Jordan's age, we never thought 
he'd be doing the things he's doing. So, if he were in a 
clinical trial right now, receiving a placebo for 96 weeks, we 
know what happens. So we know what happens when these kids 
don't get treatment. So, for me, that was--I mean, it's kind of 
a bittersweet thing to say. I mean, I never thought I'd be able 
to actually have clinical trials to choose for my son. So I'm 
extremely grateful for the innovation, but I also think--I know 
this isn't the purpose of this committee, but I do think that 
it's worth saying, since you asked me the question, that we 
also need to continue to rethink the clinical trial design for 
rare and fatal diseases as well.
    Chairman Cummings. Ms. Krege?
    Ms. Krege. For me, probably one of the most difficult 
decisions is having to make the choice to go on affordable but 
pretty hard immunosuppressants. The current one I'm on that is 
affordable--I just got married. My husband and I have had to 
make the decision to--I can't have kids if I'm on it. It's 
absolutely not allowed because it's a hard--it's an old chemo 
drug. That sucks, to be quite frank. I wish there were generic 
options for me. I don't mind paying for a drug, but it needs to 
be accessible and affordable.
    I'm self-employed. I do well. There's no way anyone can 
afford $1,100 a month. And they just keep introducing new 
biologics, which are even more expensive than the current ones 
on the market because there are no generics available. That's 
huge for somebody like me.
    Chairman Cummings. Thank you.
    And Ms. Holt?
    Ms. Holt. I think the most difficult, or one of the most 
difficult things was the induction therapy I needed, the 
chemotherapy I needed, I went to the drug counter, and my bill 
was over $4,000. I couldn't pay it. I was just shocked. So that 
was delayed three months until I came up with the cash in order 
to pay that to start my treatment. That was difficult.
    It was also really difficult to refinance my home. I'm 
thankful I had a home to refinance. Other people aren't that 
lucky. But to be that close to being debt-free, and having to 
start over, was very, very difficult for me.
    Chairman Cummings. Again, I have many, many more questions 
to ask, but I'm going to--my minutes are up. So we'll now yield 
to Mrs. Miller. Mrs. Miller?
    Mr. Jordan. Mr. Hice.
    Chairman Cummings. Oh, I'm sorry. Mr. Hice.
    Mr. Hice. Thank you, Mr. Chairman, and I want to thank each 
of you for being here, sharing your stories. They're heart-
wrenching and they're very real and very personal for you and 
for your loved ones. I'm grateful for you coming and sharing 
with us today. There's a difficult balance that somehow we have 
to strike in all of this, and you're bringing some suggestions 
to the table that I think need to be looked at.
    So all of this needs to be looked upon from a big 
perspective. You all are in a situation where the cost of 
medication for you and your loved ones is just astronomical. 
Others--and there's about five percent--fewer than five percent 
of Americans actually are having to pay the list price on 
drugs. And I don't know if any of you are having to pay the 
list price or you're getting help on that or not, but fewer 
than five percent actually pay the list price. I know a couple 
of you, Ms. Holt and Mr. Mitchell, you all spoke specifically 
of Revlimid, and, you know, I went back and looked at Celgene. 
I mean, that took over 14 years for them to develop that drug, 
$800 million to produce that drug, and from what I've been able 
to see, there's about 140,000 patients taking Celgene's 
hematology and oncology medicines, and they have been assisted 
through Celgene's patient support programs which has 
contributed over $1.4 billion back to patients who are involved 
in taking similar drugs. And they reinvest some 37 percent of 
the revenues back into research and development.
    So I think there's--somehow we've got to strike a balance 
here. There's no question as to the enormous cost to people 
like you, who are here today, and all of us in this room are 
grateful for the tremendous job that drug companies are doing 
to come up with drugs that help, where you're able to be with 
your grandchildren. But being able to get those drugs back to 
us in an affordable way is another issue that has to be 
addressed. Again, I'm grateful for you coming here, but 
pharmaceutical companies spend over $169 billion annually on 
research and development, and we are blessed to be in this 
country where those companies are putting that kind of money 
into research and development to help with situations like 
this.
    One thing, Ms. McLinn, that I was intrigued about with your 
situation, in reading about your story, is the right-to-try 
interest that you have worked with then Governor Pence. Can you 
tell us a little bit about your experience with that, fighting 
for the right to try?
    Ms. McLinn. Sure. When Jordan was five, we actually didn't 
have a clinical trial available to us. So I heard about a drug 
that was coming up through the pipeline, but based on the 
inclusion criteria, I didn't believe at that time that Jordan 
would be able to make it into the clinical trial. So I'm 
passionate about patients receiving access to treatments. I 
don't care what the pathway is. I'm just passionate about 
patients being able to access those treatments. So at the time 
Jordan didn't--we didn't think he would qualify for a trial.
    We started fighting for the right-to-try law, which says if 
a drug has made it through phase one and a patient wants to try 
it and you have a drug company and a doctor willing to make 
that happen, you should have a right to do that. So we did 
start in our home state of Indiana, when Mike Pence was our 
Governor at the time, it passed with unanimous bipartisan 
support across the Nation, really. Then we did start to work on 
Federal legislation, which was passed into law last May. The 
law does bear Jordan's name. Jordan's not receiving a treatment 
through the right-to-try pathway, though. He's receiving a 
treatment through a clinical trial, which is what we wanted to 
start with. But I am happy to tell you today about our friend 
Matt Bellina, who is a former Navy pilot, battling ALS, and he 
didn't make it into a clinical trial.
    But a few months ago, Jordan got to be there with Matt when 
Matt received his first treatment of an experimental treatment 
for ALS through the right-to-try pathway. So it's been really 
awesome to be on that journey and for Jordan to be a part of 
kind of seeing that come full circle and seeing someone that 
has been able to benefit. And, last week, Matt became the first 
person ever to receive a fourth treatment, and he's doing very 
well. So that's a little about our journey.
    Mr. Hice. Thank you. Thank you, Mr. Chairman.
    Chairman Cummings. Before we go to Ms. Norton, Mr. 
Mitchell, would you comment on--I want to hear, I want this 
hearing to be effective and efficient. Would you comment on 
this--what Mr. Hice just said? Because he makes a very good 
point, when he talks about research and development and the 
fact that there are programs to discount drugs.
    Mr. Mitchell. Well, a couple of things, Mr. Chairman. Thank 
you. First of all, approximately two-thirds of Americans pay 
some or all of the cost of their drugs based on list price. 
People in high deductible plans pay list price for their 
deductible period. People on Medicare pay their out-of-pockets 
and part D based on list price. People who don't have 
healthcare coverage pay based on list price. And Secretary Azar 
points out that's roughly two-thirds of all Americans paying in 
whole or in part based on list price. So that's the first thing 
I want to straighten out. That's a lot of money for a lot of 
people when prices are high.
    Second, I know that with respect, sir, that you just quoted 
Celgene lore about the development of Revlimid, but Revlimid is 
a drug that was invented--actually, thalidomide--Revlimid is a 
derivative of it--was invented in the 1950's and Celgene 
stumbled into it accidentally, based on clinical trials that 
were done in academia. That drug came to market in 2005, 
Revlimid did. There's still no generic for Revlimid, and the 
reason is that the company has been able to extend its monopoly 
by abusing the laws that are put in place.
    You know, I fully agree that when a drug company brings an 
innovative new drug to market, we want them to profit. Our 
whole system is based on that. Five years for small molecule, 
seven for orphan, 12 for a biologic, and make a lot of money. 
But at the end of that period, Congress has said we're supposed 
to let markets drive down price through competition, and 
Celgene has prevented that from happening. The result is, it 
was introduced in 2005 at $6,000. It costs $18,000 today. One 
capsule of Revlimid cost $720. This is an old drug. There is no 
excuse for this. And Celgene is not plowing all the money that 
they claim to plow back into R&D. They're milking an old drug, 
which is how they're keeping their stock price up. If we didn't 
let them do that, they would be forced to innovate to make 
money, which is what we want them to do.
    Chairman Cummings. Thank you very much. I just wanted you 
to clarify that. Thank you very much.
    Ms. Norton?
    Ms. Norton. Thank you very much, first, for this hearing, 
Mr. Chairman, but very much for the testimony we've heard 
today, and I appreciate Mr. Mitchell's elaboration. No one on 
this side wants anything less than a fair return for the 
extraordinary work that the drug companies do. We've had 
abundant evidence here of a great deal more than what anybody 
would regard as fair return. Of course, people go to Canada, 
and that's the most--there's every reason to believe that drug 
companies there want a fair return, too.
    I think you have made the best case--better case than we 
could have made--by describing your own experience. I'd like to 
ask Ms. Skipper a question because I was intrigued by the fact 
that both she and her sister had had diabetes. Is this Type 1 
diabetes?
    Ms. Skipper. Yes.
    Ms. Norton. This is very serious diabetes. You have this 
diabetes manifest itself when you were children?
    Ms. Skipper. Yes.
    Ms. Norton. Now, insulin is one of those drugs we'd want to 
look at to see whether there has been an increase over time. I 
don't know of improvements that have been made in insulin. Do 
you know of improvements that have been made in insulin? When 
you get insulin, are you told you're getting better insulin 
than, let's say, you would have gotten 10 years ago?
    Ms. Skipper. No, ma'am. It's been the same insulin.
    Ms. Norton. So the drug itself has not changed?
    Ms. Skipper. No.
    Ms. Norton. What about the prices?
    Ms. Skipper. The prices have gone up, I believe, like, over 
300 percent in the last 10 years.
    Ms. Norton. How has that affected, this increase in 
prices--you indicated you had been in college during part of 
this time. I believe I remember you said that if the drug was 
miscalculated by one unit----
    Ms. Skipper. Yes.
    Ms. Norton [continuing]. you could risk your life?
    Ms. Skipper. Yes.
    Ms. Norton. Did you ever ration the drug?
