medicare telehealth is set to expire in 38 days.

Why doesn't anyone at Medicare know anything?

I discovered that as of April 1, 2025, I won’t be eligible for telehealth services unless I live in a rural area or meet a few other criteria that aren’t applicable to me. I am mostly homebound and rely on telehealth for the majority of my healthcare needs. This would be devastating. Here is the snippet from the Medicare website as of today:

I learned about this last year and messaged my doctor in November if she had heard anything: she had not. I decided not to worry about it because she didn’t seem concerned. This new rule was also on page 2 of “Medicare and You 2025: the official U.S. government Medicare handbook” that was mailed to me and every other person on Medicare.

Admittedly, I didn’t read all 128 pages thoroughly but even then: why aren’t we hearing more about this? It’s a huge change. Even the Medicare representatives I spoke with today seemed shocked. Despite it being in the big manual that they gave me.

I called two of my UNC based providers today and neither knew anything about this change either. One billing office said that they typically know first so that they can stop scheduling certain visit types. She suggested I call Medicare directly. Reasonable request.

Overview

So I called Medicare today to see if this was for real and spent 90 minutes on the phone talking to 3 separate people. I’m shook by what happened. If you are disabled and on Medicare, it’s important you know what they told me. I recorded the call but it *was too long* for my iPhone to manage (ha!) and the file won’t open so bear with me, I’m winging it.

If you wonder how this affects you, I’ll answer that at the end.

There is a summary at the bottom of those for those with low spoons who don’t want to read the entire post.

The Automated Voice

Automated Voice: “Briefly tell me the reason for your call today.”

Me: “Telehealth visits”

Automated Voice: “You’re calling about telehealth services, is that right?”

Me: “Yes”

Automated Voice: “Alright. Medicare covers certain virtual services to help you get Part B services you otherwise wouldn’t be able get from your home. You should check with your doctor to see if they can perform the service you need remotely. You can find this info and more at medicare.gov/medicare-coronavirus.”

That website takes you to information about the coronavirus vaccine. It does not include the word telehealth or virtual but does describe how to get the COVID vaccine in your home. Not helpful.

Human Number 1: The Representative

The Medicare representative had no more information that I did on the website so she read that to me: the same graphic I shared above.

She seem surprised by it’s contents too.

Medicare Representative: “Sorry, I’m just trying to see when this all changed.”

Me: “It will make it so that I can’t get medical care and that feels like a big deal.”

Medicare Representative: “Absolutely yeah. I literally can only see what you are seeing so I would like someone who can access a bit more information to help you with this.”

Ok.

Human Number 2: The Claims Lady

The claims lady and I spent about 30 minutes googling various things together. She definitely did not have any more information.

Claims Lady: “It does say that starting on April 1, 2025 to get most telehealth services, you’ll need to be in an office or medical facility blah blah blah in a rural area mumble mumble but you’ll be able to get the same telehealth services no matter where you live.”

Me: “So that is in conflict with what is listed on your website. I don’t qualify for any of the other exceptions. My primary care and specialists would be ineligible for virtual appointments. I am effectively homebound and that means I cannot access medical care aside from therapy and that’s a problem.”

I asked her about how they determine areas are considered rural “enough” or if there was a list of practices that were rural and she didn’t know. After a search she offered, “I see one in Windsor County, I mean Windsor, maybe Windsor City? And Henderson. Does that help?” No.

She told me I could begin an appeal process. When I pointed out that the Medicare appeal process requires a claim to be denied first, she agreed and went back to googling. We kept combing through websites together.

Me: “So I just want to make sure I’m understanding you correctly. There is no appeal process or exemption request for virtual visits at all?”

Claims Lady: “No. Maybe you could find a doctor to visit you at home?”

Me: “I’ve been struggling to find any doctor at all in my state who can treat my MECFS I’m not sure restricting myself to at home providers is going to work. My specialist really wants me to see a physical therapist who can treat me at home but has told me he hasn’t found anyone yet after searching for over a month.”

She found another website (OHMA division of HHS) and I pointed out that it also required a claim to be denied first as well as it starts with level 3 denials. She looked closer and agreed with me. Side note: I wonder if RFK Jr. knows what OHMA stands for given that he is now in charge of it?

Me: “I’m just trying to access what I need here. How am I supposed to get healthcare?”

Claims Lady: “I’m not entirely sure.”

Then she suggested I file appeal to Medicare through the Office of Civil Rights Southeast Region at 800-368-1019. At that point, I was kind, but direct.

Me: “You’ve been very helpful but because this deals with my access to healthcare, I want a real answer, not your best guess. Respectfully, I don’t think you know the answer for sure. Is there someone else I can speak with?”

She understood and sent me to her boss.

Human Number 3: The Boss Lady

We recapped, although to their credit, they did keep notes and I didn’t have to start over. She wasn’t aware of these changes either and had no new information either.

Boss Lady: “I haven’t heard about this. I’m surprised more people haven’t called about this.”

Me: “My doctor doesn’t have info. I’ve spoken to three people at Medicare today and no one knows. You can see why it’s unnerving because this is my lifeline to getting medical care.

She also offered me the number of Office of Civil Rights as well as a number to some quality assurance people with the acronym “QIO” at 888-317-0751 but didn’t explain how they could help. In the meantime, I had pulled up the civil rights complaint form and read it out to her.

