Epilepsy Talk
Epilepsy — at what cost? | July 2, 2021
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)
$1,800
Average cost per day for U.S. hospital admission of a person with epilepsy/convulsion. (Source: Healthcare cost and utilization project, 2008)
$707
Average cost of an emergency department visit. (Source: Agency for healthcare research and Quality, 2007)
$317,000
Average lifetime wages lost by men who continue to have seizures. (Source: Epilepsia, 2000)
$140,000
Average lifetime wages lost by women who continue to have seizures. (Source: Epilepsia, 2000)
86%
Increase in hospitalization among people with epilepsy who do not take medication regularly. (Source: American Academy of neurology, 2008)
$33,006
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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Resources:
http://www.webmd.com/epilepsy/news/20000330/cost-epilepsy-higher-previous-estimates
http://www.newsweek.com/epilepsy-overlooked-and-underfunded-77467
https://www.ncbi.nlm.nih.gov/books/NBK100605/
https://www.who.int/news-room/fact-sheets/detail/epilepsy
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Epilepsy Talk 
Thank you Phylis for taking us down the money track. It’s a great topic because I have found in my involvement with the Epilepsy Foundation so many people without epilepsy have heard of it, think that they know of it, and then hope WE will go away and not come out in public if we could have a seizure. You still see it in the Coffee Shops where we gather that a small percentage of people sometimes creatively eyeball us when we talk honestly about the cost of our epilepsy: the medical treatment, the maintenance medication, the unemployment, etc … Some of the expressions are as if they hoped we would just stop talking. Little do they know that they are “eavesdropping” on our group.
I once asked a participant if he knew the cost of the new drug his neurologist was putting him on. He shook his head that he did not. I then asked him if his neurologist knew the cost either. He shook his head that he did not. Oh, the ignorance cost to our medical condition! His prescription was into the thousands of dollars. Mine hardly add up to that in a year. Furthermore, my neurosurgeon once told me, “Don’t worry, no one has ever had to sell their house.”
Those fortunate enough to have a job, have found creative ways to cover their epilepsy up in order not to deal with the hassle of being an insurance risk. Even Amazon found one of our members to be an insurance risk. Some of the others who let it be known that they have epilepsy have found themselves not being given the positions that require much responsibility. We are the token disabled person in the company – the career cost of honesty. That is what happened to me.
In other words, the costs for epilepsy you list up above transfer over to real life.
Also, I have only admiration for those with the neurological disorders you list above, yet they are mostly visible in condition. We are so much of the invisible medical condition, that costs so much, and makes us “The orphan disease”.
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Comment by George Choyce — July 2, 2021 @ 11:07 AM
Comment by Phylis Feiner Johnson — July 2, 2021 @ 12:42 PM
George, epilepsy was my “dirty little secret” at work, I’m ashamed to say. I was afraid of being a “liability” so I told one person in each situation (so the others didn’t think I was croaking). Fortunately, I had auras. And an office with a door. So, when I knew I was going to have a seizure, I’d close the door and hit the floor, before the floor hit me!
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Comment by Phylis Feiner Johnson — July 2, 2021 @ 12:48 PM
The ER and hospital costs seem low. But then, this is urban California. Does the ER cost include ambulance? Which can be, I speak from experience, hefty.
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Comment by HoDo — July 2, 2021 @ 12:25 PM
Comment by Phylis Feiner Johnson — July 2, 2021 @ 12:43 PM
My ambulance trip — 5 MILES to the ER — cost $1,200. NOT covered by insurance.
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Comment by Phylis Feiner Johnson — July 2, 2021 @ 12:53 PM
No matter WHAT you need or WHEN you need it, every cost of any major need seem to be the same cost of the medicare deductible cost, and over the years that deductible of medicare never goes down but always up. Notice yourself how rides in 911 unit cost the same as an overnight stay in a hospital both close to or the same cost of the medicare deductible you have to meet every time, every year, & it does not matter if you are on medicare or not, The same rules apply to everyone, and as to what makes any sense, as to having some peace of mind about something to have to get done for you, that seems to not happen for nobody, because of insurance rules & liability like I or someone else will desire medical service 365 days a year, because we like it. Sure.
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Comment by James D — July 2, 2021 @ 2:52 PM
Good (but sad) point.
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Comment by Phylis Feiner Johnson — July 2, 2021 @ 3:05 PM
It is not just sad that more funding does not go to E, but it is disgusting too, that it is not recognized as being a disease worth spending money on. What is wrong with our society!
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Comment by Tami — July 2, 2021 @ 3:59 PM
As if losing your job & source of income because of Epilepsy is not financially crippling & difficult enough already, the 5 miles ambulance ride to the hospital around my neighborhood costing $1500.00 & the overnight stay at the hospital costing $3.5000 makes epilepsy a very expensive disease to survive & live with.
