Advocating for Congress to save Medicare’s telehealth coverage

It’s become exceedingly difficult for my husband, Todd, to leave our home now that he’s in an advanced stage of ALS. His neck is weak because of disease progression, and he uses noninvasive ventilation nearly all the time. To make matters worse, we live in a northern climate with cold winter months and over 200 inches of snowfall per year. Over the past few years, Todd has left the house only for doctor and dentist appointments.

In 2023, during his last office visit to his primary care doctor, she told us that her practice offered telehealth, and for Todd’s next appointment, he could meet with her from the comfort of our home. That was such a relief to hear, because it’s so much easier and less tiring for him.

Todd has since had a few telehealth appointments, and Medicare paid most of the cost.

For Todd’s last doctor’s appointment a couple weeks ago, we were especially relieved to have a telehealth video call, because Todd was quite sick and we were having blustery winter weather.

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To visit Todd’s doctor in person, I would’ve had to get him bundled up in winter clothes, load him in his accessible van, navigate down a snow-packed driveway with potholes, bounce over a mound of packed snow formed by snowmobiles crossing over our country road, and drive to town, hoping Todd’s van wouldn’t get stuck in the snow.

Todd’s neck is so weak now that he wears a Headmaster Collar so his head doesn’t bounce around, but the van ride is still uncomfortable.

An in-person doctor’s appointment is exhausting for Todd, especially in the winter, and there’s really no benefit for Todd’s doctor to see him in person.

But Medicare’s coverage of telehealth is set to expire after March 31.

Protecting our benefits

Medicare’s coverage of telehealth temporarily expanded during the COVID-19 pandemic. This coverage would continue in a few scenarios, but unfortunately, ALS isn’t one of the exceptions.

Certainly, people who are paralyzed and who are already qualified to receive home health services should also be able to have telehealth appointments with their doctors. The doctor can order in-home nursing, physical therapy, and occupational therapy to physically assess the patient’s condition.

Prior in-office appointments and at-home assessments have already determined that Todd has no activities of daily life, no strength left to test, and no prospect for improvement. His telehealth appointments consist of us explaining Todd’s particular health challenges at that time, and the doctor offering potential solutions. Nonetheless, during the video call, the physician can see Todd through our camera, and during the last call, she even noticed how he was struggling to breathe.

Todd wrote a letter to our congressman asking him to save Medicare’s telehealth coverage.

“Save telehealth,” he wrote. “Medicare coverage of telehealth is set to expire starting March 31. Telehealth is an invaluable service for rural, homebound, and severely disabled patients.”

I also called our congressman’s office and spoke with someone there about the situation.

If you live in the United States, please reach out to your representative and ask Congress to act.

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