(Bloomberg) — While the U.K. races ahead treating patients suffering from the long-term effects of Covid-19, the U.S. is falling behind as a result of its decentralized health care system.
Absent national oversight, U.S. scientists studying and treating the post-viral syndrome have been operating in silos. Hospital systems, clinics and insurers have inconsistent patient records, which poses a daunting task for those trying to find data on long Covid, much less draw conclusions from it. Clinicians have developed treatments largely in isolation, and while 42 states have at least one long Covid clinic, those are primarily concentrated in urban areas. Not until June did the U.S. Centers for Disease Control and Prevention issue guidance on long Covid, and though national studies are finally underway, standardized treatment won’t come soon.
The U.K., meanwhile, has been collecting data and standardizing treatment since late 2020, setting up 83 long Covid clinics that use the same guidelines for care. Building on the country’s previous efforts, which include prevalence estimates and studies targeting hospitalizations after acute Covid, the U.K.’s National Institute for Health Research said Sunday that $27.5 million will go to 15 studies analyzing the causes and physical and mental impacts of the syndrome.
Though the U.S. has dramatically decreased the rate of acute infections, the country’s total case count — the world’s highest at more than 34 million infections reported — means millions are likely to have suffered or to still be suffering from long Covid. As the delta variant spreads and pockets of the U.S. resist vaccination, the death rate and number of long Covid cases are lagging indicators of the nation’s record fighting the pandemic.
“We’re worried right now about the acute phase, and we figure we’ll deal with the chronic thing later,” said Michael Kinch, associate vice chancellor at Washington University in St. Louis, who as a scientist himself helped develop drugs. “But how many people could potentially be losing out because we’re taking this approach?”
An estimated 3.2 million people in the U.K., or 6.2% of its adult population, are experiencing long Covid symptoms that are adversely affecting their daily life, according to the latest self-reported survey from the nation’s Office of National Statistics.
No such prevalence estimates have been released in the U.S., where data collection and resource distribution is far more fragmented.
Clinics each have their own systems for collecting patient information, so some researchers are relying on insurance databases to find facts on so-called Covid long-haulers. Even that’s not a perfect fix: Without a billing code specifically for long Covid, researchers have to wade through records in search of relevant data.
“Our clinic collects certain information which somewhat overlaps with other clinics, but everyone does things a little differently, which makes combining the data more challenging,” said John Baratta, co-director of the long Covid clinic at the University of North Carolina at Chapel Hill.
Charlotte Summers, chief investigator of the U.K.’s national HEAL-COVID clinical trial, works directly with the hospital system and the Institute for Health Research to study and treat patients experiencing severe symptoms in the weeks after Covid-related hospitalizations. She said the U.K.’s linked health care and research infrastructures have been critical to progress.
“It’s been absolutely key to delivering vaccine trials, therapy trials and everything else,” she said. “They’ve diverted resources and made sure barriers go away.”
Efforts to standardize Covid patient data in the U.S. and beyond are underway. The World Health Organization is working to launch an ICD-10 diagnostic code for long Covid in October, which will make it easier for researchers to study health records.
Last September, the U.S.’s National Institutes of Health launched the National Covid Cohort Collaborative, or N3C, which is now one of the biggest repositories for Covid records in the world. Still, it falls on N3C’s technicians to standardize data.
Christopher Chute, co-lead of the N3C at Johns Hopkins Bloomberg School of Public Health in Baltimore, said that machine learning has helped find about 1,000 patients who they are confident have long Covid — out of 6.5 million in the data. He said that while the U.K. has many more patient records available, most are less detailed than the information that N3C collects.
“They can’t do the integrated work we’re doing in N3C,” he said. “We have a much smaller patient population, but their data on average is much more shallow.”
Alba Azola, co-director of physical medicine and rehabilitation at Johns Hopkins’s post-acute Covid clinic, has been treating long-haulers since April 2020. Last month, her colleagues on the Covid research team approached her and the other directors about creating a long Covid clinic. They were unaware that one already existed.
“It was really awkward, actually,” she said. “Communication between institutions, and even within the same institution, has been very fragmented.”
In order to stay informed on the latest research, Azola has weekly meetings with her long Covid clinic team, as well as autonomic dysfunction experts to discuss recent national and international findings. Twice a month, she spends her evenings in video calls with members of the Academy of Physical Medicine and Rehabilitation, talking about assessing and managing long Covid symptoms. She also said that monitoring “long Covid Twitter” helps find studies as they’re published.
“I’m exhausted just thinking about it,” she said. “It’s scary if you’re a family doctor in the middle of a rural area — you’re not in a position to attend all these meetings and read all these papers to stay on top of it.”
National studies on long Covid are now underway in the U.S., using $1.15 billion in funding that Congress earmarked for the research in December 2020. In May, the National Institutes of Health selected three institutions to lead trials, involving dozens of researchers across the country and some 20,000 participants.
Andrea Troxel, co-principal investigator of the New York University Langone Health team that the agency selected, said the initiative will be critical for finding markers of long Covid, which are difficult to identify.
“That has to be done really intentionally, because we live in a system that doesn’t automatically support it,” she said.
Still, Troxel said, it could be another year before the first round of findings. The second phase of the studies will focus on finding therapies.
U.K. researcher Summers said treating the hundreds of thousands patients affected should take precedence.
“You can either wait and decide that you know absolutely everything about it, and let thousands of more people potentially be harmed, or say, we think we know enough now and there’s equipoise around certain therapies, so we should start randomizing people,” she said.