ALS Advocacy Alert: Preserve Access to ALS Research
ALS United Mid-Atlantic joins the ALS community from across the United States to oppose cuts to research grants at the National Institutes of Health (NIH) and to strongly encourage Senators and Representatives to call for a reversal of the “Supplemental Guidance to the 2024 NIH Grants Policy Statement: Indirect Cost Rates.” This policy would cap the coverage of indirect costs to 15% of the grant, which would drastically harm ongoing research studies and stall progress toward new treatments for ALS.
The NIH is the number one global leader in basic scientific research. In 2023, research institutions in our region received over $2 billion from NIH, which ensures sustained research programs, good jobs, and investments that lead to new therapies for ALS and other devastating illnesses.
Medical research is a valuable investment. In addition to NIH funding making the United States the destination for the top research in the world, the treatments made possible through NIH studies improve quality of life and benefit people with diseases like ALS that otherwise require expensive long-term care.
Research institutions are good stewards of NIH funding. Most research institutions allocate 40-60% of total grant budgets towards indirect costs due to the significant expenses of maintaining world-class research environments. Cutting these costs to 15% would leave a critical funding gap that cannot be absorbed, which will then lead to cuts in staffing and in prospective studies. Historically, the NIH has recognized the necessity of these costs, which is shown in negotiated rates with universities based on actual expenditures.
The current funding process from the NIH ensures that universities and other institutions can sustain an infrastructure for long-lasting research into ALS, Alzheimer’s Disease, Parkinson’s Disease, and a long list of other diseases that require urgent attention. It is vital that these researchers be able to focus on the work of developing new therapies.
It is also important to note that research studies take time to be successful, from recruiting participants and ordering materials and following the scientific process. Researchers need a sustainable infrastructure to see these studies to their successful conclusions.
NIH investments are just that – investments that pay off in a better future for America and our region, with new therapies and cures for diseases like ALS that impact millions of people throughout our country.
ALS United Mid-Atlantic encourages you, the ALS community, to share your stories and push back on these cuts.
For further action, follow these links:
If you live in Pennsylvania, please fill out this Action Alert:
https://lifesciencespa.org/action-center/
Add your name to the letter from MDA:
https://www.votervoice.net/MDA/Campaigns/121428/Respond
Contact our Advocacy team to reach out to your member of Congress directly by emailing Tony@alsmidatlantic.org.