If you live in the U.S. and your (or a loved one’s) health insurance is Medicare, you need to be aware (but don’t panic) that coverage for telehealth visits may end on September 30, 2025, unless Congress takes action. Coverage for telehealth was required during the pandemic for obvious reasons, but the legislation had an expiration date, the original of which has passed. They’ve extended the date, but Congress is so dysfunctional right now that I’m not at all confident they’ll extend it this time. Ideally, they’d pass legislation to make the current rules allowing telehealth permanent. (Keep an eye on the House’s H.R. 4206 that would do this, but as of the last time I checked, it’s sitting in committee with no timetable for any action on it, and it would have to also be passed by the Senate, where it’s been filed as S. 1261.)
Here’s a link for more information, which should be updated when/if the deadline is extended. Or check out this fact sheet.
I hope it will be extended, but if not, it could be catastrophic for the rare disease community. My endocrinologist requires a four-hour round-trip to see in person. I consider myself lucky to have an XLH expert within that range, but I much prefer telehealth to save myself that trip, when all the endocrinologist does is review my labs, order the next set of labs, and tell me to keep doing what I’m already doing.
A lot of XLHers don’t even have a qualified expert within a reasonable commute, and I’m sure the same is true for patients in all the other seven-thousand-plus rare disease communities. For these patients, denying telehealth will have one of three consequences, none of them good for their health: 1) they’ll stop getting treatment, because they can’t access a competent expert in person, 2) they’ll switch to a local but unqualified clinician, with potentially bad outcomes, or 3) they’ll incur potentially significant costs (time and travel expenses) to go an unreasonable distance to continue with a qualified clinician.
If you’re not on Medicare, you may eventually lose access to telehealth too, just not quite so abruptly. With the establishment of appropriate, safe platforms for telehealth, its use in appropriate circumstances (like with specialists who mostly need to review test results, rather than physical exams) is such a no-brainer to ensuring broad access to qualified clinicians that the only reason I can see for terminating telehealth is that policy-makers (influenced by for-profit insurers’ lobbyists) think it’s a way to save money by discouraging patients from getting treatment. It’s based on the false assumption that most patients who use telehealth are hypochondriacs who run to the doctor for every little imaginary symptom, and if patients had to incur some cost (travel expenses and time), they would visit the doctor less often. While that may be true for some small number of patients (and presumably that could be addressed through some sort of flexible limit on frequency), it’s definitely not true in the rare disease community, where we’re more likely to avoid/postpone medical appointments than to schedule too many of them.
As long as insurers believe that telehealth is costing them unnecessary money, they’re going to be looking for ways to block it. Once Medicare stops paying for telehealth (assuming it does), you can anticipate private insurers to follow its lead, either by cutting coverage completely or making it more expensive (overall premiums and/or copays).
So keep an eye on what happens in the next few weeks. With luck, the deadline will be extended, so telehealth coverage can continue. I’ll let you know if I hear anything definitive.
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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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