UCLA launches long COVID program, but barriers to care remain

By Kathryn Barnes

The UCLA Health Long COVID Program launched recently to diagnose, manage and treat persisting symptoms of coronavirus. Photo by Shutterstock.

It’s been nearly two years since COVID-19 knocked on our doors. While the worst of the pandemic seems to have subsided, some people continue to suffer from long COVID. These mysterious symptoms persist long after contracting the virus and continue to baffle scientists.

The UCLA Health Long COVID Program, directed by Dr. Nisha Viswanathan, was recently formed to diagnose, manage and treat the symptoms of long COVID.

What is long COVID? 

Dr. Viswanathan says there’s no clear definition of long COVID, and it’s still uncertain why it happens to some but not others. 

“These are the patients who are having consistent symptoms 12 weeks after their initial infection with COVID,” she says.

Some of the symptoms include chest pain, shortness of breath, cough, and neurological issues like brain fog and fatigue.

Angelenos experiencing long COVID

Olga Lexell and Nechama Kravitz are both long COVID patients living in LA.

Kravitz first felt sick in July 2020. At the time, there weren’t many COVID tests available, so her doctor said she shouldn’t get tested. Since she never received a positive test, Kravitz says she’s encountered some doctors who don’t believe her, which is a common issue among long haulers.

“That has been a challenge in terms of getting treatment,” she says.

Dr. Viswanathan says long haulers that don’t have proof of a COVID positive test should consider taking a nucleocapsid antibody test, which can indicate whether or not a person had COVID previously.

“This has been a way to help us get patients into the program that may not have that test,” she says, though also admitting it isn’t perfect.

Kravitz still experiences symptoms such as fatigue, brain fog, body aches, chest pain, shortness of breath upon exertion, and non-epiliptic seizures, though the severity varies day to day.

Through testing, she’s been diagnosed with chronic fatigue syndrome, fibromyalgia, sleep apnea, and a condition having to do with her vocal cords.

A full-time department supervisor before the pandemic, Kravitz says the brain fog and fatigue led her to take three months off work and return part-time in a less demanding role.

“I’m now doing admin work. I’m not able to perform my job I was doing previously,” she says. “I don’t know what my professional future is going to be with everything going on in my brain.”

Nechama Kravitz is beginning to struggle financially. She had to move from full-time to part-time work due to brain fog and fatigue, and her disability payments stopped coming several months ago. Photo courtesy of Nechama Kravitz.

Throughout the pandemic, Lexell was worried about contracting the virus because of her asthma. She tested positive for COVID in December 2021. 

She had a mild case, but a week and a half later, she developed a painful cough. “I could barely sleep because of it. It got to the point where I was using my inhaler 15 times a day. Before that, I was only using it maybe once a month,” she says. 

Now Lexell is using a steroid inhaler, which is generally for people with pulmonary obstruction, and costs about $25 a month with her insurance. But she says without insurance, the inhaler costs almost $500 a month. 

“I'm just nervous if I lose my job, if anything happens to me and I can't work. ... And I can't even imagine if I didn't have insurance, it would be impossible to get this medication,” she says. 

29-year-old Olga Lexell hopes to enroll in UCLA’s long COVID program in order to take a chest X-ray and rule out any issues related to her enhanced difficulty breathing. Photo courtesy of Olga Lexell.

Can COVID cause changes in the brain?

A study published this month in the journal Nature shows COVID may cause changes in the brain. UCLA is currently evaluating patients with brain fog to see if there are symptoms that could persist or change over time. 

Dr. Viswanathan says she has seen quite a bit of patients with brain fog who have difficulties performing a lot of executive functions. 

“It does make me a little worried for our patients … because we don't actually have a timeline to provide them because we've never really seen anything of this scale in medicine before.”