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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 all together. Imagine having to pick between having a roof over your head or protecting your childs 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 every day 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 lifesaving 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 responsibility 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 they to pay for delay agreements with competitors, to extend monopolies so they can keep increasing their prices, and even when theres supposed to be competition, socalled 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 pharmaceutical the pharmaceutical industry to develop cutting edge their piece and break through 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 industrys 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 are increasing their prices dramatically and how they are 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 industrys 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 that this hearing will be another step in that direction. Now i yield to the distinguished Ranking Member of our committee, mr. Jordan. Thank you, mr. Chairman. The cost of Prescription Drugs is way too high. Chairman knows that i know it, our constituents know it and 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 these high drug prices represent a failure of markets, a failure of capitalism, feel that markets dont work and the result is companies exploiting patients to line their pockets. They have ex braced socialism as an answer to this problem. The real sit is they have the situation backwards. Its not the failure of the fair market, the failure strems from governments intervention in the farm suitful and healthcare markets. Laws and regulations at the government is put in place have led to the abuse of the patent system and the lengthy approval process at the fda. These the loopholes delay needed generic competition. These challenges are tough, require us to roll up our sleeves and do the tough Work Together to figure out how to make the dem work better. We have made some progress administratively and legislatively. Under the Trump Administration the fda hatsds been approving jej arks at a record rate. In october 2018 the fda approved 110 generic drugs and approved 18 more including 23 first jen aches 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. 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. It provides new treatment opportunities for patients who exhausted all other existing options. We also have 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 cosponsored. The creates act would ensure generics get timely access to lifesaving drugs to they can be available for more people more quickly. Im hopeful the bill will be put on the house floor in short order. 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 pushed a partisan bill through congress with no republican collaboration. It would be wrong to salvage the obama administrations 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 its 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, but that process cannot be distorted by government interventions that result in inflated prices. We must work to find ways to preserve americas 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, 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 a privilege of chairing last congress. Im especially grateful for laura mcclen joining the pam as well, her son jordan has duchenne muscular dystrophy. Thanks to innovation by companies in the United States jordan is not just walking but running and living a complete life. And he would be here himself today i understand but he is at summer camp which is probably where needs need to be in the summertime. I also want to thank our other witnesses for being with us today. Martin luther king, i thank you for holding this hearing and i yield back. 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 a under for of patients for Affordable Drugs from my state, bethesda, maryland. Welcome. Ms. Ashley kreg, a patient from houston, texas. Miss laura mclinn the mother of a patient from indianapolis, indiana. Miss sara skipper, a patient from indianapolis, indiana. And pam holt, a patient from grainger, indiana. Before i swear you in let me just explain to you that we dont have as many witness as many members here today because we were expecting to be in session today and were not, which means that members 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 would 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 and 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. Without objection, your written statement will be made a part of the record. With that, mr. Mitchell, you are now recognized for five minutes. Thank you, chairman cummings, Ranking Member jordan, thank you, and to my congressman, mr. Raskin, thank you for being here. Im honored to be here. Im 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. Ive relapsed twice and unfortunately im failing on this current drug regime. Eventually im going to run out of options. So the importance of innovation is not theoretical for me, its literally life and death, but my experience as a patient taught me one one irrefutable fact and that is drugs dont work if people cant afford them. When i learned i was sick my doctors put me on a drug, pam holt will talk about her experience with it, but for medicare patients in general outofpocket costs for it can are unto 15,000 a year. The principle reason its so expensive is because its maker has gained the system and refused to sell samples to Generic Companies who want to bring a competitor to market. They arent alone in making high prices for drugs. Take johnson and johnson, i take one of its called that the Monthly Price is 36,000. It has increased almost 20 in just a little over three years. Or pfizer, there is a patient o has fibromyalgia and neuropathic pain. Meg was prescribed lyrica, when she found out it would cost her 550 soind outofpocket each month she decided to take a third of the dose her doctor recommends for her. To address the problem of out of control prices we have to come to grips with larger facts. Despite what Drug Companies tell us sky high price right side not about innovation. Multiple studies show there is no correlation between the cost of r d and the price of a drug. And taxpayers foot a huge portion of the 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 the 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 of ten Drug Companies spend more on advertising an 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 its 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 parents. One, reform patent law, two, end the days of monopoly Pricing Power without taxpayer negotiations and force transparency from drug middle men. Lets start with patent law. Brand Drug Companies are abusing our system to extend their government granted monopolies and block competition. They use tactics, mr. Jordan mentioned rems abuses, 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 isnt 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 is 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. Finally we need more transparency around pbms. These Huge Companies cut deals that determine how much patients pay but its all secret. Competition, free markets cant work without transparency. Right now there is a fundamental question Drug Companies want us to ask about drug prices, what are we willing to pay to save a life . And while thats easy, when its your childs ability to live, to breathe, when its your wifes diabetes, when its your own cancer, the answer is anything, but thats 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 . Can literally hundreds of Clinical Trials under way for new gene their piece that are currently priced at a half a Million Dollars or more, we cant pay just any price the Drug Companies demand. Neither American Families nor our 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. Thank you very much. Ms. Kreg. Chair cummings, Ranking Member jordan, members of the committee, thank you for having me here today to share my story. My name is ashley kreg, im 35 years old and i live in houston, texas. Im one of the thousands of americans who took the worlds 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 costs 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 drug maker had raised the price and my new Monthly Payment was going to be almost 1100 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 couldnt afford the 40 price increase. Let me tell you a little bit about humira. The drug is far from new, its been on the market since 2002 and the price has gone up nearly 400 . At 5,174 a month. They are making billions on the backs of patients. 20 billion alone in global sales last year. That is more revenue than every nfl team combined. They have done everything in their power to block competition and keep cheaper generics offer the u. S. Market. They have struck deals with more than a Dozen Companies that tried to develop biosimilars, theyve filed 247 Patent Applications in order to delay competition in the u. S. , but while avi was hiking they were prices, blocking competition, bio similar came to the market in europe. As a result, they began selling humira for 80 less overseas. Thats not the end of my story. Had a similar experience on enbrill, another drug investigat investigated. My symptoms came back. To give you an idea of what a full body sorry attic flareup feels like, imagine getting a terrible sunburn, the kind that makes your entire body feverish, add falling into a bed of fire ants. Thats what it feels like during a flare without medication. Thats why i am here today. Because there are two bills in the house of representatives that would help patients like myself. Hr 1499 and hr 2296 have both passed the energy and commerce committee. The first bill would stop branding companies from paying off Generic Companies that plan to bring a competitor to market. In exchange for the payment, the generic manufacturer often delays products entry into the market, patients like me are stuck facing bills of 1100 a month for humira. The second bill called the fair drug pricing act would increase transparency, require justification for price hikes like the one they enjoy taking on the backs of patients like me. These bills are just a start. They would not solve all the problems in the drug Pricing System or end the ways 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 pharmas most egregious practices. I hope todays hearing isnt the last stop. Thank you for your time. Thank you very much. Chairman cummings, Ranking Member jordan, members of the committee, it is an honor to be here today. Thank you very much. My name is laura mclynn. Most people know me as jordan mclynns mom. I come here today simply as that. Jordans 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 hes also in a race with the clock for his life because just before his fourth birthday, a doctor said he has a rare and fatal muscle wasting disease. According to the Natural History of the disease, jordan has already lived about half his life at just ten years old. Dnd effects one in every 5,000 boys, over a short time, robs them of the ability to do things 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 effected which leads to a very young and devastating life expectancy. Because of innovation and laws that congress has passed over the years, i am here today to tell you that my jordan now has hope. He is the epitome of hope. Hes defying the Natural History of this disease and is a direct participant in helping create hope for others. About twoandahalf 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 duchenes. He made weekly trips out of state during infusions without a single complaint ever. During this time we noticed jordan is doing things we were told a tenyearold with duchenes couldnt do. He is walking quite well, playing outside