By Brendan Scanland
WASHINGTON, D.C. — Amid downsizing efforts and proposed federal budget cuts, advocates in the ALS community are warning that critical medical research could be in jeopardy.
It’s a disease with no cure, a ticking clock — and now, a potential funding crisis.
“Any cuts to research right now could take us back decades,” said Melanie Lendnal, senior vice president of policy and advocacy at the ALS Association.
Commonly known as Lou Gehrig’s disease, ALS is a progressive motor neuron disease that affects nerve cells in the brain and spine. From diagnosis to death, the average lifespan is just two to five years.
“It slowly takes away a person’s ability to walk, talk, eat — and eventually breathe,” said Lendnal. “We are so close to making ALS livable and even curing it.”
But she warns that progress is at risk. The Trump administration has recently targeted hundreds of grants for National Institutes of Health (NIH) institutes and centers, some focused on neurological diseases.
Lendnal says terminated grants and large proposed spending cuts for the NIH and other federal agencies could threaten recent momentum in the fight against one of the most devastating neurodegenerative diseases.
“The most important agency is the NIH, followed, of course, by the CDC, the FDA and DOD. If you take funding away from just one of those agencies, the entire research structure for ALS and other neurodegenerative diseases can completely fall apart,” she said.
During a recent Health and Human Services (HHS) budget hearing on May 14, lawmakers questioned President Trump’s head of the Health and Human Services Department about the proposed cuts.
“The NIH is the largest public funder of biomedical research in the world, giving us an edge over countries like China, with whom we are obviously a geopolitical rival,” said Sen. Bill Cassidy (R-La.), during the hearing. “Knowing that the NIH budget is getting squeezed, how will the NIH successfully do more with less?” Cassidy asked Secretary Robert F. Kennedy Jr.
“The cuts we have made to date are administrative cuts. As far as I know, we have not fired any working scientists,” said Secretary Kennedy, adding that the proposed cuts largely address administrative staffing and diversity, equity and inclusion (DEI) initiatives. “Our policy was to make sure none of them were lost and that our research continues.”
Although it may be too soon to tell exactly what federal downsizing efforts mean for the fight against ALS, some worry that general uncertainty is already impacting funding for future research.
“People are in a ‘wait and see’ period right now because they are so concerned and don’t know what the future holds,” said Lendnal.
Lendnal warns if the government pulls back efforts, other research institutions and nonprofits may follow. She says it’s a dangerous trend that could impact anyone — regardless of political affiliation.
“It’s not just the federal government that funds ALS research. It is truly a partnership between the federal government, industry, educational institutions and nonprofits like the ALS Association, who are funding this research collaboratively across the globe. If the federal government starts pulling back, there is potential that all of those others might pull back as well,” said Lendnal. “This disease doesn’t care if people are Republicans or Democrats. This impacts everyone.”