Epilepsy Talk

The Staggering Costs of Epilepsy | April 24, 2018

The fact that epilepsy is expensive is no secret. The meds, medical care, the doctors’ visits, hospital bills, health costs, the injuries and finally, the cost of self-esteem.

The statistics are sobering but true…

Epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.

Total hospital cost was estimated at $532.4 million and expenditures for physician services were $76.7 million.

The average cost of an emergency department visit related to epilepsy is $707.

$33,006 is the average annual cost incurred by people with epilepsy visits due to uncontrolled seizures.

$1,800 is the average cost per day for U.S. hospital admission of a person with epilepsy/convulsions.

$317,000 is the average lifetime wages lost by men who continue to have seizures.

 $140,000 is the average lifetime wages lost by women who continue to have seizures.

More than 50% of people with seizures are either underemployed or unemployed.

That’s a staggering statistic. And there’s the economic strain of sustaining a household. Rent, bills, care, food, transportation, etc.

It’s not that the incentive is not there – it’s the means.

Lots of people with epilepsy have physical disabilities which also limit independence.

Like not having a driver’s license and being stuck — except for rides from others or public transportation, which isn’t available everywhere. (Like here!)

So the ability to do simple things like grocery shopping, errands, getting to a doctor’s appointment and just socializing in general are stymied.

Plus, with many, there’s the stress of not being able to commute to a job. Or not having a job at all.

Which means no insurance, the agony of social security and whatever other financial assistance is available.

And the financial aid statistics are equally grim.

Although epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production, each year the National Institute of Health (NIH) spends $30 billion of medical research, but just ½ of 1% of it is spent on epilepsy.

This despite, the fact that epilepsy is the fourth most common neurological disorder in the U.S. after migraine, stroke, and Alzheimer’s disease.

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, nonprofits contribute less than $4 per patient to epilepsy research. Parkinson’s, by contrast, receives $40-50 per patient from nonprofit foundations…

And the United States spends a piddling amount of approximately $15.5 BILLION annually on epilepsy-related expenses — including medical expenditures and informal care.

All over the world, the social consequences of epilepsy are often the cause of more suffering than the seizures themselves.

In fact, in one study, participants anticipated that their self-perceptions and self-esteem would be more positive if they didn’t have epilepsy.

Self-perception turned out to be one of the most important predictors of successful social relationships in people with epilepsy — even more important than seizure frequency, severity, or other medical factors!

But self-esteem with a run-away condition is elusive to many of us who suffer from epilepsy.

That’s why we need each other. Plus education, advocacy and support.

Clearly, if we don’t do it, who will?


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  1. And then there is also the cost of trying all the things that the medical establishment considers “fringe” but that might have some benefits such as taking supplements, getting acupuncture or neurofeedback treatments, etc. This stuff adds up.
    The catch 22 is that such things are too fringe to fund a study into which means that there is no hard data to prove they work so the medical professionals can’t “officially” even recommend them without liability issues.
    So we are left to experiment on ourselves to try to figure out what is effective.
    In the end it’s all about the money. Sigh.


    Comment by paleobird — April 24, 2018 @ 6:37 PM

    • I don’t know Paleo.

      After writing about health and wellness and alternative medicine for ten years, I think there’s something to be said about Complimentary Alternative Medicine. (CAM)

      There have been many peer studies and double blind studies, but because they’re not funded by BIG Pharma, they get little recognition.

      Supplements are what I have in mind. Preventative supplements. I believe in them and I take them. And I’ve seen proven results in myself.

      Brain Food for Your Health… https://epilepsytalk.com/2017/07/28/brain-food-for-your-health/

      So, while I agree that the expense of finding solutions, alternative or otherwise, fall to us, I don’t think it’s all for naught.


      Comment by Phylis Feiner Johnson — April 24, 2018 @ 11:34 PM

  2. Also, as a patient, I’d rather do the simplest tests & procedures 1st before going all out for a BRAIN SURGERY, that I had 17 years ago, & other tests that I never had like 1-glutamic acid test,, Progesterone tests,, as a pharmacist tells me that a man has 1/10th of the progesterone that a woman has, & that men with LOWER progesterone levels are as prone to seizures who have low progesterone. Also a GABA test if it can be tested could gt done. I know the MAYO CLINC & the N I H both have their ways to do those things, that the FDA could approve for all neurologist to have done for us. So 2 maybe 3 tests I could have which I never have had done for me, but a V N S is suppose to be my next option IF I believe it will be that answer to stop ALL seizures. I have been told too that a VNS can create MORE seizures, like I want that. So would the 3 tests cost LESS money for me than a VNS with other future trips for VNS adjustments ? Since neurologists in all 50 states are practicing on us, then WE should charge them for using and maybe abusing our brain with INTEREST on each day the find NO ANSWER to our condition.


    Comment by C D — April 24, 2018 @ 7:04 PM

    • Our cost is not only the money but the brains. (Pardon the pun C D.)

      I agree that a ton of more testing could be done, with little cost to the medical machine. (Maybe to us though.)

      The answer is once again — follow the money. Who’s to gain most? (You know the answer.)


      Comment by Phylis Feiner Johnson — April 24, 2018 @ 11:39 PM

  3. Let’s face it, in many cases to those who have to keep enduring endless seizures & medical bills, Epilepsy is a highway to bankruptcy.
    One wonders if the financial costs & hardships are worthy of the elusive remedies, one hopes to control & cure the epileptic seizures that keep striking when least expected, raising the financial burden to survive epilepsy more expensive.
    In the end, life has to go on with or without epilepsy for life has been made for the “survival of the fittest”.


    Comment by BahreNegash Eritrea — April 25, 2018 @ 11:45 PM

    • Epilepsy and financial survival are the problem, as you say Gerrie.

      For those who don’t have the money, it can be a matter of life and death.

      Insidious power left in the hands of BIG Pharma.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 26, 2018 @ 9:16 AM

      • Phylis,
        I would like to think, as civilized society the Epilepsy communities should have effective support groups, where social establishments & government aid could fund the support groups to share the financial difficulties of some people who’re having hard times surviving Epilepsy & economic hardships.
        As for the Big Pharmaceutical Industry, corporate empires established to make profits can NOT be expected to help contribute part of the very profits the corporations invested their money for.
        Yes, it would have been very humanely decent thing to do for big pharmas to fund Epilepsy communities, unfortunately the stock market of the pharmaceutical industry does NOT make profits investing on humanly decent contributions to Epilepsy society.
        Instead of betting on the big pharmas, the Epilepsy advocacy groups campaigning for the big government to fund Epilepsy projects & demand for financial aid would make more effective struggle than shaking the big pharmas corporate interest.
        After all, responsible people make for responsible government.

        Liked by 1 person

        Comment by BahreNegash Eritrea — April 29, 2018 @ 9:01 AM

      • Yes, Gerrie, I agree. There’s little future for BIG Pharma to find a solution as with other conditions. That’s why I consider epilepsy an orphan.

        Even the NHS offers little.

        Advocate and educate we must, for few others will speak for us.


        Comment by Phylis Feiner Johnson — April 30, 2018 @ 11:12 AM

  4. Not to mention the added costs if you do the ketogenic diet. MCT oil isn’t cheap.


    Comment by Sandy — November 2, 2018 @ 5:46 PM

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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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