Choosing the right Medicare plan when you live with a rare disease

Finding the right Medicare plan can be downright daunting. There are so many options, often with only slight variations in coverage, that it can make your head spin. To make things even more confusing, many plans have nearly identical names. Add in the fact that Medicare itself is evolving — with ongoing changes to coverage, formularies, and benefits — and it’s no wonder so many of us feel overwhelmed when open enrollment rolls around.

But here we are again: Medicare Open Enrollment season. Between Oct. 15 and Dec. 7, those of us who are either 65 or older or who have a qualifying disability have an important decision to make: choosing the plan that best fits our personal health needs.

For people living with rare or complex diseases like ANCA vasculitis, that choice can be even more critical. Our care doesn’t fit neatly into a one-size-fits-all plan. We often need multiple specialists, frequent lab work, and, perhaps most importantly, reliable coverage for the often multiple medications that keep our conditions stable.

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Lessons learned the hard way

When I moved to Michigan recently, I had to start fresh and choose a new plan. Medicare Advantage plans are geographic-based, so what worked in my old state didn’t carry over. Because I’m under 65 and qualify for Medicare through disability, I rely on Medicare Advantage for the additional benefits it offers — things like dental and vision, but also coordination of care and access to extra services that original Medicare doesn’t include.

Even knowing the system, it is still a mind-bending exercise that uses a whole lot of “spoons.” Formularies (the list of drugs a plan covers) can dramatically vary from one plan to another. Some medications require prior authorization, some have step therapy rules, and others fall under Part B instead of Part D depending on how they’re administered.

For people with rare diseases like granulomatosis with polyangiitis, microscopic polyangiitis, eosinophilic granulomatosis with polyangiitis, IgG4-related disease (IgG4-RD), or myasthenia gravis (MG), these details matter. A small difference in coverage could mean the difference between accessing treatment smoothly or facing delays and denials.

Help is on the way

The good news? You don’t have to figure it out alone.

On Oct. 30 at 12 p.m. ET, a free livestream event aims to specifically help people with rare diseases make sense of Medicare plan selection. The session will feature Dana Saffel, a registered pharmacist who understands the unique challenges rare disease patients face.

Saffel will walk us through how to:

• Use the Medicare Plan Finder tool to confirm your medications are on the plan’s formulary
• Understand the difference between Part B and Part D, which is especially important for those receiving infusion therapies
• Check coverage for infusion medications and related administration costs
• Navigate prior authorization and what to ask before enrolling in a plan
• Identify what to do if your medication isn’t covered or is placed on a higher cost tier

She’ll also use examples that directly reference different types of vasculitis, as well as IgG4-RD and MG, so that the conversation is grounded in real-life rare disease experiences.

Join the conversation

Choosing a Medicare plan can feel like navigating a maze, but with the right guidance, it doesn’t have to be. The Oct. 30 livestream is a great opportunity to ask questions, see real examples, and leave feeling confident in your choice.

So grab your list of medications, make a note of your infusion schedule, and tune in. Let’s take the confusion out of coverage together.

Don’t miss it — your health (and peace of mind) is worth the hour.

Note: ANCA Vasculitis News 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 ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.