Debbie Purdy presses MPs to improve access to multiple sclerosis drugs | Society | The Guardian

Debbie Purdy presses MPs to improve access to multiple sclerosis drugs

Campaigner says more people with MS could consider killing themselves unless they are given easier access to new drugs

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• James Meikle
• The Guardian, Monday 28 March 2011
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Debbie Purdy plans to make an individual funding request for Sativex to her local health trust. Photograph: Dan Kitwood/Getty Images

An increasing number of people with multiple sclerosis will consider killing themselves unless they are given easier access to new drugs, a campaigner for the right to die has said.

Debbie Purdy, who has MS, is supporting pleas to MPs to help end the "postcode lottery" in supplying the drugs. The MS Society says the lack of updated national guidance on treating the condition is a factor.

"I strongly believe the suicide rates for people with MS are far too high. People struggle to get access to the drugs or the services they need and which can help improve their lives. Despite what people may think, MS is not an insurmountable condition – with the right help and support you can live with it for many years. A lack of options encourages people to make poor choices, and that's wrong."

Purdy, who won a historic 2009 judgment in the House of Lords that she had a right to know whether her husband would face prosecution if he assisted her suicide, said: "I am known as someone with MS who wants the right to end my life if it becomes unbearable ... so help me make it bearable."

Sativex, a cannabis-based medicine administered via mouth spray, is licensed for use only when patients have not responded adequately to other medication. Purdy said the treatment she was on at the moment was not working for her and she hoped to make an individual funding request for Sativex to her local health trust.

Purdy and the MS Society are due to meet the all-party parliamentary group on the condition on Monday. The society says people with the condition struggle to get other treatments including Tysabri, which was approved for use throughout the NHS in 2007. Access to functional electronic stimulation (FES) for dropped foot, the inability to lift feet and toes, is also patchy.

Part of the problem is thought to be the failure of the National Institute for Health and Clinical Excellence (Nice) to update the 2003 clinical guideline for the treatment of MS. Campaigners point to last year's report for the government on international variations in drug usage, which suggested the UK ranked 13 out of 14 developed countries for the use of MS drugs.

Jayne Spink, the MS Society's director of policy and research, said: "People with MS should have access to proven treatments, no matter where they live in the UK. Withholding the right treatment is totally unethical and can have an absolutely devastating effect on people's lives. People with MS have the right to a full life and it's high time that the people holding the purse strings recognised this."

via guardian.co.uk