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Mother and son lobby to use drug company fines to fund specialist epilepsy nurses

A mother and son who both have epilepsy are petitioning the UK government to fund a ‘new generation’ of epilepsy nurses using money from fines of pharmaceutical companies that overcharged the NHS for epilepsy drugs.
Pfizer's is the largest pharmaceutical company in the world

A mother and son who both have epilepsy are petitioning the UK government to fund a ‘new generation’ of epilepsy nurses using money from fines of pharmaceutical companies that overcharged the NHS for epilepsy drugs.

Pfizer and Flynn Pharma were fined £84.2m and £5.2m respectively earlier this month by the UK’s competition regulator, the Competition and Markets Authority (CMA), for bumping up the price of epilepsy treatment phenytoin sodium by 2,600% in September 2012.

Pfizer's is the largest pharmaceutical company in the world
The Pfizer headquarters in New York, is the largest pharmaceutical company in the world
Picture: iStock

The CMA found each firm broke competition law by charging 'excessive and unfair prices' in the UK, which saw NHS expenditure on phenytoin sodium capsules soar from about £2 million a year in 2012 to about £50 million in 2013. 

Now Andrew Palmer and his mother Sandra are calling on the government to use the funds to create specialist nursing posts and improving epilepsy services in the community.

Mr Palmer, from Welling, was diagnosed with juvenile myoclonic epilepsy 15 years ago, while his mother has temporal lobe epilepsy. Phenytoin sodium has helped control her seizures.

Lack of posts

Mr Palmer said: ‘There is a chronic lack of epilepsy specialist nurses in the UK and £90 million would go such a long way to provide crucial care for the 600,000 people here with epilepsy. Nurse posts have been underfunded for many years, but this fine provides a unique opportunity to have epilepsy nurses in communities across the UK.’

The family's online petition has attracted more than 2,700 signatures. Mr Palmer plans to deliver it to chancellor Philip Hammond and health secretary Jeremy Hunt. 

Philip Lee, chief executive of the charity Epilepsy Action, said the UK has less than 400 epilepsy specialist nurses, but needs a further 700. 

'Epilepsy specialist nurses act as an invaluable resource in the diagnosis, treatment and care of people with epilepsy,' Mr Lee said.

'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.'

Appeal

Both Pfizer and Flynn Pharma companies plan to appeal against the Competition and Markets Authority decision.

A Pfizer spokesperson said: ‘Pfizer is a responsible, global business, committed to operating to the highest standards.’

A Department of Health spokesperson said: 'The department is monitoring developments very closely on what will happen with the fine, but as it is still very early in the process, it would not be appropriate to comment further at this stage.' 


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