Living with a chronic illness like multiple sclerosis (MS) brings a unique set of challenges, and thanks to medication, I have been able to improve the course of my disease and keep it at bay.
At every step of my journey, I’ve been reminded of how my ability to live and function rests on my ability to afford my prescriptions. Medications cannot improve lives though, if people cannot afford to access them.
This is why I support the Prescription Drug Affordability Board (PDAB) that has been proposed in Michigan. Legislation being considered right now would create an independent body of experts with the ability to set upper payment limits (UPLs) on prescriptions rather than price caps. This board would finally bring transparency to this process and bring down the cost of these life-saving drugs by researching, reviewing and establishing UPLs on the most expensive prescription drugs.
The PDAB would be a game-changer for patients like me.
Despite having employer-sponsored health insurance, I have had to make difficult decisions, some at odds with my doctor’s recommendations because of the high cost.
When I was diagnosed 12 years ago, I was initially prescribed Betaseron, a self-injected disease-modifying therapy. After a year, I transitioned to Gilenya, a daily pill, which I was on for six years. I then started Ocrevus, a twice-yearly infusion, which I was on for a year. With each transition came a new price range.
Betaseron and Gilenya both have extremely expensive annual manufacturer prices, and despite being employed and having health insurance, I didn’t feel secure. I knew that jobs could come or go with the swing of the economy, and with them, health insurance. Because of that I felt forced to always hedge my bets in case of a rainy day.
First, I didn’t take my Gilenya as prescribed. Instead, I skipped days, so that I could have a six-month surplus in the event something happened to my job. Next, I was given a choice of two medications due to the progression of my MS. My neurologist recommended one, but I chose the other, Mavenclad.
I only chose the medication not recommended by my doctor because I thought this one might yield the remote possibility that I may not have to be on disease-modifying therapies again. This would mean I wouldn’t have to worry as much about having an unexpected lapse in employment, and subsequent affordability issues related to the disease modifying therapies.
Skipping doses of medications and making decisions out of step from my neurologist due to cost, as opposed to health outcomes, should never be the norm. Sadly though, for many living with chronic illness, it is.
In a recent study done by the National MS Society, over 40% of people living with MS said they were altering their treatments due to cost, just like me. No one should have to make this kind of decision.
That’s why a PDAB in Michigan would be life-changing. It’s built to help people facing the high cost of needed prescriptions. Nonpartisan leaders and experts would be appointed to the board and all members would be required to follow policies to ensure transparency and accountability.
I urge lawmakers in the state House to follow the Senate’s lead and pass this legislation, which Gov. Gretchen Whitmer called for in her fall address. People like me need to know they’ll be able to get the life-changing medication they need when they need it, not just when they are able to afford it.
Pete Rigney is a resident of Lakeview, Mich.