Bay Area's Long COVID Community Celebrates Moonshot Bill for $10 Billion in Funding

Long COVID patients and advocates in the Bay Area have spent years pushing for a concerted effort toward research, prevention and a cure.

They’re now hopeful that the increasingly widespread chronic condition that follows many COVID-19 infections will soon be better understood, thanks to legislation introduced Friday in the House of Representatives that would provide $10 billion in funding for long COVID research and education.

The Long COVID Research Moonshot Act, proposed by Rep. Ilhan Omar (D-Minn.) and co-sponsored by Rep. Barbara Lee (D-Oakland), is a companion bill to one that Sen. Bernie Sanders (I-Vt.) introduced in the Senate in August.

“It’s huge for us,” said Lisa McCorkell, an Oakland resident who co-founded the Patient-Led Research Collaborative. The PLRC is a group of researchers living with long COVID and other related chronic conditions.

“It really shows that this bill has broad support — as it should — because it’s aiming to address the crisis of long COVID in a way that puts the resources that are necessary behind it,” McCorkell said.

The symptoms of long COVID often include brain fog and fatigue. Many people found to have it have also been diagnosed with conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CF) and postural orthostatic tachycardia syndrome (POTS). These chronic, complex immune diseases can profoundly limit the wellness and productivity of patients and, like long COVID, are often triggered by an infection.

Studies have also found that COVID-19 can cause immune system dysfunction, allowing dormant infections, like the virus that causes Epstein-Barr disease or the bacteria that causes Lyme disease, to reemerge. And while vaccines have ensured bouts of COVID-19 are less likely to be deadly than they were at the pandemic’s start, every infection makes you more susceptible to contracting long COVID.

Dr. Linda Geng, co-director of the Stanford Post-Acute COVID-19 Syndrome Clinic, said long COVID has become a “huge public health problem,” affecting millions of people in the United States long term.

Though physicians have an FDA-approved therapeutic toolkit for COVID-19, they currently have “minimal to no evidence-based strategies” to help those who have long COVID or who may develop it in the future, Geng said.

The Long COVID Research Moonshot Act would create a new research center within the National Institutes of Health to study the condition and other related illnesses, like ME/CFS and POTS. The center would house a new database tracking long COVID cases, an advisory board, and new grant processes to accelerate clinical trials, according to a report by Mother Jones.

The legislation would also fund public health education and clinics dedicated to long COVID care, especially in underserved communities — and would require any new treatments developed through the act to be reasonably priced and accessible to more patients.

The Bay Area’s Umoja Health, which serves the COVID-19 and health needs of people of color, was an early sponsor of the Sanders bill. Co-founder Kim Rhoads described how long COVID can transform patients’ lives and contribute to long-term disability.

“We’ve heard stories of folks who now have a hospital bed in their house where the family member who was affected by long COVID lives,” Rhoads said. “Folks who do not like to get out of bed, have burning feet and difficulty walking or have exertional malaise, which is basically a fatigue that can come over people after just doing simple things like cooking a meal.

Rhoads said the disease has largely been ignored or treated like a seasonal virus, such as the flu. “There are political reasons to deny that there are any long-term effects of COVID,” Rhoads said, “to allow for us to ‘get back to normal.’”

In her work, Rhoads has seen firsthand how communities of color and disabled people have been disproportionately harmed by long COVID. Historically marginalized groups are also on the frontlines of infections and suffer from the highest mortality rates.

Disabled people are twice as likely to contract long COVID as nondisabled people, said Sabrina Epstein, a policy analyst with Disability Rights California.

“This is deeply an equity and justice issue,” said Epstein, whose disability makes her at risk for long COVID. “The research proposed by this bill has the potential to benefit folks in the disability and chronic illness community.”

KQED’s Carly Severn contributed to this report.