I have been diagnosed with Lambert Eaton Myasthenic Syndrome. LEMS is a neuromuscular condition that makes it difficult to move my muscles as I normally would.
In 2018, a new drug company obtained FDA approval to produce 3,4 DAP under the brand name Firdapse. With the new company came new pricing, and the list price for my 80 mg dosage soared to $500,000 annually. I later switched to a similar medication, Ruzurgi, for medical reasons. Although Ruzurgi costs less than Firdapse, the annual price is still $250,000.
I’m lucky to have insurance coverage through my husband’s work that helps me afford my medications, but I worry about the strain these prices put on other LEMS patients and the system as a whole –– as well as what will happen when I go on Medicare in two years. I don’t know how a patient without insurance coverage could afford the astronomical price tag for these drugs.
My name is Michael Nielsen and my wife, Jacki, and I live in Bend, Oregon. I am a two-tour disabled Vietnam combat veteran, so my family has health coverage from CHAMPVA. But even with insurance, we’ve had trouble affording Jacki’s medication for chronic hepatitis C.
Jacki is currently trying out a new drug, Mavyret, on a recommendation from her doctor. Mavyret costs $12,000 for a 30-day supply. We were unable to afford the out-of-pocket expenses of $3,000 annually, but luckily, we qualified for financial help from a patient assistance foundation.
Jacki has been on Mavyret for two months and is waiting for test results to see if it works for her, but she will die without relief for her condition. She is so fatigued all the time that it’s hard for her to get things done and keep up with our four grandchildren. I know that drug companies need to recoup the costs of research and development and that executives have a duty to make a “reasonable” profit for their investors. But I don’t understand how they can watch people die and not help them. Perhaps pharma executives would think differently if they had a family member who fought for their country, dedicated their lives to helping others, and were dying because they couldn’t afford their medications. High drug prices are killing the people our great country is supposed to protect. We must put people over profits.
My daughter Rose, at 19, is living and thriving with cystic fibrosis, or CF. CF is a life-threatening genetic illness that primarily impacts the lungs, and she usually lives through at least one extended hospitalization each year.
Trikafta is part of a suite of “modulator” drugs, all from Vertex, that produce dramatic improvements in lung function for 90 percent of CF patients. But here’s the thing: Rose isn’t one of them. CF is a genetic disease, but Rose’s CF mutations are rare ones. Her medical breakthrough is still ahead of us.
Why, then, is my family so concerned about the price of Trikafta? Because we know that when Rose’s miracle comes, the drug company that holds the monopoly on that breakthrough will charge a similarly lavish sum. They’ll say it’s because they had to pay for innovation. But the truth is, it’s taxpayers, patients, and loved ones who have underwritten these discoveries.
So when it comes time for a treatment to help Rose, I know the game Big Pharma will play. It will take funding from patients, loved ones, and taxpayers and go on to produce a drug that is out of reach for many of the patients. All under the guise of needing a return on investment on its research and development.
Vertex could absolutely reduce the price of Trikafta without harming innovation. But it won’t because it is raking in outrageous profits that have fueled some of the highest salary packages in health care.
I live with type 1 diabetes and was diagnosed soon after my 5th birthday. I’m fortunate to have good health insurance from both of my parents, and my glucose monitor and insulin pump are completely covered. My insulin, Novolog, currently costs us $25 per month, but I’m worried about what’s going to happen when I’m responsible for my own health coverage. When I was first diagnosed, my parents paid about $600 out-of-pocket every three months for all of my supplies, and it was a huge burden on our family. Even today, I hear about how some of the counselors at my diabetes camp have to choose between paying for insulin and paying rent.
I’m terrified of the possibility of a future where I have to ration insulin and depend on my parents for financial support. It motivates me to work hard so that I can enter the nursing field and earn enough to provide for myself. I’m calling for lower insulin prices because it’s going to have a direct impact on my future and well-being — and to advocate for everyone who can’t get what they need right now.
The drugs keeping my Hodgkin’s lymphoma in remission are priced at more than $1 million a year. I’m currently $20,000 in debt due to my health challenges, including from covering the exorbitant prices of my medications. Bills arrive all the time, and I’m overwhelmed by the prices of my drugs.
