Advocates, physicians, and lawmakers underscored the urgent need for paid sick leave and access to care for long COVID patients, as well as the importance of believing patients, during a House Select Subcommittee on the Coronavirus Crisis hearing.
Data gathered by the Census Bureau in early June estimated that nearly one in five American adults who had COVID-19 experienced symptoms of long COVID, noted James Clyburn (D-S.C.), chair of the subcommittee.
According to CDC data, approximately 7.5% of Americans had long COVID for at least 3 months. Women are more likely than men to experience long COVID, as are Black and Hispanic adults compared with white adults.
“It is crucial that we improve our understanding of [the impact of] long COVID on these communities, so that all Americans receive equitable care, fair access to resources, and the best health outcomes possible,” Clyburn said.
Patients Need Rest, Reassurance
At two long COVID recovery clinics in San Antonio, which have seen increasing numbers of patients since August 2020, Monica Verduzco-Gutierrez, MD, chair of the department of rehabilitation medicine at the Long School of Medicine at UT Health San Antonio in Texas, said she has treated marathon runners who can no longer run, healthcare providers who can’t return to work, and people who can’t stand for 2 minutes without their heart rate “going up the roof.”
Hannah Davis, co-founder of the Patient-Led Research Collaborative, a long COVID advocacy group, said that she contracted COVID-19 in March 2020, and “2 years later, I still have cognitive dysfunction, memory loss, nerve damage, clotting markers, immune system dysfunction, dysautonomia … and ME-CFS [myalgic encephalomyelitis], a disabling complex neuro-immune condition.”
Driving, reading, and even walking are still a challenge, she added.
“Not being able to rest increases the risk and severity of long COVID, which means people without appropriate work accommodations and those who must continue household or caretaking labor are at increased risk,” she said.
In addition, those without documentation of SARS-CoV-2 from a positive test may not be able to prove their need for rest or may not recognize that they need it, Davis noted.
Tests are often required in order to be eligible for care in long COVID clinics and to participate in research, but PCR tests can produce false-negative rates, especially in the early phase of the infection, and are less accurate in women and those under 40. Proving the condition through antibody tests is also a challenge for those who don’t produce detectable antibodies, and others may lose them over time, she added.
While a lot has been learned about long COVID over the last 2 years, with theories about causes including “viral persistence, clotting issues, neuro-inflammation, immune dysregulation, microbiome changes, connective tissue damage and hypermobility-related issues, auto-immunity, or a combination of these,” public awareness about the condition is low and “misunderstandings” persist, she said.
Many people assume long COVID is a continuation of the acute symptoms of active infection, but it is actually “a new onset of multisystemic symptoms” occurring weeks or months later, Davis explained. More than three-quarters of cases occur in those who were not hospitalized for acute infection. The condition is more common in young adults, and can occur after re-infection.
Vaccination helps to reduce its risk, she noted, but data show that up to 5% of even triple-vaccinated people acquired long COVID after a first laboratory-confirmed infection compatible with the Omicron BA.1, Omicron BA.2, and Delta variants.
Another witness, Cynthia Adinig, a long COVID advocate, who is Black, shared how she was denied care at a hospital in a “blatant racially biased incident” in September 2020.
“I was threatened with arrest by emergency room hospital staff while seeking medical help during an episode of dangerously low oxygen and high heart rate,” she said. The hospital had also tested her for illicit drug use without her knowledge during prior visits to address her long COVID symptoms.
Verduzco-Gutierrez highlighted the need to talk about post-viral illnesses. “We need to talk about the perfect storm of brain inflammation and an immune system gone awry.”
To address the lack of awareness of long COVID among healthcare providers and the general public, Davis called for an information campaign that explains the symptoms and need for paid leave to allow for rest, as well as the need for continued mask mandates and improved ventilation to prevent transmission, and reforms to Social Security Disability Insurance to “shorten processing times, increase benefits, [and] remove waiting periods.”
Rep. Mark Green, MD (R-Tenn.), an emergency room physician, noted that “just because there’s no accepted clinical criteria for making a diagnosis, and there’s not a test for the 200+ symptoms … doesn’t mean that there isn’t a legit disease here, or illness.”
“It also doesn’t mean that something else isn’t going on. Correlation is not causation and we as clinicians, as researchers, have got to get to the bottom of it,” he added.
More Resources Needed
Verduzco-Gutierrez noted that the American Academy of Physical Medicine and Rehabilitation, of which she is a member, has established a collaborative of 40 clinics treating long COVID patients across the country as part of multidisciplinary teams that are bearing the brunt of “enormous resource strain.”
Post-viral diseases have been historically underfunded, and Congress needs to support the healthcare workforce and invest in research and treatment, she argued, pointing to three bills — the TREAT Long COVID Act, the Cures 2.0 Act, and the COVID-19 Long Haulers Act — which can help address these challenges.
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