Not to be too alarmist, but last Friday left us seriously concerned about the future of the limb loss community.
First the Amputee Coalition announced that it had reluctantly laid off four staff members, furloughed two others, and reduced hours and salaries for most other employees. Those moves became necessary after the AC temporarily lost access to a major federal grant in late January, after the Trump administration froze the disbursement of trillions of dollars in government funds.
Although the freeze was quickly reversed under court order, AC leaders concluded they could no longer be certain of receiving every dollar of the five-year grant that underwrites the National Limb Loss Resource Center, one of the AC’s largest programs.
“We literally had a [funds] transfer in progress that was halted,” AC president Cass Isidro told Amplitude. “Two days later we were able to access those funds, but that was a wakeup call. It gave us reason to sit back and say: If this can happen, we need to be good stewards of the core services we’re providing so we can weather this environment. We believe and hope the monies that Congress has appropriated [to support the limb-loss community] will move forward on time, but it’s our job to make sure that the phones don’t stop getting answered.”
Shortly after the AC’s announcement, some other unsettling news surfaced: The National Institutes of Health implemented sweeping cuts to its biomedical grant programs, effective immediately. The NIH spends hundreds of millions of dollars annually to support research for new prosthetic technologies, limb-care treatments, and other innovations that directly serve amputees. Even greater NIH sums—tens of billions per year—support research in amputee-related fields such as pain management, physical rehabiliation, diabetes, cancer, and cardiovascular disease. All of that research was abruptly thrown into doubt, as scientists scrambled to examine their budgets.
The NIH cuts were also halted by a judge shortly after they were announced. But the news has left limb-care researchers in a position similar to that of the AC: unsure about whether, and to what extent, their work can proceed.
“This will obviously have an impact on O&P,” says Fanny Schultea, the executive director of the Orthotics and Prosthetics Foundation for Education and Research. “It’s probably going to halt some projects or slow down projects. Maybe new projects won’t be initiated at the same pace. There’s just going to be an upheaval. We don’t know exactly what’s going to happen, but we do know that it’s going to impact O&P research.”
To recap: the federal funding freeze (announced January 27) destabilized the AC’s funding situation. The NIH cuts (announced February 7) threaten university and industry research projects. Rather than speculate about where this is all headed, we decided to stick to the handful of facts we know for sure, and do our best to clarify those.
How much of the Amputee Coalition’s funding is in doubt?
The funding freeze primarily affects the five-year $3.3 million grant the AC receives from the Administration for Community Living (ACL) to operate the National Limb Loss Resource Center. Funds the AC raises through foundation grants, sponsorships, industry support, and other channels are not affected.
What services is the AC cutting?
For now, nothing’s being cut. “We’re not totally sunsetting or pausing anything yet,” Isidro says. “Most people aren’t even going to notice that anything has changed. It’s not going to affect most people directly.”
Not as long as the funding freeze remains tied up in the courts, anyway. But if the freeze eventually goes back into effect—and/or if the government introduces a different cost-cutting policy that affects the AC—the organization may be forced to reduce or discontinue some of its services. “We are preparing ourselves to operate in a volatile, uncertain environment,” Isidro says. “These are things that have not happened before, and there are no clear answers.”
That’s where the concept of “core services” comes into play: Those would be the last things to go in a funding crisis. “What we mean by ‘core services’ are the things we do that nobody else is doing across the entire nation,” says Isidro. “First and foremost are our information and referral services, where people can call us, fill out an online form, send us an email and get relevant information or referral related to limb loss and limb difference.” The next highest priorities are community-based programs such as peer visits, peer mentors, amputee support groups, and education programs.
To reiterate: So far the AC hasn’t reduced its services for amputees at all, according to Isidro. The organization is maintaining operations despite the reductions in staff. In the past, the AC has weathered funding interruptions by drawing on other resources, Isidro adds. “But we’re currently not in a financial situation to do that for a month or a number of months without significantly harming the organization.”
