Updated 2 October 2009: A big thanks to everyone who has signed the e-Petition, or campaigned in other ways (such as writing to their MP) on the issue of automatic generic substitution.
The e-Petition has now closed, managing to attract 12,158 signatures.
We are pleased to let you know, in part as a result of the petition, that the government has told us that they will be launching a formal consultation on the subject "in the autumn". This will give us, and other affected groups, an opportunity to formally register our concerns and put forward our representations.
Epilepsy Action will contribute, and we will let you know if there is an opportunity for individuals to do the same. Again, many thanks to everyone who has joined us in this campaign.
As some of you may already be aware, from January 2010 new dispensing regulations will be in place throughout the UK. Pharmacists will be expected to change the brand of drug named on a prescription and replace it with a different, generic brand. This is as part of the Department of Health’s 2009 Pharmaceutical Price Regulation Scheme agreement.
This agreement will make 'generic substitution' legal. This means a pharmacist can (and will) replace more expensive branded versions of drugs for cheaper generic versions. They will not have to consult with either the patient or the doctor who wrote the prescription.
Epilepsy Action is concerned about this. Unless epilepsy is excluded from this legislation it could lead to thousands of people with epilepsy having their medication switched, for purely financial reasons. There will be no consideration of how this will affect them, or their epilepsy.
Background
From January 2010 pharmacists will be expected to change the drug named on a prescription and replace it with a different generic. This is against the National Institute for Health and Clinical Excellence (NICE) guidelines for epilepsy. NICE provide guidance on the treatment and care of people with epilepsy. There is also significant evidence from doctors and patients that some people with epilepsy have difficulties when changed between different versions of the same drug.
It is recommended that people with epilepsy, taking anti-epileptic drugs (AEDs), need to maintain very precise levels of active ingredients in the bloodstream.
A doctor with a special interest in epilepsy should change someone’s epilepsy medication, not a pharmacist or health economist. People with epilepsy should receive the same version of their AED unless their doctor prescribes otherwise for medical not financial reasons.
We have written to the Department of Health expressing our concerns.
Petition
We are campaigning to make AEDs exempt from the rules of generic substitution.
As part of this, Epilepsy Action (as part of the Joint Epilepsy Council) ran a e-Petition on the Downing Street website. This was an online petition to the Prime Minister asking him to take action in this area. With enough signatures the government is committed to respond to everyone who signs about the issues raised.
You can view the petition at http://petitions.number10.gov.uk/epilepsygenerics
- For more information about these issues, see our information on consistency of supply or call the helpline on 0808 800 5050.
- View our Consistency of Supply fact page
- If you have been affected by having different versions of your AEDs dispensed please tell us your story. Leave a comment on this page or write to us at Epilepsy Action, New Anstey House, Gate Way Drive, Yeadon, Leeds, LS19 7XY.
Comments: read the 2 comments or add yours
Comments
I have had 2 insidents with generic drugs.
he frist one was when Dilantin came out in generic. I tried it. Didn't bother me. It was cheaper and I had no problem with it.
THe druggest told me it isn't the pill it is the manufacturer of the generic pill. Not every gen. pill ahs the same fillers in them. THe same amount not the same kind. SOme of the fillers don't agree always with other meds.
I had a bout with my Mysoline. I was taking generic brand and the drug store had to change manufactureres because the other brand was too expensive.
So I said ok. I figured a pill is a pill. I tokk them for maybe a week. I had a seizure.
I am not saying that it was the pills fault. BUT it was a coincidence. So the drug store now keeps the other pill I can take in stock.
Now I have no prescrip. coverage so it probably is easier for me to get whatever make of pill I want.
I do know I have the name of the manufacturers name of the generic brand I can take on hand.
When I was in the hospital. THey were giving me Mysolince in the generic form. I thought that was strange. I figured the hospital would give name brand pills.
I don't know if this si what you wanted to hear or not,
Hi Guys,
you are all idiots. To think that someone would change medication so as just to make a profit is bordering on libelous. The pharmacists first concern is for the safety of the patient, it doesn't even make economical sense to kill them off by giving them inferior drugs does it??
It is the drug companies that like to encourage the belief that their product is the best and if you take anything else it isn't as effective.
Yes there are some products with different absorption and distribution rates but these are well document and never substituted - eg Priadel or Adizem. The problem comes when people start believing that the colour, or taste or even shape of the product has an effect on their care. Most of the anecdotal evidence about the drug not working is the placebo effect in reverse. Give me a patient who says "the white ones have no effect - only the orange ones work" and tell them to take 20 white and see what happens. You'll soon have them in the ER and do you thing the doctors will be saying "DAMMIT......What colour were they?? - We can't treat until we know how much inert lactose was in the pill"
I remember a story about a woman who complained her new capsules didn't work as well as the old ones. The pharmacist - sick of nodding like a dog and agreeing even though it goes against all scientific knowledge said " let me see how you take them", she popped one in her mouth and he shook his head....."have you always taken them red side first??", "yes" she said "Well then, there's your problem....make sure its the grey side first" and off she went and they worked perfectly from that day on.
So think about when you want your expensive brands - sometimes 20-30 times more expensive than the exactly the same, extensively tested in double blind randomised trials (which the pharmacy probably make a slightly better markup on) - think about the amount of money being wasted because of someones irrational beliefs.
Then write to the paper about the lack of hospital beds and go buy your vegetables in LIDL because they're cheaper.
Ralph