Senator Roger Marshall’s voice was shaking with emotion as he made the case for speedy and focused research into long Covid. Marshall, the junior senator from Kansas, is a Republican and a medical doctor. But addressing the first-ever Senate hearing on long Covid last month, he wanted the audience to know that his interest wasn’t just professional and it definitely wasn’t just political. It was also personal.
One of his loved ones, he explained, suffered from severe long Covid. “We’ve taken my loved one to dozens of doctors,” he said. “I’ve talked to 40, 50, 60, 80. I’ve read everything there is to read about long Covid, talked to other members of the Senate that have had long Covid. What are they doing? So I share your frustration.”
It was personal for many in the audience, as well. Four years after the Covid pandemic began, leaving millions of people suffering from long-term health effects, the hearing had been announced with about a week’s notice — a scramble for people who were ill and, in many cases, in dire financial straits. But somehow the room was overflowing.
Many in attendance told me they were worried that the political polarization around everything pandemic-related would thwart even belated progress on this important issue. I came away with a very different view.
Bernie Sanders, the chair of the Senate Health, Education, Labor and Pensions Committee, kicked off the hearings by making an impassioned plea on behalf of the patients. He said the medical establishment had been too dismissive of their plight, and he conceded that Congress had not done nearly enough to help.
But it was Marshall who spoke with precision about the scientific literature. He rattled off the leading theories about why some people with long Covid are debilitated and described specific symptoms in detail.
Later in the hearing, Marshall blasted the National Institutes of Health, which at the end of 2020 received $1.15 billion to study long Covid, for “forming committees and praying about it” rather than working toward diagnostics and biomedical treatments.
“Desperate times call for desperate measures,” Marshall said. The room broke into applause.
The N.I.H.’s long Covid initiative, called Recover, spent a substantial portion of that huge sum on a large but purely observational study that has so far yielded few practical results. Just two clinical trials got underway, only recently. Neither is reassuring.
The first trial, testing Paxlovid, is appropriate but late; three others also looking at Paxlovid have already commenced — one of them is completed and close to announcing results. The other Recover trial tests interventions against neurological symptoms, including what is described as an “online brain training program” and virtual therapy with goals such as helping patients to better “plan and manage personal goals.” These two trials are woefully undersubscribed, with only about 23 and 37 percent, respectively, of the intended number of participants.
For years, long Covid clinicians hoped for hard information about seemingly promising drugs, including those that are already being prescribed off-label. One example that came up in the hearing is low-dose naltrexone. As it happens, I previously brought low-dose naltrexone up to N.I.H. officials as an example of an existing drug they could be testing. They told me that trials for drugs already on the market were imminent. That was 18 months ago.
I truly didn’t expect that zoom therapy and brain games would jump to the front of the queue for those rapidly dwindling funds. But without trials, patients and clinicians are reduced to guessing games and information gleaned from social media.
Take Meighan Stone. Long Covid took her from a prominent life in advocacy — a former president of the Malala Fund who had worked on H.I.V./AIDS projects with the Clinton Foundation — to illness so severe that, for now, she cannot work.
“My friends used to call me the Energizer bunny,” Stone told me. Now she can barely leave her house. Low-dose naltrexone has helped. She learned of the drug from other patients, but she said her first long Covid clinic refused to prescribe it because it wasn’t approved for the condition.
Later, when Stone had to go on Medicaid, she spent months searching for a neurologist who would take that insurance and who might prescribe low-dose naltrexone. When she finally found one, Medicaid wouldn’t cover the drug, again because of lack of Food and Drug Administration approval. After two visits, that neurologist stopped accepting Medicaid, so she was left without a clinician to guide her as she started taking the drug.
Encouraged by the experience of other patients she found on Facebook, she kept taking it, despite initial side effects. After two months, she was able to leave her bed and to tolerate light and sound — not a cure but a real improvement for someone very ill.
Stone made it to the Senate hearing, barely, and contributed $5,000 from her rapidly dwindling medical GoFundMe to help other people with long Covid making the trip. It’s a generous and kind act but also a sign of desperation: If something fundamental doesn’t change, these patients are staring into an abyss.
The room Marshall spoke to was a sea of blue T-shirts reading “Long Covid Moonshot,” the name of a patient campaign calling for at least $1 billion a year for long Covid research. This week the N.I.H. announced four years of new funding for the Recover initiative, enough to allow for $129 million a year, on average. That’s a good start, but more is necessary. For comparison, the N.I.H. allocates about $3 billion annually to H.I.V., which certainly deserves ongoing research, but it already has an effective treatment and afflicts about 1.2 million people in the United States (roughly 0.3 percent of the population).
H.I.V. funding did not get that high by itself. To command the attention the illness deserved, H.I.V. activists dogged politicians, occupied government offices and threw at the White House the ashes of people who had died of AIDS.
Many people with long Covid are too sick for such confrontational action. But the AIDS crisis offers another lesson on what might be possible.
In the 1990s, millions of people in sub-Saharan Africa were dying simply because pharmaceutical companies refused to allow poor countries access to the generic, cheaper versions of effective treatments. Bill Clinton sided with the companies.
Then George W. Bush became president. Many Republican politicians initially vilified people with H.I.V., but things slowly shifted, in part because some conservative families lost loved ones and in part because the devastation in Africa exposed how false the “gay plague” framing was — to say nothing of how hateful.
In January 2003, Bush called for $15 billion over five years to fight the disease globally — far above existing U.S. commitments. Despite the country being deeply divided over the imminent Iraq war, Congress agreed. In the past two decades the resulting PEPFAR initiative spent more than $100 billion, and it is celebrated on both sides of the aisle for saving tens of millions of lives.
After the recent Senate hearing, the people with long Covid in attendance met with White House staff members. The mood was optimistic, Stone said, but when patients said long Covid needed more attention from President Biden, his representatives mentioned a single instance when he had mentioned long Covid. Stone and other patients at the meeting told me that the White House blamed partisan conflict for the lack of progress so far. (The White House told me, “We will continue to work closely with public health experts, stakeholders, others on these efforts, and call for additional support and resources from Congress.”)
The hearing — and history — told a very different story. While Marshall has a personal connection to the issue, he wasn’t the only Republican who proved to be not just sympathetic but also informed. Senator Bill Cassidy, the ranking Republican on the committee, who is also a doctor, spoke movingly about treating people with chronic fatigue syndrome, which is also believed to be a postviral illness for many, and asked probing, precise questions on even complicated long Covid topics.
Biden, no stranger to tragedy and illness in his family and with decades of experience in the Senate, could seek bipartisan support and negotiate that moonshot for long Covid: sustained, targeted funding for biomedical research and clinical trials, to be administered in a streamlined manner. And despite many lawmakers’ anger over the N.I.H.’s prior missteps, the agency has new leadership, and a chance to renew public trust.
It’s the smart thing to do: Such research could unlock much more, and history beckons. But most important, it’s the right thing to do. The suffering patients cannot wait any longer.
