Where’s the funding? Epilepsy as an orphan. | August 2, 2022
Here are the facts, unhappy though they may be…
Epilepsy is the 4th most common neurological problem – only migraine, stroke, and Alzheimer’s disease occurs more frequently.
Its prevalence is greater than autism spectrum disorder, cerebral palsy, multiple sclerosis and Parkinson’s disease combined.
As many people die from epilepsy as from breast cancer.
There are 150,000 new cases of epilepsy diagnosed each year, and a total of more than 3.4 million Americans are affected by it.
Yet, public and private funding for epilepsy research lags far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for multiple sclerosis).
In total, and per patient, epilepsy research is significantly underfunded from three major sources: pharmaceutical companies, the government, and private foundations.
Pharmaceutical investment in epilepsy is less than in Alzheimer’s and Parkinson’s, and it’s expected to decline further over the next several years…
The government invests $140-160 million in epilepsy research, but per patient contributes less to epilepsy than it does to other major neurological disorders…
Finally, at less than $10 million, non-profit foundations contribute less than $4 per patient to epilepsy research. Parkinson’s, by contrast, receives $40-50 per patient from nonprofits.
Without research there can be no breakthroughs, not to mention a cure.
Yet per researcher, funding for epilepsy lags average funding for all diseases by nearly 50%.
Up to 50,000 Americans die each year from seizures and related causes, including drownings and other accidents.
And one in 10 people will suffer a seizure in their lifetimes.
By some estimates, the mortality rate for people with epilepsy is two to three times higher — and the risk of sudden death is 24 times greater — than that of the general population.
Plus, between 1 and 3 percent of the population will develop some form of epilepsy before age 75.
Aside from the stark shortfall of funding for research and breakthrough treatments, epilepsy funding also affects the way we live (and die).
That includes risks and management. Education of professionals — doctors, health care providers, public personnel.
Without overall awareness, there’s slim chance for reliable resources, community service and above all, understanding and acceptance.
Just because you can’t see epilepsy it exists, lurking invisibly, causing irrefutable damage.
It’s time to recognize epilepsy and help treat it.
Take it out of the shadows of ignorance and get the funding that it so sorely needs and deserves.
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