17 hours ago
Three years after Los Angeles County declared an end to COVID-19 as a public health emergency, mask sales have declined, unopened tests have expired, and people have returned to in-person school, work, and social activities.
However, for thousands of L.A. County residents living with the complex, chronic condition known as long COVID, the emergency has never ended. As the virus continues to circulate, more individuals face a life-altering yet often invisible disability, with few answers about the future and limited support options.
“You’re not just becoming disabled,” said Elle Seibert, 31, who has suffered debilitating fatigue and cardiac symptoms since 2020. “You’re realizing how easily society at large and people in your life will abandon you when you cannot offer them things.”
Elle Seibert, 31, has been living with long COVID.
(Christina House / Los Angeles Times)
Long COVID is an infection-associated chronic condition, a type of illness triggered or worsened by viral, bacterial, or parasitic infections. Symptoms typically affect multiple organs or body systems, often involving fatigue, cardiovascular problems, cognitive issues, and pain.
“What causes long COVID is an abnormal immune system response [plus] dysregulation of the nervous system,” said Dr. Caitlin McAuley, director of the Keck Medicine of USC’s COVID Recovery Clinic, one of two dedicated clinics in the county (the other is at UCLA).
Researchers have also found that long COVID patients are more than twice as likely as people without the condition to have particles of the SARS-CoV-2 virus lingering in their blood — remnants of the original infection that may cause ongoing inflammation.
Although the condition affects people across age, gender, race, vaccination status, and prior health or activity levels, some demographic patterns have emerged. Women, people of Hispanic origin, those with severe initial infections, and unvaccinated individuals appear more likely to develop long COVID.
The severity of the initial illness does not perfectly predict long COVID; debilitating symptoms can develop even after mild infections. Diagnosis is made when symptoms persist for at least three months and other causes are excluded.
Lawrence Totress, 51, was working full time and volunteering as his church’s office manager when he tested positive for COVID in July 2022.
For two weeks, he experienced fever, shortness of breath, dizziness, and fatigue similar to his friends. While his fever eventually subsided, severe cognitive symptoms emerged.
Lawrence Totress, 51, at his apartment in Los Angeles. “It’s not like we’re twiddling our thumbs and trying to get some money. This is a very serious condition,” he said.
(Ariana Drehsler / For The Times)
“I could not find words,” he said recently from his South Los Angeles home. “I would have phone calls with my supervisor, with my insurance, and I would just cry because I couldn’t even finish the conversation.” At one point, he could not recall the name of the person he’d reported to for two years, scrolling through his contacts until he found “Supervisor” listed under a name.
A simple trip to the bathroom or front door left him drained of energy. He experienced migraines and bouts of postural orthostatic tachycardia syndrome (POTS), a common long COVID symptom causing his heart rate to spike upon standing.
Through occupational therapy at Keck’s long COVID clinic, he learned strategies to regain some independence: hydration, rest, and careful management of time and energy.
Where he once multitasked, he now reserves an entire day for grocery shopping. On bad days, fatigue hits so hard he can’t remember why he’s there.
He can no longer work, and bills continue to accumulate. Like every patient interviewed for this story, his application for long-term disability was denied despite extensive medical records.
“It’s not like we’re twiddling our thumbs and trying to get some money. This is a very serious condition,” he said. “Take it as being serious, and allow us to have the resources.”
There is no reliable data on the number of long COVID cases or disabled individuals in the county.
The official county count of confirmed COVID infections ended in mid-2023 at 3.5 million. Using the World Health Organization’s estimate that 6% of infections result in long COVID, the first two years of the pandemic may have produced up to 175,000 long COVID cases, a number that has grown as the virus continues to spread.
In 2023, 15.6% of respondents to a countywide health survey reported experiencing COVID symptoms lasting at least three months after testing positive. A follow-up survey currently underway asks more specifically about long COVID symptoms within the past 12 months, according to Barbara Ferrer, director of the L.A. County Department of Public Health. Results will be available later this year.
Ferrer compared the current understanding of long COVID to the early days of the HIV/AIDS epidemic. In both cases, a new virus created a large population living with a complex, chronic condition affecting health, housing, and economic security.
“COVID-19 really has had a profound impact in terms of long-lasting symptoms that affect all kinds of different parts of the body, at a much higher rate than we usually see from other viruses,” Ferrer said.
This month, the public health department formed a physician and patient advocate working group to study policies and services that could assist long COVID patients over the next 12 months, including clearer pathways to disability payments and improved education for healthcare providers.
“We still hear stories about people who say their physician dismissed it or misdiagnosed it, or told them to just go home and wait,” Ferrer said.
Patient advocates have lobbied the county Board of Supervisors to establish a similar task force, but so far without success.
Beth Nishida, 64, at Creekside Park in Walnut. She retired from special education administration due to the ongoing effects of a 2022 infection.
(Ariana Drehsler / For The Times)
“The goal really, in my opinion, should be how do we fix it, not just how do we count it,” said Beth Nishida, 64, of Walnut, who retired from special education administration due to the ongoing effects of a 2022 infection. “I know [long COVID] is new, but it’s not as new as it was. At some point, we have to start learning things and implementing them.”
The outlook at the federal level is bleak. Last year, the Trump administration closed the Office for Long COVID Research and Practice and canceled grants for long COVID research.
“The COVID-19 pandemic is over, and HHS will no longer waste billions of taxpayer dollars responding to a nonexistent pandemic that Americans moved on from years ago,” a Department of Health and Human Services spokesperson told the magazine Science.
Yet new COVID infections continue to produce new long COVID patients. People who were healthy and active just months ago are arriving at USC’s clinic with cardiovascular and cognitive problems that have upended their lives.
“There has been a societal move to go past COVID as if it’s not around anymore — but it definitely is,” McAuley said. “If it’s not on people’s radar, it’s never going to be addressed. And people will bounce in and out of the ER, and they will potentially have a degree of disability [to] the point where they just lose their job, and no one really is addressing it.”
