The Mudcat Café TM
Thread #122346   Message #2682677
Posted By: Desred
18-Jul-09 - 04:32 AM
Thread Name: BS: Epilepsy generic drugs e-petition
Subject: BS: Epilepsy generic drugs e-petition
Can you help us?

We have an adult autistic son,Alan, who suffers considerably from epilepsy.

2 weeks ago he had 20 seizures in a few days and was admitted twice into hospital (he is fine now).

In The QE hospital, Birmingham, they tried to prescribe him generic epilepsy tablets instead of letting him have the named drugs & my wife,Margaret, had to fight to get them to let her give him his prescribed tablets.

This can have serious consequences (see below) – it has been medically proved that the slight differences in the generic versions can have a drastic effect on patients with epilepsy, like Alan. We appreciate that this is to save money but it may not save lives, such as Alan's.

So would you consider helping epileptics like Alan by signing the e-petition (link below) and passing this on to all your friends/family/contacts (and ask them to do the same)? I am sure that you will have many contacts through the folk world so I am hoping you would not mind alerting them to this and asking for their help.

Many thanks

Des & Margaret
Black Diamond Folk Club

The petition
"We the undersigned petition the Prime Minister to ensure an exemption for epilepsy from the new generic prescribing proposals, on the grounds that the active ingredients in different brands of anti-epileptic medication can legally vary by up to 45% and that unnecessarily switching between versions can have a profound negative effect on a person's health and quality of life, can cause breakthrough seizures, worsening of seizures or increased side effects, leading to loss of employment, driving licence, educational opportunity, serious injury and, in the most severe cases, death, and that consistent effective treatment should not be altered on questionable cost grounds."

To sign go to


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.

Generic drugs have to follow 'bioequivalence' rules. These allow the amount of active ingredients to vary between 80 and 125 per cent. Being given a different version may mean receiving a different dose. 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.