Long Covid, long wait times: patients turned away from specialty clinics turn to primary care docs

Part of the mystery and frustration of long Covid — for both doctors and patients — comes down to this hard truth:

“There is no single diagnostic test for long Covid,” said Dr. Janna Friedly, the medical director of the University of Washington’s Long Covid Clinic.

“Covid is like lighter fluid,” she added. “It just sets everything on fire. So if you had any kind of underlying condition or predisposition to something, Covid just puts you over the edge.”

The Centers for Disease Control and Prevention estimates that about 8% of U.S. adults have long Covid. But cases vary in severity — anything from asthma flare-ups or persistent headaches that fade within a few months of the initial illness, to long-lasting and debilitating fatigue, chest pain, and brain fog that can keep people from their normal, day-to-day activities.

Because it’s a new condition, and tricky to diagnose, people with more access to information and medical care tend to also have more access to treatment.

“The majority of the people who are accessing these [specialty long Covid] clinics tend to be white, insured women,” Friedly said.

Clinics specializing in long Covid treatment have long wait times — often six months or more. And the communities hit hardest by Covid — people of color and those who are low-income — have had an especially hard time getting in. Now, long Covid experts are trying to increase access to care by training the primary care providers who work in those communities how to recognize and treat the condition.

Friedly said she’s been doing education and outreach to primary care providers at community health clinics and elsewhere, for example.

One of the patients who tried to get into the UW’s Long Covid Clinic is 29-year-old Jory Weissert — but the wait time was eight months.

Weissert’s life has changed dramatically since they got Covid last July.

“Even doing simple things like taking a shower, sometimes I have to take a three or four-hour nap afterwards,” Weissert said. “If I’m going to help clean up the kitchen or something like that, that might be the only thing I get to do that day.”

It’s now been eight months since Weissert’s initial illness, and they’re still unable to return to their work as an ICU nurse, or to the activities they love — things like weekend trips, or taking advantage of their zoo membership.

“I really love animals, so that was one of the fun things to do on my days off,” Weissert said. “We could easily spend hours and hours at the zoo and see all the animals and talk to all the keepers.”

Weissert’s wife, Lisa Perdue, said it’s been rough.

“This love of my life, wonderful person, does not know how to slow down,” Perdue said. “I definitely have to make sure that Jory actually gets rest and doesn’t try to push themself.”

“I have things to do, places to be,” Weissert laughed. “I’ve never had something that I couldn’t just will myself out of before.”

A family medicine doctor at a community health clinic is managing Weissert’s treatment. Weissert is the doctor’s only long Covid patient.

Primary care providers say, without training, they’re not sure how to diagnose the condition and come up with a treatment plan.

“It feels a little outside the standard of care to be coming up with treatment plans that are based on our own individual reading,” said Dr. Julián Pérez, a family medicine doctor at SeaMar community health centers. “We would really like to have some algorithms that are based on research to follow.”

Pérez said he has about half a dozen long Covid patients — but they don’t generally identify for themselves that they have long Covid.

“Our immigrant patients don’t say that,” he said. “They don’t use those words. They usually come in and say, ‘I can’t do my job; I can’t get any sleep; I can’t focus.’”

Pérez said people who aren’t consuming English-language media might not even know the term “long Covid.”

“That message we’ve really struggled to get out to our populations: that, you know, you may live through Covid, but you may not be the same afterward,” Pérez said.

SeaMar is currently working with UW researchers on a survey of long Covid in Washington state’s Latino communities.

Dr. Socia Love-Thurman is a family medicine doctor and the chief health officer for the Seattle Indian Health Board. She’s a citizen of the Cherokee Nation of Oklahoma, and is also Delaware and Yuchi.

“I would struggle to make the diagnosis” of long Covid, Love-Thurman said.

She said she’s seen a lot that might be long Covid, or due to Covid: new diabetes, or worsening diabetes; new autoimmune diseases, or flare-ups of existing autoimmune diseases; and a lot of fatigue and brain fog.

But, she said, “For me, I still feel like I don’t have enough training or understanding to know what would qualify for the diagnosis.”

Love-Thurman said it’s important to her to be able to diagnose and treat long Covid herself because, even beyond the wait times at the long Covid clinic, she doesn’t think her patients — she calls them her relatives — would seek care there.

“It would be really hard for me to imagine our relatives going to a specialty clinic for this, because oftentimes, it’s difficult enough just to come here,” she said. “But to then be asked to go to downtown Seattle would just be something that would be too difficult for a lot of the people we serve.”

Love-Thurman said that’s not just because of logistics; her patients fear being discriminated against and treated badly in clinical settings.

For their part, Jory Weissert and Lisa Perdue said, without Weissert’s income, they’ve had to move out of their apartment on Capitol Hill and into Perdue’s dad’s house in Tacoma.

But they keep hoping things will turn around.

“Every four weeks, I’m like, ‘I really want to be better now, so I’m just going to pretend it’ll be better in four weeks,’” Weissert said. “It’s been kind of learning to … live in the space of what I can do, and still have hope for the future but make sure that I’m not living in the future.”

For now, as their doctor’s only long Covid patient, Weissert said they’re learning together about the condition and treatment options.

Dr. Friedly, at the UW Long Covid Clinic, said there is hope. She herself had persistent headaches, fatigue, heart palpitations, and other symptoms after getting Covid in April 2020. After about nine months of adhering to a strict sleep schedule and a slow, stepwise return to her former activity level, she recovered.

“There is hope for recovery,” Friedly said. “It does take a regimented approach, but people are recovering. Just because you have persistent symptoms after Covid does not mean that this is a lifelong sentence.”