    Ms. Skipper. Yes. Yes. When I said that I had to eat less 
food, that--okay, so with insulin, there's like a little 
calculation, how many carbs you're going to eat. Then you have 
to figure, like, with your blood sugar and a correction factor, 
what's correct for your blood sugar. So I didn't have enough 
insulin, so I ate less food so that I could--I mean, I didn't 
have a choice but to take less insulin, because I wasn't 
getting a consistent supply. So I had to eat less food because 
I didn't have enough insulin to really, you know, take care of 
myself.
    Ms. Norton. So you were trying to make your insulin, what 
insulin you had, last longer?
    Ms. Skipper. Yes, ma'am. Yes. Now, how could you calculate? 
Did you have some scientific way, some measurement to calculate 
whether or not you were at risk when you decided to take less 
insulin or how much insulin to take less than was the 
calculated dose?
    Ms. Skipper. Well, so I don't have any pancreatic function, 
so if I do the math, like--do you mind if I give you an 
example?
    Ms. Norton. Yes.
    Ms. Skipper. So, if my sugar is 250, and my target is 150, 
I would have to subtract the 250 and the 150 and divide that by 
what is called a correction factor. So, for every I say, like, 
35 points over my target, I would have to take one unit, and 
then I would add that to--I'm on a scale of, for every seven 
grams of carbohydrates, I would take one unit. So that is how 
you calculate it. But if I don't have an actual monthly supply 
of that, I have to figure out how to make that stretch. So, by 
eating less food, I mean, I wasn't able to really affect--
correct for my blood sugar.
    Ms. Norton. Leaving this calculation to you sounds itself 
very risky, and I understand that your sister was 
hospitalized----
    Ms. Skipper. Yes.
    Ms. Norton [continuing]. and nearly died last year as a 
result of rationing insulin. How did that happen? Did she 
incorrectly calculate?
    Ms. Skipper. She took less. We were literally sharing the 
same vial of insulin. So we were both using the same vial of 
insulin. So she took less than what she was supposed to take to 
ensure that there was enough insulin left in the vial so that I 
could take my dose. But it was like a--she didn't realize that 
I had already taken my dose. So she took less so that I could 
be able to take my dose.
    Ms. Norton. All I can say, Mr. Chairman, is case made.
    Chairman Cummings. Thank you very much.
    Mrs. Miller?
    Mrs. Miller. Thank you, Chairman Cummings, and Ranking 
Member Jordan, and thank all of you all for being here today.
    Ms. McLinn, thank you for sharing your family's story and 
your experience. As a mother and a grandmother, it's really 
heart-wrenching to hear. I'm so glad that the innovation and 
research is helping Jordan and giving him and so many other 
people hope. In your testimony, you discussed the importance of 
not finding a one-size-fits-all solution when it comes to 
treating patients. Can you talk about what this means for your 
family?
    Ms. McLinn. Well, just for an example, Jordan has a rare 
disease that affects 1 in 5,000 boys. The drug that Jordan is 
trying right now is really only designed to help eight percent 
of patients. So Jordan has a rare disease, and then he's a rare 
subset of that. So we have lots of drugs right now coming up in 
the Duchenne pipeline, and not just for Duchenne, but for lots 
of rare diseases. So, even though Jordan's doing well and he 
has a treatment now, it's not a cure and--it's designed to slow 
the progression of his disease. I mean, he's 10. He's still 
young, but he's doing well, but we need more treatments to 
continue to be developed. We need treatments for Maurice's son 
Joseph, who I told you was 16 years old. We need treatments for 
all of our boys, and we need treatments that have yet to be 
discovered. So innovation is so important to us, and it's not a 
one-size-fits-all.
    Like I said in my testimony, these are heart-wrenching 
stories that these other witnesses are sharing. I want to be 
careful that we're not meshing the two together, because 
something has to be done about this, right? But we also have to 
protect innovation and make sure that companies are--that 
they're still going to work in this space. I need them in this 
space and so do so many other people.
    Mrs. Miller. I think you hit the nail on the head with your 
comments there, and we all do want to do something and I--it 
seems to me that you're buying time, and by the time your son 
is 16, you're hoping that it's been, you know, changed even 
more. Again, it's so heart wrenching.
    What suggestions would you have for Congress on how we can 
better encourage the innovation and reward it?
    Ms. McLinn. I honestly don't have a big, like, a-ha answer 
to that. I really just came here today to remind you as you're 
having these discussions, just remember to not make decisions, 
if you're changing policies, please do not make decisions that 
will impact the innovation and squelch that, because I think it 
is okay that companies are making a profit. How much? I don't 
know.
    I look at how much money--just in Jordan alone, we travel 
out of state. He's two and a half years in, and for first two 
years, we went out of state every single week, and we're just 
one, and he's one of 16 in this trial. This is a small trial. 
Some clinical trials are much bigger than this. I just look at 
how much money--and I can't--I mean, I don't know how much, but 
I know traveling's not expensive.
    I think of the doctors, the nurses, the surgeries. He's had 
two muscle biopsies where they've had to take a sample of his 
muscle before he started the trial and another up with 24 weeks 
later to see if he was producing more dystrophin, and I'm happy 
to tell you that all 16 boys are producing more dystrophin, 
which is incredible. When you think about the surgeon who did 
that, the nurses in the room, the scientists, the storage of 
those muscle biopsies, there's so much that goes in. There's a 
lot of expense that goes into clinical trials, and I just want 
to make sure we're not forgetting about this as we have these 
conversations.
    Mrs. Miller. I think your grasp is great, and we can all 
learn from this.
    One of the hardest parts of my job is trying to see the 
unintended consequences of whatever we legislate or whatever we 
make as a law or a rule because, five years down, one year 
down, we may be dealing with something we didn't intend to 
happen. So we're always trying to be so careful with what we 
do. Thank you very much for all of you for being here today.
    I yield back my time.
    Chairman Cummings. Thank you.
    Mr. Welch.
    Mr. Welch. Thank you.
    I want to thank you. You know, every once in a while, we 
get an opportunity do something useful in Congress, not often, 
but today's one of those days. I just want to give you my 
reaction because it's not for you to tell us what we should do 
to bring these prices down. You're the face of the harm caused 
by our failure not to bring the prices down, and each one of 
you has a separate story.
    I know you lost your husband at 40, raised those kids 
alone.
    You know, you and your sister are sharing your insulin.
    And what I love about listening to you is you're living 
your life. You know, you've got a real challenge. This is 
outrageous. You shouldn't have to be contending with 
unaffordable medications. That could happen to anybody who's 
sitting up here. It's just the luck of the draw. And when one 
is faced with that, there's not a fairness thing. You don't 
know why it happened. There's nothing you did to make it 
happen, but then you own it, and you have to make a decision 
and each one of you made the decision. You're going to live 
your life. You're going to fall in love and get married and 
live with the--yes, I mean, that's really life affirming.
    And what I find so inspiring about it is you're not angry. 
I mean, you're frustrated. You're worried, but I didn't hear 
anger. You're entitled to some anger at us because it's our job 
to make certain that these companies don't rip off the patent 
system, don't rip off the taxpayer, don't game the system. It's 
for us to figure out how they're doing that.
    And, you know, you've testified, Mr. Mitchell, many times. 
You're really, I think, as knowledgeable as anybody about all 
the ways in which the companies put the profits ahead of 
people.
    I think it's really, really helpful for you to be here, for 
us to hear you because we're starting to come together. We 
passed some--you know, Mr. Cummings, of course, has been a 
leader on trying to get the prices down for years, and it's 
starting to make a difference. You know, the Senate finally 
passed legislation yesterday that's going to put a significant 
dent in the rip-off. It could bring down the cost by about a 
hundred billion dollars.
    And, you know, what I get so frustrated about is the self-
righteous justification from a lot of the companies that are 
making a lot of money that, if we do anything to make the 
prices affordable, anything close to what is paid for all these 
medications in all the other countries except ours that it will 
end, quote, innovation. It may end hundred-million-dollar 
paydays, which I hope it does.
    But, you know, the bottom line is, we are all in this 
together, and we have to have--politics is about trying to find 
ways where the things that are common problems, we can come up 
with solutions that work for all of us. That's the job, and 
there's got to be a commitment that I know the chairman has and 
many of us, if you get medication, you've got to be able to 
afford it.
    And I just want to say on my behalf--and I bet I speak for 
everybody--thank you so much for deciding to just keep living 
your life each day, despite the challenge you face. My hope is 
that we will do our job to deserve your respect that you have 
earned yourselves. So I just want to say thank you.
    Mr. Mitchell, I got a little time left.
    Mr. Mitchell. I'm going to use your time if you'll allow 
me, Mr. Welch.
    Mr. Welch. I will, yes.
    Mr. Mitchell. I want to quote Secretary Azar, who said, you 
know, I have been a pharmaceutical CEO, and I'm aware of the 
old, tired talking points that, if we take $1 out of the 
profit, that the engine of innovation will grind to a halt in 
this country.
    I'm tired of those talking points and so is President 
Trump, and I just want to say, ``Amen.''
    Mr. Welch. Thank you.
    But thank you all very much.
    Mr. Chairman, thank you.
    Chairman Cummings. Mr. Jordan.
    Mr. Jordan. Thank you, Mr. Chairman.
    First of all, Ms. McLinn, you are living proof of something 
that I have long believed. We have all these lobbyists running 
around this town but no high-priced lobbyist will ever be the 
mom on a mission. We appreciate your passion and obviously your 
love for your son Jordan.
    You talked about your situation, and if you don't mind, how 
are you--do you have private insurance? How are you covering 
these tests and trials that Jordan's a part of?
    Ms. McLinn. The drug company pays for it.
    Mr. Jordan. Oh, really? Interesting.
