Critics say the U.S. government has too little to show for its $1.2-billion Long COVID project RECOVER (Researching COVID to Enhance Recovery) in the more than two years since its inception. The government, meanwhile, has an explanation for the slow progress and says it’s ready to turn the corner with a more efficient approach to finding treatments.

Ongoing delays

A STAT article published on April 20, 2023 reports that the National Institutes of Health (NIH) still haven’t recruited a single patient to study potential treatments and “have already drawn a firestorm of criticism” for the many observational studies it has in the works, and the dearth of actual trials. Meanwhile, patients like Jenn Cole who have wanted to participate in RECOVER have found the system inaccessible, and feel the project is a poor use of taxpayer dollars.

NIH responds

The article authors claim that the NIH didn’t give a clear reason for the delay and defended their broad approach, explaining that it ensured consistency of data and processes across populations. 

• Treatment trials will commence soon, they said, and the standardized approach will enable multiple treatments to be studied simultaneously. Resources can be concentrated into any drug that shows potential. 

Progress has been made over the past year, a Health and Human Services (HHS) representative said, and there are other efforts going on besides RECOVER.

Official NIH position

According to the agency’s official position, Long COVID patients, like RECOVER representative Nitza Rochez, have joined forces with researchers to solve the public health crisis. Thousands of people are enrolled in observational studies that have revealed useful trends. Over 40 Long COVID studies are underway, including those looking at potential treatment targets.

• These patient experiences have guided clinical trial design, says the NIH, allowing them to reach “the next phase of discovery” which involves testing of potential Long COVID therapies.

NIH says many trials early in the pandemic weren’t able to identify effective COVID treatments because they weren’t large enough and/or didn’t have targeted objectives. “Learning from this experience, the RECOVER trials will be harmonized to ensure coordinated and efficient evaluation of interventions…This consistency accelerates our understanding and strengthens the certainty of findings.”

Only one trial announced

Five clinical trials of potential treatments are finally being planned, though only the trial to test  Paxlovid for Long COVID symptoms has been formally announced, and recruitment is far behind schedule. All five trials are now undergoing safety analyses.

Frustrations mount on both sides

Like Cole, many Long COVID patients are frustrated by:

• Speedy COVID vaccine launches v. the government’s Long COVID efforts,
• Most of RECOVER’s findings thus far emanating from small patient groups or health records, and not the thousands of people signed on to participate, and 
• Failure to create a promised HHS Office of Long COVID Research and Practice.

Researchers’ frustrations include:

• Slow trial enrollment and launches, due to a lack of healthy controls for comparison, which are necessary for a rigorous study,
• Calls to stop the NIH’s planned study of exercise therapy for Long COVID over possible harm to patients with post-exertional malaise,
• More funds being needed to test diverse therapies.

Experts say a greater urgency is needed to drive development of promising treatments, along with better organization, transparency, and accountability. A number of viable treatment candidates exist, including metformin, a common and inexpensive diabetes drug with antiviral properties.

‘Committed to finding solutions’

NIH directors say the agency is “committed to finding solutions for everyone,” and is being selective about which studies to invest in. “[W]e know that finding answers as quickly as possible is critical,” they write. “As we look ahead to the next 12 months [from March 2023], we’ll continue the studies evaluating the underlying causes, risk factors, and outcomes of Long COVID, and we anticipate significant scientific progress on research leading to Long COVID treatments.”

*Cohrs, R. & Ladyzhets, B. (2023, April 20). The NIH has poured $1 billion into long Covid research—with little to show for it. STAT. https://www.statnews.com/2023/04/20/long-covid-nih-billion