I earned my law degree while undergoing intense cancer treatment — including 58 bags of chemo, and over 10 surgeries, and a life-saving autologous stem cell transplant. My lived experiences and expertise have motivated me to advocate for others in my community. That’s a big part of why I’m sharing my story now — to raise awareness about the extreme prices of cancer drugs and maintenance treatments that patients endure.
In August 2020, at just six months old, my daughter, Juniper, was diagnosed with infantile spasms — a rare and catastrophic form of childhood epilepsy. Since then, she has undergone two brain surgeries, most recently, a hemispherectomy which removed the entire right hemisphere of her brain. My family and I work relentlessly to manage Juniper’s seizures and give her the best life possible, knowing there is unlikely to ever be a cure.
There was so much about this diagnosis that we were unprepared for, and one of those is how expensive it is to keep my daughter alive. When Juniper was first diagnosed and we were still at the hospital, our doctor prescribed her Acthar gel, which is the “gold standard” for treatment of infantile spasms. We were warned that it is a “very expensive medication” — and we quickly learned that meant a list price of nearly $40,000 per vial.
Every day I recognize how privileged we are to have the insurance coverage we do. However, I also know that could change at any moment — I don’t know what we would do if we lost our jobs or access to our excellent insurance.
I live with psoriatic arthritis.
Growing up, I always had various injuries and illnesses and tendonitis in nearly every joint. I never had a specific diagnosis to explain all of these symptoms until five years ago. My journey to being diagnosed with psoriatic arthritis was difficult, involving dozens of different medications and doctors trying to figure out a diagnosis.
I eventually was prescribed Humira, which brought relief to my joints with minimal side effects. The only concern was that this prescription carried a list price of over $6,400 per month. And Abbvie, Humira’s manufacturer, has hiked Humira’s price 400% over the past 15 years – I know that price will very likely keep increasing in the future if nothing changes.
I’m lucky that I have insurance that allows me to afford my medication, but I know that could change at any moment. The stress of my drug’s price really weighs on me and affects decisions I make every day and for my future. I think about Humira’s price when I switch jobs — worrying that I might have to pay the list price or a larger portion of the price on different insurance.
I live in Utah with my husband and family. I was diagnosed with fibromyalgia and live with neuropathic pain, both of which require costly medication. I was most recently prescribed Pfizer’s blockbuster drug, Lyrica, to treat the pain and symptoms of fibromyalgia. But when I found out it would cost $550 out-of-pocket each month, even with a discount card, it meant only taking a third of the dose my doctor recommended.
Caring for patients was my life’s work as a registered nurse. While I’d seen my patients struggle with drug prices, I began to see the issue firsthand in my own life when I was diagnosed with multiple sclerosis in 2003. When I was first prescribed Copaxone for my MS, it cost me $1,800 a month and wiped out my savings. I received grants every year for my medications from 2012 to 2016. Without the grants, I would be in the Medicare donut hole after just one month. When I was unable to get a grant in 2017, the same medication cost $6,000 a month and forced me to go off of it entirely for three months. I also went off my pancreas enzymes for 6 months, all because the cost was too high.
While off my medication, I began having difficulty with my cognitive function. I felt so frustrated as I developed these cognitive difficulties. I work really hard to keep my life in order and my memory intact even with MS. It was devastating. The prohibitive price of my prescription is the reason for these problems. If my Copaxone were affordable, it wouldn’t have been easy, but I would’ve been able to keep fighting to keep my life in order and protect my memory. The high price of my medication took that power away from me. I was left dejected, unable to get the care I needed, and powerless against my condition. Because of the drug companies’ greed, I lost something so valuable –– and I’m not the only one.
When I was 16, I experienced a trauma that left me with severe fibromyalgia and PTSD. At 19 years old, I was officially diagnosed and began taking prescription medication to manage my symptoms. One of the medications I take, Vyvanse, has made an incredible difference in my quality of life. Unfortunately, this relief comes with a steep price tag of over $1,000 a month. For the two years I’ve taken this medication, we’ve been able to afford it because of my husband’s insurance. But I’ve always lived in fear of what would happen if we were to lose coverage and have to pay the full cost of the drug.
