Epilepsy Talk

The Staggering Costs of Epilepsy | August 27, 2016

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 lack 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.

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

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. I recently had a bad seizure. I have no auras so I don’t know where it happened or how. I refused medication for the last 5 year’s and my epileptologist said they would get worse. Previously I had absence seizures, but when I fell and went to the hospital, I had an x-Ray and broke my wrist and and they called my doctor and he put me on Keppra. The only way I knew I had a seizure, was that I was bruised on my face and knees. I have to focus on the positive. It could have been much worse. I am also grateful I have public transportation.

    My question to you is, why is it so difficult to get a seizure alert dog. I do not have auras and really need one. As you said, most people with Epilepsy lack money, and the dogs cost a lot and there is a long waiting period. What can I do for myself and others who it would help?


    Comment by mary levell — August 27, 2016 @ 2:42 PM

  2. First of all, stopping your meds is not a good idea.

    The Perils of Discontinuing Your Meds


    And you’re right, seizure dogs are expensive. You could inquire through your regional Epilepsy Foundation office.

    Or you could try Josh Provides.org.

    They provide financial assistance for those living with epilepsy and other seizure disorders and their families who are in need of help to pay for all or a portion of the expenses they incur for:

    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 plus:

    Prescription medication — Medical services — SEIZURE RESPONSE DOGS — Seizure detection devices — Seizure prediction devices.

    Also included are other technologies, methods, and devices which are recommended by the patient’s medical doctor and are not covered by private medical insurance, other reimbursement plans, or government-funded programs, i.e. Medicaid benefits and Medicare benefits (but not insurance premiums)

    I hope this helps, Mary.


    Comment by Phylis Feiner Johnson — August 27, 2016 @ 3:23 PM

    • Yes Phylis. I can always count on you to be most helpful and answer quickly.God bless you! You are another reason to be greatful


      Comment by mary levell — August 27, 2016 @ 3:59 PM

  3. Mary, so glad if I can help!


    Comment by Phylis Feiner Johnson — August 27, 2016 @ 4:06 PM

  4. Interesting numbers, it’d be interesting to see what the costs are here in the UK. Whilst we don’t have to pay for any medical treatment, we’re certainly getting some short shrift due to changes in Government policy. A few years back they brought in some legislation that stated all prescriptions had to be filled with the cheapest available option. That of course is a problem for maintaining seizure control if you’re used to the more expensive brand. Not only that, but they’re planning to label all medications that cost over £20 with “funded by the UK taxpayer”. We have more than enough to contend with without being guilt tripped by the Government!


    Comment by bardotbarbiturate — August 28, 2016 @ 6:20 PM

    • And everyone here thinks socialized medicine is grand.

      No, medical care is not “free”. It’s not FREE anywhere. We pay out of pocket, you pay by taxes. No handouts.

      We also have our problems with being handed over cheap generics. (A generic only has only 80% of the original formulary and 20% of unknown “filler”.)

      And there’s the gouging by BIG Pharma. I suppose over there you’ve heard about the Epi Pen scandal.

      And taxes? Well, guess who they’re supporting? BIG Pharma. The same good old boys who are in EVERYBODY’S pockets.

      End of rant.


      Comment by Phylis Feiner Johnson — August 28, 2016 @ 10:37 PM

  5. It’s a double edged sword, well, more like a postcode lottery. You can only get the treatment the local health authority can afford so if you’re in an overstretched area, your options can be limited, depending on what the condition is. Cancer drugs are frequently vulnerable to this. There are a lot of people who strongly believe that this Tory Government is deliberately running the NHS into the ground so that they can privatise it. Whilst I don’t remember much about it as it was in the 80’s, the Tory Government sold off a lot of public owned industries and many who do remember it, recall that their tactic was to run the industry/service into the ground to justify selling it off to their mates. Whilst healthcare isn’t free insomuch as it’s paid through taxes and National Insurance, the only time you have to physically put your hand in your pocket is for prescriptions which are a flat fee, regardless of the actual cost of the drug. Those with chronic conditions, like epilepsy, are exempt from prescription charges which is fortunate for people like me who couldn’t otherwise afford it. As flawed as the NHS is, I’d rather have it than not. Last November my mum was diagnosed with cancer and in December, she had half her insides whipped out to get rid of it and the areas that were at risk. That involved an 8 hour operation with 3 surgical teams and she spent a month recovering in a private ward the cost of which the NHS covered. I dread to think what the cost of that would’ve been if healthcare in the UK were privatised.

