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Public Health Advocates Decry CDC’s Weakened Pandemic Guidelines

Critics say the changes are not backed by evidence and put more people at risk for long COVID.

Protestors lay down outside the White House to call attention to those suffering from Myalgic Encephalomyelitis and long COVID on September 19, 2022, in Washington, D.C.

The Centers for Disease Control and Prevention (CDC) announced this month that it has significantly weakened its COVID-19 guidance, reversing course in its recommendation of a five-day isolation period for people testing positive for the disease. The CDC’s new guidance states that people testing positive with COVID-19 only need to isolate for one day if they do not have a fever and symptoms are improving.

The CDC’s federal guidance follows the example set by Oregon and California earlier this year—justified by fewer hospitalizations and deaths from COVID, more available treatments, and a level of population immunity. Despite these assertions, updated immunization rates are low, more than a thousand people are dying each week, and people of all ages and health statuses continue to develop long-term debilitating symptoms from COVID infections. CDC Director Dr. Mandy Cohen argued that aligning COVID guidance with other respiratory illnesses makes it less confusing and easier to follow. Experts and advocates widely condemned the CDC’s decision.

“I think it’s a step in the wrong direction. I think they’re really learning the wrong lesson from this pandemic … There’s no argument against maintaining the five-day isolation guideline,” said Dr. Ziyad Al-Aly, a researcher and physician in St. Louis who works on long COVID and testified in a January Senate hearing on the condition, which impacts some 20 million Americans. “I think it’s primarily politically motivated.”

Gabriel San Emeterio, the co-founder of the Long COVID Justice Network, said in a press conference organized by the People’s CDC that the new guidance is “factually wrong, morally wrong, and practically wrong.”

The CDC’s background report justifying the change presents contradictory information. One section header of the report reads, “Respiratory Virus Guidance does not imply all viruses are the same,” yet the CDC’s own guidelines now line up.

“Although COVID-19 is becoming more similar to influenza and RSV in terms of hospitalizations and death over time, important differences remain, like the potential for these post-infection conditions. Long COVID occurs more often in people who had severe COVID-19 illness but can occur in anyone who has been infected with SARS-CoV-2, including children and people who were asymptomatic,” the report reads.

The report goes on to explain that people often do not know what respiratory illness they have due to asymptomatic spread, decreased sensitivity of rapid COVID tests, and lack of testing. On March 8, the government sunsetted its program to provide limited free tests to the public.

“As the guidelines fly in the face of the CDC’s own data,” said Dr. Kim Rhoads, an epidemiologist at the University of California, San Francisco, in her testimonial at the press conference, “it’s very clear the motivation for the change is not about public health.”

San Emeterio put it bluntly. “We have a name for what the CDC is spreading: misinformation and disinformation.”

National Nurses United and the People’s CDC, along with other advocacy groups such as the World Health Network, have had some previous success pushing back against the CDC’s weakening of public health guidance around COVID. Last summer, the Healthcare Infection Control Practices Advisory Committee (HICPAC), the group that advises the CDC on policy recommendations, faced a flurry of outcry after it released a draft of infection control guidelines that, among other things, equated the protection provided by surgical masks with that of N95 respirators. The misinformation was so egregious, and pushback so full-throated, that the CDC sent the draft back to HICPAC for revision.

Dr. Zoey Thill, a family medicine physician in New York and volunteer with the People’s CDC, noted that the advocacy group had planned a similar strategy to contest the CDC dropping its isolation guidelines. But they never had that chance because the recommendation was released without a public comment period.

“It seems like their plan to proceed through public comment was abandoned when they saw they might have a fight on their hands,” Thill said. The People’s CDC is continuing its letter campaign to elected officials to support bringing back COVID isolation periods — more than 13,000 have been sent as of March 25.

The timing of the relaxation of the COVID guidelines came just days before the four-year anniversary of the official declaration of the pandemic. Throughout the four years, advocates have continued to push for more recognition of long COVID and more resources to help treat it. Those efforts go hand in hand with prevention efforts.

On March 15, which Sen. Bernie Sanders and the Covid-19 Longhauler Advocacy Project introduced as Long COVID Awareness Day, advocates gathered on the steps of Congress. The event featured testimonials from advocates, mostly those suffering from long COVID, who pushed through symptoms to make it to the rally, masking and carrying signs that included messages such as “Long Covid Kills” and “Declare Long Covid a National Emergency.”

Legislatively, there has been some recent movement in Congress at the federal level on issues surrounding COVID-19. This year’s budget includes significant COVID and long COVID funding, though it is unclear how much of that will be renewed. Some $1.15 billion was appropriated in 2021 to the National Institutes of Health’s RECOVER Initiative to research and treat long COVID, though the spending of that funding has faced some criticism.

Several bills related to COVID and long COVID have been introduced in the Senate and the House, but none have moved past initial stages. Al-Aly told Prism the Senate hearing in January about long COVID was a “very good first step” toward raising awareness about the condition, but that “what matters to people at the end of the day is action.” Since the hearing, the NIH announced it would bolster the RECOVER Initiative with an additional $515 million.

Weakened guidelines that stand to increase COVID transmission will mean more long COVID cases that could have been prevented.

“How many people will this new policy kill? And how many people it maim? How many new long COVID cases [will we have] that we would have averted otherwise?” Al-Aly asked. He noted that most of the long COVID patients he sees today developed symptoms after a COVID reinfection.

Without any masking requirements, air filtration could be the next best effort toward protecting people against transmitting COVID. In 2021, the American Rescue Plan gave $122 billion to schools to slow the spread of COVID, including by improving air quality. The government also announced a “Clean Air in Buildings Challenge” in 2022 to make efforts toward improving ventilation in buildings. But without mechanisms for enforcement and further funding, the impact will likely be insufficient.

“We need legislators to involve themselves,” Dr. Thill said. “We need people who are elected to know that the folks they are representing are upset about this.”

Physicians and activists say the CDC’s new guidance should call for a coherent approach to preventing COVID and long COVID. Without a strong authoritative body creating clear guidance based in public health, “each one of us is singing their own tune, and there is very little coordination. And that’s really not good for progress,” Al-Aly said.

Such an approach should include more focus on air filtration, development of a variant-proof vaccine, and an intranasal vaccine that would offer more protection, Al-Aly said. In addition, activists and researchers say there must be better public communication encouraging masking while sick and about the risk of reinfection. Such measures should be paired with mandatory masking in health care, ensuring COVID tests are widely available, and continuing and expanding tracking of long COVID.

Creating this path forward is very much within the CDC’s mandate.

Prism is an independent and nonprofit newsroom led by journalists of color. We report from the ground up and at the intersections of injustice.

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