This summer — in the middle of a terrifying pandemic — this fear became a reality. Due to a recent change in my husband’s employment, my family has been left without insurance for the last two months. We can’t afford any of the coverage options available to us, so we’ve been forced to pay for my prescriptions out of pocket until my husband’s new job begins.
Because of Vyvanse’s steep price, I made the difficult decision to stop taking the drug completely. There’s no generic alternative, so I’ve had to take a medication that doesn’t work as well. Instead of focusing on my health, I’ve had to worry about how I’ll cover the cost of my next prescription. And as an active member of the chronic illness community, I know my story is not unique.
I’m a mom to two children with type 1 diabetes. My daughter and my son were each diagnosed at 1 year old — they now are 4 and 1. We quickly realized that keeping people with type 1 functioning and healthy is incredibly expensive, especially because of the skyrocketing cost of my childrens’ insulin. When my kids turn 26, they will no longer be allowed to stay on my insurance, and they will face the high price of their insulin alone. Many parents of kids who need insulin have to caution their children from a young age to make life decisions based on affording their insulin including choosing their careers due to insurance coverage. This breaks my heart, that parents are literally telling their kids not to go after their dreams, all because they will be saddled with the unjust prices of insulin for the rest of their lives.
The drug pricing system is so broken. It needs to change, so parents don’t have to tell their kids which dreams to pursue. I won’t tell my children they can’t follow their dreams. Instead, I’ll fight hard to lower drug prices, so the price of insulin won’t ever dictate their very bright futures.
I’m a retired nurse, having worked with cancer patients as a nurse navigator for nine of my 25-year career. My job was to work with cancer patients to ensure they received the best treatment possible. After retirement, I was diagnosed with chronic lymphocytic leukemia, and later, lung cancer. My journey with cancer has not been easy. I had a thoracoscopy to remove the right lower part of my lung and will have to follow up for five years to ensure the cancer hasn’t returned. My CT scans have all been negative for recurrence of the lung cancer, but my leukemia still needs treatment.
My oncologist prescribed Imbruvica, a single-agent oral chemo/kinase inhibitor, to treat my leukemia. I don’t secure long-term funding to cover the astronomical cost of my prescription, I don’t know how I’ll be able to afford treatment. I spent my life working to make sure my patients had the best treatment possible. Now, I am terrified I won’t be able to obtain those same resources. As a retired nurse and cancer patient, I have a first-hand understanding of how our system works. Patients like me shouldn’t be denied access from receiving treatment because of pharmaceutical companies’ greed.
I live with rheumatoid arthritis, fibromyalgia, and bipolar disorder, and I’m advocating for affordable prescription drugs because I know what it’s like to live without. I’d also been taking Effexor and Lamictal for the past five years for bipolar disorder. My intention has always been to return to work and be a contributing member of society while living with these conditions, and my medications allow me to function and work toward that goal. But recently I have had problems affording my medication. I have been forced to think about what I would be willing to give up in order to have access to my drugs again. People shouldn’t have to choose between not having their medications or sacrificing other parts of their lives to afford them — and that’s why it’s so important to lower the price of prescription drugs now.
I’m 33 years old. For just over 20 years I’ve lived with Crohn’s disease, an incurable and chronic and inflammatory illness of the gastrointestinal tract. I also live with celiac disease. Affording my medications to manage my conditions is always on my mind. I absolutely have to maintain a job with sufficient coverage to pay for my expensive drugs. But the drugs I need are so costly; job to job, I live at the mercy of drug prices and worry about if and how I will be able to afford my next infusion or refill. I’ve had to wait for my paycheck to deposit before getting refills, ration my prescriptions, and stop taking my drugs altogether because of the prices.
When I was 12, doctors diagnosed me with Crohn’s Disease, celiac disease, and psoriasis. I take Remicade, an infusion drug administered via IV. Remicade costs around $13,000 a treatment — a price I know could be devastating to my life and y future.
I believe that no one should have to suffer because they cannot afford a prescription drug they need.
