NEW YORK (AP) — The CDC is in chaos and some groups are starting to step in and take over work the agency was doing.

These moves follow Health Secretary Robert F. Kennedy Jr.’s considerable — and some argue unlawful — restructuring and reduction in size of the Atlanta-based Centers for Disease Control and Prevention.

Many seasoned public health professionals perceive an agency stricken by a leadership turmoil, reductions in staff, budget slashing, and unparalleled levels of political interference. The issue reached its peak when the White House attempted to dismiss the agency’s director, leading to resignations of some high-ranking CDC officials in protest.

But even before CDC Director Susan Monarez was fired, some organizations started pursuing new ways to do jobs formerly handled by the CDC.

Some individuals are working to uphold established vaccination guidelines. Others are striving to disclose information that the CDC has ceased to provide. Additionally, there are efforts to sustain health data collections that are in jeopardy of disappearing.

However, these external initiatives lack the federal funding, resources, legal authority, or platform that serve as the backbone of the nation’s public health framework. As commendable as these efforts are, they likely won’t suffice, according to some experts.

“There might be some alternatives,” stated Dr. Megan Ranney, dean of the Yale School of Public Health. “But I’m unsure if it’s just or right that individuals feel compelled to rely on private organizations rather than the government.”

Vaccination guidance tops the list

For decades, the CDC has set the nation’s standards on vaccines — which ones are recommended and who should get them.

The recommendations were guidance, not law. But they were automatically adopted by doctors, school systems, health insurers and others.

They were the result of a lengthy data review process involving a panel of outside experts, the Advisory Committee on Immunization Practices.

Nevertheless, in May, Kennedy — a prominent figure in the anti-vaccine movement — declared that COVID-19 vaccines would no longer be recommended for healthy children and pregnant women. He made this decision without consulting the ACIP.

In June, he abruptly dismissed the entire panel, accusing them of being too closely aligned with manufacturers. He replaced them with a handpicked group that included several vaccine skeptics, and then shut the door to several doctors groups that had long helped form ACIP recommendations.

It’s not clear what other changes are in store for ACIP, but a number of medical groups say Kennedy can’t be counted on to make decisions based on robust medical evidence.

The moves sparked a group of public health researchers and others to form the Vaccine Integrity Project, based at the University of Minnesota, which is aims to become the kind of compiler and reporter of medical evidence that the CDC and ACIP have been in the past.

A committee meeting without CDC

In mid-August, the group held an ACIP-like Zoom meeting, in which subject-matter experts presented lengthy reviews of recent research about the safety and effectiveness of COVID-19, flu and RSV vaccines for children, pregnant women and people with weakened immune systems.

It also featured a four-person panel of experts, including the editor-in-chief of the New England Journal of Medicine. Like ACIP members, they asked presenters questions about their analyses.

Presenters made clear that they had to base their presentations on what had appeared in medical journals and was publicly available; they weren’t privy to unpublished surveillance and safety data that CDC collects.

The group is not making vaccination recommendations itself. But it is working with doctors organizations that are. One is the American College of Obstetricians and Gynecologists, which has said pregnant women should continue to get COVID-19 shots — counter to what Kennedy announced. Another is the American Academy of Pediatrics continuing to recommend them for children ages 6 months to 2 years.

But as medical societies split from CDC, it’s not yet clear which recommendations insurers will heed when making coverage decisions. And there remain a number of other questions, such as: What will happen in states that have vaccination policies tied to ACIP recommendations?

In Massachusetts, Democratic Gov. Maura Healey included language in a $2.45 billion supplemental budget bill that gives the health department authority to set its own recommendations and requirements if the federal government “fails to maintain a robust schedule of vaccine recommendations.”

Some other efforts now underway:

Vaccine finders

During the COVID-19 pandemic, the CDC teamed up with researchers at Boston Children’s Hospital and Harvard Medical School on www.vaccines.gov. The website told about newly developed vaccines recommended to protect against the coronavirus and served as a search engine to help people find nearby pharmacies that had the shots in stock.

But the site gradually dropped information about vaccines and why they were recommended, and this year became a stripped-down version that simply said: “Find a pharmacy near you” and a box to type in your zip code. When the government’s contract with Boston Children’s Hospital ended in late July, the site stopped working altogether.

Researchers at Boston Children’s Hospital this month restarted a version of the site that existed before the pandemic, www.vaccinefinder.org.

“We’re turning back to what it was,” said John Brownstein of Boston Children’s, who founded the site. “Obviously, as a (government) site it carries more weight. But if that isn’t in the cards, we’re very happy to carry the torch.”

Dental safety

Last month, the Association for Dental Safety launched a new institute for dental safety that was designed to pick up some of the work done by the CDC’s Division of Oral Health, which was eliminated in the spring. The new institute is first focused on updating infection controls guidelines for dental offices, which the CDC last updated in 2003.

“Without a doubt, ADS is the best choice to continue oversight of dental infection prevention and control guidelines, ensuring recommendations are current, scientifically sound, translated into lay terms and disseminated to those who need them on a daily basis,” said Nicole Johnson, former associate director in the CDC’s Division of Oral Health, in a press statement.

Pregnancy data

The CDC’s Pregnancy Risk Assessment Monitoring System, which annually surveys women across the country, lost its entire staff — about 20 people — in layoffs this year. It was the most comprehensive collection of data on the health behaviors and outcomes before, during and after childbirth. Researchers have been using its data to investigate the nation’s maternal mortality problem.

Some states that have the money and motivation might decide to run similar surveys, just within their borders. California runs its own, PRAMS-like survey.

But “if states are doing their own thing, then we don’t have national, comparable data across jurisdictions and across time,” meaning its not possible to see where problems are most severe and which policies to reduce maternal deaths are working, said Jamie Daw, a Columbia University health policy researcher focused on pregnancy.

Violence prevention

Kennedy recently fired about 100 CDC staffers who provided training, education, and advice to state and local violence prevention programs, and evaluate how well they were working.

“What’s the point in knowing the about the rates of violence if you’re not going to do anything about it?” said Sarah DeGue, one of the laid-off CDC researchers.

But existing programs still need technical guidance and expertise. In May, DeGue founded Violence Prevention Solutions, a consulting firm, to help community organizations develop and evaluate programs.

“It’s us trying to rebuild what we had somewhere else, in a different way, so that all the knowledge and experience and resources that we had can still be available,” she said.

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AP reporter Michael Casey in Boston contributed.

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