PROVIDENCE, R.I. (WPRI) — Doctors and pandemic experts in Rhode Island are expanding on a recent initiative by the National Institutes of Health, which focuses on studying the clinical aspects of long COVID.

According to the U.S. Centers for Disease Control and Prevention (CDC), long COVID can be a “wide range of new, returning or ongoing health problems people can experience four or more weeks after first being infected” with the virus that causes COVID-19.

For people with more severe COVID-19 infections, up to 80% may experience new or ongoing symptoms.

To meet the challenges brought on by the emerging syndrome, the Brown University School of Public Health is launching a long COVID initiative “that will bring together researchers, clinicians, and experts in policy as well as strategic communications, to rapidly study and communicate the significant impact of Long COVID on people, communities, workplaces, healthcare, and society as a whole.”

The initiative will be led by Brown School of Public Health Dean Dr. Ashish Jha and Associate Dean for Strategy & Innovation Dr. Megan Ranney.

“The pandemic’s devastating death toll has meant that we have at times been slow to acknowledge the growing number of people living with continued complications from COVID-19,” Jha said.

“Every third COVID-19 patient still experiences at least one symptom weeks or months after becoming infected,” he added. “For some people, long COVID is so disruptive they can no longer work or manage family responsibilities. We urgently need a better understanding of how long COVID affects people and systems, so our programs and policies can meet this new reality.”

“Long COVID is really a brand new syndrome that we’re only just beginning to define, understand and treat,” Ranney said. “While there’s critically important research going on at Lifespan and Care New England and elsewhere across the country, the survivors of COVID who are experiencing these symptoms, can’t wait for guidance.”

The school is partnering with the Warren Alpert Medical School and its affiliated hospitals, in addition to the R.I. Department of Health.

Dr. Ranney says she sees long COVID patients in the emergency room frequently, who often do not realize they’re dealing with effects from the condition.

“They’re just not getting better,” she said. “They still get out of breath when they try to walk around the block, they can’t stay awake all day they’re more tired than normal, their brain isn’t working right. And of course we’re seeing people with kidney problems, lung problems and PR problems, months after they have the disease.”

Ranney says there needs to be more societal support in place for people dealing with post-COVID conditions.

“Because that’s what brings people to my ER to get treated. They want to get better,” Ranney said. “And so that’s part of our hope with this initiative is to help set up those systems, not just on a healthcare system by healthcare system basis, but again on a societal level.”

Dr. Phillip Chan, a consultant medical director at the R.I. Department of Health, and Stefanie Friedhoff, professor of the practice of health services, policy and practice at Brown, are serving as expert advisors.

The initiative, according to Brown University, will incorporate and share emerging evidence on the clinical, epidemiologic, social and economic impacts of the condition.

The initiative also aims to develop “expert consensus on what is known, and where better evidence is most urgently needed” for the condition.

Experts hope to apply an “equity lens” to aspects of work, “given the disproportionate impact of the pandemic on communities of color.”

“We know that Blacks and Hispanics are, partly because of the jobs that folks are working, more likely to have been infected, hospitalized or severely ill because of COVID, but no one’s really looked at the relative prevalence of long COVID among minority populations, or best how to support folks who may not have the choice staying home,” Ranney said.

“So, we have to make sure that this disease doesn’t further worsen existing health disparities, not just in our state but across our country. And that’ll be a big part of our focus in the long COVID initiative,” she added.

Additionally, experts plan to not only evaluate emerging policies, but also develop policy recommendations for health system leaders and employers, plus federal, and state and local health policy makers. A web and social media platform will also be developed to help spark conversations for those interested in learning about long COVID.

“We’re also setting up a series of roundtables over the course of the fall with leaders, patients, and other experts from across the state and across the country to help us figure out what questions need to be asked next and what we can do in the short term,” Ranney said.

The initiative also aims to provide employers with tools to appropriately work with employees suffering from post-COVID conditions.

In July, the Biden Administration announced people with long COVID can qualify for disability under federal law.

“Disability is absolutely an important thing to have available for people that can no longer go about their activities of daily living,” Ranney said. “But we have to provide people with more than just disability, we have to provide them with a path forward is many people don’t want to be home right, they want to get back to normal.”

Funding for the first year of the initiative has been provided by the Hassenfeld Foundation, according to the university.