for hours, he is climbing stairs in a normal way, while most kids at this age cant climb the stairs at all, cant do it very easily. He is dancing, running, jumping into pools, catching balls. Keep in mind, duchenes progressively robs boys of these things. Last week a Research Team showed me mri images of some of jordans muscles, and told me they didnt look like images of a person with duchenes muscular dystrophy. When he was first diagnosed, there was no Clinical Trial to 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 the innovation slow or stop. I desperately need these scientist doctors and Drug Companies to continue to develop drugs for my son and millions of others with devastating diseases, and for that reason i am here today to remind you that we must continue to encourage and reward innovation. Because of bipartisan work that many of you have been part of over the years, Fast Track Designation accelerated approval pathway, innovative trial designs. I expect jordans drug will be approved soon. When it happens, it will be expensive, as are most drugs for rare diseases. These arent old drugs around for years though. Lets be careful in the conversations about drug pricing, not to mesh the two. Innovation is expensive, and it is also the only thing thats going to help ensure boys like my jordan can be part of the first generation to change the Natural History of the devastating disease. If we lose innovation, we lose the most valuable thing we cant put a price tag on, human lives. We cannot afford to let that happen. As we work to tackle issues of access and afford ability of treatments and cures yet to be discovered for boys like my friends son joseph who is 16 and waiting because he doesnt have anything yet, i implore you to do so carefully and remember that one size does not fit all. We cant afford to discourage those discoverys and development of new therapies. If we had that 20 years ago, jordan wouldnt be benefitting today from the treatments. Back home in indiana today, parents are gathering to pick up kids from nba camp and hearing all about their kids adventures. And i will be there for jordan, instead i came here to share the critical importance of driving for the promise of new and better treatments for all of those who wait. I cant wait to get home to hug him tonight, hopefully i will never have to stop receiving those hugs. Because jordan cant be here today to speak for himself, i want to leave you with a favorite quote of his, his life verse from jeremiah 29 11. For i know the plans i have for you declares the lord. Plans to prosper you, not to harm you, planls 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 caring about helping patients access these treatments which is very important. Keeping in mind, though, please, one size does not fit all. I hope you ask questions and i hope each of you reach out personally to continue the important dialogue. Lets Work Together, keep doing the next right thing. Thank you very much. Thank you very much. Poli miss skipper. Good morning, chairman cummings, Ranking Member jordan, members of the House Committee on oversight and government reform. My name is sarah skipper. Member of affordable insulin now and t 1 international. Thank you so much for inviting me to come speak with you today, for taking time to listen to some of the ways pharmaceutical companies are putting corporate profits above lives of people like me. As a resident of indianapolis, indiana, i live in the shadow of eli lillys national headquarters, my life has been at the whim of the Company Since diagnosed with type one diabetes when i was five years old. Since then, eli lillys refusal to control the cost of the drug i depend on has wreaked heartbreak and havoc on my life, my sisters and those that care about us. I dont 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 early on because if my dose was miscalculated by one unit, it would cost me my life. I remember being in the hospital multiple times a week, nurses secretly spying on my mom to make sure she wasnt eating my food because my blood sugar would drop so fast. In actuality, my body was rejecting the insulin. I remember showing teachers scars on my fingertips from checking blood sugar levels because they didnt believe i was diabetic when i complained of not feeling well. Having a huge responsibility at a tender age makes me feel robbed of my childhood. Being the middle child, tried to stay in my lane as 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 one 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 Doctors Office, trying to comfort her, tell her it would be okay. Shelby and i have a fear of going through the same challenges as aunt joy, our mothers sister that passed away at 47, due to complications of type one 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 one diabetic travel to mexico or canada for insulin or buy insulin off the black market. The fact that four people under the age of 30 died last month due to rationing, not able to afford insulin is gut wrenching. According to a survey by t 1 international, one in four rags insulin. This is unacceptable. This is why the movement to make insulin affordable for all is important. During my freshman and sophomore year, i had to ration my insulin for reasons to this day, i dont understand why i was denied medicaid, aged out of my pediatric endocrinologist. The last prescription from my doctor came with a note saying im sorry, this is the last prescription i can fill for you. My professors knew my predicament, yet some could care less, didnt help me in class since i spent the majority of it in the bathroom or asleep. I survived by eating less food to take less insulin to make my vials stretch. This is a fear i had to live through throughout my education, the reality so many people with diabetes face every single day. Lets shift gears. It is may, 2018. I am 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. Thats just insulin. That price doesnt include test strips, needles, other vital supplies. I couldnt afford to purchase my full supply of insulin, my sister risked her life by sharing hers. One night i took my nighttime dose of insulin and left the vile on the dresser for my sister to see. I assumed she would think i had already taken my dose since i left the vile on the dresser but she didnt. She thought i still needed to take my insulin for the evening, so she took less of her normal dose to ensure there was enough left for me to take. She put herself at risk. The next day she went into diabetic keet oh acid owes is, hospitalized four days. Vains in her body blew, almost went into a diabetic coma. I couldnt afford my insulin because eli lilly and others refuse 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. While young people continue to die from rationing, youre just as responsible as people profiting over their lives. Change for this issue wont be a sprinlt. The marathon continues. And as a patient advocate like me, i will not stop speaking out until you find a way to put an e end to the insulin crisis in america. No matter how long it takes, we will build numbers and demanding change because our lives depend on it. Thank you very much. Miss 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 am from grainger, 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 good retirement. That all changed, however, when i was diagnosed with multiple myeloma three years ago, the same illness as david. Multiple myeloma is incurable but treatable blood cancer. Upon my diagnosis, i underwent bone Marrow Transplant and chemotherapy. Im blessed to be in remission today. I am living on borrowed time. But im thankful for every day. However, to keep my cancer at bay, i must take the drug revlomid. Initially it felt good, i would get to live longer, help raise my grandchildren, spend summers at my favorite lake in wisconsin, and for that im grateful. When i learned the cost of revlomid, i was horrified. It is over 250,000 per year. Last january on Medicare Part d because i am 70 i went in and out of the donut hole, paying 4950 that first month, and then more than 8,000 out of pocket over the rest of the year. This is on medicare with the good supplement. That cost was totally unaffordable for me. After one year, it set me into serious debt. I was entirely underwater and i had to make the heartbreaking decision to refinance my house. It was three years from being paid off. And now im starting completely over. In the last year, i have been fortunate to receive a grant for the cost of my revlomid out of pocket, but this assistance is year to year and can always fall through. It is income dependent. I dont feel i should have to depend on yearly grants to be able to live and afford a medication that i need to survive. There are years i do qualify and years i dont qualify. I feel i have spent my life doing some of the right things, contributing to my community, teaching public school, raising my children. I dont feel it is right that despite all this hard work and careful planning i face financial challenges because of cancer i have no control over. Im really thrilled and grateful the additional time revlomid has given me, but having cancer is really hard. I shouldnt have to lose my savings and stress over finances just to stay alive. Im encouraged by the Action Congress is starting to take in the hearings of the last couple months, and i am particularly grateful for this committee for listening. What patients need most is real change to the system and congressional action that will bring down drug prices. For me one solution would be the creates act which mr. Jordan talked about. Creates addresses a tactic, the company that makes revlomid, uses to deny access to revlomid. It prevents competitors coming to market and allows them to set the price high. I came to d. C. Last year to encourage congress to pass this important piece of legislation. Im grateful that the bill passed the house energy and commerce and Judiciary Committees, and i hope it gets over the finish line as soon as possible. Thank you. 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 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 of the actions of Drug Companies in raising prices that have real consequences for real people. Miss 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 certain drug, and then so youll be prepared, miss holt and miss greg, going to ask you the same question. Go ahead. Thank you. I feel the most difficult thing was just keeping up with it. We had to move around a lot. My parents, it was either we paid the rent or we, me and my sister lived. As an adult now, i feel that ive made the sacrifice of really just enjoying my life. I am 23 years old and im tired. And i dont want to be tired any more and i dont want anybody else to feel like how i feel, ands i feel like it is unfair that not just only four people under the age of 30 that died last month, but any and everyone effected by rationing they didnt get to have a decent quality of life. I want to go to you with the same question, miss mclinn. Whats the most difficult decisions you had to make. You also said something that was so powerful when you talked about your son like a race against time, and one of the things i have noticed is that nih is a phenomenal place. And coming up with things that used to be fatal, coming up with solutions to make them chronic, and hopefully the things that are going on that you talked about will be helpful to your son. But go ahead. Whats the most difficult decisions you had to make with regard to your situation, maam . Well, one difficult situation that i have had to face a decision with jordan is actually a decision that was difficult but also a decision that when he was diagnosed i didnt 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 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 placebo for 96 weeks. Thats hard when you know what happens so quickly and at this age, like i said at jordans age, we never thought he would be doing the things he is doing. If he were in a