[Congressional Record Volume 165, Number 115 (Wednesday, July 10, 2019)]
[Senate]
[Pages S4761-S4764]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]



                        Prescription Drug Costs

  Mr. BLUMENTHAL. Mr. President, I am here to talk about insulin. You 
may wonder why someone would talk about insulin, given all the weighty 
and pressing issues we have before us in this Chamber and even more so 
in the world today. I will not begin to recite them, but insulin for 
millions of people--in fact, 30 million people in the United States--is 
a matter of life and death.
  Many of us are fortunate because we never have to think about 
insulin. Our bodies make enough of it to keep us healthy, and we go 
about our lives without a second thought concerning blood glucose or 
how our pancreas is functioning, but for those 30 million people--and 
quite a few of them visited us this morning in our offices, and they 
were present in the Committee on Aging at our hearing--insulin is a 
constant worry. It is top of mind. It is always present as an issue for 
them, in fact, on a daily basis. Patients with diabetes need to 
carefully monitor and adjust their insulin levels along with managing 
their physical activities, their diet, stress, pain, sleep levels.
  Many of those young people who came to the Committee on Aging today--
by the way, I want to thank Senators Collins and Casey for holding that 
hearing and giving them an opportunity to come to the Nation's Capitol 
and make us more aware--were wearing monitoring devices, hidden but a 
constant concern. They depend on insulin as a matter of life and death. 
It is not a luxury for them. It is not like ice cream or ball games. It 
is life and death. They are fortunate, too, because they have access to 
insulin, unlike a lot of people around the world and unlike the whole 
world, including America, about 100 years ago when diabetes was, in 
fact, a death sentence, not in a matter of years ahead but right then 
and there. Diabetes was lethal.
  That changed when two researchers, Dr. Frederick Banting and Dr. 
Charles Best, succeeded in isolating insulin from an animal pancreas in 
1921. By the next year, they had collected enough to treat their first 
patient. He was a 14-year-old boy with diabetes, and he lived 
miraculously for another year. That was unheard of at the time. It was 
a tremendous breakthrough--an extra year of life because of their 
discovery.
  So Dr. Banting and Dr. Best filed a patent. They patented their 
discovery in 1923, and they stated their goal was not to make a lot of 
money, not to make profit but to make insulin available to the world, 
make it available to everyone who needed it, make it available to 
patients, regardless of their means and circumstance. Do you know what 
they did with that patent? They sold it for $1--just $1.
  Dr. Banting said: ``Insulin does not belong to me, it belongs to the 
world.''

[[Page S4762]]

