Epilepsy Talk

Epilepsy — At What Cost? | September 7, 2014

Here’s a look at how epilepsy can affect your pocketbook…

$9.6 billion

Annual epilepsy-related expenses in the U.S., including medical expenditures and informal care. (Source: Epilepsia, the journal of the international league Against epilepsy, 2009)


Average cost per day for U.S. hospital admission of a person with epilepsy/convulsion. (Source: Healthcare cost and utilization project, 2008)


Average cost of an emergency department visit. (Source: Agency for healthcare research and Quality, 2007)


Average lifetime wages lost by men who continue to have seizures. (Source: Epilepsia, 2000)


Average lifetime wages lost by women who continue to have seizures. (Source: Epilepsia, 2000)


Increase in hospitalization among people with epilepsy who do not take medication regularly. (Source: American Academy of neurology, 2008)


Average annual cost incurred by people with epilepsy who made frequent ER visits due to uncontrolled seizures. Patients whose seizures were controlled spent 80% less per year. (Source: ucb, inc., 2010)

As many as 44% of the people in the U.S. who have epilepsy — more than 1 million people — continue to have seizures, despite getting medical treatment, according to a report in the journal Epilepsia.

These people, and others who have uncontrolled epilepsy, contribute disproportionately to the cost of treating the chronic disease, say researchers who found that patients with poor seizure control represented 25% of all cases, but accounted for up to 86% of all costs.

The annual cost of the estimated 2.3 million cases of epilepsy was projected to be $12.5 billion, with anti-epilepsy drugs accounting for 30% of direct medical costs.

Indirect costs, such as lost earnings and lost productivity, accounted for 85% of total costs and were significantly higher than 1975 estimates suggested, researchers say.

The cost of medications alone every month is between $1,000 and $3,000 (and sometimes more).

The financial costs of epilepsy don’t end with medications – there’s a wide range of possible other costs, including travel to see specialists, buying safety equipment and communication devices, and funding a specific diet.

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

No wonder they call epilepsy “The orphan disease.”


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  1. Wow! What an eye opening article! I assure you this will be shared at next months support group meeting. Thank you Phylis!


    Comment by charlie — September 9, 2014 @ 8:57 AM

  2. Amazing the amount of money-and I still get seizures!
    I am about to head to the Mayo Clinic to be evaluated for the gamma knife procedure. Do you have any information about this?


    Comment by Jeffrey Spivak — September 9, 2014 @ 11:45 AM

  3. The Gamma Knife — Non Invasive Surgery

    Neurosurgeons continue to explore the less invasive Gamma Knife radiosurgery for elimination of temporal lobe abnormalities and brain lesions.

    The Gamma Knife itself has been around for quite a while, so there’s a history of its use. But its application specifically for this form of epilepsy hasn’t really been done before. Therefore, the purpose of recent research was to see if the advantages of this minimally invasive tool could provide an alternative to standard surgery.

    In one clinical Gamma Knife surgery trial, researchers found the number of seizures was dramatically decreased from a media of 92 seizures per month pre-operatively to 6 seizures per month after the procedure. And another smaller study showed, 66% of patients to be seizure-free following 18 months of treatment.

    The term “Gamma Knife” connotes that it delivers radiation treatment as though it were an actual knife, offering the kind of precision and targeting as actual surgery. Indeed, it uses radiation in much the same way as a surgeon uses a knife.

    The Gamma Knife “blades” are actually 201 beams of gamma radiation, with the precision of less than 1 mm, tightly focused to target the brain lesions. The aim is to impair the lesion and inhibit it from causing further seizures. Computer software guides the surgeon to the correct vantage points during the process and the lesion is carefully damaged.

    Over time (several months to one year), most lesions slowly decrease in size and dissolve. The radiation exposure is brief and only the tissue being treated receives a significant dose, while the surrounding tissue remains unharmed.

    When the entire lesion can be targeted, radiosurgery more than reduces the seizures, plus there are encouraging effects on cognition and quality of life. And although at this point, the procedure has shown to be ineffective for large lesions, Gamma Knife surgery could be a first-line surgical therapy to “blast” small tumors such as hamartomas — associated with partial gelastic (“laughing”) seizures.

    Published reports indicate that the Gamma Knife may be used as an alternative to standard neurosurgical operations or as an adjunct therapy in the treatment of residual or recurrent lesions left unresected by conventional surgery. And the fact that it is a single treatment, usually done as an out-patient procedure, makes it especially appealing for those who are qualified.

    “Epilepsy surgery probably is underutilized, and an alternate method may bring the benefits of surgery to a wider group of patients.” — Mark S. Quigg, M.D., Neurologist at University of Virginia School of Medicine


    Good luck. You’ve made a good choice. (IMHO).


    Comment by Phylis Feiner Johnson — September 9, 2014 @ 12:43 PM

  4. Neurosurgeons screwed my brain up for 6 years straight! The #1 rated Neurosurgeon in the U.S. did the Right Temporal Lobectomy Surgery on me when I was 13 in 1998 and he erased my entire memory which led to me not knowing a word of English, who I was, where I was, who my family was, no memories, full of pain for 6 years straight. After 6 years I finally learned my name back along with the words yes and no. I was 1 of the smartest kids in the city before then up until then.


    Comment by mike — November 27, 2017 @ 5:51 PM

    • OMG. What a travesty. How are you now? (Obviously in good command of your executive skills.)

      If it will make you feel any better, the same thing happened to my friend, in a brain surgery mishap.

      After two years in rehab — at one of the finest institutions — for which she diluted all of her assets, including her home — she was able to say “dog” and toilet herself.

      With grit and determination, 6 years later, she is very much improved. Able to read and write, but never go back to her profession as a psychotherapist. 😦


      Comment by Phylis Feiner Johnson — November 27, 2017 @ 6:59 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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