The long window of Covid mortality, while comprising less than 1 percent of Covid-19 deaths, is the latest evidence of the continuing threat the complex, difficult-to-diagnose condition poses to health of Americans and even the stressed US healthcare system. . as Biden administration officials say, Covid-19 will continue to circulate for years to come.
It also raises important questions about who can access care for a disease that affects up to 23 million Americans.
A death can only be attributed to a long Covid if a patient is diagnosed. And while a recent survey by the CDC’s National Center for Health Statistics found that nearly one in five American adults who say they’ve had Covid-19 also have lingering Covid symptoms, it remains prohibitive for patients to receive treatment for the disease, according to doctors, due to low levels of awareness among doctors and patients, the lack of funding for specialized clinics and the time-consuming process of diagnosing and treating a disease that has dozens of symptoms.
The constellation of long Covid clinics that have sprung up across the country continue to have months-long waiting lists for new patients. Doctors say the relatively few patients being treated are overwhelmingly white and wealthy enough to be able to take time off to make multiple appointments and spend time online seeking care and support groups.
“This is the same movie we’ve seen over and over again,” said Christian Ramers, a doctor who treats long-term Covid patients at Family Health Centers in San Diego. He assures that throughout the pandemic the various innovations that have arisen to fight against Covid-19 – tests, vaccines, treatments and long Covid clinics – have always been accessible in the first place, mainly to people who have the resources to seek them .
“My patients have to work to pay their bills,” said Ramers, who primarily treats low-income people of color. “They don’t have time to sit on the phone.”
In many other cases, patients seeking treatment are told that what they are experiencing after their Covid-19 infection is not a problem. “A lot of patients are told they’re anxious,” said Alba Azola, co-director of the post-acute Covid-19 team at Johns Hopkins, referring to the Latino patient community she often works with. Although some research shows that mental health affects how people experience illness, He said many patients “are not being properly referred or identified.”
In August, the Biden administration launched the National Long-Covid Research Action Plan, focused on better understanding how to prevent, diagnose and treat long-Covid, calling health equity a “principle rector” in this work. He also released a report outlining the federal services available to people who have had Covid for a long time.
Sen. Tim Kaine (D-Va.), who has had Covid himself for a long time and continues to experience a tingling in his nerves that started when he got Covid in March 2020, acknowledges that there are still significant barriers to accessing long-term care from Covid, but is optimistic that things are moving in the right direction as more is learned about the condition.
“We’re certainly better off than we were at the start of Covid,” Kaine told POLITICO, referring to health disparities. “We pick up disparities faster and that can allow us to devise strategies to overcome those disparities faster.”
CARE for Long COVID Act, which Kaine sponsored would, among other things, provide funding to the CDC to focus on better understanding disparities in access to diagnosis and treatment. He is hopeful that the $25 million in funding for this work, which was included in the Senate Appropriations Committee’s latest text for the end-of-year omnibus bill, will be included in the law year.
Many who treat long-term Covid patients say lawmakers and the White House need to do more to support patients and raise awareness about the disease, especially as deaths from the disease rise. Despite the growing body of evidence that Covid has long been a serious and widespread health threat, the Biden administration has not done enough to fund clinics or educate people about what to look for in themselves or their patients, they say.
“We’re very under-resourced and completely inundated with patients,” said Janna Friedly, executive director of the Post-Covid Rehabilitation and Recovery Clinic at the University of Washington. “We’re booked up for over a year at this point. It’s not a good way to serve patients.”
He said he would like to see the federal government provide more funding both for research and to support the few clinics that do exist.
“It’s largely being forgotten,” he said. “We’re seeing less attention to the lingering effects of Covid, which are still here and will be for years to come.”