Clinical Trial now receiving a placebo for 96 weeks, we know what happens. We know what happens when these kids dont get treatment. So for me, that was, i mean, kind of a bittersweet thing to say. I never thought i would be able to have Clinical Trials to choose for my son, so i am extremely grateful for the innovation, but i also think i know this isnt the purpose of this committee, but i think it is 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. Miss greg. For me probably one of the most difficult decisions is having to make the choice to go on affordable but pretty hard immuno suppressants. The one i am on, i just got married, my husband and i had to make the decision that i cant have kids if im on it. It is absolutely not allowed because it is a hard, old chemo drug. That sucks to be quite frank. I wish there were generic options for me. I dont mind paying for a drug, but it needs to be accessible and affordable. And im selfemployed. I do well. Theres no way anyone can afford 1100 a month. And they just keep producing new by logics that are more expensive than the current ones on the market because no generics are available. Thats huge for somebody like me. Thank you. And miss 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, my bill was over 4,000. I couldnt 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 am thankful i had a home to refinance. Other people arent that lucky. To be that close to being debt free, and having to start over was very, very difficult for me. Again, i have many, many more questions to ask, but im going to my minutes are up. So well now yield to miss miller. Im sorry. Mr. Heinz. Thank you, mr. Chairman. I want to thank each of you for being here, sharing your stories. Theyre heart wrenching and very real and personal for you and for your loved ones and i am grateful for you coming and sharing with us today. Theres a difficult balance that somehow we have to strike in all this. Youre bringing some suggestions to the table that i think need to be looked at. So all of this needs to be looked upon from the big perspective. Yall are in a situation where the costs of medication for you and your loved ones is astronomical. And theres about 5 , fewer than 5 of americans are actually having to pay the list price on drugs. And i dont know if any of you have to pay the list price or are getting help on that or not, but fewer than 5 actually paid the list price. I know a couple of you, miss holt, mr. Mitchell, you spoke specifically of revlomid, and i went back and looked at celgene, that took over 14 years for them to develop that drug, 800 million to produce that drug. And from what i have been able to see, 140,000 patients are taking cell genes hematology, oncology medicine since, assisted through the patient support group. 1. 4 billion back to patients who are involved in taking some of their drugs. And they reinvest some 37 of revenues back into research and development. I think somehow we have to strike a balance here. Theres 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 youre 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 am grateful for you coming here. But pharmaceutical companies spent 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, miss mclinn, that i was intrigued about with your situation and reading about your story is the right to try interest that you have and worked with when then governor pence. Can you tell us a little about your experience with that, fighting for the right to try . Sure. When jordan was five, we actually didnt have a Clinical Trial available to us. So i heard about a drug that was coming through the pipeline, but based on the inclusion criteria, i didnt believe at that time jordan would be able to make it into the Clinical Trial, so im passionate about patients receiving access to treatments. I dont care what the pathway is. Im just passionate about patients being able to access those treatments. So at the time jordan didnt qualify, we didnt think he would qualify for a trial, so we started fighting for the right to try law that 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 the governor at the time, it passed with unanimous bipartisan support across the nation really, and we did start to work on federal legislation which was passed into law last may, the law does bear jordans name, and jordan is not receiving a treatment through the right to try pathway, he is receiving treatment through a Clinical Trial which is what we wanted to start with, but i am happy to tell you today about our friend, a former navy pilot battling als, and he didnt make it to Clinical Trial. A few months ago, jordan got to be with matt when he received his first treatment of an experimental treatment for als through the right to try pathway, so it has been really awesome to be on that journey and for jordan to be part of seeing that come full circle and seeing someone that has been able to benefit. Last week matt became the first person to receive a fourth treatment. He is doing very well. Thank you, mr. Chairman. Before we go to miss norton, mr. Mitchell, would you comment on, i want to hear, i want the hearing to be effective, efficient, would you comment on what mr. Hice said, he makes a good point on research and development and the fact that there are programs to discount drugs. Well, a couple of things, mr. Chairman, thank you. First of all, approximately twothirds of americans pay some or all of the cost of their drugs based on this price. People in high deductible plans pay less price for deductible period, people on medicare pay their out of pockets and part d based on list price. People that dont have Health Care Coverage pay based on list price, and secretary azar points out twothirds of all americans are paying in whole or in part based on list price. Thats the first thing i want to straighten out. Thats a lot of money for a lot of people when prices are high. Second, i know that with respect, sir, you quoted celgene about revlomid. Thats a drug invented in the 1950s. Celgene stumbled into it accidentally based on Clinical Trials in academia. The drug came to market in 2005, revlomid did. Theres still no generic for revlomid. And the reason is that the company has been able to extend its monopoly by abusing laws that are put in place. You know, i fully agree that when a drug Company Brings an innovative drug to market, we want them to profit. The system is based on that. Five years for small molecules, seven for orphan, 12 for by logic, make a lot of money. But at the end of the period, Congress Says were supposed to let markets drive down price through competition. Celgene prevented that happening. It was introduced in 2005 at 6,000. It costs 18,000, one capsule costs 720. This is an old drug. Theres no excuse for this. Celgene is not plowing the money they claim back into r d, theyre milking an old drug. If they didnt, they would be forced to innovate. Thank you for clarifying that. Miss norton. Thank you very much first for the hearing, mr. Chairman, but very much for the testimony we heard today. I appreciate mr. Mitchells elaboration. No one on this side wants anything less than a fair return for the extraordinary work that the Drug Companies do. We we have abundant evidence of a great deal more than anybody would regard as fair return, and of course people go to canada. Theres every reason to believe Drug Companies there want a fair return, too. I think youve made the best case, better case than we could have made by describing your own experience. I would like to ask miss skipper a question. I was intrigued by the fact both she and her sister had had diabetes type one. Yes. This is very serious diabetes. And this manifests when youre children . Yes. Now, insulin is one of those drugs we want to look at to see whether there has been an increase over time. I dont know of improvements made in insulin. Do you know of improvements made in insulin when you get insulin . Are you told youre Getting Better insulin than you would have gotten ten years ago . No, maam, it has been the same insulin. So the drug itself has not changed. No. What about the prices . The prices have gone up i believe over 300 in the last ten years. How has that effected, 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, you could risk your life. Yes. Yes. Did you ever ration the drug . Yes. When i said i had to eat less food, that okay. With insulin, theres like a little calculation, how many carbs youre going to eat, you have to figure with blood sugar and correction factor, what you correct for blood sugar. I didnt have enough insulin, i ate less food, i didnt have a choice but to take less insulin because i wasnt getting a consistent supply. So i had to eat less food because i didnt have enough insulin to really take care of myself. So you were trying to make your i believe so lynn, what insulin you had, last longer . Yes. How could you calculate it . Did you have some scientific way, measurement to calculate whether or not you were at risk when you decided to take less insulin, how much insulin to take less than was the calculated dose . Well, so i dont have any pancreatic function. So if i do the math, do you mind if i give you an example . Yes. If my sugar is 250, my target is 150, i would have to subtract 250 and 150 and divide that by what is called a correction factor. So for every 35 points over my target, i would have to take one unit. Then i would add that to on a scale for every seven grams of carbohydrates, i take one unit. So that is how you calculate it. But if i dont have an actual monthly supply of that, i have to figure out how to make that stretch. So by eating less food, i wasnt able to effect what was right for the blood sugar. Leaving this calculation to you sounds itself very risky. I understand that your sister was hospitalized and nearly died last year as a result of rationing insulin. How did that happen . Did she incorrectly calculate . She took less. We were literally sharing the same vile of insulin. We were both using the same vile of insulin. She took less than what she was supposed to take to ensure that there was enough insulin left in the vile so i could take my dose. But it was like she didnt realize i had already taken my dose. So she took less so i could be able to take my dose. All i can say, mr. Chairman, is case made. Thank you very much, miss miller. Thank you, chairman cummings, Ranking Member jordan. Thank you all for being here today. Miss mclinn, thank you for sharing your familys story and your experience as a mother and grandmother. It is heart wrenching to hear. Im glad innovation and research is helping jordan, giving him and so many other people hope. In your testimony you discuss 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 . Well, just for an example jordan has a rare disease that effects one in 5,000 boys. The drug that jordan is trying right now is really only designed to help 8 of patients. So jordan has a rare disease and then he is a rare subset of that. So we have lots of drugs right now coming up in the duchenne pipeline, not just that but other rare diseases. Even though jordan is doing well and has a treatment now, it is not a cure. It is designed to slow progression of his disease. He is ten. He is still young, doing well. We need more treatments to continue to be developed. We need treatments for her son joseph who is 16 years old. We need treatments for all our boys and treatments yet to be discovered. So innovation is so important to us. And it is 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 were 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 still going to work in this space. I need them in this space, so do so many other people. I think you hit the nail on the head with your comments there. And we all do want to do something. And it seems to me youre buying time, and by the time your son is 16, youre hoping that its been changed even more. Again, it is heart wrenching. What suggestions would you have for congress on how we can better encourage the innovation and reward it . I honestly dont have a big aha answer to that. I really came here today to remind you as you have these discussions, remember to not make decisions if youre 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 dont know. I look at how much money just in jordan alone, we travel out of state. He is twoandahalf years in. For the first two years, we went out of state every single week, and were just one. He is one of 16 in this trial. And this is a small trial. Some Clinical Trials are much bigger than this. I look at how much money, and i mean, i dont know how much, but i know traveling is not expensive, i think of doctors, nurses, surgeries hes had. He had two muscle biopsies, where they had to take a sample of muscle before he started the trial, another one 24 weeks later to see if he was producing more distrove en. All 16 boys are producing more, which is incredible, but when you think about the surgeon that did that, the nurses in the room, the scientists, the storage of the muscle biopsies, theres so much that goes in. Theres a lot of expense goes into Clinical Trials, and i just want to make sure were not for getting about this as we have these conversations. 