By Bhanvi Satija and Christy Santhosh (Reuters) – A two-day meeting aimed at raising awareness among policymakers and public about rare diseases scheduled for the end of the month has been postponed, the U.S. Food and Drug Administration’s website showed on Friday. This is the second event deferred by a health agency in the first […]
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US health agencies postpone rare diseases event in an unusual move
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By Bhanvi Satija and Christy Santhosh
(Reuters) – A two-day meeting aimed at raising awareness among policymakers and public about rare diseases scheduled for the end of the month has been postponed, the U.S. Food and Drug Administration’s website showed on Friday.
This is the second event deferred by a health agency in the first week after Robert F. Kennedy Jr. was confirmed as the secretary of Health and Human Services. A meeting of U.S. vaccine advisers set for late-February was postponed on Thursday.
The FDA “will reschedule” the event “in the coming months”, a notice on its website showed. Both the FDA and the National Institutes of Health were sponsoring the event.
At least two rare disease advocates said the announcement was unusual and noted that the agencies have been negatively impacted by the new administration.
“Outside of a global pandemic or a government shutdown, the Rare Disease Day at the NIH, has gone forward every single year,” said Paul Melmeyer, who overlooks public policy and advocacy at Muscular Dystrophy Association. Melmeyer said he had been attending the NIH’s event since at least 2013.
As President Donald Trump’s administration overhauls federal agencies, employees at the FDA and NIH have been laid off in recent days. While it is not yet clear how many FDA employees have been affected, more than 1,100 people were laid off at the NIH.
“We are aware that the agencies are being significantly impacted by the recent executive orders… (and) can only assume that these shifts have made it challenging to host an event like this at this time,” a representative for non-profit EveryLife Foundation for Rare Diseases said.
The event’s agenda was set last week and several executives from both the agencies, including FDA acting commissioner Sara Brenner and Matthew Memoli, acting director of the NIH, were scheduled to speak.
The Rare Disease Day is observed globally every year on February 28, or February 29 in leap years, since its creation in 2008.
(Reporting by Bhanvi Satija and Christy Santhosh in Bengaluru; Editing by Shilpi Majumdar)