    Yes, the Epi Pen scandal has been big news here, as was that other joker earlier in the year. Things like that are why people are scared of the NHS being privatised, especially those with chronic conditions, but this is not the only problem we have to face. The Government have been doing some really crappy things to those on benefits, especially disability benefits, with tragic results (some of them involving people with epilepsy). http://www.disabilitynewsservice.com/how-a-single-word-shows-dwp-has-finally-owned-up-on-benefit-deaths/ The events of the last few years even prompted the UN to carry out an investigation into human rights abuses. http://www.huffingtonpost.co.uk/2014/08/28/un-dwp-benefits-disabled-human-rights-probe_n_5727580.html The alarming thing is that despite the investigation, the Government sought to cut disability benefits even FURTHER earlier this year. In the UK, any legislation has to first be agreed by majority in the House of Commons (elected politicians), then agreed by the House of Lords (unelected rich people). The House of Commons agreed the cuts, the House of Lords refused them. Unhappy with the House of Lords decision, the Commons invoked a special privilege to FORCE the cuts through. Fortunately those in the House of Commons who had voted against them, kicked up such a fuss that it came to the public attention and the plans were abandoned. The UN’s damning report came out only days after the EU referendum but was buried by the hubub. http://www.thecanary.co/2016/06/28/buried-un-slams-tories-uk-human-rights-abuses/ As it stands, we’re facing the possibility that in addition to the Government looking for any excuse not to pay benefit to the people who need it most, they may also put them in a position where they’re unable to afford their treatment. It sucks.


    Comment by bardotbarbiturate — August 29, 2016 @ 9:06 AM

    • NHS point well taken.

      But people die here with costly medical care. Often it’s the disease itself, not malpractice. (Or else everyone would lose their licences.)

      Disabled people here are treated like non people, even though there are many efforts towards the opposite.

      And BIG news. The EEOC just named epilepsy as a disability, so we can be treated better (hmrf) and protected under disability laws.

      Not to sound like an alarmist, but I don’t think we’ll ever totally see the necessary care.

      Just like I don’t think we’ll ever see a cure for cancer.

      Illness is a business. A BIG one.


      Comment by Phylis Feiner Johnson — August 29, 2016 @ 11:12 AM

  6. A lot of the NHS’s problems are caused through poor management and the services being overstretched. It has lead to some unnecessary deaths and despite the “lessons being learned”, it keeps happening because the resources aren’t always there. It’s never been perfect but from what I can remember over the years, the biggest problems seem to have started when they started employing managers instead of medical professionals.

    Epilepsy has been named as disability here for years and we’ve been protected by various legislations. Technically I could take action against a potential employer if they unreasonably declined me a job because of my epilepsy, but what are the chances of them admitting it? In order for any of the anti-discrimination laws to be of use, you had to have disclosed your condition. I know that a lot of people consider their condition private and don’t mention it to employers, but if you don’t and you lose your job because of it, you have no legal recourse. I don’t particularly enjoy telling people such personal information but I’d rather my ass was covered!

    I agree, I don’t think we’ll ever see the necessary care. It should work wonderfully here in theory. There’s the NHS who will provide you with all your medical care, disability benefits for when you’re unable to work because of your condition, a bus pass to get you free travel on public transport, and the Access to Work Scheme to help you to work, whether it be by funding modifications in the workplace, or transport costs when public transport isn’t available or practical. It sounds fabulous on paper but in practice it’s riddled with bureaucratic nonsense which prevents it from working how it should.

    Yes, illness is very big business. I had enormous trouble with the side effects of Topamax and had to come off it because of them. I was incensed when I heard that they were trying to reduce the side effects so they could use it as a weight loss drug. It’s OK for us to suffer negative side effects, but they must get rid of them so they can flog large quantities to the general public? That’s messed up.


    Comment by bardotbarbiturate — August 29, 2016 @ 12:15 PM

    • I was on Topomaxfor epilepsy because so many medicationscaused weight gain,I took it, but my memory got worse so I got off it and my doctor put me on Keppra after a bad fall. Prior to this I was so fed up with side effects 0btained from meds for 5 years and my doctor said they would get worse and he was correct. I had absence seizure prior and this last one I fell and broke my wrist, so now I am back on meds. which I hate!


      Comment by mary levell — August 29, 2016 @ 4:07 PM

      • Mary, are you on Keppra now, or is it too expensive?


        Comment by Phylis Feiner Johnson — August 29, 2016 @ 5:14 PM

      • Yes, Topamax’s nicknames of stupamax and dopamax are very well earned! It had me doing some really weird stuff with words. I’d be typing something but when I’d look back at the screen, I’d written completely random sentences that had nothing at all to do with what I thought I was writing! There were other times when I’d write the same sentence three or four times over. It was some type of aphasia, I can’t recall exactly but it was really bizarre.

