The Week in Review in Prescription Drug Pricing

Welcome To The Week In Review.

1. $158,000? “There Is No Justification”

• Last week, the Food and Drug Administration approved Relyvrio, a drug combination to treat amyotrophic lateral sclerosis (ALS), a progressive and fatal disease of the nervous system that affects tens of thousands of people in the United States. Relyvrio is not proven to work, yet the company that makes the drug, Amylyx Pharmaceuticals, set an annual price of $158,000. Independent reviewers say the upper limit of a reasonable price should be a maximum of $30,700 with the important caveat: “if the therapy actually works.” This week, experts and patient advocates are calling out this latest example of Big Pharma greed. “We’re not talking about [Amylyx] setting a price to recoup their investments or anything like that,” said Stacie Dusetzina, associate professor of health policy at Vanderbilt University Medical Center. “This is basically taking advantage of the fact that we allow the price to be what the market will bear.” P4AD’s David Mitchell released a statement saying, “There is no justification for pricing Relyvrio, a drug that has not been proven effective, at $158,000. It is a poster child for what is wrong with drug pricing in America and why our system must be reformed to arrive at appropriate prices that maximize accessibility and affordability for drugs that are shown to be both safe and effective.” — (The New York Times, Common Dreams, Politico, P4AD)

2. New Reform In Action

• The very first provision of the Inflation Reduction Act went into effect last Saturday Oct. 1. Drug corporations will now have their drug price hikes assessed against the rate of inflation. “Pharmaceutical companies that raise the price of their products more than the rate of general inflation will have to pay Medicare a rebate for those outsize price hikes,” explains AARP’s ​​Peter Urban. “The provision is designed to help reduce the size and frequency of prescription drug price increases.” A new report released by the Department of Health and Human Services (HHS) says that Big Pharma raised the price of over 1,200 prescription drugs past the rate of inflation from July 2021 to July 2022 — price hikes that would likely now be subject to steep penalties. This reform will be life-changing for patients. “The Inflation Reduction Act is really historic legislation that is going to save millions of people in America millions of dollars over time,” P4AD’s David Mitchell said on iHeartRadio’s podcast, It Could Happen Here. — (AARP, The Hill, Florida Politics, Ohio Capital Journal, Bangor Daily News, Cleveland.com, Colorado Times Recorder, It Could Happen Here)

3. Time To Tackle PBMs

• Lina Khan, chair of the Federal Trade Commission (FTC), vowed to use all of the tools at the commission’s disposal in its investigation into the business practices of pharmacy benefit managers (PBMs) — that includes law enforcement and rule-making. Over the summer, “the FTC unanimously voted to launch a probe into the business practices of PBMs and how they influence drug prices and the pharmacy business.” The investigation is a much-needed next step to scrutinize PBMs and ensure they work for patients. — (Axios)

One more thing: We wrapped up our digital campaign about the Inflation Reduction Act by highlighting how we plan to continue to work to reform our drug price system for all patients.

Have a great weekend, everyone!

My name is Brenda and I am a retired Tucson police department detective and middle school science teacher. I am also a small business owner who sells specialty soaps and seasonal wreaths — in large part to help pay for the very expensive medications. I have asthma and am also allergic to both bee stings and latex. I am supposed to carry an EpiPen with me at all times to avoid hospitalization for my severe allergies. I am 66 years old and recently switched to Medicare. I can’t believe how expensive my EpiPens are on Medicare. Because of the price, I have a difficult time refilling my prescription. There have been times where I could not afford to carry an EpiPen and ended up hospitalized with anaphylactic shock after being exposed to latex. It is unfair that seniors like myself should have to worry as much as I do to afford our prescriptions. I shouldn’t have to spend my retirement praying that my small business sales go well so that I can finally purchase my EpiPen. It isn’t right.