  He was right. Insulin belongs to the world of people, whatever their 
ages, whatever their circumstances, whatever their means, wherever they 
live. Certainly, in the greatest country in the history of the world, 
where that patent, about 100 years ago, was sold for $1, shouldn't it 
be affordable and accessible to everyone?
  Well, this story has a really discouraging sequel, which is today in 
real time. The price of insulin has skyrocketed. When I say 
``skyrocketed,'' there are different numbers. It doubled, according to 
one authoritative site, between the years 2012 and 2016. There is 
another study that says it has risen 10 times in price over just the 
last several years. Beyond question, it has risen and not just by a 
little bit but by literally hundreds of dollars for the average 
American who has to afford it, day in and day out. Those yearly costs 
are forcing people to choose, literally, between putting food on the 
table and buying insulin, between paying mortgages and buying insulin, 
between the kinds of fun that ordinary young people would enjoy and 
buying insulin.
  I know we say this about choices made by Americans, but today in this 
very Capitol, just steps away, I listened to the parents of Logan and 
Emma talk to me, along with them, about the real-life consequences of 
these exploding insulin costs, and it broke my heart. Their experiences 
are truly heartbreaking and gut-wrenching.
  Logan is 12 years old, and he told me in the reception area right 
here about his diagnosis at 18 months. He talked about the advances in 
technology around diabetes treatment with extraordinary technological 
knowledge--impressive not just for someone our age but truly for 
somebody who is 12 years old. These advances are a tribute to American 
science, innovation, and ingenuity. They are groundbreaking, but at the 
end of the day, if his family cannot afford insulin, even the best, 
most groundbreaking technology means nothing. That is Logan's reality.
  His mom told me about sitting in a CVS parking lot and crying while 
she held a box of pasta because that was all she could afford--pasta 
for the rest of the week for dinner for that family. It was all she 
could afford after the insulin costs. For their family, Logan's insulin 
has cost as much as $750 a month. That is their deductible. That is 
what they pay even with insurance. So they have sacrificed not only in 
terms of what they eat but how they live. He was with Emma, and the two 
of them are extraordinary ambassadors for the Junior Diabetes Research 
Foundation, the JDRF, which does so much wondrous work for diabetes 
patients.
  Emma is 15 years old, and her father told me about a similar struggle 
to afford insulin. In fact, her own dad was diagnosed with type 1 
diabetes in his midthirties after Emma's diagnosis. He told me that 
``the price of insulin is illogical.''
  There is no reason why the cost keeps going up. In fact, Emma and 
Logan, both from Connecticut, have become world-wise--not world-weary 
but world-wise--about the American drug industry. They know those costs 
are rising without any reason in terms of the cost to the 
manufacturer. There are costs and prices rising for consumers without 
any justification in the real cost of producing the insulin they need.

  Last week, I held an event on insulin with other diabetes patients to 
discuss the skyrocketing costs. One of my constituents who spoke was a 
little bit older than Logan and Emma. Dr. Kathryn Nagel, a physician 
and resident at Yale University, was also diagnosed with diabetes when 
she was 18 months old. She is a resident now, training to become a 
pediatrician, among other specialties. As she put it to me, ``Banting 
would be ashamed of the state of things now.'' Dr. Banting said, 
``Insulin does not belong to me, it belongs to the world.'' He would be 
outraged and embarrassed by what is happening in America today.
  Mr. President, I ask unanimous consent that Kathryn Nagel's full 
remarks be printed in the Record.
  There being no objection, the material was ordered to be printed in 
the Record, as follows:

