"The challenge is the evidence is not good because everything with COVID is new," said Totten, who specializes in medical decision-making. "I think it's hard to cut through all the noise."
Consumers have been understandably whipsawed by conflicting information about potential COVID-19 treatments from political leaders, including Trump, and the scientific community. The antimalarial drug hydroxychloroquine, touted by the president, received emergency authorization from the federal Food and Drug Administration, only to have the decision revoked several weeks later out of concern it could cause harm.
Convalescent plasma, which uses blood products from people recovered from COVID-19 to treat those who are still ill, was given to more than 100,000 patients in an expanded-access program and made widely available through another emergency authorization - even though scientists remain uncertain of its benefits.
Regeneron and the pharmaceutical firm Eli Lilly and Co. have both requested emergency use authorization for their monoclonal antibody therapies, even as scientists say such approval could jeopardize enrollment in the randomized controlled trials that will prove whether or how well they work. So far, about 2,500 people have enrolled in the Regeneron trials, with about 2,000 of them receiving the therapy, a company spokesperson said. Others have received the treatment through so-called compassionate use programs, though the company wouldn't say how many.
Last week, the National Institutes of Health paused the Lilly antibody trial after an independent monitoring board raised safety concerns.
"With all of the information swirling around in the media, it's hard for patients to make good decisions - and for doctors to make those decisions," said Dr. Benjamin Rome, a general internist and health policy researcher at Harvard Medical School's Portal program. "You shouldn't expect that what you've heard about on the news is the right treatment for you."
Even so, people facing COVID-19 shouldn't be afraid to question whether treatment options are available to them, Rome said. "As a doctor, I never mind when patients ask," he said.
Patients and families should understand what the implications of those treatments might be, Totten advised. Early phase 1 clinical trials focus largely on safety, while larger phase 2 and phase 3 trials determine efficacy. Any experimental treatment raises the possibility of serious side effects.
Ideally, health care providers would provide such information about treatments and risks unprompted. But during a pandemic, especially in a high-stress environment, they might not, Totten noted.
"It's important to be sort of insistent," she said. "If you ask a question, you have to ask it again. Sometimes you have to be willing to be a little pushy," she said.