What types of limb-loss research might be in jeopardy?
Many of the most exciting biotech innovations you read about in Amplitude are reliant on NIH funding, and could be affected by the new budget rules. They include AMI surgery, the Utah Bionic Leg, Emily Graczyk’s neuroprosthetic arms (in the current issue), Hugh Herr’s Bionic Skins project, and investigations related to phantom limb pain, osseointegration, and targeted muscle reinnervation. The DARPA hand was developed in significant part with NIH dollars. The Limb Loss and Preservation Registry was built almost entirely on a series of NIH grants, although the LLPR is now independently funded.
Dozens of projects of this caliber are in the NIH’s current portfolio, and all will probably be impacted if the new NIH budgeting policy moves forward. “We don’t know exactly how it’s going to look,” says the O&P Foundation’s Schultea. “It’s going to impact research volume. It’s going to impact projects that are underway may not be able to be completed. There are going to be major changes. We just don’t know exactly what they are yet.”
How many dollars would researchers lose if the NIH cuts take effect?
NIH researchers aren’t facing the loss of all their funds, but they’re facing the loss of a critical chunk. These are funds to cover so-called indirect costs, which typically comprise anywhere from 30 to 60 percent of a given award. The NIH wants to cap funding for indirect costs at 15 percent, meaning many researchers would lose between a fourth and (almost) a half of their overall award.
We’re not delving into the details of direct vs indirect costs; here’s an explainer from Science. But we did conduct a bit of cocktail-napkin math to guesstimate how many dollars might be funneled out of limb-loss research—which is, we should remind you, not lavishly funded to begin with. In table form:
| Average annual NIH funding (FY 22-24) for research directly related to limb loss | $265,000,000 |
| Estimated dollars allocated to indirect costs | $100,000,000 |
| Estimated dollars available for indirect costs under new policy | $ 39,750,000 |
| Research dollars lost per year | $ 60,250,000 |
Those are very rough estimates, but they provide a realistic sense of scale. You can plug different numbers into this table and generate a larger or smaller bottom line, but it’s difficult to produce a scenario in which the new policy represents a win for anyone who relies on biomedical research for their health and well-being.
If you want to check our math, our estimates of NIH funding for limb loss come from the NIH Reporter.
One last point of clarification: the figures above only represent NIH research that’s focused squarely on limb loss. The amount of NIH funding at risk in limb-loss-adjacent fields such as diabetes, pain management, physical rehabilitation, cancer, and cardiovascular disease is vastly higher. Allocations for research in those fields are measured in the billions, not millions, so the reductions in funding levels—and corresponding reduction in progress—could be staggering if the NIH implements the new funding restriction in its current form.
What can anybody do to protect federal funding for the limb-loss community?
Ummmm . . . . . we’ll get back to you on that.
What you can do is try to reinforce non-federal sources of support. To start, Isidro suggests volunteering your time to the AC or an organization in your community, such as an amputee support group. “If you’ve ever thought about being a peer visitor, now’s the time to go through that training,” she says. “If you can get engaged, get engaged.” If you’re in a position to donate funds to the AC, she adds, don’t wait until December: “If you donate on the front end of the year, it gives us more leverage to extend our services than if you donate later on, when we’ve already maybe had to react to certain challenges.” And if you’re just not in a position to give time or money, at least give your attention and stay prepared. “There may be a time when we need folks to speak out on behalf of our services and programs,” Isidro says. “We’re not calling folks to action yet, but we are encouraging them to stay tuned. Follow our feeds and follow our newsletter, because additional support may be needed.”
Schultea suggests working with organizations such as the O&P Foundation, which doesn’t rely at all on federal funding. “Even the VA, which usually feels more stable, is cutting,” she says. “It highlights the need to be extremely savvy and to diversify support. We cannot rely anymore on the government funding we have relied on for the last 50 years. We have got to diversify, because this is something we can no longer take for granted. And we have to be grateful for the structures already in place that don’t rely on that source.”