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 what we legislate or make as law or a rule because five years down, one year down we may be dealing with something we didnt intend to happen, so were 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. Thank you. Mr. Welch. Thank you. I want to thank you. Every once in a while we get an opportunity to do something useful in congress, not often. Today is one of those days. And i just want to give you my reaction. It is not for you to tell us what we should do to bring prices down. Youre the face of the harm caused by our failure not to bring prices down. Each one of you has a separate story. You lost your husband at 40. Raised kids alone. You and your sisters sharing your insulin. What i love about listening to you, you are living your life. Youve got a real challenge. It could happen to any of us sitting up here, it is luck of the draw. When faced with that, it is not a fairness thing, you dont know why it happened, theres nothing you did to make it happen, but then you own it. You have to make a decision and you try to make the decision and live your life, you fall in love and get married and live with that. I mean, yeah. Thats really life affirming. And what i find so inspiring about it is youre not angry. I mean, youre frustrated, worried, but i didnt hear anger. Youre entitled to some anger at us because it is our job to make certain that these companies dont ripoff the patent system, dont ripoff the taxpayer, dont game the system, and it is for us to figure out how theyre doing that. And youve testified, mr. Mitchell, many times. Really as knowledgeable as anybody about all of the ways in which the Companies Put profits ahead of people. But i think it is helpful to be here for us to hear you. Were starting to come together. We pass some mr. Cummings has been a leader on trying to get prices down for years. And it is starting to make a difference. The Senate Finally passed legislation yesterday thats going to put a significant dent in the ripoff. It could bring down costs by 100 billion. What i get so frustrated at is the selfrighteous justification from a lot of the Companies Making a lot of money, that if we do anything to make prices affordable, anything close to whats paid for all of these medications in all of the other countries except ours that it will end, quote, innovation. It may end 100 million pay days, which i hope it does. But bottom line, we are all in this together and we have to have politics is about trying to find ways where things that are common problems we can come up with solutions that work for all of us. Thats the job. Theres got to be commitment that i know the chairman has, many of us, that if you get medication, youve got to be able to afford it. I just want to say on my behalf, 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. And my hope is that we will do our job to deserve your respect that you have earned yourselves. I just want to say thank you. Mr. Mitchell. I got a little time left. Im going to use your time if you allow me. I will. I want to say, i want to quote secretary azar who said i have been a pharmaceutical ceo, i am aware of the old tired talking points that if we take one dollar out of profit that the engine of innovation will grind to a halt in this country. I am tired of those talking points, so is President Trump. I want to say amen. Thank you. Thank you all very much. Mr. Chairman. Thank you. Mr. Jordan. Thank you, mr. Chairman. First of all, miss mclinn, youre living ploroof of somethg i long believed. We have all of these lobbyists running around this time, no high price lobbyist like a mom on a mission. We appreciate your passion and your love for your son jordan. You talked about your situation and if you dont mind, how are you do you have private insurance . How are you covering these tests and trials that jordan is part of . The drug company pays for it. Really . Interesting. And i think thats really important to know that, that these Clinical Trials are expensive, the money doesnt always come from taxpayer money. And i know some does, and i know that nih, i know that theres funding for rare disease, but jordans trial is being paid for by his drug company, so all those trips we make, all of the doctors, nurses, the drug, all of it, theyre 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 thinks we want that. But i just dont want us to miss the point that sometimes there are reasons that drug prices are high, and i think in jordans case it is reasonable to expect his drug is going to be expensive for that reason. Dr. Mitchell, or mr. Mitchell, you mentioned three things you think need to happen. Can you walk us through those again . And mr. Hice mentioned earlier, you talk about a balance we need. You want innovation to happen, as you said in your opening statement, without innovation, theyre not going to find what you need to continue to live, so innovation is critical but price matters too. Thats where were at. Lets figure out how we can keep both. I think you have three points you made in opening statement. I appreciate you offering me the chance to repeat them, sir. We need to reform patent law. The creates act you helped sponsor and helped advance in congress is important. Pay for delay deals that dont allow generics and bio similars to come to market timely. Citizen petitions, 95 fiemd with Drug Companies, 92 kicked by the fda that former commissioner gottlieb flagged as a problem. Patent thickening that they tried to take on. This is to make the system you built work so we can reward innovation. And let them make a lot of money because you did innovation, you took a risk. Exactly right. Theres a reason patent protection is in the constitution. We want people to take risks, come up with great ideas, innovative things and do it. Exactly. You have to make it balance. So when the time you intend is over, competition and free markets drive it down. So it is not working. Thats one. Two, we really fundamentally believe that the United States should do what every other country in the world does, bargain directly with Drug Companies. Strike the noninterference clause and medicare should negotiate drug prices. We think that negotiations is the essence of a capitalist system. When youre in a situation, someone can dictate a price to you, thats not free market. Thats giving a monopoly, allowing that to be enforced at taxpayer expense. Third, we think we have a problem down the supply chain. One of the problems with the system is that when list prices go up, everybody down the supply chain makes more money. So they all have incentive to have list prices continue to go up. Pbms, chief among them. Secret rebates are bod policy, we dont think they work for patients. I cant know if the preferred drug on a formulator is there because it is the best drug or least expensive monkey kwalamon we would like you to address transparency with pbms. Those are the three big things. There are others. I appreciate that. The key to me, we have this amazing system where we do get in ovation and the greatest drugs brought to market, research, development brought to market in the United States. We cant stop. We have to make sure that continues. Happens in a way that people can afford medicine they need. Treatment they need which is so thank you all for being here. With that, mr. Chairman, i yield back. Mr. Raskin. Mr. Chairman, thank you very much. I wish that all of 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 and this is a nationwide scandal. I must say this is the finest and most Inspiring Panel of witnesses i have seen since i got to congress. And i hope that every american takes time to watch your testimony today or tonight or over the weekend. I wish i had an hour to question all of you. Mr. Mitchell, i have special attachment to your testimony because it is so lucid and brilliant and clear and also because youre my constituent in bethesda, maryland, you make the 8th district of maryland proud. I wish i knew someone who had millions of twitter and snapchat followers all over america to reach your testimony. Maybe i could prevail upon one of our distinguished freshmen members of the committee to make you famous today, mr. Mitchell. My friend from ohio launched his remarks today with the attacks on socialists, theyre not jacking up the prices to make them unaffordable for americans, and it is not socialists who are stifling competition, it is 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 offal of altruism. They will destroy competition and every significant free market economist understood that. I think thats the burden of your testimony, mr. Mitchell, that thats whats going on. If they can make profit by paying off generic kmcompetitor out of the market, keep prices inflated, theyll do it. If they can make extra profit by obtaining new drug patents for old drugs long on the market, theyll do that. If they can inflate 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 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 built a community of more than 150,000 patients and families to fight for lower Prescription Drug prices, to fight for real competition, to fight against monopoly pricing in medical services. 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. There is no correlation and multiple academics have studies 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 profit maximizers. As long as we let them to that, they will continue to do that. Why would they stop . It is their job to take your other shareholders. Thats my concern, that that wrecks the balance between ensuring that we give a good, rich return for excellent Innovative New drugs and ensure that a price is set thats affordable. May i give you one example . Yes. Very concerned, nih reports, francis collins, director reports theres impending cure coming for sickle cell out of nih. We checked. They invested 300 million. And nih reports spending 100 million a year right now on sickle cell cure. These gene therapies are coming to market between 500,000 and 2 million. If we have a cure for sickle cell comes out of nih, that will be for 100,000 people in this country with sickle cell, it will cost us 100 billion. And there are 400 gene therapies investment. How are we going to pay for this . Let me followup. I am the proud representative of not only you but of the nih which vefts in Scientific Research to fight killer diseases that our population is struggling with. When they come up with breakthroughs, those scientific inventions and discoveries are used by the companies. Should the Public Investment in research be also considered when deciding regulation of Prescription Drug prices . The gentlemans time expired, you may briefly answer the question. Thank you, mr. Chairman. Yes, we believe it should. We also think we should Pay Attention when you talk about them financing Clinical Trials that we give them tax breaks for that, orphan drug act gives them for trials that are done for miss mclinns son, a tax break. So theyre not only funding through nih and through various Tax Advantages for doing the research. And by the way, dont stop that. Keep it going. I need new drugs or im going to die. Thats straight up a fact. So we want it, but we want drugs to come forward at prices we can afford. Mr. Keller. 