$40 Million Cut Threatens SCI Recovery Research

After Congress passed the funding bill for the 2025 federal budget, Matthew Rodreick’s voice was tinged with anger and fear as he expressed his concern about the future of spinal cord injury research funding.  

“They just cut 2025 funding levels for Congressionally Directed Medical Research Programs (CDMRP) from $1.5 billion down to $650 million, a loss of $850 million for nearly two dozen important medical research programs,” says Rodreick, whose organization advocates for and coordinates SCI research funding. 

The $850 million in cuts will fall on 23 different programs, including the Spinal Cord Injury Research Program, a 15-year-old program that accounts for one-third of all federal funding for SCI research. From 2009 to 2019 alone, SCIRP funded research projects that included more than 5,000 participants. 

In 2024, SCIRP received $40 million for research. After the cuts, SCIRP will get nothing in 2025. As SCIRP’s programmatic chair and a C6-7 quad herself, Jen French felt crushed by the news. The committee she sits on reviews applications and has a lead role in determining which research projects will be recommended for funding. “As of today, there is no more SCIRP,” she laments. “If we don’t get funding back soon, it could all vanish.”  

The bill also zeroed out funding for research that could lead to prevention and treatment of multiple sclerosis, Parkinson’s, lupus, kidney cancer, glioblastoma, autism, arthritis, substance abuse, orthotics and prosthetics, vision, and most shockingly, traumatic brain injury and psychological health research — clear favorites of Congress right up through 2024, with so many Iraq-Afghanistan War vets suffering from the effects of improvised explosive devices. All are critically important programs to many with neuromuscular trauma/disease. 

Jason Stoffer, U2FP’s cure advocacy manager, points out that $40 million is only 0.005% of the Department of Defense’s annual budget, but goes a long way toward funding some of the most critical SCI research.  

“It took us 10 years to accumulate $40 million [for U2FP] among four state programs, while it took an overnight stroke of a pen to wipe out $40 million from the federal budget,” says Stoffer, a paraplegic since 2017. “If SCIRP is wiped out completely, it will take down one-third of all federal funding for all SCI research. It was a huge blow. Setbacks are real, far-reaching, and it impacts clinical studies the most.”  

Stoffer explained that the more clinical studies progress toward their goals, the more expensive studies become. “If you interrupt the work, it sets research back years — you have to fire researchers, meaning no more money if you want to get it started again, plus it takes rehiring and reorganizing,” he says. 

The timing of the cut magnifies its impact. “We are just now getting tons of interest in funding from private investors who want to support our research,” says French. But one critical element is lacking: To get a device to market, you have to do economic studies.  

“If you’re going for reimbursement on a novel therapy,” she says, “you have to have a code and must make a case for payment.” In other words, for insurance to cover reimbursement and expand these devices so everyday SCI survivors can use them without being enrolled in clinical studies, you have to have proof that it will work out financially. 

A Little Improvement Goes a Long Way 

French founded Neurotech Network as a nonprofit in 2005 to help accelerate this process and help those living with neurological conditions learn about available and developing neurotechnology therapies, devices and treatments. While epidural stimulation is only one of many technologies and treatments that stand to be impacted by cuts, French points to epistim as an excellent example of why preserving funding is so critical.  

Neurotech Network’s website hosts a video of three clinical trial users — Sandra Mulder, a T4-5 para, and Richdeep Gill and Jon Schleuter, both quads with C6-7 cervical injuries — who used epistim systems in clinical trials from 2018-2020. Mulder and Gill had epistimulators implanted on their spines, while Schleuter used a transcutaneous spinal cord system. All say they gained more energy, autonomic improvement and some motor improvement.  

These are exactly the kinds of returns people living with SCI/D have been clamoring for, but making them available to a wider population — outside of clinical trials — has taken a great deal of time and funding. 

“The beauty of epistim is that it can potentially improve our everyday lives by restoring hand function, bowel, bladder, and improving circulation, as well as temperature regulation and possibly control of autonomic dysreflexia,” says French. 

“It has taken us this long for clinical studies to prove safety and efficacy of newer therapies like epidural stimulation implants or transcutaneous spinal epistimulation,” says French. “Now we are on the brink of breaking open the market.” 

The Problem of Potential Device Abandonment  

As devastating as the loss of funding could be for future research and technology, cutting off support could also have a huge impact on individuals who are currently participating in clinical trials and those who already have devices obtained via trials. Kim Anderson-Erisman, a C5 quad, is currently using a two-stage functional electrical stimulation (FES) implantable device that has made transferring easier and safer. 

Anderson-Erisman, a professor of physical medicine and rehabilitation at Case Western Reserve University Medical School and director of Northeast Ohio’s Regional SCI Model System, says it helps both her and her caregiver. But only recently has she realized that if a glitch occurs, disabling her device, or if funding stops altogether, she has no idea who will service the device. It is about 5 years old, and she is still included in a long-term trial. Will the trial have to be scrapped, leaving her with no service? No one has any answers right now. 

French, who has an earlier version of Anderson-Erisman’s system, is in a similar fix. The long-term research study she is in, now 25 years old, will likely end later this year. Once that funding is over with, if no further funding exists, she must decide on what to do with her implants.  

Using the device daily has been her routine for the past quarter-century and she credits it with improving her overall health. “My bone density is normal, and my trunk stability is good,” she says. “I feel it every day because I use it every day.” As part of the study, her implants are serviced twice a year. She is worried that will end. She says there are about 40 others in the study who will have to grapple with the same question: Why keep the system in their bodies when it is no longer supported?  

And what does all this mean for 300,000-plus SCI survivors in the U.S. who have yet to be included in a clinical trial or might benefit from one that is shuttered because of the cuts?  

French worries that if funding is not restored soon, it will be very difficult for Congress to restart SCIRP. “I’m worried this could mean the end of Congressionally directed spinal cord injury research,” she says.