Long COVID is a term many Americans may have heard, but some medical professionals and legislators believe that public awareness of long COVID, treatment options and its symptoms aren’t widely known. 

“Today we declare loud and clear to the millions battling long COVID. We see you. You are not invisible,” said Rep. Ayanna Pressley (D-Mass.) during a press conference on legislation she’s introduced in Congress to address issues related to long COVID. 

Meantime, researchers at the National Institutes of Health are working on a study about long COVID. They aimed the RECOVER initiative at learning what the long-term impact of long COVID on a person’s health. Health officials contend that part of the problem in finding these answers is the lack of an official test for long COVID and there’s no official count on how many people are still experiencing symptoms after beating the initial virus. Right now there are only estimates that between eight to 24 million Americans are considered “long haulers”. This is the name given to patients with persistent COVID symptoms following acute infection.

“It’s a big study that’s trying to look at all the potential problems that we might be looking at into the future after the acute infection... We’re also looking at the long-term effects. Decades from now, what are the effects on the nation’s health having so many millions of people affected by COVID? Does it affect your chances of getting diabetes or dementia or heart attack? We don’t know that....The worry is that we don’t understand what’s causing these persistent symptoms and so we don’t have any treatments that we know work,” said Dr. Walter Koroshetz of NIH’s National Institute of Neurological Disorders and Stroke.

NIH’s RECOVER initiative aims to answer these questions and the study still needs thousands of participants. Volunteers can come from anywhere in the U.S. and researchers need people who have and have not experienced long COVID symptoms. 

“We’re going to be looking for people to enroll who were infected, you know, months ago, and are still having symptoms, but we need to compare them with people who are infected months ago who have no symptoms,” said Koroshetz during an interview with Spectrum News about the ongoing study. 

Last month, the White House committed to speeding up enrollment into the RECOVER project as part of a federal effort to address issues related to long COVID.

Lawmakers, including Rep. Pressley and Senator Ed Markey (D-Mass) are also behind legislation to address long COVID. Versions of the TREAT Long Covid Act have been introduced in both the House and Senate. 

“The first of its kind bill, the treat long COVID Act would address that head on by investing heavily in creating and expanding long COVID clinics across the country...our [legislation] would dedicate resources at the Department of Health and Human Services to provide grants to expand long COVID clinics nationwide. These grants would empower health care providers to provide high quality specialized treatment to patients right in their own communities and funding would be prioritized for providers serving our most vulnerable and those disproportionately impacted by COVID-19...And our bill would ensure this is key and something that I heard time and time again from long haulers that no one is denied treatment based on insurance coverage, date or method of diagnosis, or previous hospitalization,” Pressley said. 

It’s unclear if the legislation will get the support it needs to pass as the Biden administration’s request for additional COVID funding is also still awaiting a vote.

Those interested in participating in the RECOVER initiative’s study on long COVID can find out more by going to the website for the study.