The ending of my Medicare prescription drug plan has left me scrambling

For seven years, my Medicare prescription drug plan, Aetna’s SilverScript, has been one of the few things in my life I haven’t had to think much about. It simply worked. This fall, I learned that it will no longer be available in my state in 2027.

Just like that, a plan that has quietly helped to hold my care together is disappearing, and I have to find a replacement during open enrollment, which runs through Dec. 7 — one of the busiest and most confusing times of the year. I’ll be honest, it’s stressful and scary. Change is hard for anyone, but when your health depends on a very specific combination of medications, it’s much more than an inconvenience.

Every day, I take 20 prescription medications, some multiple times a day, along with seven over-the-counter vitamins and supplements. I live with cystic fibrosis (CF) and am post-double-lung transplant. Even before this unexpected change, my finances were already extremely tight.

Now I’m facing a long list of unknowns. What will my monthly premium and deductible be? Which medications will a new plan cover, and which will I have to pay out of pocket? And what about the IV medications I may need from time to time? Each question comes with a real dollar amount attached. For a budget already stretched thin, the answers matter enormously.

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I’m grateful for the Cystic Fibrosis Foundation’s (CFF) Compass program, a wonderful resource staffed by knowledgeable people who help those of us living with CF navigate insurance complexities and compare plans. But it’s open enrollment time, and Compass is understandably extremely busy, which means the wait is a little longer than usual.

While I wait, I’ve started working through the Medicare.gov plan finder on my own. It didn’t take long to hit a wall. Two of the available plans don’t cover insulin or lansoprazole, two medications I take. Without coverage, the out-of-pocket costs would be exorbitant. It’s surprising there are plans out there that don’t cover insulin in this day and age.

That’s the reality of choosing a prescription drug plan: One can look affordable on paper until we compare it with the medications we actually need. The monthly premium is only part of the equation. We must check each medication against each plan’s formulary, one by one, along with any coverage tiers, restrictions, or other requirements that could affect access and cost.

For people living with CF, and anyone else managing a chronic illness, prescription coverage isn’t a perk. It’s the foundation of so much of our care. For those of us who are post-transplant, the stakes can be even higher. Antirejection medications are essential to protecting a transplanted organ and preserving the life we’ve been given. A gap in coverage or a medication suddenly priced out of reach isn’t an abstract worry — it can threaten the very gift of a second chance.

I’m sharing my experience because I know I’m not the only one facing these decisions. If your prescription plan is changing, too, and you’re feeling anxious or overwhelmed, please know that you’re not alone.

What I’m doing in the meantime

Here’s what I’m doing, and what I encourage you to do as well:

• Make a complete medication list. Include every prescription, dosage, and frequency, plus over-the-counter medications, vitamins, and supplements.
• Check every medication against each plan’s formulary. Don’t compare plans based on monthly premiums alone. Consider deductibles, copays, coinsurance, coverage tiers, and any applicable restrictions.
• Reach out to CFF Compass early. Their guidance can be invaluable as you navigate insurance choices. During open enrollment, expect longer wait times, and start gathering your information while you wait.
• Take the time to choose carefully. Medicare’s open enrollment period runs through Dec. 7. Use the time to compare your options and make sure your plan meets your needs and your budget.

For some people, choosing a new prescription drug plan may feel like a routine administrative task. For those of us who depend on a complex regimen of medications to stay alive and healthy, it’s something much bigger.

Our health, financial security, and peace of mind are on the line. We deserve coverage that works for the lives we actually live, not just plans that look good on paper.

If you’re navigating this process, I’m right there with you — one medication, one formulary, and one decision at a time.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.