Nevertheless, Horwitz, who is also a RECOVER principal investigator, believes the study will give a clearer view of the impact of long covid on Black people. Gregorio Millett, vice president and director for public policy for amfAR, the Foundation for AIDS Research, agrees. Millett, who is an epidemiologist, coauthored the first research paper to point out that Black people were contracting covid-19 disproportionately in the US. He says there are enough Black participants “to conduct several comparative analyses with other races or ethnicities.”
RECOVER is still recruiting participants. When the recruitment period ends, the project could finally start to answer some of the big questions about long covid and its impact on subgroups such as Black Americans. In this third year of the pandemic, the disease already casts a shadow on the daily lives of millions of people. Understanding the burden of long covid—both as an illness and as an economic event—is crucial if government officials or clinicians hope to foster equality in a health-care system that is already stacked against people of color.
Medical mistreatment
As of early August, more than 93 million covid cases had been reported in the US—though the number of actual cases is believed to be far higher. Covid vaccinations and boosters reduce infection risk, but they offer no guarantees. (It is thought, however, that vaccines reduce the risk of developing long covid after a breakthrough infection by 15%.)
When Ostrosky treats patients recovering from covid, he finds they tend to fall into one of “three buckets.” Some are recovering from severe symptoms and organ failure; others acquired a chronic illness, such as diabetes, during their covid infection; and then there are those with long covid.
“These are the most difficult to treat,” he says of long covid patients. “They have serious symptoms, but we can’t find anything organically wrong or any underlying disease.”
Some have already struggled for many months. Fisher remembers the day her long covid symptoms started: August 11, 2020. Her handwriting changed. Her right foot started shaking. By the next morning, she was having tremors over her entire body that prevented her from walking or taking care of herself.
Doctors ultimately placed implants on her spine to deliver electrical stimulation and calm the tremors in her upper and lower extremities. She can now unlock her door and apply her own makeup. After months using a wheelchair, she can move short distances with the help of a wheeled walker and leg braces. But she still can’t work.
Fisher she says she’s fortunate to have insurance, access to quality medical care, and a doctor who advocated for her. But she also recalls the condescension and dismissiveness she felt from some medical staff. She had to make repeated ER visits before her symptoms were taken seriously. This is not uncommon for Black women, who are more likely to have negative experiences in medical settings and more likely to be permanently injured or die because of them.