Epilepsy Talk

How much is epilepsy costing you? | February 19, 2022

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. Reblogged this on Disablities & Mental Health Issues.


    Comment by Kenneth — February 19, 2022 @ 9:51 AM

  2. ONLY 3.4 million IN the USA have epilepsy ? That number like the 65 MILLION that has not been added to over the past 10 years seems to be very low. Just wait how many MORE there will be after all these shots are being demanded to kids from 5 to 11 years old, plus those others over 18 to 90 who will suddenly have a seizure due to these shots. I KNOW I am crazy,, right,, so I would rather be crazy & right, than wrong and be 1 of the millions of sheep, to just do what i am told or suggested is BEST for me to do, and live the life so INDEPENDENT that I have to rely more on others with most simple things, as I STILL MAY later not knowing what this new drug now I am taking that SEEMS TO BE WORKING & should i say F I N A L L Y after 61 years a drug is found for my condition, BUT to say when talking to a UVA neurologist 11 years ago I was living in a FANTASY WORLD to think how a drug could work the way I think that 1 drug could work for me as I said THAT is what I need for a drug to allow me to HAVE THE FOODS I LIKE TO EAT with no threat of a seizure to happen to me in a few hours later. But taking all these other drugs were OKAY FOR ME to believe that they never worked but yet I was to take them to think THEY ARE GOING TO WORK 1 DAY and it just when my brain chemistry decided it will change while KNOWING those AED’s never was going to ever change my brain chemistry AT ALL. But to the CDC & FDA & AMA we are nothing to them, but living & useless scum to the world & worthless in their eyes & minds and for that WE really do not matter to them. So maybe now that has changed since XCOPRI is not still a trial drug as I am part of that as I type, with NO HAVING the seizure symptoms that WILL turn to a GRAND MAL seizure from ANY SOURCE that my brain can get weak from, as this drug is making a BIG difference with my GABA levels in my BBB & BRAIN CHEMISTRY/ CNS. All to say THIS DRUG would had helped me when I was only 3 to 10 years old & my teen years, but they say it only is good for ADULTS with epilepsy, but if I was a kid today I would say looking back I WANT TO TRY IT, as neurologist who are giving it to people like me SHOULD WITH CAUTION try it for these innocent kids who had nothing to do as to WHY they have seizures today, as I think of a 6 year old girl, who I believe can be helped from this drug XCOPRI. But the FDA, CDC & others think that WE are different to the entire world, & we are NOT to be looked at as someone special or needs the help, until maybe we are 60+ years old when our life had been surrendered over to them for most of those years. But I am no Abraham who will meet a Sarah to bare a child at 90, all to have a line of children who refused to OBEY but to ignore God & they still are today, because money mattered/s then,, as today MORE than God, who has always been there with me, as MONEY can not stop a seizure no matter HOW MUCH or little you have of it.

    Liked by 1 person

    Comment by James D — February 19, 2022 @ 10:07 AM

  3. How about just convincing me that I really have to go to the hospital because I had another “Drop/Atonic” Epileptic Seizure when I’m hungry, but I am also again bleeding from from my head.

    The si-called Doctor does nothing but a syringe of saline “to clean the area” and put a overly expensive “band aid” on the area not covering the it in full.
    I eat 2 of my own granola bars while waiting. No tests were done that’s what I was waited for to see if I was going to get EKG, MRI, CT and see if I was finally able to get an EEG after almost a quarter of a decade!

    I can’t fall asleep because I’m still thinking of my Cat that was forced from my hands, stolen. And me being locked out of my apartment for reasons I still don’t understand why!
    All I was told was “it’s Dangerous!” By someone who worked for the building corporation!
    No one else talked to me!
    Costly I can’t even get in touch my family and friends on phone because my phone was stolen and my where I personally used my own internet connection and email addresses to connect with family and friends et cetera were locked “to infinity and beyond” someone said outside of my then apartment after blowing the tv bulb!!
    My self care is null!
    I know that you wrote about costs as in dollars and cents and this is morality and self respect, self esteem, human rights violations, animal abuse and I don’t have compensation for the violence that I have gone through because of the Epilepsy.
    Ignorant people brush of the Epilepsy because they “know” the sprawling around stereotypes but that’s the only one out of 60 other Epileptic Seizures?!
    I don’t claim to know everything about every Epileptic seizure yet before these ignorant people stole my internet connection I was trying to continue my education with Epilepsy.
    And a few other studies surrounding Psychology around bullying.

    That is a cost that no one thinks of until they see blood or murders.

    That is what certain people have been attempting or trying to do with me now using your page!

    Since 2014, 2015, 2016, 2017, 2018
    Blaming this on my fiancé for the longest time because he hasn’t been physically around me. They the ease droppers haven’t listened to me talk to to him!

    But they are the only ones that were around 2015… To make me stay away from the police and still are with verbal threats of physical violence to me!

    Liked by 1 person

    Comment by Tabitha — February 20, 2022 @ 12:52 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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