$11 billion CDC funding cuts may decimate Long COVID response in several states

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Long COVID research and communications projects in several states may be forced to shut down or curtail their efforts due to recent Trump administration cuts to public health funding. In these cuts, announced in late March, the Centers for Disease Control and Prevention (CDC) abruptly canceled $11 billion in grants for COVID-19 and public health infrastructure efforts.

These grants supported Long COVID programs at health departments across the U.S. The Sick Times has identified specific programs hurt by the funding cuts in Colorado, Minnesota, and Washington; it’s likely that other state public health agencies were similarly impacted, according to sources involved with the work.

While most of the U.S. government response to the Long COVID crisis has taken place at the federal level, some state and local health agencies had important roles in studying the disease and raising awareness. The CDC grants funded state-level Long COVID research, such as surveys, as well as education and outreach programs informing healthcare providers and the general public about the disease.

The funding cuts are temporarily on hold as of early April, when a district court judge ruled in favor of state agencies in a lawsuit that 23 states and Washington, D.C., filed against the federal Department of Health and Human Services (HHS). The judge issued a temporary restraining order, meaning grants must remain in place as the lawsuit plays out. However, the Trump administration has failed to comply with other similar judicial rulings.

“All of the surveillance activities, all of the educational outreach… will all be gone,” said a researcher at one impacted public health agency. (The Sick Times agreed not to publish their name as they are not authorized to speak to the media.)

“There have been pretty massive impacts to the Minnesota Department of Health,” said Kate Murray, manager of the state agency’s Long COVID program. Minnesota is unique in that the state legislature devoted funding specifically to Long COVID, so the program is still operating. But some of its research efforts and support of community organizations were funded by the CDC grants, Murray said.

The news follows the closure of the Office of Long COVID Research and Practice, which coordinated a federal response to the crisis across numerous agencies, along with Trump’s cancellation of the HHS advisory committee on Long COVID. Advocates and researchers are concerned the U.S. is losing crucial resources at a time when the country’s Long COVID response should be fortified, not neglected.

“That loss of coordination from the top sets us back to working in our own silos again,” Murray said of the federal office and advisory committee closures. She and other health officials seeking to address Long COVID are “trying to stitch those networks together organically, without support.”

State and local health departments are uniquely qualified to study how health issues like Long COVID impact particular communities and to respond to those specific impacts, said a Long COVID advocate and member of the Patient-Led Research Collaborative,* who asked to remain anonymous due to her involvement with one of these programs.

“There are so many people out there that have been working so hard on Long COVID, and really care,” the advocate said. “And it’s really awful to see [some of these programs] being shut down.”

There are so many people out there that have been working so hard on Long COVID, and really care … And it’s really awful to see [some of these programs] being shut down.

ADvocate, Patient-Led REsearch Collaborative

Cuts to state-level data collection

While many Long COVID advocates in the U.S. have focused on the CDC, National Institutes of Health (NIH), and other federal agencies, some state and local health departments have quietly stepped up to investigate Long COVID in their jurisdictions, using CDC grants that aimed to bolster public health infrastructure for COVID-19 and other diseases.

An August 2023 report about Long COVID surveillance from the Council of State and Territorial Epidemiologists lists nearly 20 state, local, territorial, and tribal health agencies that contributed to the council’s Long COVID working group. The report describes best practices for Long COVID data collection, analysis, and communication, drawn from these agencies’ work.

One major tool for this research has been the CDC’s Behavioral Risk Factor Surveillance System (BRFSS), a long-running survey that collects data about chronic health conditions and health-related behaviors. State health departments operate the survey and report data up to the CDC. Since 2022, agencies have had the option to ask questions about Long COVID, though states had to opt in and devote funding to this task.

A few state and local agencies, such as California, Minnesota, Utah, New Jersey, and New York City, have also conducted their own Long COVID–specific surveys. A survey by Utah’s health department found that state residents with Long COVID had experienced profound impacts on their medical care needs, mental health, finances, and other aspects of daily life, yet had faced challenges accessing support. Last fall, the agency published a detailed report about Long COVID in Utah, featuring testimonials and art from people with the disease.

But the CDC funding cuts have led some of this research to be curtailed or canceled. In Colorado, for example, CDC grants had funded a contract from the state health department to support Long COVID research at the Colorado School of Public Health.

“If stopped, it would significantly impair Colorado’s ability to better understand the burden of Long COVID in Colorado,” a spokesperson from the Colorado Department of Public Health and Environment wrote in a statement to The Sick Times.

