New US Government Policies Hit the Migraine Field

Members of the migraine community express uncertainty about how the new directives will play out.

It’s been a tough time for Mandee Schaub, a migraine researcher and PhD candidate at the University of Texas at Dallas, US. Last year, Schaub submitted a grant proposal to the National Institutes of Health (NIH) to continue her research on the mechanisms of migraine. The grant would have increased her stipend and helped her land a postdoctoral position after graduation.

But Schaub’s grant review was abruptly canceled on January 21, after the new Trump administration issued a temporary external communications freeze by the US Department of Health and Human Services (HHS), which is NIH’s parent organization. She has no idea when – or even if – her grant’s advisory council meeting will convene again.

“It’s just this constant ‘What’s going on?’ feeling,” Schaub said. “As a scientist, it’s frightening for me: Is my job on the line? Is my future?”

Schaub isn’t alone in feeling this way. Like many in the broader science community, migraine researchers in the US are watching recent policy changes with concern. Unlike climate science and other areas, the migraine field is not being specifically targeted by the changes. But it is nonetheless experiencing uncertainty and unease about how the situation may ultimately unfold, and in particular, what the long-term outcomes may be for the careers of young investigators, funding, migraine care, and efforts for a more inclusive field. Despite the lack of clarity, some are highlighting potential opportunities for the migraine field amidst the policy changes.

Migraine Science Collaborative recently spoke with a sampling of those from the migraine research, patient, and advocacy communities to hear what they’re thinking about the new policies and what they’ll be watching for in the weeks and months ahead.

Potentially exacerbating an existing challenge
Approximately 12% to 15% of American adults live with migraine. Migraine is the second leading cause of disability worldwide, costing the US economy about $78 billion a year in healthcare costs and lost productivity.

But despite the extent of the problem, migraine research remains a small and underfunded field. Only about 10 labs in the country focus on migraine, according to Greg Dussor, a migraine researcher at the University of Texas at Dallas (Schaub is a trainee in his lab).

Most migraine research is funded by NIH. But in 2023, the agency invested just $59 million toward headache disorder research (out of a total budget of nearly $48 billon that year), with only $62 million estimated for this year. For comparison’s sake, cystic fibrosis, a condition that impacts about 40,000 people in the US, was awarded $84 million in 2023.

Limited funding has stunted the field’s ability to attract young investigators to migraine research, and any additional cuts would make that predicament worse, which makes the field particularly vulnerable, said Julienne Verdi, executive director of the Alliance for Headache Disorders Advocacy and The Headache Alliance.

“We need more funding in this area, certainly not less,” she added.

On February 7, NIH announced that it would cap the amount of grant money that could be allocated to indirect costs to 15%. Historically, universities negotiated with the federal government to decide how much grant money could go to indirect costs, with some universities using more than 50% of the grant award towards those costs. Indirect costs cover everything from building management and lab equipment to research assistant positions. The new policy has since been challenged in several lawsuits, including one filed by 22 states and another by the Association of American Universities and other plaintiffs. Cutting funding for indirect costs could leave universities scrambling to fill the gap and ultimately hinder the field from making the fundamental discoveries that lead to innovative therapies.

It’s true that new medications, particularly those targeting the CGRP system, have transformed migraine care in recent years. But despite these advances, some people don’t respond to currently available treatments. One of those individuals is Beth, who lives with chronic migraine; she requested that MSC not use her last name to protect her privacy.

“I’m really kind of reliant on new research and treatments,” she said. “It’s just concerning to know that there are already limited funds available for migraine research” and that the funding situation could become even worse.

This financial burden will probably fall the heaviest on early-career researchers. Already, graduate schools are accepting fewer PhD candidates or even rescinding offers. New faculty might receive smaller startup packages. Labs would have fewer opportunities to hire postdocs and graduate students. The funding challenges might also discourage migraine researchers from applying for grant money in the first place, said Verdi.

“This is what makes me nervous,” said Dussor. With fewer funds and opportunities, “we’re really not sending a good message to younger researchers to stick with this and continue on and end up being an established person in the field.”

Possible broader impacts
Research isn’t the only area that could be affected by the recent policy decisions.

Verdi is watching for potential impacts on the Headache Centers of Excellence, established by the US Veterans Health Administration. One of the major victories for the Alliance for Headache Disorders Advocacy and The Headache Alliance was getting Congress to fund 27 centers dedicated to treating headaches in veterans. Veterans are particularly prone to developing headache conditions because of head trauma and complications from PTSD.

