https://www.pbs.org/newshour/health/how-possible-nih-cuts-could-threaten-future-treatment-for-neurological-diseases
For the past 20 years, Janet Edmunson has run support groups for patients with rare neurological diseases that have no known treatment or cure. What they want to know, Edmunson said, is “‘When are they going to heal me?’”

Medical breakthroughs that might offer hope to these patients and their families are often the purview of academic researchers working at universities. But a directive in January from the National Institutes of Health (NIH) under the Trump administration aimed to reduce funding for many of the essential costs that make these studies possible. Even though a judge has halted the policy, scientists and advocates say the threat to critical research remains.

Edmunson runs the support group for CurePSP, a nonprofit advocacy organization dedicated to patients with progressive supranuclear palsy. PSP, a terminal neurodegenerative disease also known as an atypical Parkinsonism, affects about 30,000 Americans. It robs them of their ability to speak, read, eat and eventually swallow within five to seven years of diagnosis.

The disease is similar in some ways to amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, which affects about the same number of people.

In September, the University of California at San Francisco (UCSF) announced a first-of-its-kind clinical drug trial to treat PSP. However, the trial’s future is uncertain following the directive, which capped indirect costs for NIH research grants at 15 percent.

“It is accordingly vital to ensure that as many funds as possible go towards direct scientific research costs rather than administrative overhead,” according to the NIH policy statement.

The direct costs of a clinical trial might go toward salary for researchers, patient care and the cost of supplies – expenses that are specific to a project and can be singled out on a grant application.