Medical experts and patients discussed the challenges associated with treating and studying long Covid — the umbrella term for long-lasting symptoms in patients after a Covid-19 infection — in an event hosted by the Harvard T.H. Chan School of Public Health on Friday afternoon.
The panel, which was moderated by journalist Fiona Lowenstein, featured patient advocates and long Covid sufferers Chimére L. Smith and Hannah E. Davis, along with physicians E. Wesley “Wes” Ely, Gary H. Gibbons, Kavita Patel, and Steven Phillips.
HSPH Dean Michelle A. Williams introduced the panel and said the organizers hoped the event would center around patient experiences.
“Our goal for today’s program is not only to better understand this condition but to put patients at the center of this conversation in order to head off the next public health crisis,” Williams said.
The panel included a discussion on mistrust between physicians and patients with long Covid. Smith said patients, herself included, often hesitate to seek medical care for their long Covid symptoms out of fear they will be dismissed.
“I am deathly afraid to go back to a lot of those doctors, because my fear is, still, almost two years later, that I still run into doctors who have no idea what I’m talking about, and they refuse to listen,” Smith said. “All these medical records I have, all of this, all the things I’ve been a part of, and they still don’t listen.”
Ely said ignoring patients with long Covid is “a form of testimonial injustice.”
“They are the experts of their own illness and what they were being told was that they weren’t the experts of their own illness,” Ely said.
The panelists also discussed difficulties in diagnosing long Covid, since it cannot be accurately done with antibody tests.
Patel said she fears inaccuracies of antibody tests may result in the denial of coverage and barriers to comprehensive care for affected patients.
“We’re going to have so many people where that’s all I can do is kind of target symptoms and never actually fully acknowledge that these things are related,” Patel said. “We do a lot of damage by associating one diagnostic criterion so to speak for something that we fully don’t understand.”
There are efforts to improve the clinical response to long Covid including a study funded by Congress to examine causes and risk factors associated with long Covid, according to Gibbons.
Gibbons also said formalizing case definitions and findings from studies about different post-viral diseases can help clinicians move toward a more concrete understanding of long Covid.
“There may be some common themes about some of these responses to these microbial or other injuries that we can all learn from,” Gibbons said. “One of the things we’re trying to do to recover is create those sort of cross disciplinary teams that are not only just inclusive of scientists, but as we’ve tried to indicate, with patients as partners.”
Smith said she along with other patients remain frustrated by the limited involvement of patients in decisions related to long Covid.
“What I like to caution organizations — health organizations and any other organizations who say that they’re patient-centered — is that there needs to be a complete overall overhaul about what that looks like,” Smith said.
“It can be a little frustrating because I feel like I’ve almost been waiting for two years,” she added.