    Ms. McLinn. And I think that's really important to know, 
that these clinical trials are expensive and the money doesn't 
always come from taxpayer money, and I know some does, and I 
know that NIH, you know, I know that there's funding for rare 
disease, but Jordan's trial is being paid for by his drug 
company. So all of those trips we make, all of the doctors, the 
nurses, the drug, I mean, all of it, they're paying for that.
    So that is why, believe me, none of us want high drug 
prices, and no one in this room, no one in this country, you 
know, thinks we want that, but I just don't want us to miss the 
point that sometimes there are reasons that drug prices are 
high, and I think in Jordan's case it's reasonable to expect 
that his drug is going to be expensive for that reason.
    Mr. Jordan. Yes.
    Dr. Mitchell or--excuse me--Mr. Mitchell, you mentioned in 
your opening statement three things you think need to happen. 
Can you walk us through those again? 'Cause I guess--and you, 
Mr. Hice mentioned earlier, you're--I think both you, Ms. 
McLinn, all of them talk about this balance we need. You want 
the innovation to happen because, I think as you said in your 
opening statement, without innovation, they're not gone to find 
what needs to be found for you to continue to live. So, 
innovation's critical. But price matters, too. And I think--I 
mean, that's where we're at. So let's figure out how we can 
keep both, and I think you had three points you made in your 
opening statement.
    Mr. Mitchell. I really appreciate you offering me the 
chance to repeat them, sir.
    We need to reform patent law. You know, the CREATES Act 
that you helped sponsor and helped advance in Congress is 
important. Pay-for-delay deals that don't allow generics and 
biosimilars to come to market timely. Citizen petitions, 90 
percent of which are filed with the FDA with drug companies and 
92 percent are kicked by the FDA that former Commissioner 
Gottlieb flagged as a problem. Patent picking that Senator 
Cornyn has tried to take on.
    This is to make the system that you all built work so that 
we can reward the innovation with the period of exclusivity and 
patent time and let them make a lot of money because you did 
innovation. You took a risk.
    Mr. Jordan. Exactly right. I mean, there's a reason patent 
protection's in the institution.
    Mr. Mitchell. That is correct.
    Mr. Jordan. We want that innovation. We want people to take 
risk, come up with great idea, innovative things and do it.
    Mr. Mitchell. Exactly. So we get to make the balanced, so 
that that time when you intend is over, competition and free 
markets can drive down the price.
    Mr. Jordan. Exactly right.
    Mr. Mitchell. That's our system the way it is today. So 
it's not working. That's one.
    Two, we fundamentally believe that the United States should 
do what every other country in the world does. It should 
bargain directly with the drug companies. We should strike the 
noninterference clause, and Medicare should negotiate drug 
prices. We think that negotiation is the essence of a 
capitalist system. You know, when you're in a situation where 
someone can come in and dictate a price to you, that's not free 
market. That's giving a monopoly and allowing the monopoly to 
be enforced at taxpayer expense.
    And then, third, we do think we have a problem down the 
supply chain. One of the problems with our system is that when 
list prices go up, everybody down the supply chain makes more 
money. So they all have an incentive to have list prices 
continue to go up. PBM is chief among them.
    We think that secret rebates are bad policy. We don't think 
they work for patients. As a patient, I can't know if the 
preferred drug on a formulary is there because it's the best 
drug or it's the least expensive among equally effective drugs 
or if it's there because the PBM got a big kickback from the 
drug company. This is happening, and so we would like to you 
address also transparency with PBMs.
    Those are our three big things. There are others.
    Mr. Jordan. I understand.
    Mr. Mitchell. Thank you.
    Mr. Jordan. Yes, and I appreciate that.
    The key to me is we have this amazing system where we do 
get innovation. We do get the greatest drugs developed, brought 
to market, researched, developed, brought to market right here 
in the United States. We can't stop. We have got to make sure 
that continues but happens in a ways that people can actually 
afford medicine that they need, treatment that they need, which 
is--so, thank you all for being here today.
    With that, Mr. Chairman, I yield back.
    Chairman Cummings. I thank you very much.
    Mr. Raskin.
    Mr. Raskin. Mr. Chairman, I thank you very much and I want 
to praise you for joining this extraordinary important hearing 
at the beginning of our recess, and I wish all the media which 
swarm over this Congress when we conduct oversight into 
governmental corruption and criminality were here today because 
this is a crime, too. This is corruption. This is a nationwide 
scandal.
    And I must say that this is the finest and most inspiring 
panel of witnesses that I've seen since I got to Congress, and 
I hope that every American takes the time to watch your 
testimony today or tonight or over the weekend and I wish I had 
an hour to question all of you.
    Mr. Mitchell, I have a special attachment to your testimony 
because it is so lucid and brilliant and clear and also because 
you're my constituent in Bethesda, Maryland, and you make the 
eighth district of Maryland proud. I wish I knew someone who 
had millions of Twitter and Snapchat followers all over America 
who would could retweet your testimony. Maybe I could prevail 
upon one of our distinguished freshman members of the committee 
to make you famous today, Mr. Mitchell.
    My friend from Ohio launched his remarks today with the 
now-obligatory attacks on socialists, but it's not socialists 
who are jacking up the prices to make prescription drugs 
unaffordable for millions of Americans, and it's not socialists 
who are stifling competition. It's the large pharmaceutical 
companies themselves. And this would be no surprise to my 
beloved Adam Smith who understood that the companies are in the 
business of profit not out of altruism, but out of self-
interest. That's what makes the market work, but if you allow 
those companies to get so big and so powerful that they take 
over the system, they will destroy competition and every 
significant free market economist has understood that. I think 
that's the burden of your testimony, Mr. Mitchell, that that's 
what's going on.
    If they can make profit by paying off generic competitors 
to stay out of the market, and thereby keep prices inflated, 
they'll do it. If they can make extra profit by obtaining new 
drug patents for old drugs that have long been on the market, 
they'll do that. If they can inflate their profits by lobbying 
Congress to keep us from engaging in the cardinal market 
activity of negotiating for lower prices, they will do that, 
too. And our job as Representatives in Congress is not to bow 
down to large corporations but to stand up to them for the 
public interest and for the people.
    Mr. Mitchell, in just two years, as a person dealing with 
an illness, a serious illness, you have built a community of 
more than 150,000 patients and families to fight for lower 
prescription drug prices, to fight for real competition, and to 
fight against monopoly pricing in medical services. Now you say 
that these high drug prices are not about innovation. That may 
have been the single most important thing you said.
    Explain why high drug prices are not about innovation.
    Mr. Mitchell. There is no correlation--and multiple 
academics have studied this--between the cost to develop a drug 
and the price at which it is set. It is set as high as the 
company can set it because of what you said: they're profit 
maximizers. As long as we let them do that, they will continue 
to do that. Why would they stop? It's their job to take care of 
their shareholders. And that's my concern - that that wrecks 
the balance between ensuring that we give a really good, rich 
return for excellent innovative new drugs and ensure that a 
price is set that is affordable.
    May I give you one example?
    Mr. Raskin. Yes, and then I have a followup with another 
question.
    Mr. Mitchell. I'm very concerned because NIH reports, 
Francis Collins, Director of NIH, reports there is an impending 
cure for sickle-cell coming out of NIH, and it turns out that 
NIH has invested $300 million in something called LentiGlobin 
BB305, and NIH reports it's spending a $100 million a year 
right now on sickle-cell cure.
    These gene therapies are coming to market between $500,000 
and $2,000,000. If we have a cure for sickle cell that comes 
out of NIH that will be for a 100,000 people in this country 
who have sickle-cell, it will cost us a hundred billion 
dollars; and there are 400 gene therapies in development. How 
are we going to pay for this?
    Mr. Raskin. Let me followup on that. I'm the proud 
Representative not only of you, Mr. Mitchell, but of the NIH 
which invests billions of dollars in scientific and medical 
research to fight the killer diseases that our population is 
struggling with.
    When they come up with breakthroughs, those scientific 
inventions and discoveries are used by these companies. So 
should the public investment in the research be also considered 
when we're deciding about the regulation of prescription drug 
prices?
    Chairman Cummings. The gentleman's time has expired.
    But you may briefly answer the question.
    Mr. Mitchell. Thank you, Mr. Chairman.
    Yes, we believe it should. We also think we should pay 
attention, when we talk about the drug companies financing 
clinical trials, that we have given them tax breaks for that. 
The Orphan Drug Act gives them for the trials that are done for 
Ms. McLinn's son a tax break under the Orphan Drug Act. So 
taxpayers are not only financing research through NIH but 
through various tax advantages that accrue to the companies for 
doing that research. And by the way, don't stop that. Keep it 
going. I need new drugs, or I'm going to die, and that's 
straight up a fact. So we want it, but we want the drugs to 
come forward at prices we can afford.
    Chairman Cummings. Thank you.
    Mr. Keller--Roy? Mr. Roy.
    Mr. Roy. I thank the chairman, and specifically I want to 
thank the chairman for continuing to have hearings on this 
topic and shining the spotlight on this issue. I concur with my 
colleagues who are saying that this is an inspiring hearing of 
sorts, listening to this great panel, and that this is 
something where hopefully we've got a bunch of bipartisan 
interests in trying to solve.
    Mr. Mitchell, I'm been particularly interested in what you 
had to say. I would agree with my colleague from Maryland that 
you've presented this in a particularly lucid way, a way that I 
think shares what I believe. I would also add the quote from 
Ms. McLinn: It's okay companies are making a profit. How much, 
I don't know.
    That pretty much sums up my general philosophy on this, 
right? I want innovation to continue. I want companies to make 
the maximum dollar they can make to encourage innovation within 
some sort of boundaries, recognizing that our patent system 
that's constitutionally prescribed is critical to the formation 
of these drugs.
