Epilepsy Talk

The Staggering Costs of Epilepsy | March 10, 2019

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

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.ucb.com/_up/ucb_com_news/documents/Epilepsy_and_Q


32 Comments »

  1. Many of those situations you mention- being stranded from lack of transport, the social consequences, unemployment, research, self-esteem certainly can be shared throughout most of the world.

    As for all the medical costs, insurances etc, I’m just so glad- as are my many peers in other Western countries- that we don’t live in the US. Not needing to think about the cost of our medications or hospital admissions, or co-pays or even needing health insurance at all in some countries takes away a lot of the stress attached to a chronic health condition. It’s impossible for us to comprehend your situation.

    Liked by 1 person

    Comment by Katie — March 10, 2019 @ 5:48 PM

    • I guess you are lucky, medically speaking.

      But the restrictions, “the social consequences, unemployment, research, self-esteem certainly can be shared throughout most of the world.”

      Liked by 1 person

      Comment by Phylis Feiner Johnson — March 10, 2019 @ 7:38 PM

  2. Reblogged this on catsissie.

    Like

    Comment by catsissie — March 10, 2019 @ 5:52 PM

  3. Some days are good. But I still know all about this, and that people ignore what I post. Those are the days I think, if it weren’t for bad luck, I’d have no luck at all!
    That’s when I keep posting. Hehehe…

    Liked by 1 person

    Comment by catsissie — March 10, 2019 @ 5:58 PM

  4. Wow great information! It is so awful the money that is not put into Epilepsy. Depression and self esteem is definately a big issue. If you are not on disability you dont get the heath insurance you need. Transportation is a big issue, not in my state. We have the MBTA The Ride and Medicare covers transportation to doctors. The Ride takes you everywhere you must pay $4.66 a ride.

    Liked by 1 person

    Comment by jennyme306 — March 10, 2019 @ 6:18 PM

    • Epilepsy is treated like an orphan.

      With depression, you’re “crazy”.

      And self-esteem, clearly doesn’t seem to count in the equation.

      Like

      Comment by Phylis Feiner Johnson — March 10, 2019 @ 7:42 PM

      • Depression is big issue as well giving you a whole nother heath issue. Especially if it gets as bad as suicidal. I tried to commit suicide then you get anxiety and more medication. As well as self esteem when people don’t understand what your seizures are. Then you become alone.

        Liked by 2 people

        Comment by jennyme306 — March 11, 2019 @ 12:54 AM

      • Hello Jenny I agree people don’t truly understand . On a day physically I don’t want to get out of bed because the pressure in my head is so heavy, or I know that today will be the day I might end up on the floor. But someone will say ” I know”, but they don’t, and they never will. That is the worst part.

        Liked by 1 person

        Comment by tianna79 — March 14, 2019 @ 2:40 AM

  5. In WV, you better live along the route of that PT vehicle / bus, or else you are out of luck. Even as you could be close to the route they travel by, they wont go out of their way for anyone, yet they will go to the end of the county line to pick up a person who lives near a road or state road, but to make any effort to actually pick up a person who lives off of a back road, forget that idea. Ask me, that is discrimination, where they will not serve to all people alike who NEED IT.

    Liked by 2 people

    Comment by C D — March 10, 2019 @ 6:53 PM

  6. It’s so hard explaining to your then 18 year old graduating high school “welcome to $30K a year in debt.”

    Liked by 1 person

    Comment by Jennifer Newsom — March 11, 2019 @ 5:02 AM

  7. Jenny, to me, depression is the biggest issue, not just for epilepsy or AEDs, but for LIFE.

    Just about any situation can breed anxiety, lead to panic, depression and despair.

    And that becomes a devil in its own guise. One that has us living in fear and isolation.

    What comes next? How do you handle it (or not)? Is there any right way for you to slay this dragon?

    Liked by 2 people

    Comment by Phylis Feiner Johnson — March 11, 2019 @ 10:19 AM

    • Phyllis we are our worst enimies. I don’t have the perfect answer, because my outlet used to be running. But I had back surgery in April of 2017. So I can’t run at the moment. I know I’m a hot mess, so I don’t have the right answer , at the moment because I’m having an issue dealing with it myself. I’ve been doing a whole lot of praying, asking for strength, and I started reading # girl wash your face by Rachel hollis. It’s funny, yet she talks about real situations. We got this girl, we can do this! Try to say this to yourself when you are in doubt, I do

      Liked by 1 person

      Comment by tianna79 — March 14, 2019 @ 2:32 AM

      • Good for you, for being so proactive.

        And thanks for the tip.

        On the opposite end of the spectrum, have you ever read “A Mind Unraveled” by Kurt Eichenwald.

