Les Halpin 1957-2013

16 September 2013, News

We were saddened to hear the news that Les Halpin, founder of the Access to Medicine campaign, died last week, aged 56. 

He had been diagnosed with Motor Neurone Disease in May 2011. The final two years of his life were dedicated to a campaign he founded to improve access to medicines for people with rare and life threatening illnesses on which I was privileged to work with him. ‘Empower: Access to Medicine’ has been supported and championed by a range of high profile figures in politics, academia and medicine including his MP, Geoffrey Clifton-Brown, Professor Sir Peter Lachmann, the Government’s Life Sciences Adviser George Freeman MP, Shadow Health Secretary for Health Andy Burnham MP and Lord Saatchi. This summer Les created the Halpin Protocol, a proposed blueprint framework for a system of legal indemnities for patients with uncommon, life-threatening diseases and this is now subject to consultation.

We first met Les through Damian Crowe of Obilisk, one of the companies in which Les invested, and still is one of our clients. An enquiring mind by nature, he had carried out extensive research into his illness and was shocked to discover that no new drug had been developed for MND since Riluzole, over 20 years previously. This was due to a number of factors: lack of drug development generally for rare and life threatening illnesses, a cumbersome and slow drug development system and a general reluctance for doctors to prescribe drugs at trial stage or developed for other illness because of the threat of litigation. There is also a reluctance to publish drug trials – information that could be shared for the benefit of more people and speed up the R and D process. As a statistician, Les was clear that the risk ratio of a terminally ill patient was vastly different to the norm . He and many others in his position would be willing to take controlled risk, under the guidance of a doctor, if it would benefit future generations suffering similar illnesses. He had the notion of a campaign but didn’t know how to go about getting it heard by the right people – the policy makers, politicians and academics who could push this up the policy agenda and influence legislative change. And that’s where we could help.

In the past two years Les has taken this issue further than it has ever been taken before by any other campaigners. His sheer drive and clarity and the effortless way he could articulate the issue while so obviously afflicted himself caught the imagination of a whole range of key influencers, from his local MP to John Humphreys on the Radio 4 programme. I was there the day we recorded that interview – Les by then almost paralysed and only able to speak with the help of a ventilator. His body may have been failing him but his mind was as clear and focused as ever.

Les had a magnetic charm and he and his wife Claire were a close and effective team. They allowed strangers into their home to meet with them and interview them because Les knew that his personal involvement was integral to the campaign moving forward. And he was treated with huge dignity by everyone who met him, all of whom recognized what an amazing man he was

Motor Neurone Disease is a devastating illness. Les was clear right to the end that he wanted his legacy to be the implementation of the Halpin Protocol. It is our responsibility to help fulfil that legacy and I and my team are proud to do so.

Jennifer Bryant Pearson, CEO of JBP PR and Parliamentary Affairs

To show your ongoing support, the Campaign would also urge you to sign the online petition at http://epetitions.direct.gov.uk/petitions/45928

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