The Elizabeth Glaser Pediatric AIDS Foundation urges OMB to withdraw or substantially revise this rule.
Its stated aims, transparency and stewardship of taxpayer dollars, are ones we share. But its provisions do the opposite. They strip the core decisions of federal research and global health funding from the experts who understand the work and hand them to political appointees at every stage, and several add the very paperwork the rule promises to eliminate. The result: global health programs and research that are less rigorous, less stable, and less able to deliver the gains Americans paid for.
EGPAF was born from a mother’s love for her children. While giving birth to her daughter, Ariel, our co-founder Elizabeth Glaser received a blood transfusion that carried HIV, which she unknowingly passed to both Ariel and her young son, Jake. There was then almost no pediatric HIV research and no approved treatments. After Ariel died in 1988, Elizabeth and two friends founded EGPAF to fight for Jake’s life and give other children with HIV a future. For more than three decades, we have advocated for federal research investment because the science that saves children needs resources only the federal government can sustain.
That investment delivered.
In the early 1990s, mother-to-child HIV transmission ran near 30 percent in the United States and up to 50 percent abroad; today it has been all but eliminated here and cut to under 2 percent in many of the countries hardest hit by the epidemic. A diagnosis that once meant near-certain death now lets children survive and grow into healthy adults.
This work cannot be handed to other funders. NIH, the world’s largest public funder of biomedical research, invests nearly $48 billion a year through almost 50,000 competitive, peer-reviewed grants, and sustains that work over the decades it takes to turn a discovery into a treatment. Philanthropy can fill gaps, but it has never been a substitute for federal investment and cannot become one. Narrow or politicize the federal core, and little is left for philanthropy to build on.
And we are close. New infections among children have fallen sharply, and an AIDS-free generation is, for the first time, realistic. But the gains are fragile; HIV returns wherever prevention and treatment lapse. Inserting political control just as the finish line comes into view risks reversing three decades of progress, at a cost counted in children’s lives.
The most damaging provisions:
200.205: Political review of every discretionary award, barred from deferring to technical peer review, risks undermining the integrity and effectiveness of federally funded research and foreign assistance. Whether a study is sound, adequately powered, and not duplicative is a technical question peer review exists to answer, not a political one. Many awards also fund complex public health, humanitarian, and development programs, where good decisions turn on technical capacity, local partnerships, operational feasibility, and likely impact; subordinating those judgments to political review steers resources from the most qualified organizations and most effective interventions. An undefined “Gold Standard Science” test gives officials broad discretion to approve or reject awards on subjective grounds rather than merit.
200.220 and 200.202(e): Entity-agnostic limits on international collaboration would cripple HIV research, which must happen where the epidemic is concentrated. U.S.-funded programs have reached close to four million pregnant women across 14 countries to prevent infant infections; this rule would treat such work as presumptively disfavored.
200.300: Content-based award conditions chill legitimate research and invite self-censorship.
200.340: Broad authority to terminate awards on an undefined “national interest” finding, with little recourse, destabilizes long-term global health programs and the local partnerships that sustain them, harming the patients they serve.
200.432, 200.454, 200.461: Barring journal access and publication costs, including open-access fees, cuts the public off from the research it funded and conflicts with federal public-access policy. Limiting conference participation isolates researchers when findings most need to be shared.
We also oppose 200.204, 200.206, 200.303, 200.421, and 200.450, as well as the rule’s single-date, government-wide binding effect.
A more accountable grants system does not require a less rigorous one or walking away from the foreign assistance and international research that have saved American lives. With the end of pediatric HIV finally within reach, this is the worst possible moment to dismantle the system that brought us here.
OMB’s proposed rule threatens progress by politicizing the funding that makes our work possible.
We’ve made our position clear. Now we need you.
