Comments on OMB research rule mysteriously removed from federal website

[u/John3262005]

https://www.statnews.com/2026/08/25/russell-vought-omb-funding-comments-daughter-benefited-nih-research/

For the past couple of years, Magdeleine Bradford-Butcher has been living on the cutting edge of science. When prenatal testing showed the baby she was carrying had cystic fibrosis, her doctor put her on Trikafta — a relatively new treatment aimed at preventing severe complications from the genetic disease after birth.

Trikafta and other advances have dramatically changed the outlook for children with CF, but she was taken aback when, as she recalls, one of the physicians told her after the delivery, “With all of the new developments, your daughter has a very good chance of outliving you.” It was a glimmer of optimism amid a scary diagnosis. “Nobody had said that to me before, and that was incredible,” she said. “That’s something I treasure.”

So when she heard about a pending White House regulation that would open federal science funding to more political intervention, she was concerned. With the encouragement of the Cystic Fibrosis Foundation and a favorite science influencer, Jessica Knurick, she decided to submit a public comment on the proposal describing how she had benefited from research funding.

“Seeing how quickly they could revoke grants when that was so crucial to so much research was very disturbing. So that’s the basis of why I commented,” she said in an interview. She worried that the proposed wholesale rewrite of laws undergirding all federal contracts, including research grants, could affect work on other children’s diseases, but also a study her daughter was involved in, examining the outcomes of children who had been given Trikafta in utero. “I was really worried about whether or not that project could get cut for any arbitrary reason.”

What happened next was unusual, according to legal experts, and mysterious. Soon after Bradford-Butcher’s comment was publicly posted on the federal government’s regulations.gov website, it was taken down without explanation by the White House Office of Management and Budget.

The webpage that once housed her comment now says “Withdrawn” and that it was removed “per policy.” Bradford-Butcher’s is one of 42 comments that were initially published to the docket and later removed. It’s unclear why those specific comments, out of the 164,000 currently posted, were removed from the public record, and OMB did not respond to a request for comment clarifying the specifics of the cited policy. But 10 of the excised comments note that OMB Director Russell Vought has benefited from federally funded research because his daughter has also been treated with Trikafta.

The withdrawals were first noticed by Abigail Haddad, a former AI engineer for the federal government, and Christopher Marcum, a former senior OMB statistician, who have been tracking the reactions to the OMB proposal. Because they’ve been downloading new comments as they come in and analyzing them using artificial intelligence on a dashboard, they were able to catalog the since-deleted comments.

Bradford-Butcher’s comment called out specific subsections of the proposed rule that worried her, and ended with a personal plea. “This is also deeply personal to Russell Vought …” she wrote. “He probably isn’t reading these but just in case: Russell, for the sake of your daughter and mine, please do not make these rules effective. Let the scientists, the medical researchers, the experts who created miracle drugs for CF like Trikafta stay the course. Let’s fund them. Maybe our daughters will outlive us.”

Legal experts consulted by STAT were puzzled by the removal of the comments referencing Vought. “I don’t see anything obscene. I don’t see anything threatening. I see somebody trying to make an argument by analogy and make an appeal to a public official based on a commonality in their personal life, and that is fair game for a comment. OMB would be expected to respond to a comment like this in its final rule under legal rules that agencies are subject to for how they finalize rules,” said Bridget Dooling, a law professor at Ohio State University who has written about the laws guiding the public comment process and who previously worked as a policy analyst at OMB.

OMB’s recent proposal to change what is known as the Uniform Guidance would de-emphasize peer review in guiding funding decisions and make grants easier to terminate, which led the scientific community to launch a campaign to encourage public comments in opposition to the rule. There are currently 164,653 comments on the docket, and a STAT analysis of the 50,000 comments published as of mid-July showed they were largely negative. Agencies have to respond to substantive comments in the final version of the rule, and failing to do that could aid in any litigation challenging the rule.

“What’s unusual is the lack of detail in the withdrawal log. Typically, you see the specific policy, and then typically you would see some date and time of removal,” said Kali Murray, a legal expert at Marquette University who specializes in the intersection of administrative law and scientific decision-making. She added that should the rule be challenged in court, removing some comments without specifying a clear policy could trigger more scrutiny from a judge.

Federal agencies have discretion in what comments they post to regulations.gov, the public-facing website that hosts the dockets for proposals. Generally, comments won’t be posted if they are wholly irrelevant to the proposed rule, if they contain obscenities or threats, or if they include information that should not be released publicly (like individuals disclosing their Social Security numbers or companies disclosing proprietary information). But that process typically occurs before comments are posted.

That Vought’s child has cystic fibrosis, and has benefited from Trikafta, has long been public knowledge. In 2014, Vought and his wife, Mary, themselves wrote on a conservative news site that their second child, Porter Louise, had been diagnosed with the disease. “Because of Porter, our hearts break for sick children and their families in a new way,” they wrote. In 2022, Mary Vought went on a podcast saying that her daughter had been on the “breakthrough medication” for several months. “It is very, very, very hopeful,” she said of her daughter’s health.

“It’s very weird because there’s no legal implication to those [comments] being on or off of regulations.gov,” said Stuart Shapiro, dean of the Rutgers School of Planning and Public Policy and a former OMB official who has written about the role public comments play in shaping regulation. “There’s no reason to do it, unless it was offensive to the head of OMB there, which I suspect it might have [been].” Adding more confusion to the matter, there are still some comments on the docket that mention Vought and Trikafta.

The removal of comments from public view also keys into a tension in the federal rulemaking process that has emerged with its democratization in the digital age. The tagline on regulations.gov reads “Your Voice in Federal Decision Making.” But most comments are submitted by policy wonks, pointing out edge cases in which policies may go awry or unintended consequences result from proposals.

“The sort of prototypical agency regulation is sort of highly technocratic, highly technical. It’s just filling in the details. But every now and then you see these rules that punch through, and they punch through for a reason, right? People care about this stuff,” Dooling said.

She views comments from the general public as sentiment meant more for the political side of agencies, or for Congress. “It’s fair game and good for people to connect their lived experience to whatever the government’s doing,” she said. “The question is, what happens when that just gets jammed into something like the rulemaking process, which is not really designed to contain or process that emotional content?”

It was that sort of lived experience that led Laura Ruby to comment on the proposal. As a novelist and poet, she was not directly involved in scientific research. But she saw the byproduct of that work plenty. As a cancer survivor, she was familiar with the academic medical system. “When I just wrote this short comment, I just thought I have had this very long-term relationship with my doctors, and I’m still here because of them, and they in turn conduct research,” she said in an interview.

In her comment, she wrote, “Researchers themselves are not the only ones affected by this insane directive; millions of people like me have benefitted from cancer research, invaluable research that has extended my life by nearly ten years,” before noting Vought’s connection to research through Trikafta.

If flooding regulations with comments is intended partly to sway elected officials, it seems to have worked in this case, at least for now. The Senate’s bill to fund the government through December temporarily blocks the implementation of the rule.