Informatics Expert Presses Congress for Long COVID ‘Moonshot’

While one expert called for a “moonshot” to address long COVID, some lawmakers questioned whether federal dollars on such research have been well spent, during a hearing of the Senate Health, Education, Labor, and Pensions Committee (HELP) on Thursday.

Informatics expert Charisse Madlock-Brown, PhD, of the University of Iowa in Iowa City, argued that a “long COVID moonshot,” similar to President Biden’s Cancer Moonshot, is urgently needed.

In her written remarks, she noted that the current research landscape is “alarmingly disjointed,” and that experts across a range of medical specialties “remain siloed.” Additionally, the lack of adequate funding is a disincentive for both scientists and drug companies who might otherwise be investigating potential treatments.

Sen. Roger Marshall, MD, (R-Kan.), whose “loved one” has had long COVID for more than 2 years, said he’s frustrated with the lack of progress from the NIH, which received over $1 billion for long COVID research in December 2020. “They’ve been focused on, as I call it, ‘forming committees and praying about it,'” he said.

Marshall acknowledged that researchers are studying risk factors and causes, but argued that the agency should be prioritizing diagnosis and treatment.

He also floated the idea of redirecting some funding to the Biomedical Advanced Research and Development Authority (BARDA), which he said is more streamlined and more willing to engage the private sector.

He noted that private-sector physicians are currently studying “cytokine panels and coagulation workups, plasminogen activation inhibitors, fibrin, monomer, [and] dimers,” as well as “microclots … too small for us to see on the typical scans.”

Marshall asked Ziyad Al-Aly, MD, a clinical epidemiologist at Washington University in St. Louis, whether his work included similar research.

Al-Aly said it didn’t, but he endorsed the idea of finding treatments “as soon as possible.” Throughout the hearing, he argued that current and even planned trials are “too small” and “too slow.”

Marshall also asked the witnesses — physicians and scientists involved in long COVID research — whether any had been successful with off-label treatments such as hydroxychloroquine and acyclovir.

Tiffany Walker, MD, of Emory University School of Medicine in Atlanta, pointed to observational data from Stanford University on the use of low-dose naltrexone, which “doesn’t work for everybody, but is very beneficial for some.”

While it’s important to look for curative treatments, Walker noted, “we just need medications that will cause some relief of symptoms, as we’re trying to learn more about this disease and find treatments for it.”

During the patient panel, Nicole Heim described how her 16-year-old daughter who has long COVID suffered from daily constipation, nausea, and vomiting that was so constant, “she’d walk around with a puke bag in her hand, all the time.” That was before her physicians and family realized there was still COVID in her stool.

“We did a ‘clean out’ through a colonoscopy … kind of by chance … and then we started on a pro- and prebiotic that Children’s [National Hospital’s Pediatric Post-COVID Program] recommended,” she explained. “And those symptoms almost completely went away.”

Heim said many physicians aren’t well-informed about long COVID, and one gastroenterologist she spoke with recently didn’t know that COVID can live in a person’s gut for months, or even a year.

“I want the doctors to know what we’re learning,” she said.

Angela Meriquez Vázquez, MSW, a patient with long COVID and the former president of Body Politic, a patient-led organization for long COVID advocacy, said that basic diagnostic and screening tools need to be shared broadly with primary care physicians in particular. “They’re the first person that folks go to after an infection with these … somewhat nebulous symptoms.”

Vázquez also noted that she hoped that greater understanding of long COVID might help to reduce the amount of “medical gaslighting” patients experience, adding that when she first developed symptoms, “I was told multiple times that unless I was elderly, and in need of a ventilator, that I needed to go home and save beds for people who are really sick,” despite labs showing that she had severe blood clots.

“I was sent home as a ‘psych’ patient,” she said. Being a woman and a person of color didn’t help, she noted.

Michelle Harkins, MD, of the University of New Mexico in Albuquerque, recommended establishing a “national network for telementoring” clinicians and sharing the most up-to-date research findings and treatments.

In her written testimony, she said that during the pandemic, a similar virtual network through Project ECHO (Extension for Community Healthcare Outcomes) had helped nursing homes to train staff on infection control.

Circling back to the question of off-label drugs, Marshall asked Al-Aly specifically about whether he used any with patients. Al-Aly said there weren’t any he would publicly endorse.

“Anecdotally, there are a lot of things that people say … might work,” he noted, “but I think we need to accelerate trials, so we actually find out what works and what doesn’t.”

Marshall said he is “all for longitudinal studies,” but “desperate times call for desperate measures” and doctors shouldn’t be “persecuted” for using medications off-label.

Shannon Firth has been reporting on health policy as MedPage Today’s Washington correspondent since 2014. She is also a member of the site’s Enterprise & Investigative Reporting team. Follow

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