[Research] Who pays for epilepsy research? And why?

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OK, folks, scuze me while I hop up on my soapbox for a minute:soap:

Research into epilepsy therapy is largely funded (at least 70%) by private corporations (i.e. drug companies). A small amount is funded by government and charitable institutions, and that research is generally carried out in medical university settings.

The private corporations (drug companies) are saving $$ by distributing 60% of research grants to CRO's (private, non-academic research groups) rather than academic institutions.

This article in PMC, entitled "Sponsorship, authorship and accountability" by a number of editors of medical journals questions the objectivity of such research.


"the use of clinical trials primarily for marketing, in our view, makes a mockery of clinical investigation"

"Many clinical trials are performed to facilitate regulatory approval of a device or drug rather than to test a specific novel scientific hypothesis."

"corporate sponsors have been able to dictate the terms of participation in the trial, terms that are not always in the best interests of academic investigators, the study participants or the advancement of science generally"

"the results of the finished trial may be buried rather than published if they are unfavourable to the sponsor's product."

For me, this issue brings up some questions:

1) Can information on efficacy and safety and side effects on the newer AED's really be trusted? Do they really work better than the old ones,and are they really safer? Or were important research findings squelched?

2) If at least 70% of epilespy research is profit-driven by the drug companies, does that mean a scarcity of research into unprofitable or only mildly profitable (from the drug industry standpoint) epilepsy treatments such as the Ketogenic diet and other nutritional approaches, or biofeedback, or even drugs that don't carry a high price tag?

3) How is this affecting OUR quality of life and seizure freedom? If the vast majority of epilepsy research is being funded by corporations whose main objective is to make money -- are we being sold a bill of goods? Are we having expensive pills pushed down our throat by Big Money that cause liver damage, anxiety, depression, fatal rashes, bone marrow disease, etc. when there might be more gentler cures to epilepsy that are just as efficacious (but we don't really KNOW if they're just as efficacious because who's going to fund a study on an inexpensive therapy on say...vitamins)?

4) And how is all this affecting the decisions that our neurologists and epileptologists are making for our care? The big money drug companies not only fund the majority of epilepsy research, but they also have the funding to flood the doctor's inbox with promo material and drug samples, and to fund "educational conferences" for the doctors where their products are promoted as well. Meanwhile, non-drug treatments, such as the Ketogenic diet or biofeedback, have to depend on the piddly government grants out there for research funding, and have no major corporations singing their praises.

5) It seems we're left to our own devices to figure out what else is out there in terms of epilepsy treatment, and to turn ourselves into individual "case studies" of treatment. And...let's say we find something that works for us...lets say, for instance, you start taking Omega 3, and boom! No more seizures! Is that going to get written up in a medical journal? At the most, you'll mention it to your neurologist, who will probably raise his eyebrows, and maybe make a note in his records, and maybe, just maybe, might mention it to another patient, but then again probably not.
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This is why it's important to get as much information about the study as possible. A good study can give us good information but Details like whether there was a control used to compare the results to, how many people (or mice) were involved as well as many other things can give fake results.

There are many ways to twist results. I like how this scientist explains how to dissect a study. It's long but it's helpful.

Anatomy of a Study: A Dissection Guide Pt. 1

Anatomy of a Study: A Dissection Guide (part 2)
Absolutely...I know I've read some studies, and then wondered..."well, how did that study prove THAT?"

But there's also the issue of studies that aren't being done, that should be done, because if a particular treatment DOES work, there's no profit for anyone (other than the patient).

And there's also the studies which the drug companies have pulled from publication because the results don't support their product...that's especially scary.
I know.... IMO pharmaceutical & supplement companies need to be monitored very strictly.
This is directly related to the issue that I harp on from time to time regarding the state of the medical (research) industry. There is no profit motive and therefore no real funding for research into diets, neurofeedback and other alternative potential therapies. I think there is a mine "mind" field of potentially patient empowering research that could be done if we had an economic model that supported it.
Hm... Interesting topic. I'm currently studying for my master's in health care administration. I have no idea if I'll ever get to work with any type of research institutions (which I would love to do, by the way), but this is part of why I'm going into the field... To actually be in a field where MAYBE I can make a difference in how health issues are managed. I majored in psychology as my undergrad degree, and had to take a couple of research methods classes where we discussed how easy it is to skew research results with a change in wording. I would love to be able to head a non-profit medical research company or charity organization and help stop this type of thing.
Why isnt there more government funding they do for almost every other disease and why is getting others to help raise awareness so dam hard.sorry for my language
Why isnt there more government funding they do for almost every other disease and why is getting others to help raise awareness so dam hard.sorry for my language

That is a very good question. Before I ever had seizure, I never thought the disease was really serious. I think a stigma still exists for seizures, regardless if they are epileptic or not, they are still horrible to deal with. More people really do need to push the awareness to the public. I wish I knew how, I would pour tons of time into that cause.