                                                    July 10, 2019.
       I was diagnosed with type 1 diabetes when I was 18 months 
     old. As you can imagine, this was terrifying for my family. 
     But we were lucky. We lived in America, where we had access 
     to the most advanced health care in the world. I was 
     immediately connected to a team of doctors who taught my 
     family everything we needed to know about managing this 
     disease. I had health insurance. Through my insurance, I 
     received insulin and all the other supplies I would need, and 
     my family was able to devote its attention to mastering the 
     regimen required to keep a type 1 diabetic alive.
       I was lucky.
       I didn't have to worry about where my insulin came from. I 
     didn't have to worry about having to scramble for a new 
     prescription because my insurance company had switched 
     allegiances to a different insulin company. I didn't have to 
     worry about how much it cost because of a high deductible, 
     copay, or god forbid, no insurance at all.
       This, unfortunately, is not the reality for many Americans 
     living with diabetes today.
       I had this access, not because it is a right granted to all 
     Americans, but because my dad was the employee of a 
     University. When I was in high school, my parents started to 
     impress upon me a vital truth: I must always be employed by 
     someone who would give me good health insurance.
       With the help of protections from the Affordable Care Act, 
     and the decision to pursue the path to medicine, I continued 
     to have good access to health insurance. The insulin pricing 
     crisis and healthcare chaos in our country poked through in 
     subtle, but never catastrophic ways for me.
       I saw it when I went to fill my prescription, and was told 
     that because of some back door deals my insurance company was 
     no longer covering the type of insulin I had used for the 
     past 20 years. If I wanted to take that type of insulin, I 
     would have to pay hundreds of dollars out of pocket for just 
     one vial. For reference, when I first started this insulin, 
     its list price was $26 a vial.
       I've seen this chaos even more in my practice as a doctor. 
     In medical school we are taught how to treat disease. We are 
     taught which medicines to use and when. In clinical training, 
     however, we learn that that is the easy part. The much harder 
     part, is figuring out how people can get access to the 
     treatments we know they need. We learn to fight with 
     insurance companies, we spend hours on the phone with 
     pharmacies making sure that our patients can actually get the 
     medications we prescribe.
       I want to impress upon you, how vital insulin is for a type 
     1 diabetic to stay alive. This is not something we should 
     take to stay healthy. It is something we must have, every 
     hour of our lives, to stay alive. It is akin to oxygen. For 
     me, it takes just hours without insulin before my body starts 
     developing ketones. Ketones produce an acid biproduct that is 
     toxic to the body, creating an environment where the other 
     organs can no longer function. Without sufficient insulin, it 
     does not take long before a diabetics heart goes into a fatal 
     arrhythmia, causing an entirely preventable death.
       This is what happened to Alec Smith. This is what happened 
     to Kevin Houdeshell. This is what has happened to too many 
     diabetics in this country, many of them quite young, because 
     they lose access to insulin. It happens to too many of them 
     at age 26, when they are left to fend for themselves for 
     health insurance. This should NEVER happen.
       I want to tell you about a childhood hero of mine, 
     Frederick Banting. Banting, with his team, discovered insulin 
     in 1921. It is because of Banting I am still alive. But 
     Banting did more than discover insulin. Knowing that it was 
     the difference between life and death, he did what he could 
     to ensure that no greedy company would ever deny people 
     access to insulin. He sold his patent to the University of 
     Toronto for $1 so that it would remain accessible to 
     everyone. He stated, ``Insulin belongs to the world, not to 
     me''.
       Banting would be ashamed of the state of things now.
       It turns out, it's not always such a lucky thing to live in 
     America. Today, 1 in 4 Americans with type 1 diabetes rations 
     insulin due to the cost. In the time since I was diagnosed, 
     the cost of insulin has increased over 1200%. These stats 
     don't even include the huge financial sacrifices people with 
     diabetes are making as copays, deductibles, and premiums rise 
     to meet the sky rocketing costs of insulin and other 
     medications. It does not capture the stress and gut-level 
     fear every one of us holds of not being able to access our 
     insulin or supplies.
       We cannot be fighting on a case by case basis for access to 
     what we need to stay alive. We must do better.
       Thank you Senator Blumenthal for giving us the 
     opportunities to share our stories. Thank you for fighting 
     for us, and working towards a better future for those of us 
     dependent on insulin to stay alive.
                                                Kathryn Nagel, MD.

  Mr. BLUMENTHAL. Mr. President, Kathryn Nagel--who will be an 
extraordinary physician because she has not only a great mind, but she 
also has a great heart--is absolutely right. Drug companies today have 
moved far from the outreaching motives of insulin's original discovery. 
Advancements in biotechnology have allowed manufacturers to make 
slightly more purified and precise versions of insulin, but it works 
the same as Dr. Banting's original insulin from the 1920s because that 
is what our body needs to do its work.

[[Page S4763]]