    I was, as I was listening to your testimony, Ms. Holt, I 
spent a lot of time with people dealing with myeloma when I was 
at MD Anderson seven years ago with Hodgkin's lymphoma. In 
fact, I was trying to remember when it was, and I was sitting 
here, looking through my old email files and Gmail; I was 
looking through it and found July 28, 2011, which I guess would 
be, this coming Sunday, would be eight years. This is the email 
back and forth with my wife when I was at the doctor's office, 
thinking I had walking pneumonia, and I was starting to figure 
out I didn't, and so I now know that that was - July 28 was the 
date.
    Then found out a few days later, got the results it was 
non--or Hodgkin's lymphoma, and I said: Is that the good kind 
or the bad kind, like Hodgkin's or Non-Hodgkin's?
    The doctor said: Well, I guess it's the good kind.
    But going through that obviously sort of changes your 
perspective. I was on a trial, brentuximab, down at MD 
Anderson. I spent every two weeks from August through January 
2012, going down to MD Anderson in the trial clinic section 
there at MD Anderson and getting treated with this, and it was 
not FDA-approved at that point. It was FDA-approved for relapse 
patients. I was a, you know, new patient.
    And I'm very grateful that that drug was being brought to 
market, that a pharmaceutical company was making money doing 
it. Some of the research that went into developing that, of 
course, as Mr. Mitchell, you've said, came through NIH and 
other avenues of publicly funded research, including, I think, 
through the University of Texas and other avenues.
    So, for me, the questions that I'm trying to wrestle with 
and, you know, often, in Congress, we don't acknowledge what we 
don't know, when, in fact, we generally, there's a lot more 
that we don't know than that we know, but, you know, I don't 
know the answers to how much money that is coming through NIH 
and publicly funded research that then goes to a privately held 
corporation and what agreements then exist, then how much 
profit should be allowed. Right? Because I cringe when I think 
about, well, the government setting what profit is allowed, 
right? I believe the markets, and I want the markets to work. 
But as my colleague from Maryland was talking about, we don't 
always have a full market going on here in terms of competition 
because we've got all these issues.
    I don't mean to filibuster here because, like my colleague 
said, I'd like to sit here for an hour and have a give and take 
because I've been intrigued by what you all have had to say. 
I'm interested in a number of different pieces of legislation, 
including some of the ones that have been mentioned. I think, 
Ms. Krege, my fellow Texan, I think you mentioned some 
legislation, each of you have. And I'm looking at all of that.
    I'm cosponsoring Legislation 3199, the TERM Act, the 
Patients for Affordable Drugs Now, which I think, Mr. Mitchell, 
you are part of founding, is supportive of and trying to stop 
some of the games that patent companies play by dragging these 
things out and tweaking the formula and then moving it down the 
line.
    These are all things that I think we need to look at, you 
know, again, provided that, as, Ms. McLinn, I think you have 
rightly pointed out, and you, too Mr. Mitchell, I think all the 
panelists, that we preserve innovation, make sure that there 
are an abundant supply of drugs that are continuing to be 
developed so that we have these lifesaving cures and that we're 
able to then distribute that around the world, which these 
companies are structured to do for profit.
    But we've got a lot of work to do to try to make sure the 
patent system is not gamed, PBMs and middlemen aren't driving 
up prices unnecessarily, getting more transparency in the 
process, and I think the three points you outlined, Mr. 
Mitchell.
    So I just did what I hate to do, which is I think I used my 
five minutes without asking a question. I apologize for that. I 
looked down. I realize I've used the five minutes. I appreciate 
the questions you guys have answered and that you've spent the 
time here, taking the time out of your busy schedules to be 
here.
    And I thank the chair for having this hearing.
    Chairman Cummings. Thank you very much.
    Ms. Ocasio-Cortez.
    Ms. Ocasio-Cortez. Thank you, Mr. Chair. I appreciate you 
holding this hearing.
    I think just first and foremost to each and every one of 
you I just want to say first that I'm sorry. I'm sorry that you 
all are going through the things that you're going through. I 
know that--I understand and have experienced not all of what 
you all are experiencing but some of it.
    When I was 16 years old, my father was diagnosed with a 
rare form of lung cancer. He was in experimental trials in 
order to save his life. My family almost lost our home in order 
to try to keep him alive and just try to keep our family 
together. A lot of folks, you know, many people know that I was 
working in a restaurant when I got elected, but they don't know 
why and the reason why was because we lost my father to a rare 
form of lung cancer. We couldn't find treatment for him.
    And so the other thing that I want to say, too, is that 
none of this is your fault. So often we are made to feel guilty 
for the things that we cannot afford when there is no reason 
that our treatments should be this expensive in the first 
place. One of the things that I wanted to kind of get at is 
this idea that all these drugs should be as expensive as they 
are right now because I don't think that that is true.
    Ms. Skipper, you said that with your insurance, your 
insulin is a thousand dollars a month. Is that correct?
    Ms. Skipper. Yes.
    Ms. Ocasio-Cortez. When insulin was first developed, the 
patent was sold, do you understand--do you know the story?
    Ms. Skipper. Yes, for a dollar.
    Ms. Ocasio-Cortez. For a dollar, right?
    Ms. Skipper. Yes.
    Ms. Ocasio-Cortez. That's how much the patent for all 
insulin was sold for.
    Do you know the reason why it's a thousand dollars with 
insurance for you?
    Ms. Skipper. No.
    Ms. Ocasio-Cortez. Neither do I.
    Ms. Skipper. Yes, I have no idea.
    Ms. Ocasio-Cortez. And, frankly, I don't think 
corporations--well, I don't think corporations will give us a 
reason why.
    A lot has been made about how much money has been spent on 
research and development. Between 2006 and 2015, about $465 
billion was invested in research and development. And I think 
every dollar put into research and development of 
pharmaceuticals is a good dollar spent.
    But let me see. Mr. Mitchell, are you familiar with stock 
buybacks?
    Mr. Mitchell. I know what they are.
    Ms. Ocasio-Cortez. And what is a stock buyback?
    Mr. Mitchell. It's when a company decides to purchase 
shares of its stock in order to drive up its stock price.
    Ms. Ocasio-Cortez. So, between those roughly 10 years, $465 
billion was spent on research and development. The amount that 
pharmaceuticals spent on that same time to buy their own stock 
for the sole purpose of driving up the price was $516 billion. 
So they spent more than their entire budget on research and 
development on a tactic to drive up their own stock price. 
Stock buybacks used to be illegal in this country, and once 
they were made legal, they were made--they were allowed. And 
one of the things is that when a company buys their own stock, 
it drives up the price of their stock.
    And something that's not talked about is that CEO pay is 
tied to stock price. So CEOs right now are not incentivized to 
invest in research and development. They're incentivized to 
raise their stock price. So, you know, there's a lot of debate 
as to what can be structured, whether we can go single-payer, 
whether we maintain our insurance system the way that it is, 
how you make it more competitive, whether you don't, et cetera.
    But I think one very clear thing that we can see, Mr. 
Chair, is that if we eliminated stock buybacks, we could reduce 
the cost outlays of insurance company--of pharmaceutical 
companies by at least half when you compare just research and 
development and the stock buybacks alone.
    Again, I just want to thank each and every single one of 
you for sharing your stories today because there's no reason 
for a drug as simple as insulin, which costs $21 in Canada for 
a 10-millimeter bottle, to cost the equivalent of a mortgage 
payment or sometimes two mortgage payments.
    With that, I yield. Thank you.
    Chairman Cummings. Thank you very much.
    Mr. Meadows.
    Mr. Meadows. I thank you, Mr. Chairman.
    I thank each of you for your testimony today. My apologies 
for being a little bit late. Actually, I was at the White 
House, working on prescription drug prices. So I want to let 
you know that this is bringing a number of us together from 
opposite sides of the aisle. I've had a number of conversations 
with the chairman. We both have a passion to not just make this 
political but to make it real.
    And, Ms. Skipper, you should never have to ration yourself 
with insulin. You should also be able to have that affordable 
drug, as Ms. Ocasio-Cortez just mentioned, because that's a 
drug that's been around for a long time, and I can tell you 
that there was one regulation that was changed actually just a 
week ago that will start to help with that. There are more that 
are being proposed, but we need to work in a bipartisan way.
    I think have you a commitment, and I'm here to tell all 
five of you. You have a commitment for a bipartisan effort to 
really make sure that we do this. My good friend from Vermont, 
Mr. Welch, mentioned that they passed something out of Senator 
Grassley's committee yesterday. Now is that the perfect answer? 
I can tell you it's not. We have--but I can tell that you that 
Democrats, Republicans are looking at this very, very closely 
and help is on the way in the near future. I can tell that you 
I believe that we must the announce an initiative that 
hopefully will gain traction legislatively in the House and in 
the Senate and act on that I believe in September when we come 
back from recess.
    Mr. Mitchell, I want to hit on one area. You mentioned 
PBMs, the middleman that continues to in ways drive up prices. 
It has become part of our delivery system, and so, as we look 
at that, we created PBMs, and I don't know if you know that, 
but when HMOs around, we actually created PBMs, and yet we are 
seeing this artificial increase in retail prices that makes it 
very, very difficult.
    Would you agree with that?
    Mr. Mitchell. Yes, the headwaters of the problem is the 
list price is set by the drug companies, but we have a system 
downstream that supports diverse incentives, and as patients, 
we have a real problem with secret rebates because we don't 
think they are designed to serve us. We think they're designed 
to serve the people who make money on the system.
    Mr. Meadows. Right. All right.
    Ms. McLinn, thank you for sharing the fact that you're 
benefiting from a clinical trial aspect. One of the things that 
I believe would be helpful--and perhaps you can be a great 
advocate for this--is, as we look at clinical trials, the 
expense of getting groundbreaking drugs to market, there's a 
clinical 1, clinical 2, clinical 3 trial.
    And what I believe, just like we've done on a few drugs, 
HIV and a few other cancer drugs, is, once we do that clinical 
2 trial and we've shown that there is some safety, allow those 
to go ahead and come to market. Allow those so that, while 
we're doing that clinical 3 trial, and we know that the harms 
are limited, that we go ahead and allow those to come to 
market. It allows a whole lot of smaller companies who are 
innovative to bring them to market.
