When We Cut Research, We Cut Hope: The Human Cost of Medical Funding Cuts

There is a moment that every neurosurgeon fears: sitting across from a patient or parent whose child has just been diagnosed with hydrocephalus, knowing that despite our best efforts, we are still working with tools that have not meaningfully changed in decades. This serious condition requires brain surgery to treat and in many cases, requires a lifelong commitment to care. For patients and families, it is a constant reminder that the fight for innovation and progress is far from over.

Hydrocephalus is a life-threatening neurological condition that affects more than one million Americans and can occur at any time across the lifespan, from newborns to elderly adults. It occurs when excess cerebrospinal fluid accumulates in the brain, increasing pressure that can damage delicate brain tissue. In infants, it may be detected by a rapidly enlarging head resulting from a brain bleed or infection. In older children and adults, symptoms may include severe headaches, nausea, vision changes, cognitive decline, and in some cases, death. Untreated, hydrocephalus can lead to devastating and permanent consequences, including developmental delays, intellectual disabilities, memory loss, and impaired motor function. The condition triggers chronic inflammation, damages blood vessels in the brain, and disrupts the formation of new brain cells, which is especially concerning in children whose brains are still developing. [5][6]

Despite the seriousness and chronic nature of hydrocephalus, the primary treatment remains largely unchanged: invasive brain surgery to implant a shunt system developed decades ago. These devices, though lifesaving, are prone to malfunction. Up to 40 percent fail within the first year, and many patients, especially children, undergo numerous surgeries and face a lifetime of medical uncertainty. [1][2] Managing hydrocephalus is not a one-time event. It requires lifelong care and vigilance. The inpatient healthcare burden in the US alone accounts for over $2.06 billion annually, with significant costs attributable to shunt- related admissions. [15]

Research priorities have been established to address the critical needs in hydrocephalus treatment and management. These include the development of noninvasive and one-time therapies, reduction of the burden of current treatments, improvement of screening and diagnosis, and enhancement of quality of life and access to care. Innovative treatment strategies, such as pharmacology, gene therapy, and nano- based technologies, are currently in various stages of clinical trials and hold promise for the future. In spite of the complexity and long-term burden of this condition, research funding to support innovation remains woefully inadequate. A 10-year analysis of NIH funding for hydrocephalus research revealed persistent underfunding relative to the condition’s prevalence and impact. This limits our ability to develop more effective treatments. [11]

As a pediatric neurosurgeon and member of the Hydrocephalus Association’s Medical Advisory Board, I have walked beside families as they navigate this journey. I have seen the courage it takes. I have also seen how hope quietly erodes when we stop investing in discovery.

This is not a theoretical concern. Studies have shown clear correlations between research funding and medical progress. A study published in JAMA Pediatrics found a strong link between National Institutes of Health funding and advancements in addressing pediatric disease burden. Yet, over the past decade, the purchasing power of NIH’s pediatric research portfolio has steadily declined. Even modest funding instability threatens the development of new treatments and drives talented investigators out of the field entirely. [3][4] This decline in research funding at academic medical centers has shifted physician priorities toward increased clinical duties at the expense of vital research activities, further hampering our ability to develop innovative treatments. [4]

Recent budget decisions have only intensified this concern. The Congressionally Directed Medical Research Program, which supports high- impact research on conditions including hydrocephalus, has been cut by 57% for Fiscal Year 2025. Within that, the Peer Reviewed Medical Research Program, through which hydrocephalus research is funded, has been reduced from $370 million to $150 million. That means more scientists are competing for fewer dollars. By the way, these dollars support studies directly benefiting active-duty service members, veterans, and families across the United States.

The NIH is the largest public funder of biomedical research globally. It now faces the dual threat of budget cuts and a proposed across- the- board cap of 15% on indirect costs, an approach that could devastate smaller, discovery driven laboratories. Hydrocephalus research has received $100 million in NIH investment to date, but further progress depends on reliable and robust support. These cuts are occurring in a broader context where the United States’ global leadership in biomedical research is already declining compared to other developed countries, with a troubling shift toward private funding sources that may prioritize marketable treatments over fundamental scientific discovery. [6]

Equally concerning is the fate of the Agency for Healthcare Research and Quality, the only federal agency focused specifically on health care quality, safety, access, and cost. With a $369 million budget, representing just 0.02% of national health care spending, AHRQ has had an outsized impact, funding practical, high- value studies that have led to reductions in hospital acquired infections, improved safety protocols, and better access to preventive care. It has improved your health and the care you receive. Yet, it is now at risk of losing 80% to 90% of its workforce as part of broader efforts to restructure and downsize federal health agencies. If the government stops funding this kind of work, it simply will not get done. Your health will suffer.

These cuts are not just policy decisions. They are moral ones. The downstream effects are immense. The implications of these cuts extend far beyond hydrocephalus. Research lost in one area will delay discoveries across many others. For instance, a scientist studying hydrocephalus may uncover insights relevant to Alzheimer’s disease, stroke recovery, or cancer. When a single research line is cut, the lost potential can never fully be measured. Each research dollar not invested is not only a missed opportunity for one disease, but a missed chance for progress across multiple fronts.

The inconsistencies in research funding between different diseases further illustrate the imbalances in our current system. A comparison between sickle cell disease and cystic fibrosis found significant funding differences despite similar disease prevalence, with direct implications for research productivity and drug development. [5] These disparities often reflect societal biases rather than scientific priorities or disease burden, leaving many patient populations underserved.

During my over 30+ years in healthcare, I have learned that leadership in medicine is not only about delivering care today. It is about building the future of care. That means making research and innovation a national priority, not something left to chance or squeezed into shrinking margins.

Budgets are more than financial documents. They are reflections of our core American values. If we want to be a country that leads in innovation, improves outcomes, and ensures that children and families receive the care they deserve, we must invest accordingly.