        It’s a terrific story of adversity and triumph.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — March 14, 2019 @ 9:55 AM

  8. The feeling of guilt that you are the one causing the family’s total financial issues is terrible. After having a career that actually had a pretty darn good salary going onto disability is humbling and scary also. I’m so grateful that I was able to get approved onto disability because I know that many people aren’t able to. Then of course the effect that has on my self esteem is terrible also. I sure don’t feel like I’m worth much. Thanks for your posts so we can gain perspective and information. They also make me feel not so alone in this fight. Peace

    Liked by 2 people

    Comment by Cindy Fiser — March 11, 2019 @ 11:21 AM

  9. I understand that disability can make you feel like a burden.

    But, on the other hand, you’re less of a “burden” than without it.

    Even if you had to leave your high-paying job.

    At least, it’s some kind of financial relief.

    Like

    Comment by Phylis Feiner Johnson — March 11, 2019 @ 11:25 AM

  10. You are so right. I have a well paying job with great insurance but have kept my diagnosis a secret since I travel and every state has different driving restrictions, though I pay for ride share out of pocket for my job. I was terminated from a position two months after being diagnosed with epilepsy, yes I sued and won, but it let me know in order to pay for my prescriptions and doctor visits, I would have to lie. Blogs like this help me know I’m not alone and helps with my bouts of depression. Thank you

    Liked by 2 people

    Comment by Jennifer — March 13, 2019 @ 7:46 PM

    • Hello Jennifer I have my good days and bad days physically. All of my friends and co-workers know I have seizures, but that’s only because I do not want them to panic if I have one around them. I am lucky in the sense I have warnings, so I know when I needed to pull over, or keep my pills on me. Everyone around me knows ,but only 3 of my friends have actually seen me during an episode. I am new to this blogging stuff but have found it is very helpful in knowing I’m not alone. #eyesonepilepsy.blog

      Liked by 1 person

      Comment by tianna79 — March 14, 2019 @ 2:16 AM

      • You’re fortunate to have such understanding friends.

        For years, I keep my epilepsy in the closet.

        It was my “dirty secret”.

        Like

        Comment by Phylis Feiner Johnson — March 14, 2019 @ 9:47 AM

  11. For many years, epilepsy was my “dirty secret”.

    I understand where you’re coming from, Jennifer.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — March 13, 2019 @ 10:14 PM

  12. Hello Phyllis the cost of epilepsy is outrageous. My self esteem is the most expensive for me. Recently my seizures have reached the threshold of my medication, and honestly I have become nervous to go into public. I just lost my license temporarily,and at the same time I’ve lost my independence. I am currently unable to work, so at the moment it seems as though self-esteem is unaffordable

    Liked by 1 person

    Comment by tianna79 — March 14, 2019 @ 2:07 AM

    • Isolation will only get you into a deeper funk. (Easier said than done.)

      Is there an epilepsy support group near you?

      Epilepsy Support Groups

      https://epilepsytalk.com/2019/01/28/epilepsy-support-groups/

      Or perhaps a group that you can join that’s interested in the same things you are?

      Like a book club?

      I know depending upon others is painful and embarrassing.

      I lost my license for 8 months. And I couldn’t have felt more helpless.

      Like

      Comment by Phylis Feiner Johnson — March 14, 2019 @ 9:45 AM

      • Hello Phylis sorry for the late reply, these last few weeks have been mentally and emotionally exhausting. There are not support groups in my area. I met with a friend the other day who is very involved with the epilepsy foundation, and she had suggested that I start a support group. I feel it would be a good idea because it will not just benefit myself, but others also. The loss of my independence, not being able to work, the loss of my friend, and a week later the loss of my father has been very overwhelming. I am trying to keep moving forward, without looking backwards.

        Liked by 1 person

        Comment by tianna79 — April 4, 2019 @ 4:03 AM

      • Tianna, fist of all, please accept my condolences. I wouldn’t be as well pulled together as you are right now. You’re one brave lady.

        Secondly, I think the article below (which you may have already read), may help. It’s about creating your own support group, resources and existing support groups.

        Epilepsy Support Groups

        https://epilepsytalk.com/2019/01/28/epilepsy-support-groups/

        Good luck.

        Like

        Comment by Phylis Feiner Johnson — April 4, 2019 @ 8:11 AM

      • Thank you, I’m trying to think of everything that has happened as: ” God doesn’t give you more than you can handle”. But I can tell you this time I think he might be pushing it a little. I will definitely check out the article.

        Liked by 1 person

        Comment by tianna79 — April 4, 2019 @ 8:27 AM

      • Please feel free to come here to talk, cry, vent, whatever.

        But I think that in helping others, you will help yourself most.

        Like

        Comment by Phylis Feiner Johnson — April 4, 2019 @ 8:32 AM

  13. Unbelievable stats. Grateful to be living in a state where my son gets assistance, otherwise there would be no way to keep up with the costs.

    Liked by 1 person

    Comment by epilepsydad — March 16, 2019 @ 8:08 AM

  14. Needless to say, there are many who envy you!

    Like

    Comment by Phylis Feiner Johnson — March 16, 2019 @ 8:23 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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