Thousands of people disabled by the prolonged COVID are looking for answers

Three years since Los Angeles County declared the end of COVID-19 as a public health emergencymask sales have decreased, unopened tests have expired in their boxes and people have returned to personal school, work and entertainment.

But for the thousands of LA County residents living with the complex, chronic disease known as long-term COVID, the emergency is never over. And as the virus continues to spread, many people are forced to think about the life-changing but invisible disability associated with their burn that offers few answers to the future and few avenues of support.

“You’re not just disabled,” said Elle Seibert, 31, who has struggled with debilitating fatigue and heart symptoms since 2020.

Chronic COVID is a chronic condition associated with an infection, a stage of illness that is initiated or worsened by infections caused by viruses, bacteria or parasites. Symptoms it usually affects multiple organs or systems of the body, and is associated with fatigue, cardiovascular problems, mental problems and pain.

“What causes prolonged COVID is an abnormal response of the immune system [plus] nervous system dysfunction,” said Dr. Caitlin McAuley, director of USC’s Keck Medicine. The COVID Recovery Clinicone of two dedicated clinics in the region (the other is at UCLA).

Researchers have also found that chronic COVID-19 patients are the same more than twice as likely such as people who are not in a condition to have SARS-CoV-2 virus particles living in their blood – remnants of the original infection that can cause ongoing inflammation.

Although this condition affects all ages, sexes, races, immunization status and patients’ previous levels of health or occupation, several demographic patterns have emerged. Women, people of Hispanic origin, people with severe early illnesses and people who have not been vaccinated against the virus appear to have a greater chance of developing prolonged COVID than other groups.

The severity of the initial disease cannot completely predict the later outcome: debilitating symptoms are already present in people with initial intractable diseases. Patients arrive at the diagnosis when symptoms have persisted for at least three months and all other explanations are absent.

Lawrence Totress, 51, was busy working full-time and volunteering as the office manager of his church when he was diagnosed with COVID in July 2022.

For two weeks, he had the same fever, shortness of breath, dizziness and fatigue that his friends experienced. But while his fever eventually rose, the alarmingly strong cognitive symptoms subsided.

Lawrence Totress, 51, in his apartment in Los Angeles. “It’s not like we’re twiddling our thumbs trying to get money. This is a very serious situation,” he said.

(Ariana Drehsler / For The Times)

“I couldn’t find the words,” he said recently from his home in South Los Angeles. “I was on the phone with my manager and my insurance company, and I started crying because I couldn’t even finish the conversation.” At one point, he couldn’t remember the name of the person he had reported to two years ago. He scrolled through the contacts on the phone until he saw “Manager” written below the name.

A trip to the bathroom or the front door left him without the energy to return. He cycled between migraines and bouts of postural orthostatic tachycardia syndrome, or POTS, a long-standing symptom of COVID that sent his heart rate soaring when he stood up.

Through occupational therapy at Keck’s long-term COVID clinic, she learned skills that allowed for some semblance of independence: hydration, relaxation, careful management of her time and energy.

Where he once hopped from job to job, now he’s open all day to get out of the store. On a bad day, he might not make it through the product before he’s so exhausted he can’t remember why he’s there.

He can no longer work; debts are still piling up. Like every patient interviewed for this story, his long-term disability claim was denied, despite extensive medical records.

“It’s not like we’re twiddling our thumbs trying to get money. This is a very serious situation,” he said. “Take it seriously, and let us have resources.”

There is no reliable data on the number of long-term cases of COVID in the region, or on the number of people disabled by the condition.

The county’s official count of confirmed COVID-19 cases is over by mid-2023 at 3.5 million. Provided by the World Health Organization balance that 6% of infections lead to prolonged COVID, in just the first two years of the epidemic it is possible to produce 175,000 prolonged cases of COVID, a number that has increased as the virus continues to spread.

In 2023, 15.6% of respondents to a health survey across the region said they had symptoms of COVID at least three months after being tested for HIV. A follow-up county survey currently underway asks specifically if respondents have had chronic symptoms of COVID in the past 12 months, said Barbara Ferrer, director of the LA County Department of Public Health. Those results will be available later this year.

Ferrer compared the current state of public understanding to the early days of the HIV/AIDS epidemic. In both cases, he said, the new virus has created a large number of people living with a complex, incurable disease that has a major impact on their health, housing and economic security.

“Covid-19 has had a really big impact in terms of long-term symptoms that affect all kinds of different parts of the body, at a much higher rate than we usually see with other viruses,” Ferrer said.

This month, the public health department established a working group of doctors and patient advocates that for 12 months will study policies and services that can help long-term patients of COVID, said Ferrer, as a clear way to pay for the disabled and better education for health providers.

“We still hear stories from people who say, you know, my doctor dismissed it or got it wrong, or told me to just go home and wait,” Ferrer said.

Patient advocates have lobbied the County Board of Supervisors to establish a similar task force, so far to no avail.

Beth Nishida, 64, of Creekside Park in Walnut. Retired from special education administration due to lingering effects of infection in 2022.

(Ariana Drehsler / For The Times)

“The goal, in my opinion, should be how we fix it, not just how we count it,” said Beth Nishida, 64, of Walnut, who retired from special education administration due to the lingering effects of the contagion in 2022. “I know [long COVID] it’s new, but it’s not as new as it used to be. At some point, we have to start learning things and apply them. “

The outlook at the government level is grim. Last year, the Trump administration it is closed Office of Research and Development Long-term COVID and canceled grants for long-term research on COVID.

“The COVID-19 pandemic is over, and HHS will no longer waste billions of taxpayer dollars responding to an epidemic that Americans have eliminated years ago,” a spokesperson for the Department of Health and Human Services said. he told Science magazine.

Yet new COVID infections produce new chronic COVID patients. People who were healthy and active just a few months ago still come to the USC clinic with cardiovascular and mental health problems that have improved their lives.

“There’s been a community movement to pass off COVID like it’s gone — but it is,” McAuley said. “If it’s not on people’s radar, it’s never going to get fixed. And people are going to be bouncing in and out of the ER, and they’re going to have some level of disability. [to] the point where they just lose their jobs, and no one talks about it.”