        My experience isn’t too dissimilar to your’s as I also got fed up with side effects and decided to withdraw from my meds. I only got about six weeks into my withdrawal schedule before I had to abandon it. When I went back to my consultant I asked to get rid of Keppra (which was always making me tired) and go back to lamotrigine. Whilst not perfect, lamotrigine had given me the least grief so it was the best of a bad lot for me.


        Comment by bardotbarbiturate — August 31, 2016 @ 8:01 AM

  7. The Equality Act is very similar. Two initial problems I’ve come up against at the application stage are that 1) more and more employers have a section on their forms asking how many days you were absent from your previous job due to sickness and 2) what your reasons for leaving previous jobs were. Even when those questions don’t come up, in the rare instances where I do get an interview, the question of why I have such large gaps in my employment history always comes up. I have no option but to explain the epilepsy related ones.

    When I was taking Topamax I was also taking lamotrigine. At that point I had been taking various combinations for a few years because monotherapy had been unsuccessful so when I gave Topamax the heave ho, I replaced it with Keppa. A few years down the line, my consultant decided that as I’d been taking lamotrigine for so long (at that point 13 years), it probably wasn’t having any effect so suggested I come off of it. That didn’t go particularly well at which point Zonegran was suggested. This was utter hell. It started out OK but as the dose was increased it brought on all kinds of nasties. There were days when I felt like I was in a deep pit of despair and others where I’d wake up with the overwhelming sensation that I was going to die that day. The worst ones were those where I felt there was a black, oily entity sitting inside me, trying to break out. At the time I was working full time and it was just exhausting trying to hold all of that in. I started having moments where I’d think about killing my colleagues, to the point where I was on the verge of getting up and getting a knife from the kitchen to stab them all with. The alarming thing is that in those moments, it seemed so reasonable. By this point I was terrified of what I’d do if I couldn’t hold it all back so I handed my notice in. The next 12 months were a bit of a nightmare, during which I had a brief dalliance with coming off my meds. By the end of it I’d returned to taking solely lamotrigine because it seemed the lesser of all the evils and I’ve had barely any problems since. I’m not sure that’s necessarily indicative of its efficacy, my brain’s quieter periods are those when I’m not working. All these years when the recommendation was to increase or change meds, it turns out that working less is the biggest factor in keeping my epilepsy under control. That’s all well and good for my brain, but it doesn’t pay the bills.


    Comment by bardotbarbiturate — August 31, 2016 @ 9:51 AM

    • Lamotrigine has been very good for me. No side effects, except at the beginning, it made me hyper/crazy, so I switched my schedule to 5:00PM and bedtime.

      I should mention that I’ve been taking it for 10+ years and even got me (partway) through the horrors of working in an ad agency. (My husband paid me to quit!)

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 31, 2016 @ 11:42 AM

      • I had a lot of nausea and general feeling crappy the first time with lamotrigine. I had a number of days off to cope with it and my supervisor’s way of handling the situation was to stop talking to me. That was until I had a seizure in the office. He suddenly became very sympathetic, presumably because he was now satisfied that there was a real issue and I hadn’t been making it all up to score time off.


        Comment by bardotbarbiturate — August 31, 2016 @ 2:21 PM

  8. Well, nice to know he didn’t fire you. 🙂


    Comment by Phylis Feiner Johnson — August 31, 2016 @ 4:24 PM

    • Very true, although a couple of years later, I was “declined” a pay rise because of the time I’d had off sick. Granted it was two or three days a month, but I’d always be in an hour and a half before the office officially opened, I always exceeded my weekly targets and beat all of my colleagues. They got more than their money’s worth out of me! The irony is, had I not been pushing myself so hard, my health wouldn’t have been so troublesome! Despite it being illegal, it wouldn’t have been worth taking it further as the rises they were giving were barely a pittance.


      Comment by bardotbarbiturate — September 2, 2016 @ 6:16 AM

  9. I was going to say, don’t they have discrimination suits over there?

    But yes, it’s a double edge sword. Push yourself, you get sicker.

    Don’t push, you get “punished” — and feel the better for it.

    Ain’t life grand? 😦


    Comment by Phylis Feiner Johnson — September 2, 2016 @ 9:52 AM

  10. There is the financial cost as well as that to your health if not immediately addressed.


    Comment by Jeffrey Liakos — September 23, 2016 @ 1:18 PM

  11. Yes, we bear the brunt of BIG Pharma’s profits. 😦


    Comment by Phylis Feiner Johnson — September 23, 2016 @ 1:21 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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