‘An enormous disabling event’: Long COVID could have inequitable impact on Californians
It’s been two years since Angela Meriquez Vazquez was infected with COVID-19, but some of her most debilitating symptoms remain. Migraines, fatigue, brain fog, heart palpitations, insomnia and sometimes even a fever are among the symptoms that disrupt her day-to-day life.
Lisette Duarte still needs an inhaler eight months after her COVID-19 infection, and damage to her voice box occasionally leaves her struggling to speak. She can’t return to work, so she relies on Medi-Cal for her health coverage.
Long COVID is a mysterious, debilitating and difficult-to-diagnose compilation of post-infection problems that have affected perhaps millions of Californians. And health experts fear that the toll will be especially harsh for Latinos, African Americans and low-income residents, who already face a disproportionate impact from COVID-19 as well as less access to quality health care.
At least 20 specialized, post-COVID programs have been set up at medical centers in California to help treat these long-haul patients. But they already are overburdened, and experts fear that long COVID could go largely unaddressed or misdiagnosed in people who have few resources.
“What we know is that because the greatest amount of exposure happens in low-income communities, they will have the highest burden of long COVID,” said Dr. Neeta Thakur, a pulmonary and critical care doctor at UC San Francisco.
Long COVID patients often need a team of specialists because cardiac, respiratory and neurological problems have been documented. As a result, people with Medi-Cal or no health insurance may struggle to find proper care and pay for expensive tests.
Some vast regions of California have few doctors experienced in diagnosing and treating long COVID conditions. Of the 20 post-COVID clinics and programs in California, according to a crowdsourced list collected by a patient advocacy group, nearly all are in the Bay Area, Los Angeles, Orange County and San Diego. Of those listed, only one is in the Central Valley. None are in the San Joaquin Valley, an eight-county region where hospitals were inundated during previous COVID-19 infection waves.
The general experience (of patients) is that they’ve been seen by numerous providers in the community. They feel frustrated,” said Dr. Jeffrey Hsu, a cardiologist who is on a team of physicians treating patients at UCLA Health’s long COVID program. “They’re told it’s anxiety or to be patient, that symptoms will get better on their own.”
Studies have estimated that more than one in four COVID-19 patients experience symptoms that last for months, known as “long haulers.” In California, that could mean as many as 2 million people among the 8.5 million COVID-19 cases may have long COVID, including more than 100,000 African Americans and one million Latinos.
But it’s hard to know how many people actually suffer from long COVID, largely because it is still being defined: The U.S. Centers for Disease Control and Prevention says symptoms are considered long-term if they last more than four weeks after an infection; the World Health Organization says it’s 12 weeks.
The California Department of Public Health is collaborating with UCSF and UCLA on a national study tracking the aftermath of COVID infections through patient surveys. Without providing details, the department also said it is working on partnerships with the University of California system to expand access to post-COVID information and care.
Demand for long COVID care exceeds capacity
At UCLA, the long COVID team includes four primary care doctors who evaluate patients and then connect them to the appropriate specialist — cardiologists, neurologists, pulmonologists, psychiatrists and others.
Hsu said demand for the program is high. UCLA’s program has received more than 300 referrals, but only has capacity to see 200 patients.
About half of the patients in UCLA’s program are already UCLA Health members, while the other half are referred from other providers around Los Angeles, he said. He worries about patients who don’t have insurance since a lot of expensive tests are involved, and those battling symptoms who live in areas without access to providers who have been trained to identify long COVID.
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