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How many of us want or use generic AEDs?some dont think theres a difference,but there wrong.soon we all may need them!

Thu, 09/13/2007 - 09:54
Topic: Advocate for Epilepsy
The following is a transcript of a report by medical editor Marilyn Brooks that first aired Sept. 12, 2007, on WTAE Channel 4 Action News at 5 p.m. -------------------------------------------------------------------------------- There is important news surfacing about generic drugs. They drugs cost less, but some brands aren't as effective, which is especially true for people with epilepsy. The issue is so big that the Epilepsy Foundation has been campaigning for bills in state legislatures across the country. They want to make it tougher for pharmacists to switch epilepsy patients from brand name drugs to inexpensive generics. Neurological testing has been a part of Scott Prosser's life since he developed encephalitis at age 8. It left him with four brain lesions that generate epileptic seizures. Three brand name anti-seizure drugs kept them under control until one went generic. "The insurance company said they changed their reimbursement structure, and they say that the generic is an OK replacement for the Clonipin," said Scott's mother, Ruth Prosser. That's not quite true though, and patients like Scott are proof. After unknowingly taking the generic, Scott's seizures got worse and more frequent. Many patients experience the same reaction with generic brands. Their difficulty stems directly from their anti-seizure medications, not the brand name that physicians order, rather the generic versions the insurance companies automatically switch them to. All patients are led to believe that generics are exactly the same as the brand name, but the truth of the matter is that they are not and therein lies danger. "If you're seizure-free for more than six months on a brand name medicine and you get switched to a generic medicine that may change your level, the concentration in your blood stream that may put you at risk and again," said one doctor. If it happens at the wrong time, it can be catastrophic. The catastrophe runs the gamut from drowning in bathtubs to having car accidents to falling down stairs. Doctors said there are several reasons generics don't always work, including the fact that generics don't absorb as well as brand name drugs. Doctors said the active ingredient might be 80 to 120 percent of the brand name, so patients can get 20 percent more or 20 percent less medicine in their blood stream. Doctors also said not all generics are the same. Pennsylvania House Bill 98 might help, though. It says that brand names can't be substituted with a generic epilepsy medication without prior notification and a signed informed consent of doctor and patient. The bill was sent to Committee in January, but there has been no word on it since. Without Clonipin, Scott has seizures every eight hours, his mother said. She said until the drug is covered by the insurance company again, she has to shell out $235 a month for the brand name.

Comments

re: generic drugs

Submitted by hannahrie on Tue, 2008-07-01 - 13:41

Our pharmacy gave my husband a generic ethosuximide.  We didn't even notice at first,.  But within a couple of days, he started having break-through seizures.  When we looked at the bottle closely, we realized it was generic and took it back to the pharmacy.  The name-brand are a bigger co-pay by about $15, so not TOO BAD.  But we have to tell them every time to check to be sure they still have it written that he CANNOT have any generics.

Our Stanford epileptologist said that, while for some people it may not matter, it's better to get name-brand if you can, because once generics start coming into the picture, the inactive ingredients may be a different mix than name-brand (read: can be metabolized differently, having less potent or different effects) and typically aren't studied as closely as the name-brand first-release are! Be aware!

 

Our pharmacy gave my husband a generic ethosuximide.  We didn't even notice at first,.  But within a couple of days, he started having break-through seizures.  When we looked at the bottle closely, we realized it was generic and took it back to the pharmacy.  The name-brand are a bigger co-pay by about $15, so not TOO BAD.  But we have to tell them every time to check to be sure they still have it written that he CANNOT have any generics.

Our Stanford epileptologist said that, while for some people it may not matter, it's better to get name-brand if you can, because once generics start coming into the picture, the inactive ingredients may be a different mix than name-brand (read: can be metabolized differently, having less potent or different effects) and typically aren't studied as closely as the name-brand first-release are! Be aware!

 

insurance companies are trying to rob us

Submitted by jenny81 on Mon, 2010-04-26 - 11:36

I am currently on Depakote ER. They came out with a generic i decided to try it to save money. i have Caremark insurance through my work & must order my maitnence meds 3 months at a time. i took the meds for about a little over 6 months.  i had major migranes, i started losing my hair, the shakiness got worse & my muscle spasms were more noticable. i saw my neurologist & my bloodwork came back showing my levels were down like when i was having seizures before. she wrote its MEDICALLY NECESSARY for me to take the brand name. my insurance says i must pay my copay, plus the difference between the generic & brandname making my total to  $318 instead of $87.50. The insurance company told me to send in an appeal from the doctor & they didnt see a reason why it wouldnt be reversed. they denied me & now i have to fight just to get medication so i can function & be ok. what right do these insurance companies have to say what a doctor deems necessary for a patient is wrong. i dont have the money to pay over $300 for medication becuase the insurance company feels they have the right to override my doctor. please let me know if any of you are going through something similar. i am scared and know i have a big fight ahead of me

I am currently on Depakote ER. They came out with a generic i decided to try it to save money. i have Caremark insurance through my work & must order my maitnence meds 3 months at a time. i took the meds for about a little over 6 months.  i had major migranes, i started losing my hair, the shakiness got worse & my muscle spasms were more noticable. i saw my neurologist & my bloodwork came back showing my levels were down like when i was having seizures before. she wrote its MEDICALLY NECESSARY for me to take the brand name. my insurance says i must pay my copay, plus the difference between the generic & brandname making my total to  $318 instead of $87.50. The insurance company told me to send in an appeal from the doctor & they didnt see a reason why it wouldnt be reversed. they denied me & now i have to fight just to get medication so i can function & be ok. what right do these insurance companies have to say what a doctor deems necessary for a patient is wrong. i dont have the money to pay over $300 for medication becuase the insurance company feels they have the right to override my doctor. please let me know if any of you are going through something similar. i am scared and know i have a big fight ahead of me

Re: How many of us want or use generic AEDs?

Submitted by phylisfjohnson on Mon, 2010-04-26 - 14:25

IMPORTANT NEWS FROM THE AMERICAN ACADEMY OF NEUROLOGY OF NEUROLOGY

In the New York Times http://graphics8.nytimes.com/package…angenerics.pdf  http://www.nytimes.com/2009/12/19/health/19patient.html?emc=eta1
The American Academy of Neurology reports: “The AAN opposes generic substitution of anticonvulsant drugs for the treatment of epilepsy without the attending physician’s approval. The FDA has allowed for significant differences between name-brand and generic drugs. This variation can be highly problematic for patients with epilepsy. Even minor differences in the composition of generic and name-brand anticonvulsant drugs for the treatment of epilepsy can result in breakthrough seizures.”

Please read the article, it’s from those who know best and truly have OUR interests at heart!      Phylis Feiner Johnson www.epilepsytalk.com

 

IMPORTANT NEWS FROM THE AMERICAN ACADEMY OF NEUROLOGY OF NEUROLOGY

In the New York Times http://graphics8.nytimes.com/package…angenerics.pdf  http://www.nytimes.com/2009/12/19/health/19patient.html?emc=eta1
The American Academy of Neurology reports: “The AAN opposes generic substitution of anticonvulsant drugs for the treatment of epilepsy without the attending physician’s approval. The FDA has allowed for significant differences between name-brand and generic drugs. This variation can be highly problematic for patients with epilepsy. Even minor differences in the composition of generic and name-brand anticonvulsant drugs for the treatment of epilepsy can result in breakthrough seizures.”

Please read the article, it’s from those who know best and truly have OUR interests at heart!      Phylis Feiner Johnson www.epilepsytalk.com

 

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