Frustrating futility on long COVID

Opinion editor's note: Editorials represent the opinions of the Star Tribune Editorial Board, which operates independently from the newsroom.

•••

"Desperate" isn't a word used often in the sterile language of elite medical journals. Yet that word alarmingly appears twice in a recent editorial from the Lancet publications about the lack of long COVID treatments.

Long COVID is the name given to the constellation of medical conditions that can potentially last for weeks, months or years after infection with the coronavirus that triggered the 2020 pandemic. These include fatigue (especially after exercise), shortness of breath, heart palpitations, difficulty thinking (sometimes referred to as "brain fog"), fever, headaches and joint pain.

With millions of people already infected, and roughly 1 in 13 adults in the U.S. (7.5%) reporting "long COVID" symptoms (defined as symptoms lasting three or more months), the Lancet authors are understandably sounding the alarm about the scarcity of remedies to help patients. Their call to action merits both amplification and action.

"There is a desperate need for long COVID treatments," the Lancet editorial authors wrote in August. "Even clinicians up-to-date with long COVID and empathetic to their patients have no treatments proven to be effective in clinical trials to help their patients."

It's a frustrating place to be medically three years into the pandemic. That's particularly true because this issue has not lacked resources. In late 2020, Congress appropriated more than $1 billion over four years to the National Institutes of Health (NIH) to research long COVID and identify medications and other ways to treat it.

In April, STATnews, which specializes in covering health care issues, spotlighted simmering concerns among patient advocates and the scientific community about the NIH's focus and progress. The NIH "hasn't signed up a single patient to test any potential treatments — despite a clear mandate from Congress to study them," the story's authors wrote.

"Instead, the NIH spent the majority of its money on broader, observational research that won't directly bring relief to patients. But it still hasn't published any findings from the patients who joined that study, almost two years after it started."

On July 31, NIH announced that it has opened enrollment for clinical trials to test four new long COVID treatments and that additional trials to test "at least seven more treatments" will launch in months to come. The agency said at the time the trials are informed by findings from research over the past two years and will focus on symptoms long COVID sufferers described as most burdensome.

NIH's announcement did little to quiet critics. Ezekiel Emanuel, a physician and health policy expert, told the Washington Post he was "underwhelmed." Minnesota infectious disease expert Mike Osterholm also had a tepid response, telling an editorial writer that it's possible to do both observational research and test treatments when there's an urgent need to help patients.

"It didn't seem to be a house-on-fire moment, which it should have been," Osterholm said.

The recent Lancet editorial underscores these concerns. Still, reading about the "desperate" need for treatments in a journal like this isn't the same as hearing the heartbreaking details from patient advocates about what it's like to struggle with this condition.

Diana Berrent Guthe founded Survivor Corps, an influential COVID patient advocacy group. In an interview, she said some patients are in such pain and so exhausted that they have told her that the NIH money would have been better spent on "euthanasia centers."

"They see no hope or help on the horizon," she said.

So far, it doesn't appear that Congress has held a hearing to scrutinize NIH's use of long COVID funding. Accountability and oversight are needed. Rep. Anna Eshoo, a California Democrat, deserves praise for her prominent advocacy for this. We'd also like to see Minnesota Sens. Amy Klobuchar and Tina Smith get involved, a view shared by Billy Hanlon, a prominent patient advocate for those struggling with post-COVID conditions. He is the director of advocacy and outreach for the Minnesota ME/CFS Alliance.

An independent expert review, one authorized and funded by Congress, of the NIH's strategy would be preferable to a politically infused congressional hearing.

Confidence that initial long COVID funding was well spent is critical for future appropriations. Those struggling with long COVID, and those who will as the virus continues to circulate, deserve the nation's help in finding relief and reclaiming their lives.