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 colleagues that say this is inspiring hearing of sorts, listening to this great panel, and this is something where hopefully we have a bunch of bipartisan interest in trying to solve. Mr. Mitchell, i am particularly interested in what you had to say. I agree with my colleague from maryland that presented this in a lucid way, in a way that shares what i believe. I also add the quote from mismclinn, it is okay companies are making a profit, how much, i dont know. That sums up my general philosophy. I want innovation to continue. I Want Companies to make the maximum they can make to encourage innovation within some boundaries, recognizing our patent system thats constitutionally prescribed is critical to the formation of these drugs. I was listening to your testimony, miss holt, spent a lot of time with miloma at md anderson seven years ago. With hodgkins lymphoma. I was trying to remember when it was. I was sitting here looking through my email files and gmile gmiles gmails. Eight years this coming sunday, this is the email back and forth to my wife. When i was at the Doctors Office thinking i had walking pneumonia. I was starting to figure out i didnt. I now know that was july 28th, the date. Then found out a few days later, got the results that it was hodgkins lymphoma. I said, is that the bad kind or good kind . Doctor said, i guess its the good time. Going through that, obviously, sort of changes your perspective. I was on a trial. Down at md anderson. I spent every two weeks, from august through january of 2012, going down to md anderson in the trial clinic section there at md anderson. Getting treated with this. It was not fda approved at that point. It was fda approved for relapse patients. I was a new patient. Im very grateful that that drug was being brought to market. That a fapharmaceutical company was making money doing it. Some of the Research Going into that came through nih and other avenues of publicly funded research, including through the university of texas, i think, and other avenues. So for me, the questions im trying to wrestle with and, you know, often in congress, we dont acknowledge what we dont know when, in fact, we generally theres a lot more that we dont know than that we know. But i dont know the answers to how much money is coming through nih and publicly funded research, held through a private corporation, and how much profit should be allowed, right . I cringe when i think that the government is setting what profit is allowed. I want the markets to work. As my colleague from maryland was talking about, we dont always have a full market going on here in terms of competition because we have all these issues. I dont mean to filibuster here. Like my colleague said, id like to sit here for an hour and have a give and take. Ive been intrigued by what youve all had to say. I know im interested in a number of different pieces of legislation, including some of the ones mentioned. Ms. Craig, my fellow texan, i think you mentioned some legislation each of you have, and im looking at that. Legislation 2139, patients were Affordable Drugs now, which mr. Mitchell, you were part of supporting, trying to stop the games Patent Companies play by dragging these things out and tweaking the formula, then moving it down the line. These are all things i think we need to look at. You know, again, provided that as ms. Mccline, i think youve pointed out, and you, too, mr. Mitchell, all the panelists, that we preserve innovation. Make sure there is an abundant supply of drugs continuing to be developed so we have these lifesaving cures, and were able to distribute that around the world, which companies are structured to do for profit. We have a lot of work to do to make sure the patent system isnt gamed. Middlemen arent driving up prices on getting more transparency in the process. I think the three points you outlined, mr. Mitchell. I just did what i hate to do, which i think i used my five minutes without asking a question. I apologize for that. I appreciate the questions you have answered and that youve spent the time here taking the time out of your busy schedules to be here. I thank the chair for having this hearing. Thank you very much. Ms. Ocasiocortez. Thank you. I appreciate you, mr. Chairman, holding the hearing. First and foremost to each and every one of you, firstly, im sorry. Im sorry you all are going through the things youre 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. They dont know why. The reason why was because we lost my father to a rare form of lung cancer. We couldnt find treatment for him. 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 treatment 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 dont think that that is true. Ms. Skipper, you said that with your insurance, your insulin is 1,000 a month, is that correct . Yes. When insulin was first developed, the patent was sold do you understand do you know this story . Yeah, for 1. For 1, right . Yeah. Thats how much the patent for all insulin was sold for. Do you know the reason why its 1,000 with insurance for you . No. Neither do i. Yeah, i have no idea. Frankly, i dont think corporations understand well, i dont think corporations will give us a reason why. A lot has been made about how much has been spent on research and development. Between 2006 and 2015, about 465 billion was invested in research and development. 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 . I know what they are. What is a stock buyback . Its when a company decides to purchase shares of its stock in order to drive up its stock price. So between those roughly ten 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. They spent more than their entire budget on research and development on a tactic to drive up their own strzok price. Stock buybacks used to be illegal in this country. And once they were made legal, they were made they were allowed. One of the things is that when a company buys their own stock, it drives up the price of their stock. Something thats 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. Theyre incentivized to raise their stock price. So, you know, theres a lot of debate as to what can be structured, whether we can go single payer, whether we maintain the insurance system how it is, how you make it more competitive, how you dont, et cetera. I think one very clear thing we can see, mr. Chair, is that if we eliminated stock buybacks, we could reduce the cost outlays 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 is no reason for a drug as simple as insulin, which costs 21 in canada for a 10 milliliter bottle, to cost the equivalent of a mortgage payment or sometimes two mortgage payments. With that, i yield. Thank you. Thank you very much. Mr. Meadows. Thank you, many chairman. Thank each of you for your testimony today. My apologies for being a little 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. Ive had a number of conversations with the chairman. We both have a passion to not just make this political but to make it real. Ms. Skipper, you should never have to ration yourself with insulin. You should also be able to have that affordable drug, as ms. Ocasiocortez just mentioned, because thats a drug that has been around for a long time. 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. We need to work in a bipartisan way. I think you have a commitment. Im here to tells a all five of you. You have a bipartisan effort in trying to do this. Mr. Welch, my good friend from vermont, mentioned they passed something out of senator gra grassleys committee yesterday. Is that the perfect answer . I can tell you, its not. We have but i can tell you that democrats, republicans, are looking at this very, very closely. Help is on the way in the near future. I can tell you that i believe we must announce an initiative that hopefully will gain traction legislatively in the house and in the senate. 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. So as we look at that, we created pbms. I dont know if you know that, but when hmos came around, we actually created pbms. Yet were seeing this artificial increase in Retail Prices that makes it very, very difficult. Would you agree with that . Yeah, the head waters of the problem is the list price is set by the Drug Companies, but we have a system downstream that is that supports that. Has reverse incentives. As patients, we have a problem with secret rebates. We dont think theyre designed to serve us. We think theyre designed to serve the people who make money on the system. All right. Ms. Mccline, thank you for sharing the fact that youre benefitting 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 for Clinical Trials, the expense of getting groundbreaking drugs to market, there is a clinical one, clinical two, clinical three trial. What i believe, just line weve done on a few drugs, hiv and a few cancer drugs, is once we do that clinical two trial and weve shown that there is some safety, allow those to go ahead and come to market. Allow those so while were doing that clinical three 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 would be helpful . Yes. All right. I was hopeful that that was going to be your answer. The other aspect that we have to get to is, because of the way weve structured Prescription Drug prices, not just for Medicare Part d, but because of the pbms, it is a very integrated system in terms of delivery. So you have retail price. Youve got net price. Youve got rebates. 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 were going to eliminate the pbms, some companies actually take the rebates that they get from pbms to lower insurance prices. So it is a very, very complex thing. Here is my commitment to you. I believe its one that the chairman supports. I can tell you, its one that the administration supports because i just left. We are going to lower Prescription Drug prices. We are going to do that without increasing insurance premiums to pay for it. It is time we act, and the time is now. I thank you all for being here. I yield back. Want to thank the gentleman, mr. Meadows. To assure you, he is absolutely right. Theres 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 a number of angles. I want to thank you for working with us. Now, ms. Presley. I thank you mr. Chairman. Id like to say how much i appreciate your leadership. 