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BS: Epilepsy generic drugs e-petition

Desred 18 Jul 09 - 04:32 AM
GUEST,Girl Friday 18 Jul 09 - 04:11 PM
SINSULL 19 Jul 09 - 08:52 AM
SINSULL 19 Jul 09 - 09:01 AM
GUEST 19 Jul 09 - 03:01 PM
Desred 21 Jul 09 - 03:36 AM
Desred 22 Jul 09 - 06:52 AM
GUEST,S.M.Rowland 25 Jul 09 - 01:58 PM

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Subject: BS: Epilepsy generic drugs e-petition
From: Desred
Date: 18 Jul 09 - 04:32 AM

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 http://petitions.number10.gov.uk/epilepsygenerics/

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.

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.


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Subject: RE: BS: Epilepsy generic drugs e-petition
From: GUEST,Girl Friday
Date: 18 Jul 09 - 04:11 PM

I have been taking capsules called Epanutin for 45 years. Since the law changed requiring prescriptions to be generic they are called phenytoin sodium capsules. They are still the same tablets because there is no generic substitute. Hospitals only stock generics, so I was given the same dosage in tablet form. Luckily I do not suffer from seizures these days and it made no difference. Your son's case is evidently different and I will gladly sign the petition


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Subject: RE: BS: Epilepsy generic drugs e-petition
From: SINSULL
Date: 19 Jul 09 - 08:52 AM

There was an article in the New York Times recently about this problem. For some with epilepsy or even severe high blood pressure, the generics (which despite the hype ar NOT always matches for the name drug)can be fatal.
Here in the States your doctor can state on the prescription NO SUBSTITUTIONS.
Good luck with your petition.


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Subject: RE: BS: Epilepsy generic drugs e-petition
From: SINSULL
Date: 19 Jul 09 - 09:01 AM

I can't find the original article but here is some info. This piece is more about the quality of generics. The article I read was about the use of different active ingredients in the genrics which IN MOST PEOPLE will produce the same results.

http://www.ktvu.com/health/16984010/detail.html


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Subject: RE: BS: Epilepsy generic drugs e-petition
From: GUEST
Date: 19 Jul 09 - 03:01 PM

Thanks for the article. Very useful. Our son's epilepsy consultant, unfortunately on leave when our son was in hospital recently, is very clear that it can cause considerable difficulties to a number of sufferers and this is borne out on epilepsy websites.

Thank you,too, for supporting the e-petition. Epilepsy sufferers with special needs, such as our son, cannot fight their own battles so we have to do all we can to protect them.

Des


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Subject: RE: BS: Epilepsy generic drugs e-petition
From: Desred
Date: 21 Jul 09 - 03:36 AM

The numbers signing the e-petition are going well - already over 3400 in just 4 days. Whilst the petition is mainly to help those with epilepsy the NHS decision regarding prescribing only generic drugs could affect many others - including you or a member of your family. Please think about signing up.

Epilepsy petition

Many thanks

Des


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Subject: RE: BS: Epilepsy generic drugs e-petition
From: Desred
Date: 22 Jul 09 - 06:52 AM

We are now have over 4000 signatures with many folk friends amongst them. Can you consider signing up, please?


Epilepsy petition


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Subject: RE: BS: Epilepsy generic drugs e-petition
From: GUEST,S.M.Rowland
Date: 25 Jul 09 - 01:58 PM

Only someone who has epilepsy knows how safe you feels when you find a drug that works for you, and how it will upset you when it is changed.


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