In Minnesota, “staff in the infectious disease area have been particularly hard-hit” by the funding cuts, Murray said. That team had been working with the Long COVID staff on surveillance projects, including phone surveys, epidemiology research, and death certificate analysis, she said.

These cuts to data collection efforts follow another major loss for Long COVID surveillance: the end of Long COVID questions in the Household Pulse Survey, a Census program that had tracked the disease in collaboration with the CDC.

“The BRFSS and the Household Pulse Survey are the two main places where you can get information about Long COVID prevalence as reported by patients at a national level,” said the anonymous researcher. Both surveys also offered data by state, county, and Census tract in some places. “You can get really granular information about where people are suffering and need help. If that doesn’t exist, there aren’t alternatives.”

The BRFSS and the Household Pulse Survey are the two main places where you can get information about Long COVID prevalence as reported by patients at a national level … You can get really granular information about where people are suffering and need help. If that doesn’t exist, there aren’t alternatives.

Long COVID researcher at a public health agency

Outreach, community collaboration

Some states have also used CDC funding to support public outreach about Long COVID. For example, a spokesperson from the Washington State Department of Health said that the recent funding cuts impacted the agency’s communications about the disease.

In some states, Long COVID experts at health agencies educated healthcare providers about the disease, the anonymous researcher said. Surveys helped to inform this outreach, as agency experts could tell providers what to expect in their communities.

CDC funding also supported community organizations, as some agencies awarded funds to these organizations through smaller grants. In Minnesota, the funding cuts led the state to end its COVID-19 Community Coordinators initiative, in which local organizations helped connect community members to COVID-19 vaccines, testing, healthcare, information, and other resources. “It’s really hard to overstate what a loss those contracts are,” Murray said.

In Michigan, the CDC grants had supported a number of vaccination programs, surveillance efforts, collaborations with local organizations, and other COVID-related work. The Michigan Department of Health and Human Services is working with the state’s attorney general to “to address these federal funding cuts and allow important pandemic recovery and preparedness work to continue,” an agency spokesperson wrote in a statement to The Sick Times.

Representatives from public health agencies in California, Colorado, New York State, and Washington State similarly wrote that this funding is critical to addressing continued COVID-19 cases and other health threats.

Funding in limbo as lawsuit proceeds

On April 1, officials from 23 states and Washington, D.C., sued the federal government in an effort to reverse the canceled CDC grants. Later that week, federal Judge Mary McElroy issued a temporary restraining order, which requires that the grants remain in place until the lawsuit proceeds further.

The lawsuit goes back to court for its next hearing on April 17, according to documents on Court Listener. Much of HHS’s rationale for terminating the grants relies on the argument the COVID-19 pandemic is “over,” even though the disease is still circulating widely in the U.S., with hundreds of deaths reported each week — likely an undercount — and many people newly developing Long COVID.

State agencies and private institutions have filed nearly 200 legal challenges to Trump administration actions since January, according to a tracker by the law and policy journal Just Security. Judges have ruled against the Trump administration in many of these cases, but the administration has defied court orders, leading some legal experts to call this moment a constitutional crisis.

It’s difficult to predict what might happen with the public health grants lawsuit, said Murray from the Minnesota Department of Health. However, she was heartened by a recent win in the Long COVID community, in which advocates organized to get NIH research grants reinstated.

“I think that shows that there is room for hope, still, and action,” Murray said. She noted that Long COVID advocates already have a lot on their plate right now, adding, “I think it’s also up to us in public health to keep demonstrating why this work is really important, and we will keep doing that.”

This political moment, in which people with Long COVID and so many other vulnerable groups are under threat, should be a time for “finding community and solidarity,” said the PLRC member. This is a time to “look outward” and “bind together, both for self-preservation and for getting things done.”

I think it’s also up to us in public health to keep demonstrating why this work is really important, and we will keep doing that.

Kate Murray, Minnesota Department of Health

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*Editor’s note: PLRC, like The Sick Times, has received support from the Balvi and Kanro funds. Our newsroom operates independently of financial supporters.

Editor’s note, April 15, 6 PM Eastern: This story has been updated to fix a misstatement in a quote from Kate Murray.

The Sick Times will continue following Long COVID-related news from the Trump administration. Send us tips at editors@thesicktimes.org, or reach out to Betsy on Signal @betsyladyzhets.25.

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