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.”
“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.