The National Institutes of Health (NIH) is one of the largest funders of epilepsy research in the United States. Their $157.9 million-a-year investment in epilepsy research represents around 82% of the epilepsy research that is not coming from industry sources (Figure 1). Funding at NIH enjoys strong bipartisan Congressional support because it ensures the United States remains the leader in biomedical innovation; the funding benefits research taking place across the country, and it helps spur our economic growth.
As the new administration begins to discuss the federal budget and potential cuts to funding at NIH and other programs, we must raise awareness with all stakeholders about the critical role federal investments in biomedical research play for epilepsy research priorities and the overall research enterprise. The research supported by NIH is an essential component that can be complemented, but not matched or replaced, by the nonprofit community's investments in research.
The Priorities for Epilepsy Research at NIH
In 2013, the NIH hosted a workshop titled, "Curing the Epilepsies 2013: Pathways Forward," to develop benchmarks for epilepsy research. This conference re-evaluated the priorities shared across the community to lead us to clinically meaningful advances in treating and understanding epilepsy. These updated benchmarks identified four key areas that NIH would invest in:
- Understand the causes of the epilepsies and epilepsy-related neurologic, psychiatric, and somatic conditions.
- Prevent epilepsy and its progression.
- Improve treatment options for controlling seizures and epilepsy-related conditions without side effects.
- Limit or prevent adverse consequences of seizures and their treatment across the lifespan.
These four priorities highlight a change in direction that has been occurring over the past five years. We are shifting away from just stopping the outward seizures to understanding and treating the underlying cause of epilepsy. If successful, this would provide a holistic approach to care and open new potential avenues for treatment. In 2019, NIH will re-evaluate these benchmarks and refine the priorities depending on the progress made.
Is NIH epilepsy research spending lining up with the benchmarks it created?
According to the Interagency Collaboration for Research in Epilepsy, ICARE, which tracks funding from nonprofits and government agencies, the answer is yes. NIH has been sticking close to the priorities that it has laid out (Figure 2). Below is a breakdown of the spending.
Around 20% of the NIH epilepsy budget goes to understanding the causes of the epilepsies, with most of that allocated to identifying new genes and pathways associated with epilepsy.
They are also studying the relationships between the epilepsies and several co-occurring conditions (e.g., neurodevelopmental disorders). This investment has paid off, with 20 new genes for epilepsy discovered in 2016 alone!
Around 30% of the NIH epilepsy budget goes towards preventing epilepsy and its progression. Most of this money has been allocated to either understanding how epilepsy can result from an insult to the brain (e.g., a traumatic brain injury, stroke, tumor, etc.) or to understanding how genetic causes contribute to the development of epilepsy.
In 2017, NIH established the EPIBios4Rx Center Without Walls initiative. This is a bioinformatics study that looks at epilepsy in people with post traumatic brain injuries across multiple institutions worldwide.
Around 32% of the NIH epilepsy budget goes to improve treatment options for epilepsy. Over half of these research dollars go towards identifying new ways to detect, predict, prevent, or terminate seizures.
The NIH is now supporting the first prevention trial for epilepsy entitled, "Preventing Epilepsy Using Viagbatrin in INfants with Tuberous Sclerosis Complex (PREVeNT)." This study will test whether pre-treatment with vigabatrin for at-risk infants based on their genetic background reduces seizure-risk in Tuberous Sclerosis Complex.
Improving Quality of Life
Around 15% of the NIH epilepsy budget goes towards limiting or preventing adverse consequences associated with epilepsy. Most of these research dollars go towards improving overall quality of life and understanding sudden unexpected death in epilepsy (SUDEP).
The NIH has developed a bio-repository that allows for storing and sharing genetic, tissue, and clinical data samples collected from thousands of people with epilepsy at 10 sites across the country. The goal of this program is to identify who is at risk for SUDEP with the primary goal of preventing SUDEP from occurring.
Around 4.5% of the NIH epilepsy budget goes towards the “other” category that does not fit in the four benchmarked areas. This category includes funding for research infrastructure, such as developing a cloud based tool for storing large and secure datasets, for institutional training grants, or to fund training fellowships in epilepsy at institutions that have programs focused in epilepsy. The training and infrastructure supports and encourages the developing workforce entering the research arena.
The aforementioned are the critical ways NIH supports investigator-initiated research, multi-institutional center without walls initiatives, and observational clinical trials that align with their benchmarks for epilepsy. A budget cut to NIH could mean an across the board budget cut to all the epilepsy programs across all priority areas.
Decision makers in Washington, D.C., and across the country need to hear from all stakeholders – including people living with epilepsy and their families, clinicians, researchers – about the value of federal biomedical research investment for all Americans.
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