A Path Forward: Building Hope Through Innovation

When we fund research, we choose possibility. We choose to say that every life matters and that every potential breakthrough is worth pursuing. However, we must also acknowledge that the challenges we face demand new approaches to how research is funded and conducted.

Recent studies involving researchers, funders, patients, and the public reveal a desire for more inclusive and transparent funding processes that prioritize patient- centered outcomes. [7] As we advocate for increased federal funding, we must also explore innovative funding mechanisms such as public and private partnerships and collaborative research networks that can help bridge funding gaps and foster innovation. [8][9]

For conditions like hydrocephalus, where recent progress has identified promising new therapeutic targets and diagnostic approaches, consistent funding is essential to translate these discoveries into improved patient care. [2][12][13] Establishing ranked research priorities, as recently accomplished through collaborative efforts between medical professionals and patient advocates, provides a strategic framework for maximizing the impact of limited research dollars. [3][8]

So, let us be intentional. Let us be generous. And, most of all, let us not confuse the status quo with success. The future of care depends on what we are willing to build today. Our commitment to medical research is not merely a budgetary consideration. It reflects our society’s dedication to alleviating suffering, advancing knowledge, and honoring the trust patients place in us as healthcare providers.

The path forward requires not only advocacy for increased funding, but also innovation in how we approach research collaboration, prioritization, and implementation. By engaging all stakeholders, from government agencies and academic institutions to industry partners and patient advocacy groups, we can develop a more resilient research ecosystem that withstands political and economic fluctuations.

For the millions of Americans living with conditions like hydrocephalus, and the countless others who will face similar diagnoses in the future, our investment in medical research represents more than scientific progress. It represents hope. Let us choose hope, not only for today’s patients but for generations to come.

References

1. McAllister JP, Williams MA, Walker ML, et al. An Update on Research Priorities in Hydrocephalus: Overview of the Third National Institutes of Health-Sponsored Symposium “Opportunities for Hydrocephalus Research: Pathways to Better Outcomes”. Journal of Neurosurgery 2015;123(6):1427-38. doi:10.3171/2014.12.JNS132352.
2. Williams MA, McAllister JP, Walker ML, et al. Priorities for Hydrocephalus Research: Report From a National Institutes of Health-Sponsored Workshop. Journal of Neurosurgery. 2007;107(5 Suppl):345-57. doi:10.3171/PED-07/11/345.
3. Jakopin NE, Myong E, Bogucki T, et al. Establishing Ranked Priorities for Future Hydrocephalus Research. Journal of Neurosurgery. 2023;139(2):492-501. doi:10.3171/2022.10.JNS22753.
4. Meador KJ. Decline of Clinical Research in Academic Medical Centers. Neurology. 2015;85(13):1171-6. doi:10.1212/WNL.0000000000001818.
5. Farooq F, Mogayzel PJ, Lanzkron S, Haywood C, Strouse JJ. Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated With Research Productivity. JAMA Network Open. 2020;3(3). doi:10.1001/jamanetworkopen.2020.1737.
6. Moses H, Matheson DH, Cairns-Smith S, et al. The Anatomy of Medical Research: US and International Comparisons. JAMA. 2015;313(2):174-89. doi:10.1001/jama.2014.15939.
7. Cristall N, Drozdowska BA, Fladt J, et al. Priorities and Expectations of Researchers, Funders, Patients and the Public Regarding the Funding of Medical Research: Results From the PERSPECT Qualitative Study. BMJ Open. 2024;14(11) doi:10.1136/bmjopen-2024-084655.
8. Heinig SJ, Dev A, Bonham AC. The U.S. Public’s Investment in Medical Research: An Evolving Social Contract. The American Journal of the Medical Sciences. 2016;351(1):69-76. doi:10.1016/j.amjms.2015.10.016.
9. Wu JC, Arnett DK, Benjamin IJ, et al. Principles for the Future of Biomedical Research in the United States and Optimizing the National Institutes of Health: A Presidential Advisory From the American Heart Association. Circulation. 2025. doi:10.1161/CIR.0000000000001319.
10. Whitehead WE, Weiner HL. Infantile and Childhood Hydrocephalus. The New England Journal of Medicine. 2022;387(22):2067-2073. doi:10.1056/NEJMra2116504.
11. Gross P, Reed GT, Engelmann R, Kestle JR. Hydrocephalus Research Funding From the National Institutes of Health: A 10-Year Perspective. Journal of Neurosurgery: Pediatrics. 2014;13(2):145-50. doi:10.3171/2013.11.PEDS13197.
12. Anwar F, Zhang K, Sun C, et al. Hydrocephalus: An Update on Latest Progress in Pathophysiological and Therapeutic Research. Biomedicine & Pharmacotherapy. 2024;181:117702. doi:10.1016/j.biopha.2024.117702.
13. Liu X, Zhi H, Czosnyka M, et al. Advancing Hydrocephalus Management: Pathogenesis Insights, Therapeutic Innovations, and Emerging Challenges. Aging and Disease. 2025;14.2024.1434. doi:10.14336/AD.2024.1434.
14. Williams MA, van der Willigen T, White PH, et al. Improving Health Care Transition and Longitudinal Care for Adolescents and Young Adults With Hydrocephalus: Report From the Hydrocephalus Association Transition Summit. Journal of Neurosurgery. 2019;131(4):1037-1045. doi:10.3171/2018.6.JNS188.
15. Koschnitzky JE, Yap E, Zhang Y, et al. Inpatient Healthcare Burden and Variables Influencing Hydrocephalus Related Admissions Across the Lifespan. Journal of Neurosurgery. 2023;139(2):502-511. doi:10.3171/2022.10.JNS22330.