    Do you think that that would be helpful?
    Ms. McLinn. Yes.
    Mr. Meadows. All right. I was hopeful that was going to be 
your answer.
    The other aspect that we have to get to is, because of the 
way that we've structured prescription drug prices, not just 
for Medicare part D, but because of the PBMs--and it is a very 
integrated system in terms of delivery. So you've got retail 
price. You've got net price. You've got rebates. You've got--
but when we start to try to hit on one lever or the other, it 
has an opposite. It can have an opposite effect.
    For example, Ms. Skipper, if we were to actually work on 
one area and say that we're going to eliminate the PBMs, some 
companies actually take the rebates that they get from PBMs to 
lower insurance prices and so you--it is a very, very complex 
thing.
    So here is my commitment to you. I believe it's one that 
the chairman supports. I can tell you it's one that the 
administration supports because I just left. We're going to 
lower prescription drug prices, and we are going to do that 
without increasing insurance premiums to pay for. It is time 
that we act, and the time is now.
    I thank you all for being here, and I yield back.
    Chairman Cummings. I want to thank the gentleman, Mr. 
Meadows. Just to assure you, he's absolutely right. There's not 
a week that goes by that we are not trying to figure this out 
and trying to work with the White House to get it done from 
other angles.
    And I want to thank you for working with us.
    Now, Ms. Pressley.
    Ms. Pressley. Thank you, Mr. Chairman.
    And I'd like to say how much I appreciate your leadership, 
and it is a source of pride for all of us on the committee that 
the very first hearing that we had in this committee in this 
session was on reducing prescription drugs.
    I want to thank all of you for being here today.
    Ms. Skipper, let me say that you're 23 years old, and 
you're tired. We're tired, like you, that millions of families 
are suffering. It's not only those of you individually battling 
this but all the people who love you and support you in this 
journey and the fact that you have to weaponize your lived 
experience in order to be seen and heard. You think that's for 
listening, but I think that's too low a bar. It's high time we 
act and you are rationing life-saving medication, and it seems 
that for far too long we've been rationing our response and our 
compassion and our due diligence, and so it is critical that we 
act, and we act in a bipartisan fashion.
    You know, although insulin has not changed since the mid 
90's, its price has skyrocketed. And communities of color have 
been disproportionately impacted. According to the American 
Diabetic Association, Black and Latino Americans are more than 
70 percent more likely to be diagnosed with diabetes than White 
Americans, and one in three adults in this country will have 
diabetes by 2050. The price of insulin has nearly tripled from 
$3,200 to $6,000 over the last decade, an impossible price tag, 
especially for our young people and young adults.
    Ms. Skipper, could you just speak to how have you been 
obtaining insulin in the recent months and years?
    Ms. Skipper. Through donations, donations from people from 
my community, my church, and sharing with my sister. That's 
burdensome also because I feel like I'm taking away from people 
who could also be using this life-sustaining medicine, but it 
also makes me appreciate that there is some good in the world 
in the selflessness of some people. I can't tell you the last 
time that I filled a prescription for my insulin. So, it's 
just--it's been really hard to just kind of guesstimate how 
long my supply is going to last.
    Ms. Pressley. And you talked about, you know, getting a new 
job and one that includes employer-based healthcare coverage. 
Could you speak a little bit about that and what that coverage 
has meant and what the difference has been?
    Ms. Skipper. I mean, it's meant good if I want to go to the 
doctor for, like, a checkup, go get my teeth cleaned, get some 
new glasses, you know, go to the gynecologist, or anything like 
that. But for what I actually need to live, it's just - it is 
hard. It's just really hard, and I just don't understand. I 
just don't understand.
    Ms. Pressley. So just, I want to dig into that a little bit 
more because there are other associated costs which people 
often overlook in this. So if you could just expound to upon 
that a little bit.
    Ms. Skipper. Yes. So it's not just insulin. I need needles. 
I need test strips. I need, like, alcohol swabs, glucose 
tablets, extra food just in general. Then I also have celiac 
disease. So it's not like I can just eat anything, or, you 
know, so it's just very--it's been very costly to live, and I 
do feel sometimes like this is not--I didn't put this on 
myself. So why do I have to suffer? Why do we have to suffer?
    Ms. Pressley. And so there was actually a recent BuzzFeed 
article that was just speaking about the fact that many 20-
somethings who are no longer, if you're not carried on your 
parents' insurance, you know, the precarious position that that 
is putting so many young adults in, and it's particularly acute 
with regard to someone like you living with Type 1 diabetes.
    So I understand you and your sister haven't been able to 
use a parent's insurance in recent years but have faced similar 
struggles to those who have lost their parents' employer 
coverage at that age. Can you tell me what happened when your 
mother lost her job when you were children?
    Oh, yes, I'm sorry.
    Ms. Skipper. I'm sorry. Just things started to spiral out 
of control. I was really scared. A few months after she lost 
her job, I was suicidal because I just--I didn't want to 
continue to struggle. I didn't know how me and my sister were 
going to make it. I didn't know how my mom was even going to be 
able to provide for herself. So losing her coverage, it just 
put us in a really bad spot.
    Ms. Pressley. Well, thank you, Ms. Skipper.
    Thank all of you.
    And, you know, the fact that from hospitalizations to stock 
piling or buying insulin on the black market, too many 
Americans are cutting corners in their medical care simply to 
stay alive, and that is just unacceptable. Thank you.
    Chairman Cummings. Ms. Kelly.
    Ms. Kelly. That was hard to hear.
    Chairman Cummings. Ms. Tlaib.
    Ms. Tlaib. Seriously, Chairman?
    I'm the eldest of 14. I've been taking care of people all 
my life. So, when I have emotions, it's because I've seen 
challenges. This committee hits home so, so much. I just want 
to thank all of you so much for speaking up because I mean, I 
know I can speak to some of us here. There's a lack of urgency, 
right? There's lack of urgency. When the mother was talking 
about missing, you know, coming here because she had to be a 
voice for so many people that can't be in this room, I want to 
thank you for that because I know how hard it is. It's funny. 
Our kids are going to be fine sometimes. We're the ones 
actually feeling more guilt than they are. They're like: Mom, 
I'm doing great. I'm with my friends.
    But one of the things that I--this broken system and the 
frustration I have--and I had all these questions. I wanted to 
pull out these human stories. But I think you all have put a 
human face to something that for years I feel like hasn't truly 
been translated into the human impact until it got so broken 
down, so to the point where you have people rationing, that you 
have people actually dying right before your eyes because we've 
allowed corporate greed. We've allowed corporate greed to come 
before the people.
    We, the government in this Chamber, we're responsible to 
protect you from it. And I want to apologize. I want to 
apologize. I've only been here seven months, but not on my 
watch will I not be able to humanize the impact and push back 
against corporate greed, and I want you to know it's not just 
us. It's Congresswoman Kelly and all of us in this room, many 
of us now not in this room. But I want you to know, like, we 
really, truly, sincerely care about your life.
    A woman came up to me at a coffee hour and said: Rashida, I 
don't understand. They're saying that insulin is not preventive 
care.
    Of course, I dug deep. She goes: You don't understand. 
Insulin prevents death.
    I said: Absolutely.
    And she said her company, this is a big company, said that 
they decided to change the system so now that she had to 
literally, like, sit for a whole month before she can go pick 
up her son's insulin, $2,800 that she had to put together, 
$2,800.
    And I said: No, I can't wait for a bill to pass. I can't 
wait for people to wake up here. I'm going to put it on my 
letterhead.
    So, on my letterhead I said, ``What are you doing? You are 
a corporation,'' I took the mission statement of the 
corporation, put it in there, and said, ``But you're supposed 
to be about people, right? What about the,'' and without 
telling them who it was, I said, ``What are you doing? You're 
allowing people to die on your health insurance.''
    And she told me she went in last week to go pick up her 
son's insulin. She got together $2,800. I know where she lives. 
It was hard for her to raise that money. She went in and she 
said: I don't know what you did, but it's $244 now, right?
    That's still too much, my--but that means there's a will. 
They're waiting for us to tell them to stop, right? Moms know 
this. When there's bad behavior, we've subsidized. We've done 
the research and development. We've done everything we're 
supposed to do to say to them that you're supposed to be able 
to provide to the American people access to drugs that help 
them live. And I just want you to know, continue to be bold. 
Continue to ask for more. Even when folks say, ``We all 
agree,'' that's great, but actions speaks louder.
    So I only have--I want each of you to tell me in your own 
personal opinion, why do you think we haven't acted in 
Congress?
    We'll start with you.
    Mr. Mitchell. Drug companies are a monopoly, have monopoly 
pricing powers, and monopolies by definition have unlimited 
resources to defend their monopolies with political campaign 
contributions and lobbyists. There is 1.5 lobbyist for every 
one of you in the U.S. Congress, 1.5. That's like daunting 
odds, as my dad would have said. So I think it's both the fact 
that they use their monopoly pricing power to maintain their 
monopoly pricing power and to stop reform from happening.
    Ms. Krege. You know, I don't know the answer. But I think 
this hearing is, like you said, putting a human face to the 
issue. I think there's a lot of donations that happen. So maybe 
it gets pushed back to back of the shelf, but I can definitely 
tell sitting here today that you guys are going to do something 
about it. My disease is really treatable. It's not so treatable 
for these people. That's not okay.
    Ms. McLinn. The question ``why haven't you acted,'' I think 
it's an interesting question because I'm going to say I think 
Congress has acted. I think, because of Congress, my son is 
participating in a clinical trial that I believe is helping 
him. I believe that patients are accessing treatments sooner 
and I think that everyone in this room and everyone listening 
is acting right now, and I think that's what we need to focus 
on. I think let's not dwell on why we haven't solved this yet. 
