Epilepsy Talk

The Staggering Costs of Epilepsy | July 15, 2017

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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Resources:

http://www.cureepilepsy.org/research/stateofepilepsy.asp

http://www.nationalacademies.org/hmd/Reports/2012/Epilepsy-Across-the-Spectrum/Report-Brief.aspx?page=2

http://www.newsweek.com/epilepsy-overlooked-and-underfunded-77467

http://www.sheknows.com/health-and-wellness/articles/832857/epilepsy-facts-epilepsy-by-the-numbers

http://www.healthline.com/health/epilepsy/facts-statistics-infographic#1

http://www.cececares.org/cost-of-epilepsy-seizures.html

http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1157.1999.tb00941.x/pdf

http://www.ucb.com/_up/ucb_com_news/documents/Epilepsy_and_Q


21 Comments »

  1. Another hidden cost is that those of us who seek alternative supplemental care in an effort to manage our conditions without such heavy reliance on pharmaceuticals, things such as cannabis extracts, dietary supplements, and body work, are completely “out of pocket” for those things even though they are very effective.

    Like

    Comment by paleobird — July 15, 2017 @ 6:20 PM

  2. Kudos for you! The information needs to be made known to doctors, hospitals and pharmaceuticals.

    Liked by 1 person

    Comment by Karen — July 15, 2017 @ 7:36 PM

  3. Hi Phyliss, I thank you for mailing this to me. I have epilepsy, but I’m in much better shape than many others. I have a part-time job and can live my own life. But I will not be able to live nearly as happy as I am now. That one reason is how my Medicaid buys my expensive medicine. I sure hope you sent this email to the Representatives and Senators. Sincerely, Bill Whittemore, I have epilepsy

    Liked by 1 person

    Comment by whittemore1958 — July 15, 2017 @ 9:31 PM

  4. 4 months ago, it was told to me by my neurologist, that a HEART monitor can tell him maybe IF there was any signs of my HEART activity causing the seizures & seizure activity I have bee having creating STRESS to the brain in the process. I’m thinking,, This is all new to me, & I never heard of such connection from the HEART effecting the BRAIN. Grand Mal seizures I knew will STRESS OUT ALL THE BODY & HEART, so I said HOW does all this happen with the heart causing seizures ? It was explained to me very smoothly & confidently to where I said OKAY I’ll try it as I WANT AN ANSWER before I die why seizures have been with me for over 56 years. Yesterday I finally got the final bill I HOPE, as that total cost of wearing that monitor for 1 month was over 6,200.00. All the results showed NO CAUSES of my hearth being the seizure problem. I figured that will be the result, as NO HEART PROBLEMS but 1 when tegretol made my heart go crazy in 1991. NO more tegretol & no more heart problems like that one since. 2009 was a blockage and had to have a catherization, and after having a PRAYER before it was done, the test / catherization showed NO BLOCKAGE. So my question is of that $6,200.00 Where & WHO did all that money go to ? Have not been seen since April & Oct is my next time back there to hear a doctor decide WHAT my life is worth to them, ”when all tests they think about do not work” for getting me seizure free for life. It should be a LAW where every person who’s ever had a condition of seizures, needs to make it a regular test of a GLUTAMIC ACID reading to know HOW the brain electrical system can be working. If that would be their idea, you may say YES,, BUT if you think of that test to get done for you,, they will say NO & not likely to hear a YES.

    Like

    Comment by C D — July 15, 2017 @ 9:49 PM

    • $6,200 to just make sure your heart was beating properly? Well you know where that went C D.

      The test of Glutamic Acid sounds interesting and revealing, but I know nothing about it.

      Like

      Comment by Phylis Feiner Johnson — July 15, 2017 @ 10:21 PM

  5. Epilepsy causes more deaths than breast cancer? This I did not know.

    Like

    Comment by Lydia Alexander Moon — July 15, 2017 @ 11:41 PM

  6. So so informative just like all the information you forward to us Thank You Phylis xx

    Like

    Comment by Sharon McKay — July 16, 2017 @ 11:40 AM

  7. Is there an avenue to apply and receive unemployment benefits because we cannot drive to our workplace?

    Like

    Comment by Lissa Roberson — July 17, 2017 @ 8:21 AM

  8. The closest thing would be Josh Provides. They provide transportation expenses to and from home, school, medical services and employment, through the purchase from or through third parties of gas cards, bus passes, taxi cab cards, or other third-party transit options. http://joshprovides.org/get-help/how-joshprovides-can-help/

    Like

    Comment by Phylis Feiner Johnson — July 17, 2017 @ 9:02 AM

  9. Reblogged this on catsissie.

    Like

    Comment by catsissie — July 17, 2017 @ 4:47 PM

  10. Thank you for calling attention to this, Phylis! And then, there are the side effects–of the meds, the treatments, the seizures–even afterwards. There is certainly no one-size-fits-all description of this condition!

    Like

    Comment by catsissie — July 17, 2017 @ 4:59 PM

    • Nope. Anyway you look at it, the fight against epilepsy is a challenging one.

      But let’s not call it a losing battle — yet!

      Like

      Comment by Phylis Feiner Johnson — July 17, 2017 @ 5:30 PM

  11. Have you ever connected with the Anita Kaufman Foundation?

    Like

    Comment by TT — July 19, 2017 @ 9:56 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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