My name is Andrea Penny Greenblatt, and I’ve had psoriatic arthritis for over 35 years. I’m also an Arthritis Foundation Advocate.
About four years ago, I joined the Medicare program and faced unexpectedly high out-of-pocket costs on Medicare Part D. Last March, when I participated in the Arthritis Foundation’s Advocacy Summit, I told as many people as I could about my challenge. At that time, there wasn’t much anyone could do since no solutions were being discussed. But I’ve been reading about what Congress is now trying to do to cap out-of-pocket costs, and I wanted to share my story so more patients like me don’t have to suffer.
Since enrolling in Medicare, my overall medical expenses are less than when I was on private insurance. Premiums are lower, and I haven’t had much trouble seeing any doctors and providers. Unfortunately, my initial transition into the program was difficult due to high out-of-pocket costs for my biologic under Medicare Part D. I initially decided to enroll in Part D because my biologic was an injectable medication that was already working well for me, and I didn’t want to disrupt any of my care.
I quickly learned that paying for the Part D drug was going to be financially challenging. The bottom line was that I simply could not afford the coinsurance for the drug that was treating my arthritis. The coinsurance was almost 40%! Exacerbating this issue is the fact that individuals enrolled in Medicare are not allowed to benefit from any form of copayment assistance, which I had been able to access with my prior employer.
After discussing the prohibitive costs of the Part D drug with my doctor, we agreed I should consider transitioning to a physician-administered drug under Part B. I was nervous about abandoning the Part D drug, which had worked so well for me. It turns out my concerns were well-founded: After initial treatment with the Part B drug, I had unpleasant side effects. Since that infusion didn’t work, my doctor decided to try a second infused drug. The second drug seems to be helping, but it’s the only other alternative medication available, and I’m worried it could fail, too.
It’s disappointing Part D doesn’t have any true out-of-pocket cap to limit what individuals pay for medication. I remember my employer health insurance was the opposite: Before enrolling in Medicare, I had an annual limit on my share of costs. Medicare Part B has been a lifeline and helped protect me from financial hardship. I’m fortunate to have a supplemental plan that limits my expenses and helps keep costs more predictable throughout the year.
The addition of an out-of-pocket cap in Medicare Part D is overdue. This change would make Medicare even more successful for me and millions of other Americans. If I had remained on the Part D medication four years ago, my monthly costs would have averaged $600-$700 per month. That’s simply too high for someone on a fixed income, especially when my costs would not be capped each year. My income today only allows for copayments of $200 at the most for my arthritis medication. In addition to an annual out-of-pocket cap, policymakers should consider ways that patients like me can spread costs throughout the entire year. That would help with affordability challenges and might allow me to go back to my Part D drug, which had worked so well to keep my disease at bay when I first joined Medicare.
There are days when I wish I could have afforded the Part D drug that was making a difference in my health. It turns out I’m not the only one: The Arthritis Foundation recently completed a survey showing that other arthritis patients have experienced the same thing – forced to transition from Part D to Part B due to affordability issues. If you’ve had a similar experience on Medicare, sharing your story is so important. Your story helps raise awareness about access and affordability issues across the country. Here are some actions you can take:
- Share your story through the Arthritis Foundation! Your experience keeps us informed and helps us advocate together. The Live Yes! Arthritis Network brings us all together.
- If you are unable to afford your prescription drugs, patient assistance programs may help. Visit the Arthritis Foundation’s Access to Care toolkit for help navigating all aspects of health coverage.
- Think about your options during open enrollment this year – the Arthritis Foundation has a great blog from one of their Helpline social workers talking about important tips and tricks to make sure you choose the right plan.