Les Halpin 1957-2013 Halpin protocol EmpowerATM - raredisease

Dear Alan,

We are saddened to announce that Les Halpin, founder of Empower: Access to Medicine, died this weekend with his family around him.

When Les was diagnosed with Motor Neurone Disease, in May 2011, he was shocked by the lack of progress in treating the condition. The only significant treatment available to him was a drug called Riluzole, which was developed over 20 years ago. All that would do was add a few months to his life at best.

Les immediately started looking into the pharmaceutical process; when he saw the levels of investment into drug development versus the number of drugs that actually make it to market he realised the system needed to be reviewed. As a statistician, the numbers simply didn’t add up.

Empower: Access to Medicine was subsequently launched just over a year ago. In a short space of time it secured the support of his local MP Geoffrey Clifton-Brown and other cross party politicians including the Government’s Life Sciences Adviser, George Freeman MP, Andy Burnham MP, Shadow Secretary of State for Health, Liberal Democrat MP, John Pugh and Lord Saatchi; as well as academics including Professor Sir Peter Lachmann and Professor Richard Barker.

Last week Les published Empower’s maiden policy report Early Access to Medicine – A Year On. The report laid down a clear path to accelerating access to medicines for patients with unmet clinical need. This weekend, the Sunday Times ran a letter from Les in which he called the Government and medical profession to action:

He said: “Clinical trials could be significantly modified to benefit those facing life-threatening conditions. Drug companies could make trial data publicly available to give us faster analysis, and patients and their families could, under medical guidance, waive their right to take legal action — removing the fear of litigation among doctors and drug developers.”

The letter acts as fitting reminder of Les’ determination, in spite of his debilitating condition, to push this agenda forward for the benefit of future patients.

The Empower campaign will continue, as were his instructions, and his wife Claire sends thanks to everyone who has been involved and shown support to date.

A book of condolence will be published on the website. If you would like to donate to the campaign, or send us a message, please contact ■■■■■■■■■■■■■■■■■■■■■■■■■■■ or write to The Access to Medicine Campaign, 34 Smith Square, London, SW1P 3HL.

Empower: Access to Medicine


Sorry to hear this sad news! He accomplished so much in such little time. Quite a man! He will have helped many people, no doubt! His legacy will live on. Condolences to the family and friends.

Thank you for sharing this sad news, Alan!

Very sad. What a legacy to leave behind. Some comfort at least to his family.