Based on entry criteria or requirements, the person is eligible to receive testing and treatment through the Long COVID clinic.
Lacking proof of COVID-19 positivity can be a barrier to attending Long COVID clinics for many people with Long COVID. Some people contracted COVID-19 before testing existed or was widely available; others tested at home but do not have an official recording of their positivity.
A person may give up seeking solutions and needed treatment if they are refused entry into Long COVID clinics. Or, they may continue to see an uncoordinated range of specialists, and have to make sense of a disconnected set of test results, recommendations, and next steps on their own.
“We tried to go [to a community testing site]. There was a line for literally two or three miles and I was feeling terrible. So we decided that it wasn’t worth it. Like, let someone else have the test and just go home and take care of me. We didn’t know that it would matter later that I didn’t get a test, because now I can’t prove that I had COVID. I haven’t been able to get in Long COVID clinics here because I don’t have a positive test.”
—Betty, bus driver, mother, and person with Long COVID
The person’s insurance approves their attendance at the Long COVID clinic.
Treatments for Long COVID conditions may be deemed by insurance companies as not medically necessary or experimental, prompting them to deny claims.
A person may not be insured, and therefore unable to afford further testing and treatment.
A person may not know they can appeal a denial, or may not be able to. As a result, they may discontinue seeking treatment.
“My insurance called me and said, ‘We’re not going to cover this [Long COVID clinic]. You don’t need it.’ And they said, ‘You can go to one of these three doctors instead.’ I was hesitant to go to one of those three though, because I wanted to specifically go to a place that was Long COVID-related.”
—Georgia, recent college graduate, project assistant, and person with Long COVID
The person is able able to visit the Long COVID clinic shortly after scheduling a visit.
Like appointments with specialists, demand for Long COVID clinics has caused significant wait times for appointments. Some people wait as long as a year for an initial appointment at a Long COVID clinic.
The projected wait time may be long enough to prevent someone from scheduling an appointment in the first place, therefore leading them to opt out of further medical assistance.
Symptoms may evolve or worsen during their wait time, causing additional pain and disruption to their lives.
“I called the University of Michigan’s Long Haul COVID Clinic in January. They told me they couldn’t talk to me on the phone until May. And then perhaps they could see me by the end of the year. I said ‘I’ll either be well by then, or I’ll be dead.’”
—RaMell, jewelry designer, entrepreneur, and person with Long COVID
At their first visit, the person is seen by a team of health care providers, who work together to determine a treatment course.
Depending on the Long COVID clinic they visit, a person may simply leave with a list of referrals, all with whom they have to follow up on their own.
Visits with various providers at a Long COVID clinic may happen over several appointments, requiring the person with Long COVID to travel to and from the center many times over a period of weeks or months.
A person with Long COVID may again be faced with the daunting tasks of coordinating their care and enduring significant wait times and travel to continue seeking care.
“One person I talked to said that she went to [a Long COVID clinic] in New York City. They were wonderful, but they wanted her to see all these different specialists who were in both upper and lower Manhattan. She’d have to travel all throughout the city to see these people, and these visits were scattered over many days, or weeks, or months. It just wasn’t feasible.”
—Darryl, pulmonologist, professor, and Long COVID researcher
Over the course of follow-up appointments, the person receives further testing and treatments that effectively relieve or eliminate their symptoms.
Because Long COVID is still poorly understood by researchers and health care providers, treatments often have to be administered in a trial-and-error fashion. If one treatment does not alleviate symptoms, health care providers move on to the next treatment.
For the people with Long COVID who are able to surmount all previous barriers and access treatment, these treatments may prove insufficient or ineffective, leaving them to continue dealing with symptoms, looking to clinical trials, or persisting on hope for future cures.
“Some programs that we’ve built have worked really well for patients. ... And then there are some failures. There are still a lot of symptoms that, despite trying a lot of things, we can’t really help patients with. It’s very frustrating, because you want to be able to find a treatment that works for every patient. But unfortunately, I just don’t think we’re there yet.”
—Albert, Long COVID clinic director