I wonder where all the taxes & medical insurance deductions I paid for most of my life went too, that I’m being penalized with financial hardships to pay for the medical hardships I did NOT ask for neither expected?
Why are people forced to risk losing their homes for medical expenses they can NOT afford, because of their medical hardships & financial handicaps?
How is it justified to milk the victims of medical hardships, when they are down & out?
Where’s the safety network when you need it the most?
Epilepsy has been around since biblical times.
Therefore, how’s underfunding Epilepsy treatment justified to funding strokes, brain cancer, Alzheimer’s, Parkinson’s,,, treatments?
The whole complicated paradox is certainly mind boggling for those of us who’re still looking for remedy to our medical hardships & financial crisis.
Gerrie
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Comment by Gerrie — July 2, 2021 @ 5:00 PM
It seems the very funds we pay into, defraud us. Plus the research, development, pharmaceutical companies and charities couldn’t care less.
What do we have to do to garner their attention? Our statistics of frequency are already staggering.
We need lobbyists, a spokesperson, an aggressive campaign to stand up and get counted!
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Comment by Phylis Feiner Johnson — July 2, 2021 @ 5:36 PM
It really does beg the question that if anyone in “the research, development, pharmaceutical companies, and charities” ever had a seizure whether the response would be different. Of course, there must be a very, very, very small percentage who have experienced the absolutely absurdity of a seizure: the staring off into nothingness for a few seconds or longer, the acting totally out of context to the situation, the finding yourself handcuffed to a stretcher or arrested because they think you’re high on drugs, the finding yourself on the floor with a bitten up and bleeding tongue and a blackened eye and a loss of your bowels and/or bladder (me); the list could go on and on based just our members experiences. When you give a presentation on epilepsy to some charity group whose members continue to just chew on their rubber chicken during your presentation, then don’t ask ANY questions, and you simply leave with no one noticing, then something is wrong – very wrong. I’m just finally having a colleague take me on as a volunteer. No one else will have me. Not one will have me on staff based on the stigma of my condition. As a volunteer! No money! Yes, there is a cost. There is a real, tangible, measurable cost in dollars and cents to our conditions. Phylis, you have struck a nerve. Hopefully, on some level, it will be felt by all of us and we can go some where from here that betters the medical condition of the over three million of us who have epilepsy in the United States and the over 50 million worldwide. That’s quite a lot.
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Comment by George Choyce — July 3, 2021 @ 10:36 AM
As long as people with epilepsy are thought of as morally flawed (like drug addicts), I think research will be limited. It’s education at all levels that’s needed. IMNSHO.
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Comment by HoDo — July 3, 2021 @ 11:41 AM
Reblogged this on Disablities & Mental Health Issues.
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Comment by Kenneth — July 3, 2021 @ 9:33 AM
This goes out to all of you🤗
Boy do I feel your pain!! Here is one that no one mentioned and has now happened to me twice! I have been in the position of finding a new neurologist a few times and that is not fun at all. They ALL have very different specialties and epilepsy may or may not be one of them. In fact, they may claim to say they are NOT accepting any new or epilepsy patients! However, they still treat patients with migraines and headache issues…correct me if I am wrong but aren’t these conditions also connected to epilepsy?? I even had one supposedly very good Dr claim a migraine aura I have would not trigger a seizure. Really? I politely said,”Hi, let me introduce myself to you. I must be an enigma to you because it happens to me.” I walked out of his office in tears and never returned. Idiot!
I have relocated to a new state recently with referrals and I cannot begin to explain the number of Drs (neurologists) who do not accept any insurance ( how nice for them!) or it explicitly says not accepting any epilepsy patients. I would love to know why but I think we all do, don’t we?
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Comment by Janet R — July 3, 2021 @ 7:17 PM
Janet, if it will be of any help at all, below is a compilation by website forum members who have had positive personal experiences with docs over the years.
This list is based on recommendations and, of course, is purely subjective. But it might be helpful for anyone looking for a good Neurologist…Epileptologist…Neurosurgeon…or Pediatric Doctor.
NOTE: The National Association of Epilepsy Centers (NAEC) provides a directory of specialized epilepsy centers in the U.S. along with other useful information about epilepsy. http://www.naec-epilepsy.org/
Another good resource for finding an epileptologist or neurologist is the American Epilepsy Society (AES). They also have a “finder” where you put in your zip code or state. http://Www.aesnet.org.
2021 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors https://epilepsytalk.com/2021/01/04/2021-patient-recommendations-for-top-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/
I hope this helps.