Let's keep doing the next right thing and let's just figure it 
out and let's just do that.
    Thank you very much.
    Ms. Skipper. I would say, from a patient perspective, not 
really knowing the--you know, I don't know how, you know, how 
all of this works, but it seems like the people up top benefit 
from this and not acting. I don't know if it's in a financial 
way or whatever way, but it just seems like you get a piece of 
the pie some way, somehow.
    Thank you.
    Ms. Holt. And I'm just a retired teacher from Indiana. But, 
to me, it's money. I think it's money. It's the lobbyists. It's 
the pressure put on people to do things according to the money 
rather than the good. I also see a lot of bipartisan fighting 
that I think is inconsequential when it comes down to people's 
lives, that there needs to be more cooperation. I do think--I'm 
70 years old. I'm hopeful things will change before I die. I'm 
hopeful in meetings like this that things are finally 
happening.
    I started coming to Washington, DC, two years ago to help 
promote the CREATES bill. I'm frustrated that it's still not 
passed entirely, but I'm excited that it's making progress. So 
I'm learning how the government works and how slow it is. For 
me, that's frustrating, but I'm excited to see progress being 
made. Thanks.
    Chairman Cummings. Thank you very much.
    Ms. Kelly.
    Ms. Kelly. I'm ready. Thank you for having my back.
    I, too, want to thank all of you for being here. It's not 
easy to tell your story in front of Congress, cameras, and 
people in the audience. So I truly, truly appreciate all of you 
being here.
    Mr. Chairman, I appreciate you for having this, and I'm 
proud to serve on this committee, but I'm also proud to be a 
member of Energy and Commerce. So it makes me feel good to hear 
that you say, you know, we're moving along, and what we're 
doing is meaningful, and we are really working in a bipartisan 
way, which is good to hear, you know, because there's so many 
other ways that we're not but we definitely are in energy and 
commerce.
    When I came to Congress, which I've been here, I'm in my 
17th year, my district had the highest rate of foreclosures in 
the state of Illinois. Some of it, people lost their jobs. Some 
of it they went for a hokey-doke mortgage. But also some of it 
was because of medical reasons, and they couldn't afford to 
keep their homes. So I think we're on the rebound. Things are 
getting a little better in the other--for the other reasons but 
not for the medical reasons.
    I also am the chair of the Congressional Black Caucus 
Health Braintrust. And of the top 10 diseases that people die 
from, African Americans are No. 1 in 8 of them. So, Ms. 
Skipper, we work a lot with your issue.
    The other thing, in that capacity, I am responsible for two 
conferences a year. And one conference, someone shared that 
they have asthma and their asthma, the inhaler, is $325 in the 
United States, and she left her inhaler at home, and she was in 
South Africa, same exact inhaler, same exact company, 
everything, exactly the same and the inhaler was $25.
    So, in coming to Congress, I've gotten more aware of the 
issues that, you know, everyday people, my next-door neighbor, 
whomever, have to go through in this fight with lowering 
prescription drugs or having to choose, you know, between 
paying bills and buying your drugs or eating, you know. So I 
promise you I will continue to work really, really hard in this 
area on both of these committees.
    One question--and I don't know if you know the answer. My 
colleague, Ocasio-Cortez, always has a lot of stats. So you may 
have some of the answer, but the money that companies spend in 
advertising, you can't open a magazine without seeing pages and 
pages and pages. I didn't know if you would know.
    Mr. Mitchell. Six billion dollars a year, and we subsidize 
it. That's the unfortunate thing. We're the only other--there's 
only two countries in the world that allow direct-to-consumer 
advertising of pharmaceuticals, us and New Zealand. And we give 
a tax break to these companies to send those advertisements our 
way, and the only reason they do it is to make more money on 
encouraging people, perhaps, in some cases, to use drugs they 
don't necessarily need even.
    Ms. Kelly. Okay. And if there's--I mean, I'm one of the 
last people to ask you a question. Is there anything more you 
want to us know that you didn't already say? Anything?
    Mr. Mitchell. I do want to say, Ms. Kelly, I would love to 
come visit with you and talk about the sickle cell cure that 
NIH is bringing forward soon and how we're going to make sure 
that that drug, developed inside the walls of NIH, they're 
running clinical trials right now at NIH--they've spent at 
least a half a billion dollars--how we make sure that that drug 
comes to the market at a price that is affordable and 
accessible.
    Ms. Kelly. I have been meeting with people, and I'm in this 
building, 2416. So come and visit anytime.
    Mr. Mitchell. Thank you.
    Mr. Raskin. Would the gentlemen yield?
    Ms. Kelly. The gentlelady?
    Mr. Raskin. Yes, I meant you.
    I just wanted to followup on this question about 
advertising. I never thought of that before.
    Thank you, Mr. Mitchell, for telling us that it's only the 
U.S. and New Zealand which permit television advertising for 
prescription drugs.
    Are you suggesting that you think that should be banned or 
that the cost of those ads should not be tax deductible for the 
businesses as ordinary business expenses? Have you done work on 
this problem?
    Mr. Mitchell. The courts have ruled that the drug companies 
have a First Amendment right to advertise, but the National 
Academy of Sciences, Engineering, and Medicine came forward 
with a report 18 months ago and recommended that you eliminate 
the tax deduction for that advertising, and that will reduce it 
by a large amount, and that would be good. I don't know why 
we're subsidizing their advertising.
    Chairman Cummings. Thank you.
    Ms. Kelly. Thank you.
    Chairman Cummings. Thank you very much.
    Mr. DeSaulnier.
    Mr. DeSaulnier. Thank you, Mr. Chairman. Thank you for 
having this hearing.
    And to the ranking member, thank you for making it 
nonpartisan.
    I just want to followup a little bit on that earlier 
discussion. Having spent a good deal of time on this--and I 
would recommend to anybody--I like to recommend books--``Our 
Daily Meds.'' It's a book by a former New York Times reporter. 
I don't know if, Mr. Mitchell, you've read it, and it's called 
``How the Pharmaceutical Companies Transformed Themselves Into 
Slick Marketing Companies and Hooked the American Public.''
    So this is not some new phenomenon. If you read that book 
and do the research, we took pharmaceutical companies from 
being driven by research. The CEOs were usually researchers. 
They became the CEOs. And they got a reasonable rate of return 
on their investments. And then, for a variety of reasons, not 
just directly the pharmaceutical industry but more toward the 
finance industry, this book will tell you they did extensive 
focusing groups, 15, 20 years ago. They looked at professions 
and industries that Americans trusted, and it turned out that 
we trust people with white smocks. We trust doctors and 
pharmacists and researchers. So they went in and bought out 
controlling shares, and they turned them into marketing 
companies.
    So, to act like this is something that just happened, it's 
just become so bad that we've finally gotten attention. And it 
needs to be stopped. I know my colleagues have heard this 
before, but sometimes you repeat things lots of times in this 
building. I know this because I have a pill in my pocket that's 
sold by Johnson & Johnson, and it keeps me alive. I have a form 
of leukemia, and I'm thankful for this pill. It's five hundred 
bucks. I'll put it up here. It's the most expensive thing on me 
until 3 o'clock in the afternoon, and most of the research for 
that pill came from DARPA in the Department of Defense. If you 
learn the study of blood cancers, it started because of sailors 
and soldiers getting mustard gas during World War I. And we 
spent a lot of research trying to help sold years to be 
inoculated, and we found out about how our blood systems were 
covered.
    So this pill that costs $500 here in the United States of 
America--and I'm lucky enough that I signed onto a public 
option that was in the county that I was a county supervisor 
for years ago, and everybody told me: Don't do it. You'll have 
to get your medical service at the county hospital.
    And my kids and I went to the clinic, and we got great 
service. It's a classic option. The public option would work in 
this country and does work in some instances. They help so that 
I don't have the kind of costs that you have because that's my 
supplemental.
    That pill cost $400 a year ago, and then they changed the 
formula, and now it's $500. This pill in Australia costs $6.37 
with subsidies. Fully loaded, it costs $37. Where does the rest 
of that money go to? It doesn't go to research.
    So, Mr. Mitchell, a study published in the Oxford Journal 
of Law and the Biosciences found that just 22 percent of drugs 
receiving new patents between 2005 and 2015 were actually new 
drugs. The study concluded, quote, rather than creating new 
medicines, pharmaceutical companies are largely recycling and 
repurposing old ones. According to a GAO study, innovative 
products accounted for only 13 percent of FDA approvals each 
year from 2005 to 2016.
    So therein lies the problem. At another hearing, we had a 
pharmaceutical executive here, and I said: We want investment, 
but we want you to get a reasonable rate of return. It was 
supposed to be high risk, high return. You have now gamed the 
system so it's very low risk and high return. And in the 
meantime, people are going bankrupt. People are losing their 
lives.
    Ms. McLinn, I have a son. One of my two son's name is 
Jordan. So your story relates to me on multiple levels.
    This is outrageous. It's just outrageous. It's a crime. 
These people shouldn't be executives. They should be in prison, 
in my view.
    Mr. Mitchell, do have you any comments?
    Mr. Mitchell. When drug companies do what you just 
described, file old--or new patents on old drugs--78 percent--
I'll do it the other way--of all the patents filed on drugs are 
filed on existing drugs. If they are filing patents on existing 
drugs to extend their monopoly on those old drugs, they're not 
doing what they all say we want up here which is investing in 
innovation, investing in research and development, which will 
bring the cure for Ms. McLinn's boy, that may cure my cancer 
before I die.
    And so you guys really have got to stop this abuse that 
allows them to milk old drugs by gaming the system instead of 
doing what we need them to do, which is invest in innovation 
and new drug development. And we have to keep in mind that a 
lot of that is also subsidized by the American public, but you 
have to get them back, focused on developing new drugs instead 
of just milking profits from--developing new drugs instead of 
milking profits from old drugs.