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, you said youre 23 years old and youre tired. Were tired. Like you, the millions of families are suffering. It is not only you individually battling this but all the people who love you and support you in this journey. The fact you have to weaponize your lived experience in order to be seen and heard. You thank us for listening, but i think it is too low a bar. It is high time we act. You are rationing lifesaving medications, and it seems for far too long, weve been rationing our response and our compassion and our due diligence. So it is critical that we act, and we act in a bipartisan fashion. You know, although insulin has not changed since the mid 1990s, its price has skyrocketed and communities of color has been disproportionately impacted. According to the american diabetic association, black and latinos are more than 70 more likely to be diagnosed with diabetic than white americans. The price of insulin is nearly tripled from 3200 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 recent months and years . Through donations. Donations from people from my community, my church, and sharing with my sister. Thats burdensome also because i feel like im taking away from people who could also be using this lifesustaining medicine. But it also makes we appreciate that there is some good in the world in the selflessness of some people. I cant tell you the last time that i filled a prescription for my insulin. So its just its been really hard to just kind of guesstimate how long my supply is going to last. And you talked about, you know, getting a new job and one that includes employerbased Health Care Coverage. How has could you speak a little bit about that and what that coverage has meant and what the difference has been. I mean, its meant good, if i want to go to the doctor for like a checkup. Ill 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, its just its hard. Its just really hard. I just dont understand. I just dont understand. And so i want to dig into that a little bit more. There are other associated costs which people often overlook in this. So if you could expound upon that a little bit. Yes. So it is not just insulin. I need needles. I need test strips. I need alcohol swabs. Glucose tablets. Extra food just in general. I also have celiac disease, so it is not like i can just eat anything or, you know. Its just very its been very costly to live. I do feel sometimes like this is not i didnt put this on myself, so why do i have to suffer . Why do we have to suffer . So there was actually a recent buzzfeed article that was just speaking about the fact that many 20somethings who will no longer if youre not carried on your parents insurance, you know, the precarious position that is putting so many young adults in. Its particularly acute with regard to someone like you. Living with type i diabetes. I understand you and your sister havent been able to use a parents insurance in recent years but have faced similar struggles to those who lost their s employer coverage. Can you speak to when your mother lost her job when you were children . Oh, im sorry. Sorry. 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 didnt want to continue to struggle. I didnt know how me and my sister were going to make it. I didnt know how my mom was even going to be able to provide for herself, losing her coverage. It just put us in a really bad spot. Well, thank you, ms. Skipper. Thank all of you. You know, the fact that pr hospitfrom hospitalizations to stockpiling or buying insulin on the black market, too Many Americans are cutting corners in their medical care, simply to stay alive. That is just unacceptable. Thank you. Its hard. Ms. Talib. Seriously, chairman . Mama bear. I know. Im the eldest of 14. Ive been taking care of people all my life. When i have emotions, its because ive 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, theres a lack of urgency. Right . Theres a 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 cant be in this room, i want to thank you for that. I know how hard it is. Its funny, our kids are going to be fine sometimes. Were the ones actually feeling more guilt than they are. Theyre like, mom, im great. Im 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, the human stories, but i think youve all put a human face to something for years, i feel like, hasnt truly been translated into the human impact. Until it got so broken down, so to the point where you have people rationing. You have people actually dying right before your eyes. Because weve allowed corporate greed, weve allowed corporate greed to come before the people. We, the government, this chamber, were responsible to protect you from it. And i want to apologize. I want to apologize. Ive 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. I want you to know, its not just us, its congresswoman kelly and all of us in this room. Many of us not now in this room. But i want you to know, we really, truly, sincerely care about your life. A woman came up to me at a coffee hour and said, rashida, i dont understand. Theyre saying insulin is not preventive care. Of course i dug deep, you know. She goes, you dont understand. Insulin prevents death. I said, absolutely. She said her company this is a big company said that they decided to change the system so now she had to literally like sit for a whole month before she can pick up her sons insulin. 2,800 she had to put together. 2,800. I said, nope. I cant wait for a bill to pass. I cant wait for people to wake up here. Im going to put it on my letterhead. On my letterhead, i said, what are you doing . Youre a corporation. I took the Mission Statement of the corporation, put it in there and said, youre supposed to be about people, right . What about the and without telling them who it was, i said, what are you doing . Youre allowing people to die on your Health Insurance. She told me she went in last week to go pick up her sons insulin. She got together 2,800. I know where she lives. It was hard for her to raise that money. She went in. She said, i dont know what you did, but its 244 now. Thats still too much, but that means there is a will. Theyre waiting for us to tell them to stop, right . Moms know this. When theres bad behavior, we subsidize, done the research and development, done everything were supposed to do to say to them, youre supposed to be able to provide for 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, thats great. But action speaks louder. So i only have a minute. I want each of you to tell me, in your own personal opinion, why do you think we have enacted in congress . Well start with you. Drug companies are monopoly have monopoly Pricing Power, and monopolies, by definition, have unlimited resources to defend monopolies with Political Campaign contributions and lobbyists. There is 1. 5 lobbyists for every one of you in the United States congress. 1. 5. Thats like daunting odds, as my dad would have said. So i think it is both the fact that they use their monopoly Pricing Power to maintain their monopoly Pricing Power and to stop reform from happening. You know, i dont know the answer, but i think this hearing is, like you said, putting a human face to the issue. I think theres a lot of donations that happen. Maybe it gets pushed back to the 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. Its not so treatable for these people. Its not okay. The question, why havent you acted . I think it is an interesting question. Im 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 treatment sooner. I think that everyone in this room and everyone listening is acting right now. I think thats what we need to focus on. I think lets not dwell on why we havent solved this yet. Lets keep doing the next right thing, and lets just figure it out. Lets just do that. Thank you very much. I would say, from a patient perspective, not really knowing the, you know i dont know how, you know, all of this works, but it seems like the people up top benefit from this, in not acting. I dont know if its in a Financial Way or whatever way, but it just seems like you get a piece of the pie some way, somehow. Thank you. And im just a retired teacher from indiana. But, to me, its money. I think its money. Its the lobbyists. Its the pressure put on people to do things according to the money rather than to the good. I also see a lot of bipartisan fighting that i think is inconsequential when it comes down to peoples lives. There needs to be more cooperation. I do think im 70 years old. Im hopeful things will change before i die. Im hopeful, in meetings like this, that things are finally happening. I started coming to washington, d. C. Two years ago to help promote the creates bill. Im frustrated that it is still not passed entirely. But im excited that it is making progress. So im learning how the Government Works and how slow it is. For me, thats frustrating. But im excited to see progress being made. Thanks. Thank you very much. Ms. Kelly . Im ready. Thank you for having my back. I, too, want to thank all of you for being here. Its 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. Im proud to serve on this committee, but im also proud to be a member of energy and commerce. Makes me feel good to hear that you say, you know, were moving alo along. What were doing is meaningful. We are really working in a bipartisan way, which is good for here. You know, because theres so many other ways that were not. Were definitely we definitely are in energy and commerce. When i came to congress, which ive been here im in my seventh year, many i district had the highest race of foreclosures in the state of illinois. Some of it, people lost their jobs. Some of it, they went for mortgage. Some of it was also because of medical reasons. They couldnt afford to keep their home. I think were on the rebound. Things are getting a little better for the other reasons but not for the medical reasons. I also am the chair of the Congressional Black Caucus help brain trust. Of the top ten diseases people die from, africanamericans are number one in eight of them. Ms. Skipper, we work a lot with your issue. The other thing, in that capacity, i am responsible for two conferences a year. One conference, someone shared that they have asthma, and their asthma, the inhaler, is 325 in the United States. She left her inhaler at home, and she was in south africa. Same exact inhaler. Same exact company. Everything exactly the same. The inhaler was th 25. In coming to congress, ive 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 between, you know, paying bills and buying drugs or eating, you know . I promise you, i will continue to work really, really hard in this area on both of these committees. One question, and i dont know if you know the answer, my colleague, ocasiocortez, always has a lot of stats, so you may have some of the answer, but the money that companies spend in advertising, you cant open a magazine without seeing pages and pages and pages. I didnt know if you would know. 6 billion a year. We subsidize it. Thats the unfortunate thing. Were the only theres only two countries in the world that allow direct to Consumer Advertising of pharmaceuticals. Us and new zealand. We give a tax break to these companies to send those advertisements our way. The only reason they do it is to make more money on encouraging people, perhaps, in some cases to use drugs they dont necessarily need even. Okay. And if theres i mean, im one of the last people to ask you a question. Is there anything more you want us to know that you didnt already say . Anything . I do want to say, ms. Kelly, id love to come visit with you and talk about the sickle cell cure nih is talking about bringing forward soon and how were going to make sure that drug developed inside the walls of nih. Theyre running Clinical Trials right now, and theyve spent at least half a billion dollars. How we make sure that drug comes to market at a price that is affordable and accessible. I have been meeting with people. Im in this building 2416. Come and visit any time. Would the gentleman yield . Gentlelady . Yes. I meant you. I just wanted to follow up on this question about add vvertis. Thank you, mr. Mitchell, for telling us it is only u. S. And new zealand which permit Television Advertising for Prescription Drugs. Are you suggesting you think that should be banned or that the cost of those ads should not be tax detuductible for business as ordinary business expenses . Have you done work on this problem . The courts ruled 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 reduction for that advertising. Thatll reduce it by a large amount. That would be good. I dont know why were subsid e subsidizing their advertising. Thank you. Thank you. Thank you very much. Thank you, mr. Chairman. Thank you for having this hearing, and to the Ranking Member, thank you for making it nonpartisan. I want to follow up a little on the earlier discussion. Having spent a good deal of time on this, id like to recommend a book our daily meds, by a former New York Times reporters. Its called how the pharmaceutical companies transform themselves into slick Marketing Companies and hook the American Public. This is not some new phenomenon. If you read the book and do the research, we took pharmaceutical companies from being driven by research, the ceos were usually researchers. They became the ceos. They got a reasonable rate of return on their investments. Then for a variety of reasons, not just direct to the pharmaceutical industry, but more towards 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. It turned out, we trust people with white smocks. We trust doctors and pharmacists and researchers. So they went in and bought up controlling shares, and they turned them into Marketing Companies. To act like this is something that just happened, its just become so bad weve finally gotten attention. 