57 Leading Patient Advocacy Organizations Call on Congress to Block Proposed Rule Threatening Life-Saving Medical Research
WASHINGTON (July 13, 2026) – Today, 57 leading patient advocacy organizations representing millions of Americans living with chronic and acute diseases called on congressional leaders to ensure the Office of Management and Budget's (OMB) proposed Regulation for Federal Financial Assistance is withdrawn before it takes effect. The organizations warn that the sweeping regulatory change would have profound implications for biomedical research and the patients whose lives depend on new treatments and cures.
In a letter sent to House Speaker Mike Johnson, Senate Majority Leader John Thune, House Minority Leader Hakeem Jeffries, and Senate Minority Leader Chuck Schumer, the organizations called on Congress to take immediate action urging the Administration to withdraw the proposed rule before it is scheduled to take effect on October 1.
The organizations are part of United for Cures, a collaborative network of patient advocacy organizations dedicated to protecting life-saving biomedical research that has—for decades—led the world in delivering treatments and cures to communities across the United States.
“We have grave concerns about the Office of Management and Budget’s proposed rule,” the letter states. “In all, more than 300 different changes to federal grant making have been proposed that — if finalized — will have far-reaching consequences on U.S. global leadership in biomedical and scientific research for years to come...We urge you to push for this rule to be withdrawn so that the proposed changes can be fully understood and debated by Congress.”
In the letter, the organizations warn that the proposed rule would fundamentally change how federal research grants are awarded, managed, and terminated. Among other concerns, the letter explains that the proposal could allow research grants to be terminated at any time with little recourse, disrupt clinical trials involving patients with serious diseases, undermine congressional funding priorities, discourage international scientific collaboration, and permanently politicize decisions about medical research.
“The uncertainty caused by this would create a chilling effect on researchers and institutions proposing multi-year, lifesaving trials – cutting short the pipeline for discoveries and treatments,” the organizations write.
The full text of the letter and the list of 57 organizations can be found on the United for Cures website.