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Mother and son petition UK government to use epilepsy drug company fine to improve epilepsy services

23 December, 2016

Andrew and SandraA mother and son who both have epilepsy have started a petition to persuade the UK government to re-invest a recent pharmaceutical company fine into epilepsy healthcare services.

Pfizer and Flynn Pharma were fined £84.2m and £5.2m respectively for over-charging the NHS for life-saving epilepsy medicine phenytoin sodium.

Andrew Palmer has now launched a petition calling on the government to use the money to change the lives of people with epilepsy.  Andrew said: "I know how vital it is for people living with the condition to have access to high quality healthcare. Let’s turn this tale of corporate greed into a good news story and convince the UK government to use this money to fund a new generation of epilepsy specialist nurses. We need to work together to make a real difference to the lives of people with epilepsy.”

Andrew was diagnosed with juvenile myoclonic epilepsy 15 years ago, which had a profound impact on his life. He had infrequent access to epilepsy specialist nurses but said they really helped him to come to terms with his epilepsy. He said: “I was 15 and wanting to do all the normal things teenagers do, but I knew from that point my life was going to be very different. I had to find ways to cope with my epilepsy and epilepsy specialist nurses really helped me to talk through the many practical and emotional issues I was experiencing.”

Andrew's mum Sandra has had temporal lobe epilepsy since she was a teenager and has taken phenytoin sodium and sodium valproate to control her seizures since 1980. Andrew said: “This combination has enabled her to be seizure free and has made a huge difference to her life. She knows just how much she depends on phenytoin sodium and so was really shocked to hear how much the NHS was being charged for it. Knowing that there is no viable alternative adds to anxiety which is not good for people with epilepsy.”

According to the Competition and Markets Authority (CMA), who issued the fine on 7 December, as a result of the price increases, NHS expenditure on phenytoin sodium capsules increased from about £2 million a year in 2012 to about £50 million in 2013. There are around 48,000 people in the UK who take the medication to control their seizures. Even small changes to medication can have devastating effects for people with epilepsy, forcing the NHS to pay elevated prices for the drug.

He continued: “Epilepsy isn’t a visible condition and I feel that the pharma companies have been both extremely wrong and disrespectful in the way they have gone about this. They have taken advantage of vulnerable people who rely on this life-saving drug and this isn’t the way our country’s health system should be. There is a chronic lack of epilepsy specialist nurses in the UK and £90m would go such a long way in the public sector to provide crucial care for the 600,000 people in the UK with epilepsy.”

Epilepsy Action chief executive Philip Lee said: “Given the NHS was apparently over-charged for the price of this life-saving drug, it is only right and proper the money should find its way back into providing vital care for people with epilepsy. At least then something good would come out of this affair. Every person with epilepsy has the right to the best possible healthcare. Yet we know there are still long waiting times, high rates of misdiagnosis and too few epilepsy specialists. The fine may equate to just five days’ profit for Pfizer, but it is money the NHS – and people with epilepsy - cannot afford to go without.”

Philip added: "In 2009, research identified that 1,100 epilepsy specialist nurses were needed in the UK. Seven years on, there are still fewer than 400.  Epilepsy specialist nurses act as an invaluable resource in the diagnosis, treatment and care of people with epilepsy. They offer people support and guidance on all aspects of the condition, as well as developing specialist knowledge among GPs and practice nurses. They are a lifeline for those people who are not seizure free despite treatment. A recent survey of people with epilepsy reveals that only half have access to an epilepsy specialist nurse should they need it."

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