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 is sold by johnson johnson. It keeps me alive. I have a form of leukemia, and im thankful for this pill. It is 500. Ill put it up here. Most expensive thing on me until 3 00 in the afternoon. Most of the research for that pill came from 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. We spent a lot of research trying to help soldiers to be inocula inoculated. We found out about how our blood systems were covered. So this pill that costs 500 here in the United States of america, and im lucky enough that i signed on to a public option that was in the county that i was a county supervisor for years ago. Everybody told me, dont do it. Youll have to get your medical service at the county hospital. My kids and i went to the clinic. We got great service. Its a classic option, public option would work in this country, and does work in some instances. So they help so i dont have the kind of costs that you have. Thats my supplemental. That pill costs 400 a year ago. Then they changed the formula, and now its 500. This pill in australia costs 6. 37. With subsidies. Fully loaded, 37. Where does the rest of the money go to . It doesnt go to research. Mr. Mitchell, a study published in the oxford journal of law and biosciences found 22 of drugs receiving new patents between 2005 and 2015 were actually new drugs. The study concluded, quote, rather that be krn creating new medicines, theyre recycling and repurposing old ones. According to a gao study, Innovative Products accounted for 13 of fda approvals each year from 2005 to 2016. Therein lies the problem. At another hearing, we had a pharmaceutical executive here. I said, we want investment. 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 is very low risk and high return. S in methe meantime, people are going bankrupt and losing their lives. I have two sons. One is jordan. Your story relates to me on multiple levels. This is outrageous. Its just outrageous. It is a crime. These people shouldnt be executives. They should be in prison, in my view. Mr. Mitchell, do you have any comments . When Drug Companies do what you just described, file new patents or old drugs, 78 of all the patents filed on drugs are on existing drugs. If they are filing patents on existing drugs to extend their monopoly on the old drugs, theyre not doing what we saw say we want up here, which is investing in innovation. Investing in research and development where theyll bring the cure for ms. Mclinns boy. That may cure my cancer before i die. So you guys really have got to stop this abuse this allows them to milk old drugs by gaming the system instead of doing what we need them to do, invest in innovation and new drug development. We have to keep in mind 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. Thank you, mr. Mitchell. I want to thank you all once again. Your testimony is really important, and people need to hear our stories. Thank you, mr. Chairman. I yield back. 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 talibs comments, that youre here not just as a academic exercise. You want to see some action. One of the things that weve been talking about as a country for the longest time but dont do anything is medicare for all. Medicare for all would finally give the government the ability to negotiate and lower these drug prices. Lyndon johnson, when he first passed medicare, anticipated, eventually, we would have medicare for all. 25 years ago, senator moynihan had 25 hearings in the Senate Finance committee on health care reform. All of these experts. At the end of it, he says, well, theres one solution. Lets extend medicare. President trump in 2000, in his book, said why dont we have a singlepayer Health Care System . It is better than anything we have. Yet we keep talking about this. We keep having folks like you come testify. Nothing gets done. So i want to ask each of you, starting with mr. Mitchell, do you think medicare for all would help . Affordable drugs only focuses on drug prices. We want very much for people to have access to affordable, accessible care. But we dont 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. Whats your personal opinion . Im not going to express one because im here on behalf of the organization. I think i stay in my lane. I respect that. Ms. Craig . Sorry. I think you asked the question a little over my head. I dont really have an opinion on that. Im only telling my experience with my issue about a drug that costs 1,100 a month with insurance. I respect that. Does anyone have an opinion on it . Ms. Skipper . As i previously stated, i dont 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 my instagram news feed. 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, not having to pay hundreds and thousands for something they need to live, then yes, i would support that. Ms. Holt . I may be the only one on this panel that is on medicare right now. Medicare for me involves medicare plus a supplement. Even with that, my drug prices are sky high. So if that does not change, then no, im not in favor of medicare for all. Thats a very fair point. Part of that is because the medicare hasnt been able to negotiate for drug prices, which some of us have wanted to do. Part of that is because we dont have generic competition. Let me ask a second question. The president came on the state of the union and 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 that pawants to answer, support the idea that if an American Drug is priced higher than the drugs in these five leading countries, germany, france, britain, japan, than americans should pay the same price as people in other countries or we should open it up to generic competition . We strongly support direct medicare price negotiation. Strike the noninterference claus. Direct the secretary to negotiate drug prices. There is absolutely no reason we should be paying two to three times what other countries pay for the exact same drugs, the exact same boxes. You can fix it if we can pass the direct medicare price negotiation. Anyone else want to weigh in . I would agree with mr. Mitchell. The founder of t1 International Actually moved from her home in the United States to london to be able to afford her insulin. 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. Thank you very much. Ms. 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 is a national scandal, that they are able to charge these prices without any accountability for how theyre raising it, why theyre raising it. 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. Competitors are literally paid not to come forward with a generic or other ways that they delay the process moving forward. Ive 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 pat eents for an old drug so the time is longer. That is also hurting people. And what he just pointed out, the fact that they can be so much cheaper overseas is an absolute outrage. We pay for the production, the research and, yet, when it goes overseas, it is affordable, but not here in america. I think your story really on insulin is so moving. This was discovered well over 100 years ago. The scientists gave it to the American People. He didnt want people to make money off his invention. Yet, now it is unaffordable or not even affordable in many places in america, to the point that americans are dying. We need to change this. Work to make it happen. I want to follow up with ms. Craig on your story. You talked about your inflammatory condition. Can you describe what its like with this condition, what the condition is like and what your drug that you received that is now unaffordable, humirhumira, us what it does for you and what it is like if you dont have this drug that you cannot afford now. Oh, man. Thats opening up a can of worms. Well, your epidermis is your largest organ. When im in a full psoriatic flareup, my last one lasted ten months, i was literally covered from head in toe in what some would call lesions. On top of that, all my joints ache. Im selfemployed, a hair stylist, and it affected my business. I had to wait six months to go through three impalement processes, knowing i would not be able to afford the drug once i got approved. Theres no generics available. This drug has been out since 2002. Thats crazy. Its 80 cheaper overseas. The science is there. Its a scandal. Yeah. Absolute scandal. Generic, the science is there. In your testimony, you said your written testimony, youre 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. Yeah. More than what you spend for food in a month. Yeah. First four months, it went up 40 . Not having it has totally impacted your health. Can you still work without the drug, or do you i can because ive been in basically remission the last two years. Ive had to wean off of humira. Ive had to go back on it, back on it. Im currently on an old drug. You also wrote that over 250 patents have been filed, additional patents on hee mumir effectively delaying any competition for decades, is that correct . Yes. That is manipulating the system, to not allow americans to afford it. We should stop that and ban that immediately. Id like to say that those 247 patents, that was only last year. Whats the total, do you know . Do you know . I believe they filed 247 patents, three short of what you estimated. Youre close enough. Now, i understand that you also take embril now . No, i do not. Ive been on it before, but the cost was just under 1,200 a month. I want to say, i am i am distressed beyond belief that they have manipulated the system, to run the price up so that you cant afford the drugs that you need. I am sorry that you have had to face this challenge for your health. It is something that we as a Congress Need to act on as soon as possible. All of you have helped make the case. I want to thank you. 