This story was originally published at Prism.
Over the past three and a half years, Cynthia Adinig, a marketing specialist and mother living in Virginia with her 8-year-old son, has become a prominent advocate for patients with long COVID and other chronic illnesses. She’s been featured in The Washington Post and other major media outlets, testified before Congress on long COVID, and founded an agency focused on advocating for people of color in health care. She also sits on the board for several organizations dedicated to solving underfunded chronic conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which has similar symptoms to long COVID.
But none of that stopped her from being kicked out of the hospital this summer when she was experiencing a flare-up of her own long-COVID symptoms. She first had a mild COVID-19 infection in March 2020 that she was able to manage at home. Since then, she’s been diagnosed with dysautonomia, a group of conditions caused by problems with the autonomic nervous system. Common among long-Covid patients, it can cause high heart rate, dizziness, and fainting. Her COVID infection has also led to mast cell activation syndrome (MCAS), another frequent issue among long-COVID patients that causes intense allergic reactions to foods and medications. These diagnoses and associated treatments have enabled her to establish a regimen of medications to keep her symptoms more under control over the past year. Even with the medications, she still struggles with brain fog, fatigue, and exercise intolerance.
But in July, Adinig experienced a flare-up of her symptoms due to bad air quality from the Canadian wildfires. She had a sinus infection, her face was puffy, her heart was racing, and she had trouble breathing despite having numerous air purifiers in her home. She thought she was going to die, so she called an ambulance.
Once in the ER, however, when she explained her condition and treatment for these flare-ups, she said the doctor refused to listen or prescribe her medication and said they didn’t see anything wrong with her. When she protested, the doctor kicked her out and called security, according to Adinig.
“I was sobbing in the waiting room,” she said. “Security came and brought me tissues.” Eventually, her husband was able to make it to the drug store to stock up on enough over-the-counter antihistamines until she could speak to her regular doctor. Without this, she says, “I would have died.”
In health care, this kind of treatment is a reality for disabled people, women, and especially women of color. Some 1 in 5 patients have reported experiencing discrimination in health care. Black people, who have been disproportionately affected by the pandemic along with Latinx people, consistently received poorer care in hospitals than their white counterparts, which correlated with higher mortality rates. These outcomes are even worse for Black women, especially mothers. Medicaid and uninsured patients, who are disproportionately low-income people of color, also report being treated more unfairly than those on private insurance plans.
Patients struggling with disabilities like long Covid face additional stigma, disbelief, misinformation, and ignorance about their condition. More than a quarter of those who have contracted COVID-19 have ever had long COVID, and an estimated 6% of people in the U.S., around 16 million people, are currently suffering from lasting effects from the virus. This number could rise as more people become reinfected without public health precautions like masking or ventilation improvement efforts in place.
These patients follow a long history of “underfunded, ostracized types of diagnoses” like ME/CFS, according to Dr. Monica Verduzco-Gutierrez. Gutierrez runs a long-COVID clinic at the University of Texas, San Antonio, and has had long-haul symptoms herself since August 2022.
While these conditions, including long COVID, have sometimes been dismissed as primarily affecting white people, this is far from the truth. Gutierrez has seen COVID-19 disproportionately affect her primarily Latinx patients, who, alongside other populations of color, experience stigma and less access to health and health education.
Much of the blame for this lack of awareness can be attributed to a lack of clear, consistent public health messaging around COVID-19 and long COVID. The end of the public health emergency in May and the dismantling of mask mandates in health care settings across the country has created the perception that the pandemic is over, while hundreds still die from the virus each week. There is a false perception, too, that getting vaccinated once is enough to protect oneself from COVID and long COVID, said Adinig. While vaccination and updated booster shots increase protection against severe infection and lower the risk of long-term symptoms, they do not prevent it.
“[People] don’t realize that vaccinations may stop you from dying from COVID, but it’s not stopping you from getting long COVID,” Adinig said.
The situation urgently demands mitigation efforts against reinfections, according to Dr. Akiko Iwasaki, a prominent long-COVID researcher at the Yale School of Medicine. “We need to be doing everything to prevent the new occurrence of long COVID,” Iwasaki said. “In addition to prevention, more research is needed to understand the underlying pathological mechanisms of long COVID and target the root causes of the disease with drugs and therapies.”
On Wednesday, the U.S. Department of Health and Human Services, through the Agency for Healthcare Research and Quality, announced $45 million in grants to expand access to care for people with long-COVID. According to a press release, the funding looks to “support existing multidisciplinary Long COVID clinics across the country to expand access to comprehensive, coordinated, and person-centered care for people with Long COVID, particularly underserved, rural, vulnerable, and minority populations that are disproportionately impacted by the effects of Long COVID.” Previously, some $1 billion was appropriated to the NIH long-Covid initiative, RECOVER, and experts agreed that much more funding toward physician education, research, and clinical trials was necessary to target this disease, said Gutierrez and Adinig.