    Mr. DeSaulnier. Thank you, Mr. Mitchell.
    I want to thank you all once again. Your testimony is 
really important. People need to hear our stories.
    Thank you, Mr. Chairman. I yield back.
    Chairman Cummings. Mr. Khanna.
    Mr. Khanna. Thank you, Mr. Chairman. Thank you for your 
leadership.
    Thank you to all of you for sharing your stories, for being 
so vulnerable, for sharing something that is so personal, and 
for your courage in doing that to help our country move 
forward. I appreciated Representative Tlaib's comments that 
you're here not just as an academic exercise, you want to see 
some action.
    One of the things that we've been talking about as a 
country for the longest time, but don't do anything, is 
Medicare for All. Medicare for All will finally give the 
government the ability to negotiate and lower these drug 
prices. And Lyndon Johnson, when he first passed Medicare, 
anticipated eventually we would have Medicare for All. And then 
25 years ago, Senator Moynihan had 25 hearings in the Senate 
Finance Committee on healthcare reform, all of these experts, 
and at the end of it, he says: Well, there's one solution. 
Let's extend Medicare.
    President Trump in 2000, in his book, said: Why don't we 
have a single-payer healthcare system? It's better than 
anything we have.
    Yes, we keep talking about this. We keep having folks like 
you come testify, and nothing gets done. So I want to ask each 
of you, starting with Mr. Mitchell, do you think Medicare for 
All would help?
    Mr. Mitchell. Mr. Khanna, Patients For Affordable Drugs 
only focuses on drug prices, and we want very much for people 
to have access to affordable, accessible care, but we don't 
have a position on Medicare for All, or any of the steps that 
you could take to ensure that people get access to 
comprehensive coverage. I apologize.
    Mr. Khanna. What's your personal opinion?
    Mr. Mitchell. I am not going to express one because I'm 
here on behalf of the organization. I stay in my lane and do 
drug prices.
    Mr. Khanna. I respect that.
    Ms. Krege?
    Ms. Krege. Sorry, but I think you asked a question a little 
bit over my head. I don't really have an opinion on that. I'm 
only telling my experience with my issue about a drug that 
costs $1,100 a month with insurance.
    Mr. Khanna. I respect that.
    Does anyone have any opinion on it? Ms. Skipper?
    Ms. Skipper. As I previously stated, like, I don't know, 
like, all the ins and out of everything, but I can say this. 
Being the face of Affordable Insulin NOW campaign, I go down by 
Instagram news feed, and I see people from other countries who 
are just completely outraged that I have to pay for insulin at 
all. So, if that is what Medicare for All leads to, then that 
is something that I definitely support. For someone with 
fibromyalgia or anything like that, doesn't have to pay 
hundreds and thousands for something that they need to live, 
then, yes, I would support that.
    Mr. Khanna. Ms. Holt?
    Ms. Holt. I may be the only one on this panel that is on 
Medicare right now. And Medicare for me involves Medicare plus 
a supplement, and even with that, my drug prices are sky high. 
So, if that does not change, then no, I'm not in favor of 
Medicare for All.
    Mr. Khanna. That's a very fair point, and part of that is 
because the Medicare hasn't been able to negotiate for drug 
prices, which some of us have wanted to do. Part of that is 
because we don't have generic competition. Let me ask a second 
question. The President came on the State of the Union, and he 
said: Americans should not be paying more for our drugs than 
people in Britain, in France, in Germany.
    Would folks here--and we can start with Mr. Mitchell and 
anyone else who wants to are answer--support the idea that if 
an American drug is priced higher than the drugs in these five 
leading countries--Germany, France, Britain, Japan--then 
Americans should pay the same price as people in other 
countries, or we should open it up to generic competition?
    Mr. Mitchell. Mr. Khanna, we strongly support direct 
Medicare price negotiations. Strike the noninterference clause, 
direct the Secretary to negotiate drug prices. There's 
absolutely no reason that we should be paying two to three 
times what other countries pay for the exact same drugs, in the 
exact same boxes. You can fix it, if we can pass direct 
Medicare price negotiation.
    Mr. Khanna. Anyone else want to weigh in?
    Ms. Skipper. I would agree with Mr. Mitchell, the founder 
of T1International actually moved from her home, from the 
United States to London, to be able to afford her insulin. And 
I know there are probably more like her who have had to leave 
the country in order to live, to afford to live. Thank you.
    Chairman Cummings. Thank you very much.
    Mrs. Maloney?
    Mrs. Maloney. Thank you, Mr. Chairman, for this really 
incredibly important hearing, and all of our panelists, for 
helping to build a case and putting really the misery that 
Americans are facing with these unaffordable drugs. I believe 
it's a national scandal that they are able to charge these 
prices without any accountability for how they're raising it, 
why they're raising it, and I want to mention four ways that 
Congress could act tomorrow to combat this, based on your 
testimony today.
    First of all, competition, the pay-to-delay, that 
competitors are literally paid not to come forward with a 
generic or other ways that they delay the process moving 
forward. I've heard from your testimony also the gaming of the 
system, where they say that they delay and delay when you 
should have a generic. They file patents for old drugs so that 
the time is longer. That's also hurting people. And what Mr. Ro 
Khanna just pointed out, the fact that they can be so much 
cheaper overseas is an absolute outrage, that we pay for the 
production, the research, and yet when it goes overseas, it's 
affordable, but not here in America.
    And I think your story really on insulin is so moving. This 
was discovered well over a hundred years ago. The scientist 
gave it to the American people. He didn't want people to make 
money off of his invention, and yet now it's unaffordable--or 
not even affordable in many places in America, to the point 
that Americans are dying. We need to change this and work to 
make it happen.
    And I want to followup with Ms. Krege on your story, where 
you talked about your inflammatory condition. Can you describe 
what it's like, what this condition is like, and what your drug 
that you received, that is now unaffordable, Humira, tell us 
what Humira does for you and what it's like if you don't have 
this drug that you cannot afford now?
    Ms. Krege. Oh, man, that's opening up a can of worms. Well, 
your epidermis is your largest organ. So, when I'm in a full 
psoriatic flare-up, I mean, the last one was two years ago, and 
it lasted 10 months. I was literally covered from head to toe 
in what some would call lesions. On top of that, all of my 
joints ache. I'm self-employed. I'm a hairstylist, and it 
affected my business. I had to wait six months to go through 
three appeal-ment processes, knowing that I would not be able 
to afford the drug once I got approved, and there's no generics 
available. This drug has been out since 2002. That's crazy. 
It's 80 percent cheaper overseas. The science is there.
    Mrs. Maloney. It's a scandal.
    Ms. Krege. Yes. A generic--the science is there.
    Mrs. Maloney. And in your testimony, you said--your written 
testimony, you're a successful hairdresser. You make a very 
good salary, better than most Americans. Yet the cost of your 
drug was more than your car payment, more than your business 
insurance, and more than what you spend for food in a month.
    Ms. Krege. Yes. The first few months, it went up 40 
percent.
    Mrs. Maloney. And not having it has totally impacted your 
health. Can you still work without the drug or do you----
    Ms. Krege. I can, because I've been in basically remission 
the last two years. I've had to wean off of Humira. I've had to 
go back on it. I've had to wean off of it. I'm currently on an 
old drug.
    Mrs. Maloney. And you also wrote that AbbVie has filed over 
250 patents, additional patents, on Humira, effectively 
delaying the generic drug and any competition for decades. Is 
that correct?
    Ms. Krege. Yes.
    Mrs. Maloney. See, that is manipulating the system to not 
allow Americans to afford it. We should stop that and ban that 
immediately.
    Ms. Krege. I'd like to say that those 247 patents, that was 
only last year.
    Mrs. Maloney. What's the total, do you know?
    Ms. Krege. Do you know?
    Mr. Mitchell. I believe they filed 247 patents, three short 
of what you estimated. So you're close enough.
    Mrs. Maloney. And now I understand that you also take 
Enbrel now, manufactured----
    Ms. Krege. No, I do not take Enbrel. I've been on Enbrel 
before, but the cost of that was just under $1,200 a month.
    Mrs. Maloney. Well, I just want to say that I am distressed 
beyond belief that they have manipulated the system to run the 
price up so that you can't afford the drugs that you need, and 
I am sorry that you've had to face this challenge for your 
health. And it is something that we as a Congress need to act 
on as soon as possible, and all of you have helped make the 
case, and I want to thank you.
    Chairman Cummings. Mr. Gomez?
    Mr. Gomez. Thank you, Mr. Chairman.
    This is an issue that unfortunately has been going on for 
decades, right? I was curious about price gouging when it came 
to insulin. I did a quick Google search one day, and I found a 
lawsuit from 1940, I believe, 1941, basically accusing the 
companies of price gouging. So this is not anything new. It's 
been going on for decades. The question is, what are we going 
to do about it? A lot of times it's difficult, but we got to 
keep pushing and coming up with some new ideas, and I think 
that there is more of a commitment than ever, but that doesn't 
mean it always translates to legislative victories.
    I was in the California legislature, and we did push 
through some reforms there. It was still difficult, but we got 
it done. But I always say that we need to continuously 
highlight people's stories to make a powerful impact. And 
that's why I'm glad all of you are here. I want people to 
really hear your stories and empathize.
    One of the things I always realize is that, you know, the 
impacts vary from person to person, but it's definitely 
something that people should be able to feel, even if they're 
not directly impacted.
    Ms. Skipper, you mentioned in your testimony that you and 
your sister shared insulin in order to manage your Type 1 
diabetes. How long did you and your sister share insulin?
    Ms. Skipper. We're still sharing.
    Mr. Gomez. Still sharing? Wow. When did you and your sister 
first decide to share insulin?
    Ms. Skipper. I don't--well, I don't think it was more or 
less a decision to do it. I think it was something that----
    Mr. Gomez. You were forced to do?