I have been a Type 1 diabetic for many years. I’ve had to ration my insulin in the past due to high prices. On several occasions I starved myself and took less insulin than I was supposed to so my vial would last longer. Unfortunately, even doing that, I would run out of insulin. I wasn’t involved in diabetes groups and knew no other diabetics. I don’t even think there was a name for rationing insulin at the time. I thought I was in a unique situation, so I didn’t reach out for help. All those years of rationing insulin have caused diabetes retinopathy, insulin resistance, and long-term complications that never would have occurred if I had access to affordable insulin. My health is what paid the price.

I’m 60 years old, work as a contractor for a life science company, and live with emphysema. Over the past few years, the cost for my inhaler has ranged by hundreds of dollars depending on my insurance plan. Lower drug prices for long-acting inhalers would bring peace of mind to me and countless other patients across the country. Having predictable costs over time makes budgeting easier, savings more robust, and we all know less stress makes for a happier public. 

My name is Janet Schwartz, and I’m a retired nurse from Newark, DE. I’m 74 years old and was finally diagnosed with multiple sclerosis at 59 years old after experiencing symptoms, like nerve and joint pain, for a very long time. I also have type 2 diabetes. The price of my medications has tarnished what are supposed to be my golden years. I have adult children and I don’t want them to have to pay for my drugs and worry about me. I didn’t have children because I wanted to be taken care of in my old age. I just want them to be happy. I just want to afford my prescription drugs.

My name is Barbara Bultman. I have 8 kids, 19 grandchildren, and 8 great-grandchildren. When I’m not with my family, I love to spend time with my longtime group of girlfriends. I have issues with my lungs, so my doctor wrote me a prescription for multiple inhalers. I never expected to have to worry about the cost of medicine, but it’s now something that is constantly on my mind. I ration my inhaler and it affects my health and my lungs. I get scared and it causes stress, which only worsens my health. Life is hard when you’re sick and aging. I hope every day that I will receive help and be able to afford my medication.

My name is Tammy L. de la Cruz. I live with a rare autoimmune disorder, and to treat my condition, every week I receive Intravenous Immunoglobulin (IVIG) treatment. I would become paralyzed without this treatment, which terrifies me. I have eight grandkids and love helping them out. I volunteer with my local food pantry and with a social service agency that serves those that have intellectual and developmental disabilities. I love coloring, reading, and up until a few months ago I attended college full time –– and thanks to my IVIG treatments, I was able to walk across the stage to get my BS in Psychology. Not being able to afford my treatment would have made these enjoyable hobbies more difficult, if not impossible, for me. I found a grant at the 11th hour, saving myself from paralysis. I know the future of this grant funding is not guaranteed. People with illness shouldn’t have to work so hard to fund extreme drug costs; it’s cruel. Patients like me shouldn’t have to rely on grants to cover the cost of our treatments. We shouldn’t have to deal with the uncertainty of constantly changing costs and the concerns of what will happen if we lose access to our grant and therefore our prescriptions. No one should have to experience the feeling of hopelessness I felt when I thought I wouldn’t be able to afford the treatment I needed. It doesn’t have to be like this. We need changes to our system that make prescription drugs more affordable.

My name is Kolton Chapman.  I am a transgender man living with a chronic illness. My life hasn’t always revolved around my illness –– I am an artist who enjoys coloring books and helping people design logos and other items to help with their businesses.

I was diagnosed with ulcerative colitis and moyamoya disease, a rare blood vessel disorder.

My main priority should be focusing on my health –– not on bills and making ends meet. But unfortunately, with high prescription costs, their prices and my medical debt always factor into my decisions.

My life path has been completely altered by expensive prescription drugs and drug company greed. I often feel like I’m behind all of the people my age — even people younger than me — because I’ve had to focus my time and money on staying alive. We shouldn’t have to give up on pursuing a college education because of crippling medical debt. We shouldn’t have to make every financial decision with the cost of prescriptions and medical debt in the back of our minds. Things can be better if our leaders rein in drug companies’ greed and make the needs of patients like me the priority.