Misinformation about COVID and long COVID has impacted the kind of care that patients receive. Gwendolyn Hill, a student at UCLA, said that her family members and doctors had trouble believing that she had long-COVID symptoms. She first tested positive in July 2022, an asymptomatic infection. She contracted it again in June 2023, and again after her initial symptoms persisted for a month. Since then, she’s reported chest pain, shortness of breath, stomach issues, and post-exertional malaise (PEM) that have left her unable to make the 20-minute walk from her apartment to campus. When it comes to the reality of healthy, young people getting long COVID, “there’s definitely a lot of disbelief and denial of that possibility,” she said. Hill noted that a number of her college classmates are displaying long-COVID symptoms, too, but “don’t want to admit it” to themselves.
As Iwasaki stated, “We should not be thinking about long COVID as something that happens to certain groups of people. It can affect anyone of all ages.”
When patients go to doctors who are ignorant about long COVID, they risk getting inappropriate medical advice that can worsen symptoms. A hallmark of long COVID is exercise intolerance, also known as PEM. Some doctors are quick to recommend exercising and building up strength and stamina after what they see as deconditioning. But with conditions like long Covid and ME/CFS, overdoing it can lead to prolonged flare-ups or even permanently worsen symptoms.
Karla Monterroso, a Los Angeles-based consultant and former CEO who has long COVID from a March 2020 infection, said that symptoms like fatigue and exercise intolerance play into racist stereotypes. “The stereotypes people have about Black, Indigenous, and Latine people are the exact presentation of illness of long COVID,” she said. “[That] you’re lazy, you don’t want to work hard, you’re unhealthy … post-exertional malaise, brain fog, all of those symptoms replicate those stereotypes.” According to Monterroso, she encountered a racist cardiologist who said, “ ‘I know you want to be in bed. Laying down is nice. But you gotta get up and get that body moving, entiende?” she recounted in “The Long COVID Survival Guide.”
In addition, Monterroso said she saw many doctors who blamed her symptoms on weight, with one refusing to treat her if she didn’t agree to bariatric surgery. “I was a weightlifter before this,” she said. “I could deadlift 220 pounds. I’m not afraid of hard work. I just need someone who understands the limitations and post-exertional malaise.”
Because of a lack of knowledge about long COVID among health care providers, many patients have had to become experts in their own right and advocate for themselves. “It’s a weird position to be in when you feel like you know more than your doctor,” she said.
Monterroso said she has also faced hostility for coming into appointments with her own research. They’ll “treat you nice,” she said of the doctors, “but the moment you defend yourself or advocate for yourself, you then become an obstinate character that [they] have to demolish.”
And, of course, not every patient has the education, resources, time, or energy to do their own research. “I don’t think that people should have to be forced to advocate for themselves in this way and then be actively dismissed, and then the outcome could be disablement or death,” said Hill.
Some doctors also dismiss symptoms as psychosomatic or psychological. As Hill developed long-COVID symptoms, she documented them in a symptom tracker she made. But when she showed it to her doctor, rather than using the information to inform her care plan, the doctor asked her if she had health anxiety. Hill replied that if she did, her anxiety was warranted given the slew of strange symptoms she’d been having after testing positive for COVID for a full month.
In her case, Hill, a Chinese adoptee, saw the doctor’s response as sexist and ageist rather than solely tied to race. “There is a very long history of women, nonbinary, and trans people of color being discredited, being gaslighted, and seen as over-the-top and anxious,” she said.
Despite a lack of evidence that long COVID is psychological, some of the studies RECOVER has funded look at cognitive behavioral therapy, exercise, and rehabilitation therapy as a treatment for long COVID. Gutierrez said she thinks money would be better spent on medication trials and research to better understand complex, chronically underfunded conditions that can accompany long COVID, like ME/CFS and dysautonomia. As she put it: “We know about rehab in other disease states, so why don’t we study stuff that we don’t know?”
Gutierrez founded the University of Texas, San Antonio, clinic, which is part of the RECOVER initiative, in 2021. Before the pandemic, she was a brain injury and stroke doctor. She said she hasn’t received any new or special funding for the clinic and that to accommodate all of her new post-Covid cases, she’s had to see fewer patients in her clinical specialty. This points to a need for expanded funding for educating long COVID doctors.
With her patients, Gutierrez starts with “validation and education” and a comprehensive medical workup that goes beyond the basic blood panels that other doctors run that often come out normal. She refers her patients to other specialists who she knows are educated about and sympathetic to long COVID and who can prescribe medications for the conditions they may have acquired from their infections, like dysautonomia and MCAS. There is a place for physical rehabilitation in her clinic, she says, but with physical therapists who “know what pacing means, and who teach more like energy conservation and not these traditional things that make people crash.”
While the first long-COVID clinic Monterroso visited treated her more like a research subject and didn’t offer her much symptomatic relief, she said, she is now enrolled in the University of Southern California COVID recovery clinic, which she’s found “phenomenal.” Clinics like these are offering a path toward at least some level of symptom management for patients who can access them, and studies into the root causes of long COVID continue every day—though many believe not quickly enough.
Adinig has collaborated with Dr. David Putrino, a leading long-COVID advocate who runs the Putrino Lab out of Mount Sinai Hospital in New York City. His lab recently announced that they will soon launch a new clinic “dedicated to recovery from complex chronic illnesses” including long COVID, ME/CFS, and Ehlers-Danlos Syndrome, and chronic lyme disease.