  Even incremental changes to an insulin product open up new patent 
opportunities for manufacturers and companies that have been taking 
advantage of these loopholes in our patent system for too long at the 
expense of patients and their families.
  Let me give one particularly egregious example. Sanofi manufactures 
the insulin product Lantus. Sanofi filed a total of 74 patents on 
Lantus, with 95 percent of those applications happening after Lantus 
was introduced to the market in the year 2000. That is a variation of 
insulin--almost 20 years old--protected by 74 patents way beyond the 
life of the original patent on a medicine discovered 100 years ago by a 
doctor who said, ``Insulin does not belong to me, it belongs to the 
world.'' Sanofi has constructed such an elaborate web and tangle of 
patents surrounding their product that they could have a competition-
free monopoly on their particular version of insulin for 37 years. They 
are exploiting it relentlessly and tirelessly and inexcusably.
  The effect of elaborate patent thickets like Sanofi's--constructed by 
companies--are felt by consumers in the form of higher drug prices. It 
is that simple. Create a monopoly without competition, and the prices 
can be raised without real limit. Lantus has increased in price 24 
percent from 2016 to 2018. In 2 years, there was a 24-percent increase 
unrelated to the cost of the product. In fact, the overall costs of 
insulin have doubled in recent years, with patients having paid an 
average of $2,864 for insulin in 2012 and $5,705 in 2016. That is the 
average out-of-pocket for insulin patient. That is the story I heard 
from Emma Del Vecchio of Orange and Logan Merwin of Haddam, as earlier 
today they shared their life-and-death struggle with the cost of 
insulin.
  One more story that has resonated with me over the past few days is 
from Kristin Whitney Daniels. She is from Shelton, CT.
  Mr. President, I ask unanimous consent to have the remarks of Kristen 
Whitney Daniel and Jonathan Chappell printed in the Record.
  There being no objection, the material was ordered to be printed in 
the Record, as follows:
                                                     July 1, 2019.
       Thank you, Senator Blumenthal.
       My name is Kristen Whitney Daniels and I am the chapter 
     leader for Connecticut's #insulin4all group, part of the TI 
     International organization. We are a patient-led advocacy 
     group committed to ensuring affordable and equitable access 
     to all diabetes related supplies, including insulin. Insulin 
     is critical for every diabetic--before it's discovery in 
     1922, type one diabetes was a death sentence. Today, 
     diabetics can thrive . . . if they have access to insulin.
       I was diagnosed with type one diabetes 13 years ago at the 
     age of 15. Being an advocate never crossed my mind when I was 
     diagnosed over a decade ago. Type one diabetes completely 
     took over my life after I was diagnosed. It was like learning 
     a new, complex language and continues to be a relentless 
     disease that requires constant vigilance. So why would I 
     devote any free time to a disease that has already taken so 
     much?
       Why? Because of Alex Smith and Kevin Houdeshell and Micah 
     Fischer and the countless others who lost their lives due to 
     a lack of affordable access to insulin. Because one in four 
     type one diabetics have had to ration insulin, playing a 
     deadly game to survive as pharmaceutical companies continue 
     to unabashedly raise their prices. Because I am the one in 
     four who have been forced to rationed their insulin.
       My story is a familiar one for the diabetes community. 
     While pursuing my dream internship, I turned 26 and lost my 
     health insurance. I purchased the only health insurance I 
     could afford--a high-deductible plan that cost more than my 
     monthly paycheck and whose monthly payments already consumed 
     15% of my income. But I had prepared for this time period. I 
     hoarded supplies and medications for months, resorting to 
     underutilizing my supplies. I hoped this would buy me time to 
     work off my deductible. It didn't; putting any money towards 
     that deductible was like chipping away at an iceberg with a 
     toothpick.
       By the time I reached the last of my insulin vials, I knew 
     things were becoming critical. There was no way I could meet 
     my deductible without forgoing housing and food. And at over 
     $250 a vial, my monthly supply of insulin far-exceeded even 
     my deductible. So, I did what seemed like my only choice: For 
     weeks, I ate significantly less, exercised more, and 
     dangerously started rationing my insulin by cutting my dose 
     and letting my blood sugars rise to unhealthy levels.
       Even as those last vials turned to the last few drops, I 
     refused to panic. Surely this is what all the patient 
     assistance programs were meant for. I called my doctor, my 
     pharmacy, my insurance company, the insulin manufacturer, 3 
     different prescription assistance programs and faced the same 
     answer every time: there was nothing they could do to help 
     because I had insurance. With every call I became 
     increasingly more desperate, finally resorting to begging and 
     pleading.
       Didn't they understand I would be dead in less than 48 
     hours if I didn't get my insulin? I wasn't just frustrated at 
     that moment; I wasn't just angry . . . I felt insignificant. 
     Like my survival, my life amounted to absolutely nothing.
       At the end of the day, none of those avenues helped me. 
     None of those programs pharmaceutical companies tout to the 
     media saved me from death. No, my help came from a last-ditch 
     visit to a government funded community health clinic. There, 
     my insulin was provided to me for $14--$2,386 less than at 
     the pharmacy.
       The insulin crisis is at a critical juncture in America. We 
     can no longer talk about hypotheticals--diabetics have been 
     and are continuing to die from a lack of affordable access to 
     a drug we need just as much as oxygen. I may not have set out 
     to be an advocate, but I refuse to sit idly by while 
     diabetics suffer at the hands of companies that continue to 
     make exorbitant money off our bodies. Our community will not 
     stop until every diabetic has equal access to insulin. And we 
     will not be silenced when parents, friends, and family 
     continue to bury their loved ones.
       Thank you, Senator Blumenthal for sponsoring this bill. 
     This is one bill, of hopefully many, where America chooses to 
     stand with those who have suffered greatly at the hands of 
     pharmaceutical companies.
                                          Kristen Whitney Daniels,
     CT#insulin4all Chapter Leader.
                                  ____