Ahem :soap:

The drug companies make so much profit it's disturbing. This would be great, if the drugs were actually as wonderful as they let on. But we all have had to take one of the drugs, some of them are SUPER expensive, and they sure don't have that kind of bang for the buck. The further you delve into the politics of how the drugs are made, the trials, etc etc. It gets pretty sad. Seems like the research is thrown to the back burner, and profit is the main focus. If they could just cure epilepsy I am sure they would, but the profit they would lose would be pretty significant. Just hoping someone will come along and CURE this disease. Even if it is not in my life time, no one should have to deal with any kind of seizure.
Government funding covers about 30% of ALL medical research -- then, that gets divied up to various research for various diseases.

So...actually it's unlikely that 30% of epilepsy research is coming from govt. funding (USA govt, that is). I suspect is much lower.

I believe the government probably assigns most of the grants to research that falls into 2 categories:

1) Diseases that are fatal, and affect the largest percentage of the population -- such as cardiovascular, which kills around 777,000 each year ( got 2 billion in 2012 from NIH)

2) Diseases that are fatal and have strong advocacy groups -- such as AIDS, which kills around 10,000 a year ( got 3.2 billion in research funds from NIH in 2012)


According to the research I've been able to dredge up, I don't think the US govt allocated ANY funding to epilepsy research this year. Perhaps because it's not usually a fatal disease, AND I don't know of any advocacy groups for epilepsy research.

I strongly suspect that the only research being done on epilepsy this year in the US is by the drug companies, except perhaps small studies by medical centers that don't require a lot of funding.
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That is pretty sad if I the US government didn't put any money towards research. Otherwise we will keep repeating the poor process in certain aspects of diagnosis and treatment. Well, if no major advocacy groups exist in the US, maybe we should try to find a way to jump start one. That is probably going to take a ton of money, but it's something to think about.
That is such a poignant point and thanks for the info. I find it refreshing.
some NON-drug company sponsors of epilepsy research

At the CURE site, new study just released last week on using amino acids in the treatment of a certain type of autism that is accompanied by epilepsy. (I posted it here in the Library). Anyway, I'm starting to take note of who is funding epilepsy research, so here's who funded this project. Looks like a combo of government and private foundations.

Funding for this research came, in part, from the National Institutes of Health (grants P1HD070494, R01NS048453, P30NS047101, RC2MH089956, K08MH087639, T32MH018268, U54HG003067), the Center for Inherited Disease Research, the Simons Foundation Research Initiative, Veterans Administration Merit Award, the German Research Foundation, the American Academy of Child and Adolescent Psychiatry Pilot Research Award/Elaine Schlosser Lewis Fund and the American Psychiatric Association/Lilly Research Fellowship.
The Epilepsy Therapy Project (epilepsy.com) is another group funding some epilepsy research. The EFA also has a grant system for funding research (last I checked anyway).

I looked into their grant programs a while back when I was motivated to get a large scale neurofeedback study going. In order to qualify for most of the available research grants, your proposal needs to establish a commercial ROI (should the study prove successful). There was only one grant program (by CURE) that did not have such a commercial requirement.
The Epilepsy Therapy Project (founded by a group of parents, physicians & researchers) has just merged with the Epilepsy Foundation
Thanks to tip from Nakamova -- epilepsy does have an advocacy group

Citizens United for Research in Epilepsy (CURE)
223 W. Erie
Suite 2 SW
Chicago, IL 60654
Tel: 312-255-1801 800-765-7118
Fax: 312-255-1809

CURE is managed by the Axelrod family. David Axelrod is an advisor to President Obama and his daughter has epilepsy. I believe his wife Susan is a major player in the CURE advocacy group.
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BTW, I've always been angry about Epilepsy being underfunded. You can't turn on the TV without seeing some effort to raise money and awareness for breast cancer (which obviously is a serious disease and deserves attention), but what most people don't realize is that epilepsy kills as many or more annually than does breast cancer, yet receives no attention and little funding.

I've long suspected that the main reason we don't have more of an effort to fund cures for epilepsy is that no one has properly figured out how to profit from it yet.
Does it kills as many as breast cancer? I suppose it would be hard to find accurate data on that, because a lot of seizure deaths are due to drowning or a fall or a car accident caused by the seizure -- something along that line -- and so the cause of death might be listed as something other than the seizure itself.

And then there's the suicides brought on by AEDs along with depression due to loss of quality of life.

But even without drownings and falls and other accidents and suicides, I know that epilepsy itself can be a killer. I have sat at my son's bedside when he was in ICU, and watched his heartrate go up to 200 and his oxygen sat rate go down to 50 or 60 (even when on supplemental oxygen) and you can't just go on, day after day, year after year, without that taking its toll, even if it doesn't kill immediately.

And its such a damnable disease, because for 30 or 40% of those who suffer, there's really no cure.
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