Epilepsy Talk

How much is epilepsy costing you? | October 18, 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 3.4 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, 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. Said it before and will say it again. I am eternally grateful (or should that be relieved?) that as someone with a serious chronic illness I do NOT live in the US. To the rest of us it is beyond incomprehensible what you guys have to deal with on top of being ill 😦 While not everything is completely free for me, ambulances and public hospitals/specialists are, and most medications are fully subsudised, although there can be issues with getting specific brands, that is the down side. No system is ever perfect.

    Epilepsy has cost me the ability to ever work full time, and forced me out of any paid work for good over 10 years ago. While for now I live in a country that does still have a functioning welfare system and I get enough on a disability benefit to pay the bills, it is getting a lot harder because benefits have been frozen for years, and like in all the Anglo countries now, welfare recipiants are being deliberately demonised by politicians and the media (who either don’t realise or care that they’re including sick & disabled in their rhetoric) so there’s this constant reminder I’m a ‘bludger’ and drain on the hard working taxpayer because my brain misfires through no fault of my own. That’s even harder than the seizures to be honest.

    Liked by 1 person

    Comment by Katie — October 18, 2019 @ 4:14 PM

    • Being a pariah and a “drain on the hard working taxpayer” is not easy in any country. As if epilepsy wasn’t punishment enough.

      All I can think of is, thank goodness we don’t live in a third world country. (Although sometimes I wonder.)


      Comment by Phylis Feiner Johnson — October 18, 2019 @ 6:02 PM

  2. My daughter has epilepsy. Eight. years ago she had a vagus nerve stimulator put in ( cost $98,000 ) At the time she had maxed out of my husband’s insurance) we met the most wonderful doctor. He suggested. Badger Care. Core. She only was allowed 5 doctor visits a year. It was a gamble but we were also to get her on SSDI and SSI. She had her surgery. and the bill came. This wonderful doctor wrote off all I her bill except $279. About a month layer she finally was ellagible for SSI and SSDI.. I really is a special doctor. I always give him a hug for giving me back,my daughter.

    Liked by 2 people

    Comment by Gwen J Keno — October 19, 2019 @ 9:42 AM

  3. You ARE SO TRUE ABOUT THE ECONOMICAL TOLL on everyone!! But if I may sometimes I wonder if we as epileptics are not being used as a cash cow to the professionals in varies way or even pharmaceutical companies and pharmacies. Because I can to realize not only was the stress of a family’s life difficult on the epileptic but then the doctors are always so quick to put us on unnecessary medication that also costs even more in WAY MORE WAYS THAN ONE TO THE PATIENTS. And the dangers of those medications can also lead to other medical conditions (I didn’t realize existed until I was introduced to them myself) such as serotonin syndromes brought upon by the medication the neurologists or epitologists put us on. Leaving us to feel either rebellious or having even more unanswered questions about why we have to take the medication at all. Or maybe why we know and then have to wait in pain for so long only to realize the neurologist does not have a very good track record with his patients and again is always trying to put the patients on MORE MEDICATION!!!! I though the idea was to get to the point of less medications possible? And then not only hearing but believing the patient once we wait for 9 months or years really!! Now onto another neurologist who isn’t going to hear me. I apologize then the simple fear of losing my form of independence being on the line (drivers license) even though I never drive leaves me feeling even more scared to go in. My issues wasn’t necessarily the seizures (I haven’t had one in over a year in my sleep because I lost my childhood friend tragically) or even longer than that, but it’s the stomach pain and side effect of the medication I’m already on causing the problem. Lol probably “Serotonin Syndrome” cause from too many medication over decades and years!!!!! Now what kind of questions can be asked to a neurologist to get the proper help and no more medication without threat of having a drivers license taken away. Oh those POOR CHILDREN WHO CAN NOT EXPLAIN THINGS TO THE NEUROLOGIST WHEN THEY CAN NOT EVEN UNDERSTAND THEMSELVES?!

    Liked by 1 person

    Comment by Kathy S.B — October 20, 2019 @ 12:59 AM

    • Doctors are not in the business to cure patients. They’re in the business to “treat” patients.

      Just ask BIG Pharma and follow the money. 😦

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 20, 2019 @ 11:22 AM

      • Yes I realize that, but how can an epileptic then help themselves or eachother so it can be dealt with in a manner to which it doesn’t hurt or come at the cost of other epileptics who really want to be alright and get better because they can’t always afford the drugs or even know how to say what maybe wrong with them? Do we just go “cold turkey” to get off of them ourselves? Poor poor little children and their families who are not even aware of this!! Or have no idea what to tell the doctors? What is the best way to address this with a neurologist or family doctor that will benefit the patients and children or those who are not able to speak for themselves? Thank you

        Liked by 1 person

        Comment by Kathy S.B — October 20, 2019 @ 11:30 AM

  4. It’s called “serotonin syndrome” brought on by some of the “Epileptic Medications and anti depressants” that can and will turn into another “true disease” if not taken care of quickly. Why can we figure these things out and yet have to see an internal specialist and neurologist and family doctor? Lol they still have no clue because I found that from another person with epilepsy. I still have to tell them myself. Which will be this week. The medication causes the serotonin levels in a persons intestines and stomach. That is brought on by the tegretol and carbamazepine mixed with other medication. Please look it up. It may hit a nerve. It’s called “Serotonin Syndrome”. What an eye opener!! Maybe I wasn’t pretending after ALL THESE DECADES!!!!!!!! Please be well and take care of yourself Phyillus 💕.