Me: “It says here to describe the acts of discrimination and asks me whether I’ve tried to resolve them. I suppose this phone call proves I tried to resolve them first, would you agree?”

Boss Lady: “Yes. But you haven’t been discriminated against yet.”

Me: “Well I’ve explained to you that I’m disabled and cannot travel to the doctor. I’ve asked for accommodations like an exception to continue virtual care so I don’t worsen my condition myself trying to get to the doctor. You’ve told me that isn’t an option. You’ve offered no alternatives. If there is no path to obtain something accessibly, that’s already discriminatory.”

Boss Lady: “Yeah I guess so.”

I asked to speak to someone who might know more and she said no one else did. I pointed out that someone must have decided to make that change and print all those new 2025 Medicare guides. Someone must know something. Can I speak to them?

Boss Lady: “I’m sorry but this is just a general information line. We don’t know.”

I just gave up and got off the phone. A survey asked me if my problem had been resolved on a scale of 1 to 5.

So who is responsible?

That led me down a google rabbit hole of my own. As I type this, I have about 25 browser tabs open and spent an afternoon trying to figure this out.

It appears as if Congress was ready to end all telehealth at the end of 2024 but The American Relief Act of 2025 that passed at the eleventh hour extended them for 3 more months, a consolation prize for what could have been a much longer extension. (That bill also funded a bunch of unrelated things like SNAP administrative benefits and farmer relief funding.) My best guess is that it was related to whatever they passed to avert the government shutdown right before Christmas.

In addition to the American Medical Association, a group called The American Telehealth Association lobbies for telehealth access. It was the most helpful site I found and they posted this on their website today:

So they know about this.

There is also a bill introduced by Mike Thompson (D-CA) called CONNECT for Health Act of 2023 that would expand telehealth benefits and and provide and waive even more restrictions due to any public health emergency. It’s been stuck in Congress for about 18 months so chances are good it won’t pass by April 1. But in theory, it is also a path to giving us access to telehealth.

So that means we are waiting on presidential or congressional approval? I guess? I’m a scientist and a writer, exactly how all that will happen is above my pay grade.

Why does virtual care matter so much?

Medicare administers health insurance for those over 65 and those who qualify with a disability. Typically, these populations are less physically mobile and less able to drive themselves, making virtual visits an important way to access medical care at all. During COVID, telehealth expanded widely.

Another reason telehealth matters is that the Medicare population is at higher risk for infectious diseases. Masks are not a mainstay of hospitals and doctor offices so it can be pretty risky for us to see a doctor in person. The risk of picking up an illness during a telehealth visit is zero. When you have cancer, lung disease, heart condition, or a weaker immune system, that can be a life or death choice.

We are also often too sick to visit the doctor when we most need them. Sometimes speciality visits are too far away to access and telehealth closes that gap. While some testing like a mammogram or colonoscopy can only be done in person, simple visits at home are about 90% as effective as in person visits. Telehealth can be lifesaving.

Lastly, losing telehealth means risking my disability benefits. Anyone on disability is monitored and can have their case reviewed at any time. If someone suddenly quit visiting the doctor for their health condition, disability may decide that they must be feeling well again and have stopped being disabled. Without the continued documentation of how the disability is impacting someone’s health, a judge could decide they no longer qualify for benefits and end them. Not going to the doctor at all is not an option. If telehealth ends, I’ll have to ration my care and risk having my condition relapse by overexertion. Or risk not having care.

Why haven’t we heard more about this big change?

Maybe because there is an assumption that Congress will deliver at the last minute again?

Maybe because the disabled and elderly are famously known for struggling to care for themselves and tend not to be the ones with the energy for staying on top of the specific ways the government is fucking them over.

Maybe they don’t want us to know until it’s too late? This is going to be very unpopular on both sides of the aisle so I’m hoping that we will get lucky here.

Other than that, I don’t know. This feels like a big deal and even a targeted google search left with me more questions than answers. Which his concerning because ending telehealth benefits for vulnerable populations is nothing short of eugenics if it will hasten our deaths. And make no mistake: for some people, it will.

But that won’t affect me, will it?

If Medicare drops telehealth coverage, it’s very, very likely your employer based health insurance will follow close behind. So this can affect you too.

As long as Medicare is covering telehealth, your access to it has much better odds.

That’s directly from the playbook of authoritarianism too. What they do to disabled people, they will eventually do to you.

TL;DR: Brief recap for those with low spoons:

Telehealth benefits for Medicare patients are slated to end on March 31, 2025 for most visit types besides mental/behavioral health and in most geographic areas. There are limited exceptions.

I spoke with 2 doctor offices and 3 Medicare reps today. None of them had heard about this change or had much to offer to help. Currently, my best bet is to file a civil rights complaint ahead of time or wait until my first claim is denied and appeal it.

It appears as if several groups including the well known American Medical Association are lobbying Congress to extend telehealth benefits. It’s unclear whether that will be successful. It’s also unclear to me (a layperson) if the new Department of Government Efficiency is going to target Center for Medicare and Medicaid Services and if telehealth will be affected by those cuts.

So once again, this is fine.

As always, I’ll keep you posted when I learn more.

I’m open to any resources or expert opinions here. There is a solid chance one of you knows more about this than Medicare does! Hearting this post will improve the odds that someone on Substack with those answers will find us. I’m hoping we can find that person!

P.S. If you need a quick palate cleanser after all this nonsense, go enjoy some funny memes hand picked by me to take the edge off. Happy Friday!