A full two years into the coronavirus pandemic, long-haul Covid patients remain sick and in desperate search of answers. They’ve lost jobs. They’ve lost their sense of self. Many say they have lost faith in the medical community.
Despite multiple studies, the launch of dozens of specialized long Covid clinics and $1.15 billion in federal funding for the National Institutes of Health to study the condition, there remains a dearth of proven treatments for people who are suffering from lingering illness after their infection.
Full coverage of the Covid-19 pandemic
“There is no one right answer for many of our patients,” said Dr. Ben Abramoff, director of the Post-COVID Assessment and Recovery Clinic at Penn Medicine, which has seen more than 1,100 long Covid patients.
Compounding the problem is a lack of consensus on how to define long Covid, according to a commentary published Tuesday in the Annals of Internal Medicine from researchers at UCLA Health and the David Geffen School of Medicine in Los Angeles.
“We do not know what constitutes long Covid or how to formally diagnose it,” the authors wrote. “An improved understanding of this condition is needed to provide appropriate care for our patients.”
Most hospital-affiliated clinics, including Penn Medicine, treat patients with a variety of medical teams, including counselors, cardiologists, pulmonologists, physical therapists and immunologists.
But it can take months to get an appointment, and many patients say finding treatment for long Covid can be time-consuming and draining. That gap has allowed private companies to step in with promises of relief.
The most well-known is IncellDx, a California-based company that said it has accomplished three key goals specific to long Covid: a diagnostic test, a treatment plan, including an HIV drug and cholesterol-lowering medications, and a way to show patients that the treatment is working.
Critics counter that there are no simple blood tests or widely accepted biomarkers to determine whether someone has long Covid. Even at highly respected clinics, treatment regimens vary widely and doctors don’t offer cures. Instead, most treat the symptoms in an effort to get patients back to some sense of normalcy.
The myriad symptoms that come with long Covid make it difficult to come up with a standardized treatment.
The illness, characterized by lingering symptoms weeks to months after an infection, can take on many forms. Some people have daily migraines. Others lose their train of thought midsentence. Some can no longer walk the short distance from their front door to their mailbox.
Long waits and long-term plans
In the past two years, scores of long Covid treatment clinics, typically affiliated with hospitals or medical research centers, have opened nationwide.
When Laurie Bedell, 42, of Pittsburgh, first sought treatment, she waited nearly eight months for an appointment at the Cleveland Clinic more than 130 miles away. When her health insurance refused to pay for the visit, she was forced to find a doctor closer to home.
“I waited months and got nothing done,” she said. “I’ll probably be waiting months again for hopefully somebody in Pittsburgh.”
The wait is not easy for patients like Bedell — a former nursing director who, before Covid, was accustomed to working out for two hours, six days a week. Now, she said, “I physically can’t function. I have a walker. I can’t drive because I have cognitive dysfunction, and my vision’s constantly blurry.”
At the Covid Activity Rehabilitation Program at the Mayo Clinic in Rochester, Minnesota, where doctors have treated hundreds of people with long Covid, patients are advised to take their recovery slowly.
“Patients, when they get sick, they just so want to get back to normal life,” said Dr. Greg Vanichkachorn, an occupational medicine specialist who heads Mayo’s post-Covid program.
But plunging into normal…
Read More: Long Covid patients, in search of relief, turn to private company