KarenB
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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.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC81460/
"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.
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.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC81460/
"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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