It’s that time of year for anyone on Medicare: open enrollment (October 15 to December 7), when you get deluged with flyers saying “pick me,” and you need to choose your plan (specific insurer) for the coming year. This year, there are a couple overall changes for the better, in terms of capping out of pocket payments and making the copay more manageable.
First a quick review: Medicare has several “parts,” each of which covers different things. Two of those parts (B and D) potentially cover drugs. In simple terms, Part B covers drugs that are given in the hospital or doctor’s office, and Part D covers drugs that you take at home. Some of us get burosumab through Part B (injections are done at the hospital or doctor’s office, or by a visiting nurse), and others get it through Part D (self-injected).
The rules relating to coverage and copays are different for the two parts, and to some extent may vary from insurer to insurer, even within Medicare, subject to the rules of the Social Security Administration. Fortunately, many of us get financial assistance for the out-of-pocket expenses, but it’s still nerve-wracking to think of that amount of money, every single year, just so you can be minimally functional. Plus, there have been some hiccups in that financial assistance in the last couple of years, so while there’s no reason to worry about it too much, it’s always possible that the assistance might not be available in the future. In any event, it’s good to have a backup plan to protect you against catastrophic copayment expenses.
The good news is that next year, thanks to the Inflation Reduction Act, the out-of-pocket cap on Medicare Part D expenses will drop from $3,300 to $2,000 for 2025! There’s also a built-in payment plan, allowing patients to split that cap into monthly payments instead of having to come up with the full $2,000 as soon as it’s incurred, which with burosumab is in January! I know that’s still a lot of money, but it’s somewhat more manageable, and makes it less likely that a patient might have to make the hard decision about whether they can afford to be even minimally functional.
Note that this cap and the payment plan ONLY apply if the burosumab is being covered by Medicare Part D (prescription drugs), and not Part B (injections at the doctor’s office). There’s a separate cap on out-of-pocket expenses under Part B coverage, but it hasn’t been changed, and it may vary from plan to plan, so make sure you know what that cap is when you choose/renew a Medicare plan. Just as a point of reference, my current cap on out-of-pocket expenses under Part B coverage is almost $5,000, and is incurred in full with either my first or second set of injections each year. It won’t be capped by the new law, and it won’t qualify for the payment plan. If not for the financial assistance plan, I’d have to come up with that money all at once.
If I could self-inject and thus switch the coverage to Part B, with the $2,000 cap (and the payment plan), it would be a lot less expensive for everyone, and I wouldn’t have to worry about changes to financial assistance. But for that to happen, a clinical trial would have to be undertaken to prove that XLH patients are capable of self-injection — self-injection is apparently approved on a disorder-by-disorder basis, not a treatment-by-treatment basis, so no one has ever sought to prove that XLHers can self-inject. (Yes, I know that some patients on private insurance are allowed to self-inject, but 1. to my knowledge, Medicare doesn’t allow it, 2. it varies among private insurers from insurer to insurer, because it’s an off-label administration, and 3. it’s a case-by-case authorization, which makes for uncertainty, since the insurer can always change its mind.)
If you’re on Medicare and would like to know more, there’s a good explainer of the changes at the National Organization for Rare Disorders (NORD) website. I highly recommend checking out that explainer, which has extensive FAQs and links to other resources. It also contains useful information for anyone who’s picking a Medicare plan for the first time.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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