Epilepsy Talk

Where’s The Funding? Epilepsy As An Orphan | April 12, 2017

Here are the facts, unhappy though they may be…

Epilepsy is the third most common neurological disorder in the U.S. after Alzheimer’s disease and stroke.

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 200,000 new cases of epilepsy each year, and a total of more than 3 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.

There is also a rise expected in the incidence of epilepsy among the veterans of the wars in Afghanistan and Iraq who have sustained traumatic head injuries.

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 into the funding that it so sorely needs and deserves.

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  1. What draws funding attention to a disease or disorder? Seems as if the disease must either have a profile focusing on little kids or be age-related. I can’t see epilepsy competing in this funding market. I realize this sounds shallow and marketing-based, but a lot of funding is exactly that.


    Comment by Kate Jacques — April 12, 2017 @ 2:27 PM

    • Kate, I agree. It’s a function of ignorance, misunderstanding, lack of publicity and BIG BUCKS.

      No one seems to be able to pierce people’s hearts with tender concern, or much concern at all. 😦


      Comment by Phylis Feiner Johnson — April 12, 2017 @ 2:45 PM

  2. Oh YES!!! How Epilepsy/Seizures affects our lives. How the foods of the 95% + & drinks as well, that are saturated with MSG’s, ASPARTAME’s & alike, that can have a GREAT impact on triggers for having seizures, and yet we who are effected that way, have NO VOICE or SUPPORT from others in our neurologist offices or from the ADVOCATES, who claim to be on “”our side”” yet the issues of MSG’s & ASPARTAME’s never becomes an issue, Drug companies can use MSG’s & ASPARTAME’s in AED’s but that is okay, as it was suggested to me AFTER I researched it of course to think about using BRIVIACT, a new drug which is more like KEPPRA besides of a few things the briviact has that Keppra does not have, but are all the same drug otherwise.So tell me again WHY ?? MSG & ASPARTAME, and other food chemicals that’s known for causing seizures, NEVER gets a green light to talk about in the epilepsy world ?


    Comment by C D — April 12, 2017 @ 2:27 PM

    • C D, There’s so much more that doesn’t get talked about in the epilepsy world and outside of it.


      Comment by Phylis Feiner Johnson — April 12, 2017 @ 2:47 PM

    • Another seizure trigger,for me at least,is high fructose corn syrup. It’s put in so many products because it is cheaper than sugar. Any product containing MSG will most likely have HFCS.

      As for Briviact, I tried it and my seizures increased. I’m not a surgical candidate as I have my seizures on both sides of the brain. I have my doctors stumped.


      Comment by Scott Vitale — April 15, 2017 @ 1:06 AM

  3. We, as people who have epilepsy, need to work to raise awareness. If we don’t do it, it won’t get done. Be a loud voice for epilepsy awareness.


    Comment by Shari Dudo — April 12, 2017 @ 5:23 PM

  4. On Friday night my 33 year old son died in his bed leaving grieving parents and a twenty three month old daughter. He had epilepsy from the age of two pretty well controlled with brand medicine. Then one year ago seizures returned after 7 years of none. He wasn’t feeling well and vomited a lot Friday morning. He wasn’t feeling well do he went to lay down at 5:40 and was not breathing when his wife found him an hour later. We are so sad. I hope epilepsy research continues.


    Comment by Ann — April 12, 2017 @ 8:47 PM

  5. I live in the UK, N Ireland, the epilepsy service is bad enough in England but here we’ve only got 7/8neuros for 1.5 million people, only 1mri machine for diagnosing, the neuro center is in Belfast, the capital and people have to travel perhaps 100miles to get there. There’s been a plan in place for a specialist centre and more staff but it’s been shelved for several years and it seems to have been forgotten. I often wish I was in the US, I see so much more care, research, awareness than we have


    Comment by Gail Barry — April 14, 2017 @ 3:53 AM

  6. I live in South Africa, I think we are so far behind with regards to research its scary. There is a new drug being released next month – the first in SA in 10 years!! We have a Departmental Store where you can swipe your card every time you purchase. Its to raise funds for charities etc. My one charity is Epilepsy SA and I get a statement every month to show how much money went to that particular charity. I don’t think its ever reached R200 and that is in general from whoever supports Epilepsy SA.


    Comment by Michelle — April 14, 2017 @ 12:52 PM

    • But what a wonderful thing that you do and what a terrific example that you set.

      I wish more people could be like you, Michelle. 🙂


      Comment by Phylis Feiner Johnson — April 14, 2017 @ 2:55 PM

  7. You would expect a medical condition that is nearly 4% of the population would get more funding (1 out of every 26 people have epilepsy).

    Sadly the same is true for other medical and genetic conditions. Pharmaceutical companies need to make money back after putting in hundreds of millions (closer to a billion) in research and development. Bottom line is $$$. I would think a condition that has people on drugs for most of their life would bring in revenue.

    The genetic condition that was the cause of my epilepsy occurs in roughly 1/3000 people. You can imagine how little drug and treatment development exists for conditions that infrequent. Even looking for published materials is very dated with it.


    Comment by Travis — April 28, 2017 @ 1:16 AM

    • Travis, you might be interested in this article:

      Is Epilepsy Inherited?


      And yes, I agree. Even though BIG Pharma spends millions in research and development, the lifetime payoff is $$$.


      Comment by Phylis Feiner Johnson — April 28, 2017 @ 9:09 AM

      • It is hard to know if Big Pharma gets a decent return on epilepsy drugs. We make take them for life but the patents wear off much earlier. After that, the majority of the market is generic knock-offs. Maybe we should ask some pharmacists or pharmaceutical companies.


        Comment by Kate Jacques — April 28, 2017 @ 9:14 AM

  8. Point well taken Kate. Thanks for your point of view.


    Comment by Phylis Feiner Johnson — April 28, 2017 @ 10:21 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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