       Hi, my name is Johnathan Chappell and I'm an attorney at 
     the law firm Feldman, Perlstein, and Greene in Farmington, 
     Connecticut.
       As far as background goes, I was diagnosed as Type I 
     diabetic in 1999 and started used Humalog insulin in 2001. 
     Just to see what we're talking about, this is one vial of 
     insulin, for those who do not know. For me, it's about ten 
     days of life.
       It being July 1st, we're getting close to the Fourth of 
     July--the country's birthday, if you will. I'll show you 
     this, which is three vials of insulin in a box, with a rubber 
     rand around them, that says ``One of three, two of three, 
     three of three.'' So that's about a month of life, for me 
     anyway.
       I filled my prescription--I think, smartly--on June 15th. 
     The key date in my life is July 1st. That's the reset date of 
     my high-deductible plan. So this amount of insulin, again, 
     this being a vial (There are three of them in these boxes. I 
     trust you will trust me)--if I got this today, it would be 
     $1,008. I got it on June 15th for a $25 co-pay. There are a 
     lot of words that I could choose, but ``insane'' seems to be 
     pretty fitting if you ask me.
       And we're here to talk about insulin, but the cost of 
     equipment to put that insulin into my body is also not cheap.
       The good news is that I get a lot of gas points at the 
     pharmacy. The bad news is I have to figure out how to feed my 
     family, which includes my wife and three children, and 
     continue to do so. And that, even for me, is quite a task at 
     times.
       So what do I do? I try to stockpile as much insulin as I 
     can grab, while my deductible has been exhausted. Like a 
     squirrel before hibernating, I tried to get as much of this 
     as I could before today. So I have about a month or two while 
     I'm okay, or very good. But this is unacceptable. This is not 
     the point of healthcare reform. It has not been addressed, in 
     my opinion.
       I thank Senator Blumenthal. With my years of involvement 
     with JDRF I've met him and his wonderful office members a 
     number of times. I'm a past president of the JDRF and 
     obviously I can tell you that I'm not the only Type I in 
     Connecticut who is worried about this. I'm fortunate that 
     they still asked me to come and tell my story.
       So, again, this was $25 and, if I went back today, or in 
     two weeks, it would be $1,008. And it would probably be more 
     expensive, to tell you the truth, because the price of 
     insulin just keeps going up. The minute you drive your car 
     off the lot, it depreciates but, for some reason, insulin has 
     appreciated every day for the past twenty years I've been 
     using it. In November, it will be twenty years with Type I 
     diabetes--pretty tightly controlled, but to do that is not 
     cheap.
       So again, if Senator Blumenthal's bill is right near a 
     vote, let's get it voted on and let's do what we can to get 
     this issue solved. Short-term, mid-term and forever. I thank 
     Senator Blumenthal and everybody out there for the support.

