57 Patient Advocacy Organizations Ask Congress To Block Trump OMB Rule

These United for Cures Organizations Raise ‘Grave’ Concerns About The New OMB Rule

This new OMB rule is an OMG one, as I’ve described before in Forbes. It’s a major rewrite of 2 CFR Part 200. If it were to take effect on October 1 as it’s currently scheduled to do, this new OMB rule would give the U.S. President—currently Donald Trump if you didn’t know that by now—and his political appointees unprecedented power over where federal funding goes and who does and doesn’t get such funding. The letter from these patient advocacy organizations that are part of the United for Cures collective indicated, “We have grave concerns about the Office of Management and Budget’s proposed rule. 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.”

Yeah, the words “grave concerns” take on added meaning when it comes to organizations that represent patients with life-threatening diseases—such as the American Diabetes Association, American Heart Association, American Lung Association, Blood Cancer United, Cancer Nation, Colorectal Cancer Alliance, Friends of Cancer Research, Pancreatic Cancer Action Network, Susan G. Komen, UsAgainstAlzheimer’s and ZERO Prostate Cancer. The letter went on to say, “We urge you to push for this rule to be withdrawn so that the proposed changes can be fully understood and debated by Congress.”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 other words, shouldn’t Congress be talking about this more?

There Is A July 13 Deadline For Public Comment About The New OMB Rule

The White House OMB plopped the new OMB rule down rather quietly on May 29 and offered only 45 days for the public to comment. Since then, over 290,000 comments have already been submitted through the Regulations.gov website. More may still be on the way as the deadline for submitting comments is 11:59 pm ET on July 13. If you look through the existing comments, you’ll find many raising concerns similar to the following concerns outlined by the United for Cures’ letter:

• The possibility that “Research grants could be terminated at any time, for any reason, with little to no recourse. This would leave patients participating in clinical trials without further treatment, potentially wasting millions of dollars in federal funding and taking hope away from individuals who are benefitting from cutting-edge treatments.”
• The concern that the “U.S. would further cede the role of global scientific leader to other countries, including China.”
• The possibility that “Federal funding priorities could be undermined and administered in a way that is inconsistent with Congressional intent.”
• The concern that “Unelected, political appointees — not scientific experts — would determine which research is funded” which “could result in the destabilization of the entire biomedical research system regularly.”

United for Cures describes itself as “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.” So if—or perhaps a more appropriate word is “when”—you or one of your loved ones gets one of the medical conditions covered the organizations united by United for Cures, it makes sense to pay very close attention to whatever United for Cures has to say. And one of the things that these organizations are now saying to Congress is, “The uncertainty caused by this [OMB rule] would create a chilling effect on researchers and institutions proposing multi-year, lifesaving trials – cutting short the pipeline for discoveries and treatments.” So with something that could cause a “chilling effect,” presumably Congress shouldn’t just “chill” and not do anything.

Members Of Congress From California Have Sent A Letter Demanding That The New OMB Rule Be Rescinded

Now, I have continued to send inquiries to contacts at the federal government, different federal agencies and the legislative branch about this new OMB rule and reactions to it. As I get responses, I will continue to update my articles accordingly. The office of U.S. Senator Adam Schiff (D-California) has informed me that Schiff, U.S. Representative Zoe Lofgren (D-California-18) and 42 members of the California congressional delegation did send a letter on July 8 to OMB Director Russell Vought demanding that the new OMB rule be rescinded, saying, “The rule is unprecedented, expansive, and applies across the federal government to every agency that reviews grants and other financial assistance proposals. It would allow political appointees to control all aspects of the grant review process, setting the stage for politically motivated decision-making that places the whims of the President over the well-being of the American people.”

The letter from the California contingent went on to warn, “The proposed rule would weaken the scientific foundations of experimental research, slowing the development of new treatments, strategies for environmental protection, technologies to expand our knowledge of space, and solutions to some of our most pressing questions.” It also emphasized that the impact would extend to affect higher education, state and local governments and many other aspects of society. “The effects of this rulemaking could reverberate for generations. With such funding uncertainty and unpredictability, California and the rest of the country will backslide behind other nations in the areas of health, innovation, research, and scientific development,” the lawmakers wrote. “As such, we strongly urge you to rescind your proposed rule.”

Of course, California is certainly not the only state that will be greatly affected by this new OMB rule. Governments, institutions, businesses and basically all humans—and probably a lot of cats, dogs, alpacas and other animals—in basically every state in the U.S. will eventually feel the impact. The new OMB rule would also give the U.S. President and his appointees more power to override federal funding decisions made by Congress. The question then is what will Congress decide to do about it.