How to Get Medicare to Treat Long COVID

Most mild and even more severe COVID-19 and related infections last no more than a couple of weeks. But some people — up to 20% of people who survive the initial infection — experience much longer-term effects, sometimes lasting for months or more.

The ailment is informally known as "Long COVID" and those who experience it call themselves "long haulers." Symptoms can vary from person to person, and that can make it difficult for patients to get efficacious medical care.

People who are enrolled in Medicare Advantage plans with narrow provider networks or who live in areas where there aren't a lot of health care providers to choose from can find it frustrating to get treated for Long COVID, but it can also be a problem for urban dwellers.

Caroline Leavitt, a successful novelist, and her husband Jeff Tamarkin, a historian who specializes in music and popular culture, both got COVID last July. The couple, who live just outside New York City, are original Medicare enrollees and have a Plan F supplement, which is considered the most generous. But even they had trouble getting access to knowledgeable treatment.

"It was horrifying," Leavitt says. "I had a constant hacking cough that ended with vomiting. I was told by my doctor that there was nothing to do."

Her psychiatrist, whose specialty is far removed from treating viral diseases like COVID, advised Leavitt to ask her primary doctor for Paxlovid, a fairly new anti-viral COVID treatment. Leavitt did and was prescribed it. "I was annoyed that no one had told me to get it before," she says.

Since last July, Paxlovid can be dispensed by a pharmacist. If you qualify, you don't need a prescription from your doctor.

Leavitt got better after taking Paxlovid, but the improvement didn't last long. The coughing and trouble breathing started up again.

"I tried to get in to see someone at Manhattan's COVID clinic, but they were filled," she says. "Then I tried getting appointments with pulmonologists, and the earliest I could get was in two months."

Her experience is common, according to Sean Creighton, managing director at Avalere, a health care consultancy where he specializes in Medicare. "The symptoms of Long COVID are multiple and varied and differ from person to person," he says.

"Some people have a hard time breathing, have issues with fatigue," he adds. "There's what is being described as lack of mental acuity or fogginess issues. And there is inflammation in organs and tissues that can lead to all sorts of downstream consequences. There are so many issues that it is unclear who treats what — cardiologists, internists, infectious disease experts, etc."

"There may even be a role for mental health professionals," he says. "The specialist you're going to need depends on your problem."

Some people, after giving up on the treatment from their doctors, have turned to over-the-counter and natural treatments. Diana Odegard, a 74-year-old resident of Charlotte County, Florida, has been struggling with Long COVID for the last year. Her symptoms include acute pain in her throat that makes it hard to talk and breathe.

"My Medicare doctor was very concerned," Odegard says, "and I feel she did all that she could, but she offered no treatment options."

After a few months, Odegard tried electro dermal screening, which is related to biofeedback. The screening costs less than $200 and the practitioner uses the information to prescribe alternative treatments. Odegard says she has been using the suggested herbal tinctures with some success. "I'm feeling better, so I'm hopeful," she says.

During open enrollment last fall, she also switched her Medicare plan to one she hopes will offer her more treatment options. "But I have no idea what it will do," Odegard says.

Even people with sophisticated medical training can't always get good advice about COVID symptoms and treatment. Diane Healy was a cardiac perfusionist in Westchester County north of New York City when she developed COVID. Perfusionists are technologists with postgraduate training who operate heart-lung machines during open-heart surgeries.

 "I've been a gym rat for decades, but [after COVID] I couldn't walk and talk at the same time," Healy says.

She called her long-time health care provider who offered an inhaler, which didn't help. Finally, the doctor told Healy that there wasn't much she could do.

"She was very frank with me. She said, 'I could try to get you in for pulmonary function testing, but I don't think I can get you an appointment. They're overwhelmed with people who are critically ill.' She suggested that I scale it back, take it easy, and keep in touch with her. So that's what I did," Healy says.

She also quit her demanding job. "I retired because I felt like the lack of stamina was affecting my ability to be able to do my job well."

If you find yourself with long-haul symptoms, Medicare or other insurance, and no good answers on treatment options, Darwin Hale, CEO of Advocate Health Advisors, an Englewood, Florida, insurance consultancy specializing in Medicare, has the following advice:

• Prepare for your health care provider appointments. "The real problem with Long COVID is our medical community doesn't fully understand it," Hale says. So, it's key for COVID sufferers to explain their symptoms clearly. "The doctor has to decide what to do for you," he adds. "That is going to be based on input from you and what they observe. Go into the appointment with a list. Be specific about what you are feeling, when you are feeling it, when did it start, and how bad is it. Make the list in advance so you have time to really think it through."

• Make sure your provider knows all of your medical issues. If you have ailments like high blood pressure, diabetes, asthma or other serious issues, draw up a list and make sure you tell your doctor, nurse or physician assistant — especially if these ailments aren't in your records.

• Make sure you are seeing in-network providers. If you have a Medicare Advantage plan, it is important that you see a caregiver in your insurer's network. You can go out of network, but you will pay more. Hale suggests starting with someone in your network; if you can't get satisfactory care, then seek help out of network. "Look around for alternatives, and if your choice is out of network, appeal. Appeals tend to be successful," he says.

• Consider telehealth. There are COVID clinics that specialize in remote care via telephone or video services like FaceTime or Zoom. "For people who are suffering from fatigue, depression or anxiety as symptoms of Long COVID, telehealth can be extraordinarily useful," Hale says.

• If all else fails, pay cash. Hale says paying cash may not be as expensive as you fear. It can put you at the head of the line, and you can often negotiate a discount.

The Centers for Disease Control and Prevention found that Long COVID was a factor in the deaths of 3,544 people from January 2020 through June 2022. Of those, almost 30% were 75 to 84 years old; 28% were 85 and older and 21.5% were 65 to 74.

Congress recently denied additional funding to research and treat Long COVID. If you disagree with that decision, tell your Representative that this issue is important to you and that you want Congress to reconsider additional funding.

If you have Long COVID and you are unable to satisfactorily resolve a Medicare problem, contact Pandemic Patients, a nonprofit organization that advocates for policy change at state and federal agencies and connects patients with pro bono legal services.