However, a wave of dismissals across several federal agencies has begun, including the Department of Veterans Affairs (VA). The decision came on the heels of a return-to-office notice sent to all federal employees. These policies might put extra strain on staff members at the headache centers, some of which do not have the physical space to house all their employees, said Verdi.

Making federal employment less attractive “could further shrink the workforce that is providing this critical headache care to the VA community,” she said.

Beth is also concerned about the effects of the new policies on care, including telehealth. Medicare now covers telehealth under a temporary COVID-19 policy that is due to expire at the end of March. That allows Beth to receive treatment from a headache specialist who lives two hours away. The measure was introduced in 2020 during the first Trump term and has since received periodic extensions, but what the future holds for it remains unclear.

She is also worried about her broader access to healthcare through Medicare and her Social Security Disability benefits. On February 19, President Trump endorsed a budget resolution proposed by the House Budget Committee that would likely result in large cuts to Medicaid; the budget resolution passed the House on February 25. During a conversation with members of the press on February 26, the president reiterated his campaign promise that “we’re not going to touch” Medicare, Social Security, or Medicaid.

But with the budget unlikely to be paid for without cuts to Medicaid programs, Beth wonders if Social Security and Medicare are next. “Nothing feels safe,” she said.

Yet another wider impact of the new policies concerns the administration’s stance on diversity, equity, and inclusion (DEI) programs and positions in the federal government. One casualty is NIH diversity grants and fellowships used to support underrepresented students in the sciences. The administration’s new DEI policies have since been challenged through lawsuits brought by DEI officers, restaurant workers, and others.

NIH and the National Science Foundation (NSF) have been reviewing research grants for words that violate the administration’s orders, including “people of color” and “women,” according to reporting from Nature and other outlets. This is of concern in the case of migraine, not only because of a lack of underrepresented groups in research but also because migraine is a condition where gender, race, and socioeconomic disparities already affect care. For instance, migraine impacts roughly three times more adult women than men, while African American and Hispanic patients are 25% to 50% less likely to receive migraine diagnoses, respectively, compared to White patients.

Reasons for optimism
It is still unclear what the long-term impact of many of these proposed policies will be for the migraine field. Most of the executive orders targeting science have been challenged, temporarily halted, or blocked by lawsuits (a February 20 news article in Nature reported that NIH research grants were still frozen despite lawsuits, while a week later NPR reported a partial lift of the funding freeze, at least for the first phase of grant review). Meanwhile, migraine researchers are still trying to understand the underlying goals behind some of the new policies.

In its announcement, NIH stated that the move to limit overhead spending was intended to ensure that more money goes toward science rather than ancillary expenses. There is a world where that means that NIH can afford to give out a higher number of grants rather than help fund overhead, said Dussor, though he acknowledged, “We’re going to have to see how it goes.”

Migraine also has the benefit of being a non-controversial chronic illness. Robert F. Kennedy Jr., the newly confirmed head of the Department of Health and Human Services, expressed an interest in tackling chronic illness throughout his confirmation hearing. “Migraine certainly fits with that category,” said Dussor.

Indeed, Verdi and the Alliance for Headache Disorders Advocacy and the Headache Alliance are planning to advocate for migraine to be added to a women’s health bill potentially in the works by conservative lawmakers in Congress. Unlike reproductive health, “this is a non-controversial type of women’s health issue,” she said.

Verdi also plans on highlighting migraine care and research as a potential cost-saving measure for the government.

“An investment in migraine research and care is the most cost-effective way to improve workforce productivity and reduce long-term healthcare costs,” she said.

Much of the current uncertainty for science is a lack of clear messaging from the administration, according to Dussor. Better communication about the goal of each policy could help researchers understand what grant money is on the line, and how to navigate new realities at NIH and other federal agencies.

Some researchers are still waiting to know whether they will receive funding. Schaub’s grant review is still unscheduled. For now, she plans to resubmit her grant proposal in April, in part to improve her application, and in part because she is unsure what will happen with proposals currently hanging in limbo.

“Hopefully everything will be okay,” she said. “But it is definitely a season of uncertainty and fear.”

Freda Kreier is a freelance science journalist based in Washington, DC.

Image credit: vacclav/123RF Stock Photo.