Epilepsy affects 1 in 26 Americans. As such, why is epilepsy research so underfunded?
Less than half of a percent
While breakthrough research is proving promising for the 1 in 3 people with epilepsy who don’t benefit from standard anti-seizure drugs, much more is needed. Epilepsy receives fewer federal research dollars per patient than each of those conditions. Since 2008, funding by the National Institutes of Health (NIH) for epilepsy has increased by only 5 percent, which pales in comparison to other neurological diseases. While the NIH spends more than $30 billion on medical research every year, less than half of a percent goes to epilepsy. This, even as epilepsy is the second leading cause of death from a neurological condition.
Epilepsy affects all ages, from babies to women of childbearing age to the elderly. Research has helped us determine quite a bit about epilepsy, but there is still so much more to learn about medication side effects, safe treatment during pregnancy, psychological effects of the condition, the various causes of epilepsy, types of seizures and prevention.
Encouragingly, 18 anti-seizure medications have been approved by the Food and Drug Administration (FDA) since the early 1990s due to decades of NIH-funded research. Before that, there were only four non-sedative epilepsy medications available. New medications have proven effective in people with focal seizures, i.e. the most common type of seizure; Focal seizures begin in one area of the brain and may spread to other areas, causing tonic-clonic seizures — major seizures that used to be called grand mal seizures — if not controlled. Approximately 75 percent of adults and 50 percent of children with epilepsy have focal seizures and are candidates for the new medications.
Research yields better treatment
Several of the newest anti-seizure medications are advancements on previous formulas and demonstrate advances made possible by research. There are many new exciting treatment options. For example, eslicarbazepine is a new version of a drug previously taken several times a day that now only needs to be taken once daily; That’s important because side effects of anti-seizure medications typically peak within one hour of taking the drug and last for about 45 minutes, so taking a drug less frequently means reduction in the time a patient must handle side effects.
“Epilepsy is the second leading cause of death from a neurological condition.”
Other newer medications include brivaracetam, perampanel and lacosamide. Clobazam and rufinamide in particular are helpful in people with a difficult-to-treat type of epilepsy called Lennox-Gastaut syndrome. Lennox-Gastaut is associated with epileptic drop seizures, or seizures in which the person may fall down due to sudden loss of muscle control and a brief loss of consciousness; Having effective medication is important because this is one of the most debilitating and dangerous seizure types due to the risk of injury.
While these medications have improved the quality of life for many people with epilepsy, they are costly and sometimes insurance companies will not pay for them. This needs to change, as does the amount of research funding available to ensure the development of better therapies to reduce seizures with fewer side effects, improve upon minimally invasive treatments and surgery, learn more about the still-mysterious brain and ultimately find a cure for the disease. Epilepsy research has discovered so much thus far — imagine how much more could be done with greater funding for cutting-edge research.