Automatic substitution of anti-epileptic drugs
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updated 31 March 2010
Epilepsy Action has been campaigning for all anti-epileptic drugs (AEDs) to be excluded from the government’s generic substitution proposals.
This is because we believe brand switching for some people with epilepsy has caused breakthrough seizures, worsening of their seizure control or worsening of side-effects.
Last year, over 12,000 people signed a Number 10 petition calling for AEDs to be exempt from the proposals, demonstrating the importance of this issue for people with epilepsy. You can see the government's response on the Number 10 website.
On 5 January 2010, the UK Department of Health launched its consultation into introducing generic substitution in England, called “The proposals to implement 'generic substitution' in primary care, further to the Pharmaceutical Price Regulation Scheme (PPRS) 2009.”
The consultation closed on 30 March 2010. We are now awaiting the government’s response to the consultation, and their final proposals. We expect these to be published in the summer.
Epilepsy Action would like to thank all its members, friends and supporters who took the time to support this campaign. Particularly those who;
- contacted the organisation to show support.
- sent in their experiences of drug switching.
- wrote to their politician to register their concern.
- took part in our media work to raise awareness of the changes.
- signed the e-petition and encouraged others to sign.
- attended a consultation event.
- sent comments to the consultation team.
We hope that the Department of Health act on our concerns, and those of the wider epilepsy community, and make sure there is a permanent exclusion for all anti-epileptic drugs.
However the campaign may not be over. If the final proposal does not protect treatment for people with epilepsy, we will do our best to stop the scheme being introduced.
Information on the government’s final proposals for England will be published on this page when they are announced.
If you have comments to make, or would like to tell us your experiences, please put them in writing and send them to Pete Scott, campaigns and policy officer. Pete can be contacted by emailing pscott@epilepsy.org.uk or writing to him at New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY.
Scotland, Wales and Northern Ireland
The Ministers of Health in Scotland, Wales and Northern Ireland have told Epilepsy Action that they plan to consult on introducing generic substitution. These consultations will consider the outcome of the consultation in England, and are expected later in 2010.
Epilepsy Action will again campaign for all anti-epileptic drugs to be excluded from any generic substitution proposals. We will update our website when any developments happen.
Generic substitution timeline
- December 2008 – The UK government announces plans to introduce ‘generic substitution’ as part of the 2009 Pharmaceutical Price Regulation Scheme.
- February 2009 – The first parliamentary question on the introduction of generic substitution, asked in the Northern Ireland Assembly by Mr Alex Easton MLA.
- April 2009 – We carry out our anti-epileptic medication survey through our magazine Epilepsy Today magazine, completed by nearly 1,500 members.
- May 2009 – Epilepsy Action’s Deputy Chief Executive meets with the Principal Pharmacist at the Department of Health, to set out our concerns.
- 1 July 2009 – Epilepsy Action, with the Joint Epilepsy Council, launches an e-petition on the Downing Street website, petitioning for a full public consultation into any plans.
- 29 July 2009 – Epilepsy Action receives notification that the Department of Health will publicly consult on generic substitution proposals “in the autumn”.
- August 2009 – Epilepsy Action’s Deputy Chief Executive Simon Wigglesworth sends the Department of Health a 35 page document, detailing why anti-epileptic drugs should not be generically substituted.
- September 2009 – Epilepsy Action press office launches a media campaign to raise awareness of consistency of supply. Over 60 pieces of media coverage achieved, including coverage in The Time and The Daily Mail.
- October 2009 – The e-Petition closes, having attracted 12,205 signatures.
- January 2010 – The Department of Health publishes “The proposals to implement 'generic substitution' in primary care, further to the Pharmaceutical Price Regulation Scheme (PPRS) 2009” consultation.
- March 2010 – Consultation closes. Epilepsy Action makes its submission.
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Comments
Hi
do you think that generic substitution is bad always? I am aware that with teh older drugs with a wide therapeutic index this is an issues, but what about lamotrigine that the MHRA say is bioequivalent?
After attending the Consultation in York I was very disappointed at the results. It came across as nothing more than a show so the health department could say they had taken note of patients at these events but nothing more. The drugs supplied should be consistent as changing between Brands causes problems although they have the same active ingredients the other parts will be different and by talking one type consistently the body adapts to the drug were as when given different brands the side effects will be different or affect you differently. I suffered side effects from a substitute drug but had not suffered them with the original brand
Richard
Epilepsy medication needs to stay as it is and not go over to Generic all AED's should stay as they are, this is the best way for Epileptics to be treated. I have been interested in the treatment of Epilepsy for over thirity years, I have been an epileptic myself for over fifty years
Hi Robert, thanks for the post.
Generic substitution and parallel importing are linked as both issues cause problems for consistency of supply.
Just as different generic versions of a drug can have different ingredients, so can versions produced abroad.
It may be that Tegretol Retard is slightly different from Tegretol CR or LR, even though they are all produced by the same parent company (Novartis-Geigy).
For this reason we would treat an imported drug like a different version.
Therefore we recommend that people with epilepsy should receive the same version of their drug, from the same country of origin, each time.
Pete Scott, Epilepsy Action
I don't wish to cloud the issue of generic substitution, but there are often times when pharmacies procure branded drugs from the EU, with names not necessarily identical to those for the UK market. For example Tegretol Retard will be Tegretol CR or LR in foreign language boxes, which have stick on English labels. In other words parallel imports. Is the issue of generic substitution entirely separate from parallel imports?