    Ms. Skipper [continuing]. we were forced to do. I don't--
how long would you say? Yes, about seven years.
    Mr. Gomez. What kind of impact does it have on your health 
to share insulin? I mean----
    Ms. Skipper. To sum it up, I don't know what a good day is. 
Like, I don't know what a day to feel okay, like, I don't know 
what that feels like. There hasn't been a day where I don't 
have--like, I don't have a high blood sugar reading. There 
hasn't been a day where I don't have, like, aches and pains. 
There hasn't been a day where I've been completely exhausted. 
So, yes, to explain it----
    Mr. Gomez. Yes.
    Ms. Skipper [continuing]. the best way I can, I don't know 
what a good day feels like.
    Mr. Gomez. Yes. So we do know that because you don't know 
what a good day feels like, because of your symptoms, that 
there is probably an underlying and chronic impact on your 
health?
    Ms. Skipper. Yes.
    Mr. Gomez. That will probably--you know, I'm not a doctor, 
but I'm assuming that it's not good in the long-term. We need 
to make sure you and your sister get the support and the 
insulin that you need.
    What were you feeling while your sister was in the 
hospital?
    Ms. Skipper. Angry. I was very angry. I was angry, and for 
some reason I had--I felt guilty. But I don't know why I felt 
guilty because I know that I don't control the price of this 
drug. I just didn't understand why I'm giving this corporation 
40 hours a week, and I can't afford to have what I need, and my 
sister has basically put her life on the line to ensure that 
I'm alive. So I was very angry. And, also, like I said, like 
guilt, and very shameful, because I just--very shameful, 
because we--it just was hard to see my sister fighting for her 
life. And it was just--I was ashamed that I couldn't get what I 
needed so that she did not have to be in that position.
    Mr. Gomez. I feel your anger. I think the American people 
should also feel your anger. You know, I grew up without health 
insurance. I've seen it. I know what it's like to see your 
parents worry about you, like, if you get sick, what does that 
mean, right? Are you going to get better? Can you get the 
access you need? We have positives in our healthcare system, 
but we have a lot of negatives that we got to work together. 
But I think sharing your story and making sure people know 
about it, especially with the T1International organization, to 
make sure that we share those stories. There's some folks here 
that have 4-or 5 million Twitter followers that can help 
amplify it, but I think--I don't have that many--but I think 
that at least adding our voice over and over could help make a 
difference. So I thank you all of you for being here and 
sharing your stories. It's important.
    Thank you so much, and I yield back, Mr. Chairman.
    Chairman Cummings. Thank you very much.
    Just one thing, Mr. Mitchell, Celgene has nearly tripled 
the price of Revlimid, the cancer drug that our witnesses--you 
and Ms. Holt are taking? Is that right?
    Mr. Mitchell. More than tripled.
    Chairman Cummings. Yes, okay. And that's since it was 
launched in 2005. A yearly supply of this drug can cost almost 
$250,000 per year. And Celgene sold about $10 billion worth of 
the drug in 2018 alone. What did Celgene do with all of the 
money? Well, first, it gave its CEO a pay raise. His 
compensation was worth $16.2 million in 2018. And $3 million 
more was added to that--and $3 million more than the previous 
year. Salaries, tell me about that, of these drug manufacturing 
CEOs, and do you think that plays a role in these price hikes?
    Mr. Mitchell. Yes. And I think that the issue that was 
raised about stock buybacks and a short-term focus of the drug 
companies, is one of the things not getting us what we want 
because they're running up prices in order to drive up their 
stock price in order to get higher bonuses, do more stock 
buybacks, and not enough focus is being paid on the innovation 
that we all--every one of us at this table wants. So you take 
an old drug like Revlimid, in one year, I think it was 2018, 
they ran up the price 19.8 percent, in one 12-month period. And 
one of the reasons they did it is because they have a failed 
Crohn's disease drug trial. They had to take a $700 million 
charge, so they increased the price of Revlimid to plug their 
hole, in order to prop up their stock price. These are the 
games these companies play.
    Chairman Cummings. Thank you very much.
    Mr. Jordan, do you have anything, because I'm getting ready 
to close out? I want to thank all of you for being here today. 
Before I conclude today's hearing, I would like to enter into 
the record two letters the committee has received in recent 
days--one from the Initiative For Medicines Access and 
Knowledge and one from the National Hispanic Medical 
Association. These letters discuss the acute impact the drug 
companies' actions and high prescription drug prices are having 
on patients and communities all across the country. I ask 
unanimous consent that these letters be entered into the 
record. So ordered.
    Let me, again, thank all of you for being here. It is not 
easy to, on national TV, by the way, to talk about your pain. 
And you're talking about some of the things that are so very, 
very personal. And a lot of times, you know, when people are 
suffering, it's almost like they're suffering alone. They feel 
like society, nobody knows what they're going through. I can 
tell you that there are a lot of people who feel the same way 
that you feel. They may not be going through what you're going 
through exactly, and that's why we in the Congress, we have to 
move. We don't have any choice.
    I saw something here today, and I'm so proud to be the 
chairman of this committee. I watched our members cry. I 
watched you all cry. And it's because there is a tremendous 
pain that comes with hearing your stories. And I think, for 
most of us, your pain is our pain. Your dreams are our dreams. 
Your hopes are our hopes. And I just wanted to encourage you to 
keep forging on, Ms. McLinn, Ms. Skipper, Ms. Holt, Ms. Krege, 
and Mr. Mitchell.
    You know, I heard you talk about, Mr. Mitchell, how there 
will come a day when your options run out--when your options 
run out. And I'm sure that you worry about going in to the 
doctor, and the doctor telling you, ``Sorry, your options have 
run out,'' but when there are options, when they are at our 
fingertips, but because of costs and greed, it's almost like 
you're reaching for the option and you just can't get there. 
And it would be one thing if it was just going to debilitate 
you for a minute, but when your life is going to end--as I 
often say, when you're dead, you're dead.
    And so it reminds me of when--in my district, Johns 
Hopkins, one of the greatest hospitals in the world, doing a 
lot of great things--as a matter of fact, the hospital that 
saved my life--but I know that there are a lot of people 
outside of that hospital who just want to get in the door. They 
know the cure and the treatment is there. They just can't get 
in the door.
    And so, to all of you, I want you to keep forging ahead. 
Keep in mind the words that I said and I want you to put them 
on the DNA of every cell of your brain: pain, passion, purpose.
    Ms. McLinn, let me tell you something, you being here 
today, all of you, you're giving other people hope. You really 
are.
    But we have a responsibility, too. We, up here, have a 
responsibility to make sure we give life to your hope--give 
life to your hope. And that little boy who's racing and I 
know--I just watch you as you talk about that hug and how 
precious that hug is, and what it means to you, and I assure 
you can hardly wait to get back to him, but when you come in 
here, Ms. McLinn and Ms. Skipper and all of you, and talk about 
what you are going through, but you're still forging on and 
that you're trying to help somebody else--by the way, keep in 
mind, it's not just you that you are seeking help for. And 
that's the thing I love about all of you. You said: You know, 
no matter what, I'm going to make life better for somebody 
else, too.
    And so we're going to do everything in our power to help 
you get to where you got to go because life is precious. It 
really is precious.
    And, Ms. Holt, as I listen to you, and you talked about 
sometimes feeling--or you gave the impression that at times you 
felt that your life was spiraling downward. That is not a good 
feeling. Not a good feeling when you've given so much in life 
over and over again. Taking care of--you're, what, a 
schoolteacher--and doing everything you were supposed to do. 
Everything you were supposed to do. And all you wanted to do 
was be able to hug your grandchildren, be able to go to the 
park sometimes, be able to--do you do texting? To be able to 
text them. You see, I'm a little--you and I are about the same 
age, so--I am challenged and don't mind admitting it. But the 
fact is those are basic things, just basic things. And so you 
want to be able to go down the aisle maybe with a daughter when 
she's getting married. You want to tell her how to wear her 
dress and what kind of shoes to wear. All that goes to the 
quality of life. And by the way, it's not just living; it's 
about living a quality life. A life of quality. And so, again, 
I thank all of you for being here.
    I want to tell you--and this may make you feel some hope--
we're going to have the drug company folks sitting in them same 
seats as soon as we come back. And we're going to try to 
understand some of why they're doing what they're doing. And I 
do believe that--by the way, as I close, the first conversation 
that I had with President Trump was something that he said, and 
I will never forget it. He said: The drug companies are getting 
away with murder.
    That's what he said: getting away with murder.
    And he's right. Because every time somebody cannot afford 
that medication, every time they have to share insulin and 
people have to share insulin and all the things that you've 
talked about, they are. And I'm not putting it all on the drug 
companies, but this is the United States of America. This is 
the greatest country out here, and we ought to be able to 
resolve these issues.
    I want to thank the members for being here, and I cannot 
end this hearing without saying this, because it's been really 
bothering me: You know, we get a lot of complaints. We get a 
lot of dialog about our freshmen Members. And I got to tell 
you, the freshmen Members on our committee--Ms. Ocasio-Cortez, 
Ms. Tlaib, Ms. Pressley, Mr. Rouda, Ms. Hill--are some of the 
hardest working Members of the Congress, and I told somebody 
the other day that, as I listen to them, I am inspired because 
I realize that I'm marching toward the twilight of my life, but 
to know that they are there, that they will take up this 
mantle, and they will carry this ball down the field and get 
over that line--excuse me, for a football metaphor; I am a 
football fan--that means something to me. It is important to 
me. And so thank you very much.
    And, with that, without objection, all members--did you 
want to say something else?
    Without objection, all members will have five legislative 
days within which to submit additional written questions for 
the witnesses to the chair, which will be forwarded to the 
witnesses for their response. I ask our witnesses to please 
respond as promptly as you are able to. This hearing is 
adjourned.
    [Whereupon, at 11:56 a.m., the committee was adjourned.]

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