On February 7th, the National Institutes of Health (NIH) announced a drastic, immediate reduction in overhead funding for universities, medical centers, and research institutions—cutting indirect costs to a flat 15% rate. This significant reduction jeopardizes essential research, including groundbreaking work on treatments for Prader-Willi syndrome (PWS) and Schaaf-Yang syndrome (SYS).
This change, which is currently on hold by a federal court, will remove an estimated $4 billion annually from the infrastructure supporting medical research across the country. More than 2,000 universities and medical centers across the US will be impacted, with large academic medical centers – those that do the most rare disease research – losing tens of millions of dollars to support their research activities. The fallout will be severe: universities will need to lay off critical administrative and research support staff, slow down essential studies, and potentially halt clinical trials—trials that offer hope for families affected by PWS and related disorders.
Why This Matters
Indirect costs are a crucial component of NIH funding. While researchers receive funding for direct costs (e.g., salaries, microscopes, lab materials), indirect costs support the infrastructure that makes research possible. These include:
- Lab upkeep and utilities
- Administrative staff managing compliance and safety
- Access to hazardous materials disposal
- Institutional Review Board (IRB) oversight for ethical clinical trials
- Research IT support and security
The NIH spent approximately $32 billion on nearly 60,000 research grants in the last fiscal year. Of that, $23 billion funded direct research, while the remaining $9 billion covered these essential overhead costs. Medical research is expensive. Without adequate indirect cost funding, research institutions will struggle to sustain critical research or may decide to eliminate research programs entirely, threatening the progress we’ve made in advancing treatments for PWS.
NIH funding is absolutely critical to the discovery and development of treatments for rare and common diseases. A recent study showed that 354 of 356 (99.4%) new drugs approved by the FDA from 2010 to 2019 had been developed with support from the NIH. FPWR funding works hand-in-hand with NIH funds to move PWS | SYS research forward.
The Impact on Prader-Willi Syndrome Research
The Foundation for Prader-Willi Research (FPWR) limits indirect costs to just 8% for grant recipients, leveraging NIH support to ensure research dollars go further. However, with NIH indirect costs now capped at 15%, universities may be unable to sustain PWS research efforts at current levels. Institutions will be forced to make up for the shortfall by shifting costs to private foundations like FPWR—an unsustainable solution that could further slow progress. We Need Your Voice: Take Action Now
Congress needs to hear directly from the families and communities impacted by rare disease research. We urge you to email or call your representative and demand that they protect NIH research funding. Let them know how crucial this funding is to PWS research and that the 15% cap is unrealistic.
The stakes are too high for us to remain silent. Without adequate funding, essential research will be delayed or lost, setting back the fight to find effective treatments for PWS. Together, we can ensure that Congress takes action to reverse this harmful policy.
Act Now: Contact your representatives and urge them to protect NIH research funding today!
Need help getting started? PWSA | USA has drafted a letter you can customize and send to your representative!
