New Bill Would Up NIH/FDA Funding For Neglected Diseases

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Last Thursday, Elizabeth Warren (D-MA) and Patty Murray (D-WA) introduced an important new bill which seeks to increase funding for biomedical innovation and targeting diseases with unmet treatment needs.

The $5 billion proposal, called the National Biomedical Research Act, is just one of six bills now being discussed by the Health, Education, Labor & Pensions (HELP) Committee to overhaul and streamline the nation’s approach to contending with our most pressing healthcare research needs. If this legislation were to pass, an additional $5 billion  would be distributed, annually, between the NIH and the FDA from now through 2026. This bill comes on the heels of a tele-briefing held by the NIH Tuesday morning where the institute announced it is launching an intramural protocol to advance the study of ME/CFS within the organization.

Though this new bill doesn’t restrict the use of these additional appropriations to any one particular field of study, it does highlight general areas that the funds must be focused toward. Some of these areas are disease diagnosis, prevention, and treatment which fall under the Precision Medicine Initiative (PMI), the NIH’s BRAIN initiative, and “disruptive” research, or research that focuses on diseases that are less understood and invested in.
Because of the NIH’s recent pledge to dedicate more money to ME/CFS research, as well as the language in the bill, this legislation could have positive implications for the ME and chronic illness communities. Right now all we can do is speculate, but if the additional funds are approved, here are some things to consider:

There is an inherent awareness in the bill’s language of a need for attention to diseases that have gone largely unnoticed by the mainstream.

“Amounts distributed from the fund shall be used to support research that fosters disruptive innovation…”
S. 2624

The wording of the bill suggests that this influx of new money is being requested for specific purposes that are in line with the goals of our community. Disruptive innovation includes research into illnesses “for which treatments are inadequate” or “for which there are unmet medical needs.” The bill also highlights chronic illnesses as a focus due to their  disproportionate toll on healthcare spending. ME falls well within these parameters. Research of ME is picking up in the private sector and this bill suggests that grants requested by those research institutes would now receive a closer look than they have before.

With the FDA receiving a large chunk of these appropriations we could expect a beefing up of drug research for ME.

“(iv) research on new approaches to treatment of diseases using drugs, devices, or therapies that, at the time of distribution under paragraph (2), are not used or are underused.”
S. 2624

Ampligen is a perfect example of a treatment that, either because of neglect or lack of awareness, has not been approved by the FDA even though it has been proven effective for many ME sufferers around the country. There is still no reliably effective treatment for ME, even Ampligen falls short on most accounts, but these new funds would be directed at finding such treatments and approving them for use quickly by eliminating a lot of red tape.

The National Biomedical Research Act could put increased pressure on the NIH to back up what they’ve been saying about their newfound dedication to ME/CFS research.

The sense of urgency behind this legislation is unprecedented as the President and Congress urge the House to pass the National Biomedical Research Act and a swath of other medical innovation bills expeditiously. With the new resources provided by S. 2624, the NIH would undoubtedly have the ability to fund the intramural protocol and extramural investments that it promised the ME community on Tuesday morning.

At #MEAction we’ve always pledged to empower the ME community to accomplish goals as a unit that would be impossible for us to accomplish individually. One of those goals has long been to convince the NIH to equitably fund ME/CFS research in proportion to the economic toll it takes on society and the physical, mental and psychological toll it takes on its victims. It is our hope, based on the new tone of the NIH, that if the National Biomedical Research Act were to pass, an equitable share of the roughly $2 billion increase will be used to fund ME/CFS research.
But only time will tell.

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