Long-COVID patients face treatment denials, skepticism from clinicians

For filmmaker Marty Pack, life has always been about timing. A graduate of the prestigious Second City improvisational comedy troupe, which Pack calls "the best education I ever got," she knows instinctively when something is working, or when it's off. 

When the COVID-19 pandemic began, Pack was in the middle of a move to start a master's degree program in public health. The timing couldn't have been better, or worse. "I do not recommend moving during a pandemic," Pack said. 

Once settled, Pack took a position in the Grand County public health office in Colorado as a way of serving her new community, working on COVID education and investigation projects. It was then she realized how challenging the pandemic was going to be. 

"As we were progressing through the pandemic, (we) started hearing and then listening to individuals who were either not getting better (after infection) or who got better, but then were sick again," Pack said. After observing how the government handled the problem, she said,  “I knew we had a problem."

At the end of 2021, Pack quit her job and started Wail of a Tale, a documentary film company. For three-and-a-half years, Pack and her crew have been embedded in the community around long COVID, starting even before anyone had given the condition a name. 

Pack previously produced two documentary projects, one dealing with the privatization of public education and another examining the life of an undocumented woman who was in an abusive marriage. 

The current project, with a working title of “Health Inequity Through the Lens of Long COVID,”  will focus on the community of long-COVID researchers and advocacy groups and how the disease has impacted the LGBTQI+ and Black and brown communities, as well as migrant workers. 

But defining long COVID can be tricky.

Dr. Wes Ely, a professor of medicine and a critical care pulmonologist at Vanderbilt University Medical Center, who is an adviser on the Wail of a Tail project, is working with the National Academy of Medicine to develop a better definition of the disease. 

Its symptoms are a “very individualized situation because it depends on how your body reacts," Ely said. "There are over 200 reported symptoms." 

Long COVID can affect the brain, as well as cardiovascular, gastrointestinal and nervous systems, in unique ways, depending on the patient. 

"We're talking about a syndrome that human beings experience in the months and years after the acute COVID infection," Ely said. "This leaves them with a multi-system set of symptoms that are very disabling, and causes them to be unable to do their job, carry out relationships, and even sometimes commit suicide." 

Beth Pardo, an advisory council member for Wail of a Tale, is a long-COVID sufferer who lives an hour outside of Toronto. She contracted COVID in February 2020 at a grocery store in rural Ontario. The former marathon runner was hit hard by her initial infection, confined to bed for three months.

The symptoms she describes are not uncommon among long-COVID sufferers: coughs that would not go away, extreme weakness, constant fever (which she still has almost every day), and burning in her legs. 

"I'm getting very worn down by the pain," Pardo said. "I have nerve pain, joint pain, muscle pain. I have a lot of cognitive issues – brain fog, short-term memory loss and some long-term memory issues. Sometimes I stutter or have word-finding issues."

Pardo said she went from being a senior director at a major financial institution, managing between 100 to 150 people, to someone who needs to spend the day in bed after short social interactions. 

Managing the symptoms has required numerous visits with physiotherapists, naturopaths, nutritionists and other experts. A low point for Pardo was when she took a cognitive ability assessment, a standard measure for intellectual impairment.

"(Part of the assessment) is drawing a clock," Pardo said. "I couldn't draw the clock, and I still struggle reading clocks. I used to be smart."

According to the assessments, Pardo has symptoms of a traumatic brain injury. 

Pardo says she was lucky to find a doctor who believed her symptoms indicated she had long COVID, as others she knows were told their illness was a psychological result of having the initial disease. 

"The one thing long COVID has highlighted as a need within our medicinal system is to do a better job of treating patients holistically when it comes to chronic illness and doing a better job of ushering them into a life of chronic illness," Pardo said.  

Dr. Ely knows long-COVID sufferers have trouble getting medical professionals to take their concerns seriously. 

"I'm in massive listening mode," Ely said about his initial consultation with a new patient complaining of long-term COVID symptoms. "I really (want to) get an understanding of this person's story because they are the expert of their own illness. I want to know the entire person."

He said the reluctance of some medical professionals to diagnose or even fully believe long COVID exists was a matter of training. 

"We are taught in Western medicine to define a disease," Ely said. "'Here's the test you take to see if the patient has that disease, and here are the therapies’…. None of that is there for long COVID. The definition is changing over time, and you have to be so out of the box with conventional approaches when you deal with something like long COVID."

Those who are living with the syndrome must also contend with the cost of treatment. As a Canadian, Pardo has had all of her procedures and prescriptions approved and only spent $10 out of pocket for a walker. Her American counterparts have not been as fortunate. 

According to Pack, Cynthia Adinig, a Wail of a Tale board member who is enrolled in one of Cigna’s most expensive plans, was told by her pharmacist that a crucial drug for long-COVID treatment, the antihistamine cetirizine, would no longer be covered. 

Others have had treatments denied because they are deemed “experimental.”

Ely said he has heard from patients who’ve said “I’m running out of money, but this stuff is keeping me alive right now. I can’t stop.” Some are spending more than $10,000 per month on medications despite losing their jobs because of their symptoms, he said.

In March 2023, NBC News reported that “up to 4 million full-time workers are out of the labor force due to long COVID.”

Dr. Ely has seen people recover from the disease but cautions there is no known “cure.”

"I'd rather say there are people who got better, and it could have been that they naturally got better, or it could be that a smorgasbord of things were done," Ely said.

Still, he is optimistic about potential remedies for the disease.

"I think we should send a message of hope to human beings who are suffering," Ely said. "They've been going through months and years with no answers, but we're going to get answers, and their disease can get better.

“It's just going to take months and years for that to happen. But if they can maintain hope and realize their life matters, then all of us will work together and do our part."