Even as stigma abates, epilepsy lags in research and funding
RESEARCHERS HAVE made progress in understanding Parkinson’s disease and Alzheimer’s, but less so in the case of another common neurological disease, epilepsy. This is a source of great anguish to the 3 million patients and their families coping with seizure disorders, which can range from temporary attacks to lifelong — and often life-ending — bouts with the disease. Advocates for epilepsy sufferers have removed some of the stigma from a disease once seen as demonic possession. Now, the challenge is to get the federal government and private groups to fund more research into its causes.
Epilepsy is the neglected stepchild among neurological diseases. On a per-patient basis, it gets about 20 percent of the research money that Parkinson’s receives and about 50 percent of the Alzheimer’s total. These figures include contributions from the government, pharmaceutical companies, and nonprofit foundations. Most of the existing research has gone toward developing anticonvulsant drugs, but these have serious side effects and more than a third of epilepsy sufferers get no relief from them. Epilepsy causes more than 50,000 deaths a year — more than breast cancer.
Advocates want to see more funding by the National Institutes of Health and by the Department of Defense. Combat-related brain injuries are a common cause of seizures, often years after the initial incident. Other causes include genetic predisposition, birth trauma, infections such as meningitis and encephalitis, brain tumors, and stroke. Most seizures occur for no evident reason. The sheer range of triggers for the chaotic electric discharges of seizures points to the complexity of understanding epilepsy’s basic mechanisms, but it is no excuse for stinting on research funding.
The NIH’s Institute of Neurological Disorders and Stroke is seeking bold new approaches both to treatment and to understanding of the disease’s causes. Backed up by sufficient funding, these initiatives could lead to advances. Groups like Citizens United for Research in Epilepsy, led by Susan Axelrod and her husband, Obama adviser David Axelrod, are raising awareness and research funds on their own. Last month, CURE’s fundraising initiative reached Boston, with a Museum of Fine Arts event sponsored by
The sooner epilepsy moves out of the shadows of myth and into the full sun of government, pharmaceutical, and charitable funding, the better.