  Mr. BLUMENTHAL. Mr. President, Kristen is the chapter leader of 
Connecticut #insulin4all and attended the event I mentioned. She was 
inspired to become an advocate for affordable and equitable access to 
insulin after facing tough barriers in her own medical treatment. She 
was forced to become one of the one in four patients with diabetes in 
the United States who has resorted to insulin-rationing in the face of 
high drug costs.
  Let's be clear about insulin-rationing. It means reducing the 
dosage--rationing the consumption--to lower the cost. When we talk 
about folks who have to cut pills in half or seniors who take a pill 
every other day instead of every day, that is rationing. That is

[[Page S4764]]

what Kristen had to do in the face of these rising drug prices.
  In order to pursue her dream internship, Kristen had to purchase the 
only health insurance she could afford, which was a high-deductible 
plan whose monthly payments consumed 15 percent of her income. To try 
to prepare for the realities of this kind of coverage, she had to hoard 
her insulin and other diabetes supplies for months in advance, 
deliberately starving her body of the medicine she needed in order to 
keep her head above water financially.
  I have submitted bipartisan legislation that was recently approved 
unanimously by the Judiciary Committee, along with my colleague Senator 
Cornyn, that would end these abusive practices surrounding patents--
patent-thicketing and product-hopping. You don't need to know the 
details of those abuses or of our legislation to understand the need 
for protection and the need for security and safeguards for these kinds 
of patients--the 30 million who suffer from diabetes and who are paying 
exploding costs for insulin that are rising exponentially and 
astronomically for not only insulin but also many other drugs, as we 
know from listening to our constituents.
  All of our colleagues understand the high cost of prescription drugs 
that continue to plague America across all walks of life. Every day, 
patients are forced to choose, in fact, between paying for the 
medicines they need and the needs of their families. Drugs to treat 
everything from depression, to arthritis, to cancer, and even basic 
saline solution for IVs have increased in price in recent months. They 
are not new, wondrous, magic discoveries; they are workhorse medicines. 
Insulin has been around for 100 years. Many of these other drugs have 
been around for decades as well. We owe it to Americans.
  As citizens and as patients ourselves, we know that these rising 
prescription prices are ruining families, tearing apart communities, 
and destroying the basic trust we have in our healthcare system. 
Nothing is more basic. Healthcare is a right. Prescription drugs should 
not be available just to the wealthy.
  The bill Senator Cornyn and I are hoping this Chamber will pass is 
just one step toward making prescription drug prices more affordable; 
making these cures that are America's pride--developed by great 
researchers and wonderful minds--available to all of our citizens.
  Logan Merwin, Emma Del Vecchio, and all of the children in America 
who suffer from diabetes understand something maybe we don't as well: 
that insulin is a matter of life and death and that they are alive 
because they live in the greatest country in the history of the world, 
where insulin is available to them even at times when it is difficult 
for their families to afford. They know, too, that with the great 
advocacy of Kathryn Nagel, Kristin Whitney Daniels, Jonathan Chappell, 
and others who are taking their cause to America, as well as the JDRF, 
which is supporting wonderful discoveries, we will be a better country. 
We will make these prescription drugs affordable.
  Insulin will be available to all. Insulin does not belong to me or to 
you; it belongs to the world. And I hope America will be an example of 
making insulin belong to the world.
  I yield the floor.
  I suggest the absence of a quorum.
  The PRESIDING OFFICER. The clerk will call the roll.
  The bill clerk proceeded to call the roll.
  Mr. McCONNELL. Mr. President, I ask unanimous consent that the order 
for the quorum call be rescinded.
  The PRESIDING OFFICER. Without objection, it is so ordered.