Since the age of 9, I have been living with type 1 diabetes. There was a time in my life when I experienced a gap in comprehensive insurance coverage. I was forced to take drastic measures in order to get access to the insulin I needed to survive. I happened to have a friend who was a nurse in a hospital. They often have patients who are prescribed a full vial of insulin and if the patient doesn’t take it home with them, the policy is to toss it. Instead of tossing it, she would pocket it and bring it to me. That is what kept me alive.
Without the insulin I needed, I could not properly manage my diabetes. Because of this, I now have the beginnings of retinopathy and diabetic kidney disease, which could cause me to go blind or need an organ transplant later in life. No person should have to live day to day wondering how they are going to afford the medicine that they need to survive
I live with multiple health issues, including asthma, an autoimmune disease, diabetes, and gastroparesis. On top of dealing with the sometimes debilitating symptoms of these conditions, I am also under immense financial stress because of them. The costs of my medications adds up. The blockbuster drug that really breaks the bank for me is my Humira. It costs $6,000 per treatment. Another medicine that really puts me out is my insulin. The cost of diabetes medicines is absolutely bankrupting.
I have to decide which medicines I can do without and which I can’t. I end up rationing my medicine, and that is like playing Russian Roulette with my health. Because of this, my conditions have worsened. I lost vision in one eye due to my diabetes. It is getting more and more difficult to remain active. I want to be able to live a happy and healthy lifestyle and not be so negatively affected by high cost medications.
Since the age of 10, I have also been living with Crohn’s Disease. Along with Crohn’s Disease, I have suffered from severe chronic migraines, arthritis, sacroiliitis, fibromyalgia, psoriasis, and chronic pain for as long as I can remember. Something they don’t tell you when you’re diagnosed: You may not be able to pay for your treatment. I am fortunate enough to have great insurance coverage, but I still remember the day I received a bill for a chemotherapy treatment I received. It was for $100,000. The number hit me in the chest. How could anyone afford that? I keep this bill as a reminder: The prescription drug pricing system is broken.
Since I had a benign brain tumor removed in 2012, I’ve had to take medications to prevent seizures. For years now, I’ve bought my brand name drugs from Canada simply because it’s much more affordable than getting them in the United States. I’m grateful that another country can help me with these medications that I have to take for the rest of my life, but it’s just too bad that I have to play this game.
Though I have benefited from Canadian drug prices, this might not be a permanent solution. It’s ridiculous that the United States subjects its own citizens to such high drug prices, and it’s even more infuriating that politicians take money from Big Pharma and have family members that sit on their executive boards. They’ve shown that they simply don’t care.
My name is Dr. Julia Blanchette and I live in Cleveland, Ohio. I was diagnosed with type 1 diabetes over 20 years ago and need insulin to live. I was always aware of the widespread unaffordability of insulin, but the financial burden of insulin became real for me while I was working on my Ph.D. in Nursing Science. At the time, I was still on my parents’ insurance since I had not yet turned 26 years old. In January of 2016, my parents’ plan switched from a non-high deductible plan to a high deductible plan and my individual deductible on this plan suddenly increased to $4,000.
These days, it’s incredibly difficult for young adults to gain financial independence to begin with. When you have a chronic condition with expensive medications, it becomes nearly impossible. Pharmaceutical companies’ greed not only hurts patients through the inability to access care, but also through the stress caused by these unreasonable prices that impacts our health outcomes. We need changes that place patients’ needs first so that we can afford our prescription drugs.
My name is Ashley Suder. I’m from Morgantown, West Virginia, and I live with lupus. The drug I take now, Benlysta, works well, but it’s especially expensive, priced at more than $35,000 a year — about $3,000 to $5,000 a month. Benlysta’s prices are so high I know I may not always be able to get this drug.
Going without expensive medications or substituting a different one because of drug prices has negatively affected me my whole life. Drug prices have made me sicker and far less functional than I would be if I had affordable access to the proper medications. I currently work as a nursing assistant, and at times almost my entire paycheck goes towards paying for my medicines. I’m constantly relying on samples from doctors to treat my condition because it’s just so expensive. It’s no way to live, but I don’t have a choice.
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The prescription drug pricing system in the U.S. is rigged against patients. We are fighting to change that.
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