While promising options are becoming more available for the treatment of long COVID, access to them is a hurdle for many. Insurance and medical costs are a huge barrier to care, disproportionately impacting patients of color. During the height of the pandemic, Monterroso had to step down from her job as a CEO at a nonprofit because of her debilitating fatigue. This meant losing her company health insurance and enrolling in an exchange plan, which was an HMO plan, meaning she needed a referral from a primary care provider to see any kind of specialist.
“[It] was the biggest mistake of my life,” she said. In effect, it meant “one stakeholder gets to determine your access to all of health care.” If your primary care provider isn’t on your side, then you are out of luck. Monterroso said she went through seven primary care providers that year, but no one who would refer her to the specialists she needed. It wasn’t until this year, when she signed up for a PPO plan, that her care — and quality of life — improved.
But Adinig has observed a scaling back of what her insurance, an expensive PPO plan, is willing to cover. As a result, she’s had to get strategic and creative about how she handles the insurance system. “People regularly refer patients to me when they have nowhere to go, especially those who can’t afford care because I have figured out a whole bunch of workarounds,” she said.
The ability to pay for care falls along class and racial lines. Many long-COVID patients are unable to work, and even if they get disability payments — a big challenge that often necessitates hiring a lawyer — those checks are barely enough to cover basic expenses. Others need work accommodations, like being able to sit while working, having reduced hours, or working remotely. But those kinds of accommodations aren’t always possible in more blue-collar work, like waiting tables, Gutierrez pointed out.
The upshot is that patients who have access to generational wealth — and more likely to be white or from white families — are able to access better care faster. Before COVID, Monterroso had been saving up to buy property, which she could then pass on to the next generation. Now, she’s diverted all the money to long-COVID care. “I’m making a tangible trade-off … to sustain my health because the medical system rarely pays attention to women who look like me,” she said. “This is why the racial wealth gap exists.”
This has huge ramifications for the future of care work, Monterroso continued. “There are a lot of sick people, there are a lot of old people, and there are a lot of babies,” she said. “And we do not have the care infrastructure to equitably help people right now, and our care needs are only getting larger and larger.”
In 2020, after Monterroso got sick, she had to move back in with her parents, who cared for her while she was almost entirely bed-bound for a year. That meant less capacity for her family members to take in her grandmother when she got sick too, not to mention fears about Monterroso being reinfected. Her grandmother passed away from COVID later that year.
It was also a huge challenge when Adinig’s son got COVID and suffered from long-haul symptoms himself. “It was so heartbreaking because I’d always said I’d been so glad it’s been me and not him.” COVID infections can sometimes lead to a condition called PANS, or pediatric acute-onset neuropsychiatric syndrome, which causes distressing emotional episodes that can last for hours at a time. “It is brutal. I would take long COVID any day over PANS. It makes your child unrecognizable,” said Adinig.
Throughout this long “nightmare,” Adinig has become part of a virtual network of “first-wave” long-COVID patients compiling their shared knowledge and advocating for themselves and others. She started the BIPOC Equity Agency with Liza Fisher, another Black woman suffering from long COVID, and it has since expanded to include nine women of color among its cadre of patient experts.
“We’re a family and a sisterhood. We show up for each other. We were all we had in the first wave,” said Adinig. The group is currently working on recruiting more people of color for studies on long COVID and research trials, as well as collaborating on other papers on long COVID alongside doctors and researchers. The key, Adinig explained, is “not just recruitment but engagement and understanding” of communities of color who face so many barriers to medical care.
Adinig and other advocates from the COVID-19 Longhauler Advocacy Project have worked to produce resources educating patients and doctors on the best care and latest research. Members of the group have also advised on writing the TREAT Long COVID Act. Her sense from a long-COVID event in Richmond, Virgina, spearheaded by Sen. Tim Kaine, one of the only congresspeople openly suffering from long-COVID symptoms, was that Democrats do have the will to continue providing funding for researching and treating long COVID — even if they publicly act like COVID is over.
“The right people are there, the heart is there, it’s really the lack of funding and the Republicans saying, ‘We don’t want to fund anything COVID,’ and having the control to hold us up forever,” she said, referring to the fact that Republicans hold the Senate, where the long-COVID bill she helped write died in 2022. A new version of it has since been reintroduced.
Despite all this, no matter what the Biden administration believes behind closed doors, they’ve modeled to the American public that the pandemic is over and that precautions, like masking and ventilation improvements, are unnecessary. Adinig said that even she understands this impulse to an extent. “I think it’s a human thing to just pretend nothing bad is happening,” she said.
But something bad is certainly happening, and the stakes are even more dire for Black women like Adinig and other people of color. Indeed, a few weeks after the July incident that sent Adinig out of the ER in tears, she had another flare-up — but this time, she brought along one of her fellow members of the Solve ME/CFS board, a white man. She received totally different treatment. Doctors were kind and listened to her.
“It felt so different,” she said. “It felt like the first time I was in a car with a white person and got pulled over.”
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