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. Its been going on for decades. The question is, what are we going to do about it . A lot of times, its difficult, but we have to keep pushing and coming up with some new ideas. I think that there is more of a commitment than ever. That doesnt mean it always translates to legislative victories. I was on the california legislature, and we did push through some reforms there. It was still difficult, but we got it done. I always say we need to continuously highlight peoples stories, to make a powerful impact. Thats why im 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 is definitely something that people should be able to feel. Even if theyre not directly impacted. Ms. Skipper, you mentioned in your testimony that you and your sister shared insulin in order to manage your type i diabetes. How long did you and your sister share insulin . Were still sharing. Still sharing. Wow. When did you and your sister first decide to start sharing insulin . I dont well, i dont think it was more or less a decision to do it. I think it was something that you were forced to do. We were forced to do. I dont how long would you say . Seven years. Yeah, about seven years. What kind of impact does it have on your health, to share insulin . To sum it up, i dont know what a good day is. I dont know what a day to feel okay. Like i dont know what that feels like. There hasnt been a day where i dont have like i dont have a high blood sugar reading. There hasnt been a day where i dont have like aches and pains. There hasnt been a day where ive been completely exhaust ed. To explain it the best way i can, i dont know what a good day feels like. Yeah. So we do know that, because you dont know what a good day feels like because of your symptoms, that there is probably an underlying and chronic impact on your health. Yes. That will probably, you know im not a doctor, but im assuming that its 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 . Angry. I was very angry. I was angry and, for some reason, i had i felt guilty. I dont know why i felt guilty, because i know i dont control the price of this drug. I just didnt understand why im giving this corporation 40 hours a week, and i cant afford to have what i need, and my sister has basically put her life on the line to ensure that im alive. I was very angry. Also, like i said, guilt. Very shameful. I just very shameful because we it just was hard to see my sister fighting for her life. It was just i was ashamed that i couldnt get what i needed, so that she did not have to be in that position. I feel your anger. I think the American People should also feel your anger. You know, i grew up without Health Insurance. Ive seen i know what its 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 Health Care System, but we have a lot of negatives that weve got to Work Together. I think sharing your story and making sure people know about it, especially with the t1 international organization, to make sure that we share those stories. Theres some folks here that have 4, 5 million twitter followers that can help amplify it. I dont have that many. But i think that at least adding our voice over and over could help make a difference. I thank you for all of you for being here and sharing your stories. Its important. Thank you so much. I yield back, mr. Chairman. Thank you very much. Just one thing, mr. Mitchell. The price of revlevent has nearly tripled, the drug our witnesses are taking, is that right . More than tripled. Yeah, okay. Thats since it was launched in 2005. A yearly supply of this drug can cost almost 250,000 per year. Celejene sold billions in a year alone. What did it do with all the money . First, gave its ceo a pay raise. His compensation was worth 16. 2 million. In 2018. 3 million more was added to that. 3 million more than the previous year. Salaries. Tell me about that, of these drug manufacturing ceos. Do you think that plays a role in these price hieb hikes . Yes. I think that the issue that was raised about stock buybacks and the shortterm focus of the Drug Companies is one of the things not getting us what we want. Because theyre 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 every one of us at that table wants. So you take an old drug like revlemid. In one year, i think it was 2018, they ran up the price 19. 8 . In one 12month period. One of the reasons they did it is because they had a failed Crohns Disease drug trial. They had to make a 700 million charge. So they increased the price to plug their hole, to order to prop up the stock price. These are the games these companies play. Thank you very much. Do you have anything . I want to thank all of you for being here today. Before i conclude todays hearing, i would like to enter into the record two letters that the committee has received in recent days. One from initiative for medicines access and knowledge. 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 in communities all across the country. I ask these letters will entered into the record and so order. I again thank all of you for being here. It is not easy to, on national tv, by the way, to talk about your pain. Youre talking about some of the things that are so very, very personal. And a lot of times, you know, when people are suffering, its almost like theyre suffering alone. They feel like they Society Nobody knows what theyre 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 youre going through exactly. Thats why we in the congress, we have to move. We dont have any choice. I saw something here today, and im so proud to be the chairman of this committee. I watched our members cry. I watched you all cry. Its 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. Craig, and mr. Mitchell. You know, i heard you talk about, mr. How they will come a day when your options run out. When your options run out, and im sure that you worry about going in to the doctor and the doctor telling you, sorry, your options have run out. When there are options. When they are at our fingertips but because of costs and greed, its almost like youre reaching for the option and you just cant get there. Its one thing if it would debilitate you for a minute but when your life is going to end. As i often say when youre dead, youre dead. It reminds me of in my district, one of the greatest hospitals in the world doing a lot of great things. The hospital saved my life but i know 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 cant get in the door. To all of you, i want you to keep forging lead. Keep in mind the words that i said. I want you to put them on the dna of every cell of your brain. Pain, passion, purpose. Miss mclinn, let me tell you something, you being here today, all of you, youre giving other people hope. You really are. We have a responsibility too, we up here, have a responsibility to make sure we give life to your hope. Give life to your lope. That little boy who is racing and i just watch you as you talk about that hug and allow precious that hug is and what it means to you and im sure you can lardard hardly wait to g back to him. You talk about what youre going through. Its not just you that you are seeking help for. Thats what i love about all of you. You said no matter what im going to make life better for somebody else too. Were going to do everything in our power to help you get to where you got to go because life is precious. As i listen to you and you talked about sometimes feeling your gave the impression that sometimes you felt your life was spiraling downward, that is not a good feeling. Its not a good feeling when you have given so much of your life over and over again. Taking care of youre a schoolteacher . And doing everything youre supposed to do. All you want to do is hug your grand children. Be able to go to the park sometimes. Be able do you do texting . You able to text them. You and i are about the same age. I am challenged and dont mind admitting it. Those are basic things. You want to go down the aisle with your daughter when she gets married. You want to tell her how to wear her dress and what kind of shoes to wear. All that. All that goes to the quality of life. By the way, its not just living. Its about living a quality life. A life of quality. Again, i thank all of you for being here. I want to tell you and this may make you feel some hope. Were going to have the drug company folks sitting in them same seats as soon as we come back. Were going to try to understand some of why they are doing what theyre doing. I do believe that and 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. He said the Drug Companies are getting away with murder. Thats what he said. Getting away with murder. Hes right. Because every time somebody cannot afford that medication, every time they cant they have to share insulin and people have to share insulin and all the things that youve talked about, they are. Im not putting it all on the Drug Companies, but this is the United States of america. This is the greatest country out here. We ought to be able to resolve the issues. I want to thank the members for being here. I cannot end this hearing without saying this because its been really bothering me. We get a lot of complaints. We had a lot of dialogue about our freshmen members. I got to tell you the freshmen members on our committee, miss alexandria ocasiocortez, many tlaib, miss pressley are some of the hardest working members of the congress. I told somebody the other day that as i listen to them im inspired because i realize i am marching towards the twilight of my life. Knowing they are there and will take up this mantle and they will carry this ball down the field and get over that line, excuse me for a football met for metaphor. I am a football fan. That means something to me. Its important to me. Thank you very much. With that, without objection did you want to Say Something else . Without objection, all members will have five days 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 respond as proptly as youre able to. This hearing is adjourned. Mplgt th. This weekend on American History tv, a discussion about the 1980 refugee act. I think president carters decision to push for that act and implement it was a hugely important humanitarian decision and he deserves every bit of the credit that weve heard here today. That said, we have to be realistic and say that doesnt solve all the problems and in fact it creates some. At 6 00 on the siecivil war. Whatever i did in basic deem ya should have something for people interested in the era. Seems will should be more bridges between academia and the public. You can make a connection to the past in a way that you cant. Sunday at 4 00 p. M. Eastern on real america. The 1967 film testimony of truth. Details civilian injuries and deaths caused by u. S. Bombing in north vietnam. Before the ray id i used to come home very happy. All 13 of them, including an unborn baby have been killed. Only i am left. Even little babies are innocent victims of these american air raids. At 6 45 p. M. , historians discuss Health Care Policies since world war i. Trumans universal and it would have covered every one. Up to 75 supported the idea of Health Insurance for all. Explore or nations past. I was on an airstrip in the remote jungles of gayana having just concluded a tour with ben ryan and we were air bushed on that airstrip and shot. Congressman ryan was shot 45 times and died on that airstrip. There were members of the press that died. I was shot five times on the right side of my body. Sunday night on q and a. California democratic congressman jackie speir talk about her memoir. When people say it was a mass suicide, it was not. They were forced to drink this toxic brew by jones and he had many surrounding to make sure that did as they were told. Sunday night at 8 00 p. M. Eastern on cspans q and a. Men who take what they want. When who have the choice of women are seen as leaders. Thats how this is reading. All these women, the more women that come forward, hes more like ginghis kahn. Hes like the great kennedy, clinton. Jefferson. Its mark of a leader in many peoples eyes to see a man taking what he wants. Then at 9 00 p. M. From freedom fest, the annual libertarian atlas vegas. 45 of the countries in the world dont report firearm homicide data. In the countries that dont report firearm homicide data are the countries that tend to have the highest homicide rates. On sunday, our coverage from freedom fest continues at 8 00 p. M. With former georgia congressman bob barr talking about his book, the meaning of is. We have allowed Public Discourse and political activity to sink to the level where we dont demand a requisite amount of uniderstanding, education, civility and what we do and demand of our elected officials. What happens then is those important mechanisms such as impeachment are devalued. At 9 00 p. M. In eastern afters, former george w. Bush Administration Special adviser for cyber security. Talks about how to make cyber space less dangerous. In are corporations that are pretty secure. Are they invulnerable to attack, no. But they are resilient. Can someone penetrate their network because theres no perimeter anymore but can they do real damage to those companies . The answer is no. Watch book tv every weekend on cspan2. President trump and mike pence took part in a welcome ceremony at the pentagon yesterday. Mark esper was confirmed as the 27th secretary of defense by the senate with a vote of 908. He had previously served as the sda secretary of the army

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