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Comment by Phylis Feiner Johnson — July 3, 2021 @ 10:26 PM
Thank you so much Phylis for this compilation of names. You are truly a God send! If think there was a listing in the FB site but am no longer on FB.
As a special Ed teacher and again as an aide, I tried to call attention to children who were actively having seizures and went thru the proper chain of command. I was met with arrogance and the political run around of who are you to say you think this might be a seizure? The can of worms that comes out by people who are so intimidated by the amount of knowledge that one person might own over them that may intimidate their weak ego is incredible so they need to squash you (me) like a bug. So of course I never saw a seizure when I did indeed on more than one occasion. As long as they don’t have to deal with the confused, difficult, autistic child and I do it’s OK. If he appears fine to them it’s OK too. But he wasn’t fine and as the person who was with him every single day one would think my opinion would matter but I had no say. So I finally said to myself how am I helping this child? Instead I saw myself being set up for perhaps something bigger like being held accountable for anything that happened to him under my watch and decided to resign and did just that. I let the arrogant, pinhead psychologist take responsibility. He didn’t hesitate to very loudly explain his credentials to me. I went back to education as an aide because I was retired and didn’t want to run a class anymore. I quietly slipped him my resume one day and he stopped talking to me. He was a bully and had no clue how to be a team player. I’m still glad I quit!!
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Comment by Janet R. — July 3, 2021 @ 11:59 PM
What a profound loss they set themselves up for.
But, not to sound trite, you can’t help those who don’t want to be helped.
And arrogance is its own reward.
P.S. The listing of best docs on Facebook was mine! 🙂
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Comment by Phylis Feiner Johnson — July 4, 2021 @ 9:45 AM
I should have known that list on FB was yours!! Awesome job Phylis! I referred that list to many.
I tried very hard to organize an educational program within the district I worked for at the time for epilepsy because they do exist. I spoke to several people and likened it to the program for Autism. There is epilepsy in Autism too and it often seems like a spectrum disorder all its own, just my opinion. No one would listen. Too many egos, and too many people in a very large district with political ambitions…
It left a very bad taste in my mouth I’m sorry to say, but I tried hard.
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Comment by Janet R. — July 4, 2021 @ 1:01 PM
Well, here you go Janet:
Epilepsy and Autism https://epilepsytalk.com/2013/10/06/epilepsy-and-autism/
And I’ve got to say. Organizing an Epilepsy Support Group was an uphill struggle. Until The Foundation found out what I was trying to do.
They took it from there. Found a hospital to meet, an epileptologist to mediate and it’s a wonderful source of information and support.
I feel proud that the support group was my baby. Even though it was not me who formally launched it. Without the resources of the Foundation, it would have just been a frustrating ambition. So I can understand how you feel.
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Comment by Phylis Feiner Johnson — July 4, 2021 @ 1:58 PM
Unfortunately Phylis what I found is that too many people want all the glory for themselves and that isn’t what I was trying to do at all. They also don’t know how to spell either!!! There is no “ I “ in TEAM…the best results come from a team effort, anything else falls apart and becomes a mess. Thank goodness your voice was able to get something good to happen with the Foundation. I applaud your efforts!!
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Comment by Janet R. — July 5, 2021 @ 5:51 PM
Thank you there’s a lot of ignorance out there about epilepsy, and not enough information about how to deal with it especially when it’s not a condition that be really prevented when one has it since a child like like cholesterol or high bp there’s basically nothing for epilepsy I don’t even here even holistic professional hit the topic.
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Comment by elena — July 5, 2021 @ 11:51 AM
Well Elena, this article may interest you:
Epilepsy And Complementary Medicine… https://epilepsytalk.com/2020/06/11/epilepsy-and-complementary-medicine/
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Comment by Phylis Feiner Johnson — July 5, 2021 @ 12:04 PM
Deloittes in Australia wrote a report on the economic burden around epilepsy (2019-2020) and discovered that the costs per annum is about $12.3 billion.
I thoroughly enjoy reading your articles. You are a breath of fresh air!!
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Comment by Maria Lowe — July 5, 2021 @ 9:43 PM
Maria, here’s a sobering report:
Where’s The Funding? Epilepsy As An Orphan https://epilepsytalk.com/2020/08/19/wheres-the-funding-epilepsy-as-an-orphan/
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Comment by Phylis Feiner Johnson — July 6, 2021 @ 8:09 AM
And Maria, here’s the most recent study of epilepsy, although I’m sure the numbers have increased…
2012 Most Recent Epilepsy Statistics https://epilepsytalk.com/2012/06/27/2012-most-recent-epilepsy-statistics/
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Comment by Phylis Feiner Johnson — July 6, 2021 @ 8:16 AM