Patients asked a CDC advisory panel to be more transparent. Then their comments disappeared.

Patients and advocates for protecting against SARS-CoV-2, the airborne virus which causes COVID-19, asked a federal advisory panel on Tuesday to open up the process it uses to develop guidelines for controlling infectious disease followed by health facilities across the United States.

After inviting public comments and hearing some speak for less than an hour at a virtual meeting on Tuesday, the Centers for Disease Control and Prevention (CDC) took down the only public-facing recording. The CDC put the video back up on Wednesday after numerous inquiries into why it was removed from YouTube.

The Healthcare Infection Control Practices Advisory Committee (HICPAC) is a federal advisory committee to the CDC. Since February 2022, HICPAC has been working to update the CDC’s guidance around infection control practices for many different pathogens in hospitals and other health care settings.

The full committee appointed an 11-member working group to draft an updated version of the guidance. A vote on the guidance, which is still not publically released in full, had been set for Tuesday’s meeting. The committee delayed the vote until November.

During the Aug. 22 meeting, public commenters asked the federal committee to publish the draft guidance, and make the working group meetings open to the public, along with any of their reports and presentations.

Fourteen people spoke during the public comment period that lasted 41 minutes, despite the committee recognizing more people registered to speak.

National Nurses United President Zenei Triunfo-Cortez tried to speak, but when HICPAC called on her, they did not unmute her, and quickly moved on to the next speaker.

“When we tried to get information about these meetings via the Federal Advisory Committee Act (FACA), our request was denied,” Triunfo-Cortez said in a news release on Wednesday. “We submitted a FOIA request to the CDC and received 279 pages of redacted documents.”

Shortly after the meeting ended, the CDC took down the YouTube recording. Anyone who clicked on the link to the recording was met with an image saying the video is private.

“Once the live event was over, we took it down and I guess that’s when it was labeled private and inaccessible,” said Martha Sharan, press officer at the CDC’s Division of Healthcare Quality Promotion. “Not sure if that’s something that YouTube automatically generates.”

Sharan went on to indicate the video was taken down because its only purpose was to allow the event to be watched live.

“However, realizing the great demand to view the HICPAC meeting, CDC decided to re-post it,” she said.

The Aug. 22 meeting was the first HICPAC meeting to be recorded on video, Sharan said, “in response to additional interest after the registration window had closed.”

“YouTube was added for the live event,” Sharan said. “It was in response to the overwhelming number of requests that came in after the registration window had closed.”

Source NM has also asked for CDC to be more specific about when exactly it took down the video, and when it put it back up. We’ve also asked who made the decision to take it down. The story will be updated if and when the CDC responds.

Yaneer Bar-Yam, a co-founder of the World Health Network, said since there were many more people at the HICPAC meeting than time for comments allowed, his organization will host a recorded Zoom meeting for anyone who wants to comment on the guidance at 12:30 p.m. MST on Thursday, Aug. 24.

HICPAC members are welcome, Bar-Yam said, and his organization will make the recording available to the federal committee and the public.

“This will ensure that more voices are heard on this critical topic,” Bar-Yam said.

Specific transparency concerns

Deborah Gold, an infectious disease specialist and hospital epidemiologist, said despite repeated requests, CDC has not published a draft of the proposed guidelines.

Sharan said the CDC will release the draft guidance “when it is completed and ready for review.”

The working group’s meetings are not advertised and are closed to the public. Gold said there have also been repeated requests for CDC to publish the group’s minutes.

Sharan said the working group meetings are “designed to be working meetings to allow for input from a range of experts and professionals in the field.”

“Decisions about recommendations to CDC are made by the full committee and not the workgroups,” Sharan said. “Those committee meetings, with discussion and public comment, are always open to the public.”

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National Nurses United wrote to CDC Director Mandy Cohen on July 10 expressing concern about HICPAC’s guideline update, and nearly 900 public health experts on July 20 wrote a similar letter to Cohen, about the lack of transparency and the failure to address and protect against aerosol transmission of infectious diseases.

The CDC responded to the second letter on Friday, Aug. 19, but did not provide any indication there would be any traction to meet the requests to open up the process and involve key experts and stakeholders, according to one of the authors, Peg Seminario, an industrial hygienist who served for 30 years as the health and safety director at the AFL-CIO.

“We are deeply dismayed that the CDC response did not address any of our substantive concerns about the weakness of the guidelines,” Seminario said.

No minutes or transcripts of any HICPAC meetings so far in 2023 have been posted to the panel’s website.

Sharan said federal rules give the government three months or 90 days to post meeting minutes, and the June HICPAC minutes will be available within that time frame.

Including Wednesday, it has been 77 days since the June meeting. The deadline to post the minutes is Sept. 5.

Rachel Weintraub, executive director of the Coalition for Sensible Safeguards, urged the federal agency to immediately seek input on the rule proposals from the public, health care workers, unions, engineers with expertise in ventilation and research scientists with expertise in aerosols.

As the guidelines are being written, Weintraub also urged the CDC working group to create a public docket for the guideline’s development, including all meeting minutes, drafts, all scientific evidence used, and public comments submitted.

The Centers for Disease and Control and Prevention did not directly respond to Source NM’s question about whether they intend to create a centralized public docket specifically for the update to the Isolation Precautions Guidance.

“CDC hospital infection control measures are still failing to protect health care workers and patients,” Seminario said. “We need to do more. CDC must develop strong infection control guidelines that fully protect against aerosol transmission, and open up the development process to include necessary experts and members of the public.”

What do we know about the proposed guidance?

The small amount of information about the draft guideline comes from slides summarizing the working group’s efforts.

The slides discuss a review of evidence on how effective high-filtration respirators like N95s are in reducing viral infections versus loose-fitting surgical masks. The review concluded there is “no difference” between the two.

The problem is, the review used studies that do not account for airborne transmission nor asymptomatic spread. The studies only required health care workers to wear N95s when very close to the patient and when they’re showing symptoms.

The evidence review was flawed and must be redone with input from experts in respiratory protection, aerosol science and occupational health, said Liv Grace, a physically disabled and chronically ill person who already lives with many of the conditions associated with Long COVID.

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Denying the well-proven science of N95 respirators would be a significant step backwards, said Kaitlin Sundling, a pathologist, lab-based clinician, and member of the People’s CDC.

“Matching our understanding of the science of aerosol transmission to our precautions in health care allows us to work to build public trust and destigmatize aerosol transmitted infectious diseases, especially whereas asymptomatic transmission is common, as with COVID,” Sundling said.

The evidence review failed to mention any of the studies showing that continued use of N95s in health care settings does lower infections, said Shea O’Neil, a WHN volunteer, patient, disabled rights advocate, and sole caretaker of her son who is high-risk with a disability.

O’Neil also criticized the evidence review because it highlighted the discomfort of wearing a mask, and ignored the damaging and widespread effects of Long COVID. 

The CDC slides do not thoroughly discuss isolation and do not mention early identification and isolation of infected people, Gold said. 

Appropriate isolation for known or suspected aerosol pathogen infections of any kind, including COVID, must include N95 respirators at minimum, and appropriate ventilation controls, Sundling said.

“I don’t know if this is ignorance, immorality, if it’s conflict of interest, or money, or psychological coping at play, but I’ll tell you: science and logic are not at the table, and they need to be brought back,” O’Neil said.