    Liked by 1 person

    Comment by Kathy S.B — October 20, 2019 @ 11:13 AM

    • I just looked up serotonin syndrome and it IS scary.

      Thanks for the education and the heads-up, Kathy.

      “If you take different prescribed medications together, you may end up with too much serotonin in your body. The types of medication that could lead to serotonin syndrome include those used to treat depression and migraine headaches, and manage pain. Too much serotonin can cause a variety of mild to severe symptoms. These symptoms can affect the brain, muscles, and other parts of the body.

      Serotonin syndrome can occur when you start a new medication that interferes with serotonin. It can also occur if you increase the dosage of a medication you’re already taking. The condition is most likely to occur when two or more drugs are taken together. Serotonin syndrome can be fatal if you don’t receive prompt treatment.” https://www.healthline.com/health/serotonin-syndrome

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 20, 2019 @ 11:29 AM

      • Thank you. I would like to take the credit but I can’t because it was another very close friend of mine with epilepsy who came across it and sent it to me. SHE SHOULD BE THANKED!! But IN SINCERE HONESTY WE ALL SHOULD BE THANKED FOR TAKING CARE OF EACHOTHER FROM THE BOTTOM OF OUR HEARTS!!!!!!! 🙏🏼🙏🏼🦅💞😘

        Liked by 1 person

        Comment by Kathy S.B — October 20, 2019 @ 11:34 AM

      • Funny how their prompt treatment almost cost me my life for their education!! All by a stoke of their pen or a push of a “SEND” on their computer. While I wait in agony and pain for almost a year. All of that medication probably also affect the pituitary glands and hypothalamus causing hyponatremia too

        Liked by 1 person

        Comment by Kathy S.B — October 20, 2019 @ 1:01 PM

      • WOW!!!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — October 20, 2019 @ 1:04 PM

  5. The sad part is they doctors, specialists and BIG PHARMACEUTICAL COMPANIES may have no clue what to do now to help us help ourselves. So how do we do that with out feeling patronized by our neurologists and doctors as well as other internal specialists? I find it so upsetting to the point of having to just laugh because this could of all been avoided had the neurologists kept putting me on more and more drugs that hurt me more and more!! When really I already knew a long time ago and they refused to simply prescribe me simple “lorazepam” at the LOWEST DOSE POSSIBLE!!!!! The money and gold get pretty heavy and hard to hold up in their pockets or political coffers if it brings everyone down over time!! I had stomach aches right from a little girl to now. They were so bad and get so bad it feels like my stomach is going to blow up. I didn’t even know I was in labour until after I had my children because I thought it was just a little stomach ache and brushed it off. Once I realized I was actually in labour I told the doctors “OH? THAT WAS LABOUR?? Gees here I thought it would be way worse pain than that!!!!! I was NEVER BELIEVED BY ANYONE!!!!!!! Hopefully and I pray no other little person (who can’t explain that to their doctor) and epileptic CAN NOW AND ARE HEARD AND LISTENED TO AND BELIEVED!! 🙏🏼🦅❤️😘 before it’s too late. Thank you Phylis and please take care 😘

    Liked by 1 person

    Comment by Kathy S.B — October 20, 2019 @ 12:04 PM

  6. I ask for pediatric doses. If the doctor says no, I ask the pharmacist if a pediatric dose is available. When the answer is yes, the pharmacist – who is a Real Person, not a clone – will phone the doctor and negotiate, and almost always I get the lesser dose. One doctor said, “I didn’t even know that it came in such a low dose.” But he didn’t check, he just said no.
    So ask. Keep asking.

    Liked by 2 people

    Comment by HoDo — October 21, 2019 @ 11:11 AM

  7. Goodmorning Phylis 😀. You know I always research my medication myself before I get it filled out. If I don’t feel good with it I simply won’t take it!! The doctors, pharmaceutical companies have got to realize “I am a human like them!! I have to always think of my husband, children and loved ones first and then weight my options”. I take a piece of paper and on one side list ALL THE POSITIVES and on the other side list ALL THE NEGATIVES!! Then I weigh the negatives (some of which we all teach eachother here THANK YOU) and go from there. Epileptics are EXTREMELY INTELLECTUAL PEOPLE!! Sometimes it can almost be intimidating to medical professionals who then TRY AS HARD AS THEY MIGHT to OVERSTEP THE BOUNDARIES AS MEDICAL PROFESSIONALS TOO!!!!! We’re their money makers or “experiments” or even “lab rats” and “Cash Cows”!! No I am a human being just like they are working to help them help me so I can be a better wife, mom, daughter, niece, friend and human being. I love my life and family. I want is to be here for my grandchildren one day as my grandma and great grandparents we for me!! 😘💞

    Liked by 1 person

    Comment by Kathy S.B — October 21, 2019 @ 12:11 PM

  8. I won’t THAT’S not my job. Don’t worry. However sometimes even the pharmacists are so bombarded they themselves probably feel the same way, but can’t say that. I just truly wish the Specialists would work with us and be truthful themselves maybe then we will all be able to work together as a team 😊. I am a human too. Thank you 😊

    Liked by 1 person

    Comment by Kathy S.B — October 21, 2019 @ 12:29 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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