Ginny Boynton

November 3, 2022

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.

Michael Nielsen & Jacki

November 3, 2022

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.

Don and Rose Kreis

November 3, 2022

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.

Mariah Erby

November 3, 2022

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.

Samantha Norris

November 3, 2022

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.

Hailey Adkisson

November 3, 2022

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.

Emily Byrn

November 3, 2022

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.

Meg Jackson Drage

November 3, 2022

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.


Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.

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