Nisha Viswanathan is a physician at the University of California, Los Angeles (UCLA), where she also directs the institution’s long Covid program. Her work involves both researching the mounting chronic health crisis, as well as treating patients suffering from its symptoms.
But, she says, the divide between what her research shows and who she sees in her clinic is alarming.
A recent study by Viswanathan and her UCLA colleagues followed Covid patients for up to 90 days after a Covid infection and found that long Covid symptoms cut across demographic groups, with only about a third of those with long Covid identifying as white. In a clinical setting, however, Viswanathan says roughly 80% of the patients seeking treatment for long Covid are white.
“They are disproportionately affluent white individuals,” said Viswanathan of her patients. It’s an equity gap that clinicians across the country are seeing and, Viswanathan says, points to potentially enormous swaths of underserved populations. “Many people may be living with long Covid and not seeking treatment because the treatment themselves can be labor, time and money intensive.”
Monica Verduzco-Gutierrez, a professor of medicine at the University of Texas Health Science Center at San Antonio, helps run the only post-Covid recovery clinic in San Antonio and is seeing a similar pattern. While Hispanics make up well over half of the city’s population, the demographics of the patients at Verduzco-Gutierrez’s clinic has so far fallen well short of that.
“I do see a lot of Hispanics but I probably don’t see as many as I should,” she said. “I don’t think people even know to seek care.”
Even when people do make it in the door, it may be hard for them to keep up with what can be extensive treatment regimes. Verduzco-Gutierrez remembers one Spanish-speaking patient who had paid out of pocket for his visit. “He was at least lucky enough to be referred to come in,” she said. But long Covid is a complex diagnosis that often requires extensive testing, which the patient couldn’t afford. Verduzco-Gutierrez called around, and couldn’t find anyone able to take them at a discount. Eventually, she lost track of the patient.
Verduzco-Gutierrez says that long Covid is exacerbating the inequities that the Covid pandemic exposed. The scale of long Covid alone makes it more unwieldy than most chronic illnesses, with potentially millions of people affected in just the US. Viswanathan adds that long Covid is hitting young people at higher rates than is typical for other chronic diseases. That means that, unlike elderly patients who are generally eligible for Medicare, retired and no longer caring for children or parents, younger patients may not have insurance and must fit appointments around other work or life commitments.
Given these features, Phyllis Billingsley, 58, isn’t surprised that communities of color aren’t as apt to seek care for long Covid. “Black communities, low-income communities, don’t seek the help they are supposed to get,” she said, at least partially attributing that to historical fraught relationships with the healthcare system. “High-income families aren’t used to hearing the word no. They are used to hearing answers. We’re not used to hearing answers.”
When Billingsley’s Covid stretched into long Covid, she was fortunate enough to have had prior experience navigating the healthcare system and a job as a legal assistant that came with health insurance. Still, she says, getting treatment has been extraordinarily draining. At first, doctors wouldn’t even take her seriously.
“[One neurologist] made me feel like I was a Black person looking for opioids,” she remembers.
Then, because of symptoms she says range from non-stop headaches and fatigue to stuttering and balance issues, she had to leave her job. That meant her health insurance costs rose and her coverage ultimately ran out. She’s now on Medicaid, but had to drain her savings in order to become eligible for the assistance. Meanwhile, she still can’t work and often has multiple doctor’s appointments a week. Unfortunately, she knows she’s not alone.
Billingsley is a member of a group called Survivor Corps, an organization that aims to mobilize grassroots support for Covid research and assistance. Through that, she says she sees people struggling constantly. “There are numerous people who are not getting the care they need,” she said. “They can’t find the doctors who will listen or they can’t afford medical treatment or they can’t take the time off of work.”
The evidence of these woes is strewn across the group’s Facebook page. “I can’t afford to be out of work for weeks on end. How do people financially survive this?” wrote one person. Another posted: “I can’t even consider any more testing because of the cost.”
Solutions for long Covid patients are in part hard to come by because there is still a lot scientists don’t know about the disease. “The first thing we need is for the research to catch up,” said Carol Horowitz, the director of the Institute for Health Equity Research at Mount Sinai health system, adding that “right now there are massive, massive national studies going on”.
The most prominent of those is the Researching Covid to Enhance Recovery (Recover) project, which the US National Institutes of Health is spearheading and is backed with some $1.15bn in government support. But those results will take months to reach publication and, in the meantime, experts say that long Covid clinics and care remain underfunded – especially compared with giant influxes of funds that came during the initial phases of the pandemic that helped people receive treatments and vaccines.
“Acute [Covid] people can get care. They can get seen in the hospital,” said Verduzco-Gutierrez. “For chronic care, there’s nothing.”
She points to the 1990 Ryan White Comprehensive Aids Resources Emergency (Care) Act as an example of the type of government mobilization that could help with long Covid. That legislation created the largest federally funded program for people living with HIV/Aids, and Verduzco-Gutierrez would like to see that type of investment in long Covid patients.
“We need that for long Covid,” she said. “We need to increase the ability for clinics to treat more people.”
The Treat Long Covid Act currently under debate in Congress would do just that by allocating millions in grant funding to create or expand long Covid clinics. “Millions of people are living with long Covid and have yet to receive the adequate treatment and care they deserve,” said Representative Ayanna Pressley of Massachusetts, who sponsored the House version of the bill, in a statement.
She also noted that this issue particularly affects communities of color and that passing the act would help “long-haulers access the high-quality care they need right in their own communities”. Senator Tim Kaine of Virginia also introduced the Care for Long Covid Act, which would increase funding for long Covid research and education, as well as facilitating partnerships aimed at making access to care easier for patients.
“Communities of color have less access to the testing and healthcare services that would connect them with ongoing long Covid research,” said Kaine. “I’m committed to making sure Congress helps all Americans with long Covid get the support they need.”
So far neither of these proposals have made much progress in Congress. But advocates say that keeping this issue in the spotlight remains critical because the long Covid crisis and the inequalities it hastens are only set to deepen.
“Everyone wants the pandemic to be over,” said Verduzco-Gutierrez. “[But] the new pandemic is long Covid.”