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Campaign Introduction

Les Halpin was diagnosed with Motor Neurone Disease (MND) in 2011. A gifted mathematician, with an inquisitive brain, Les quickly realised the numbers were stacked against him, and furthermore the money spent on new drugs versus the output was wildly out of kilter.

Rather than take on the treatment and research of MND directly, as this is catered for already by a number of charities, Les instead set his sights on taking on the system more widely.

Understanding that the system he wanted to change was governed by the regulatory and political world, Les approached JBP. With our support, Les established a mechanism for changing the system – and so began the Empower: Access to Medicine campaign (June 2012).

During the course of the campaign Empower: Access to Medicine has secured the support of some of the leading minds on regulatory, legal and drug development issues, including Professor Sir Peter Lachmann, founding President of the Academy of Medical Sciences, Sir David Cooksey, chair of the Francis Crick Institute, Sir Michael Rawlins, former Chair of NICE (now CEO of MHRA) and Lord Saatchi, author of the Medical Innovation Bill – not to mention the support of the Government’s life sciences minister, George Freeman MP.

Engaging the system

Following initial meetings with the Health Minister, Earl Howe, supported by Les’ local MP Geoffrey Clifton-Brown, the campaign began to build awareness of the Empower cause. The campaign achieved a significant parliamentary breakthrough in November 2012 when Baroness Masham highlighted the work of Les, and Empower’s aims, in a debate in the House of Lords.

This breakthrough saw the campaign go from strength to strength, with the early access agenda forming debated in the House of Commons in Westminster Hall. To further drive awareness, Empower submitted a Government e-petition that garnered thousands of signatures and attracted enough attention to see Les Halpin interviewed form his bedside (where he was now confined) by the Today Programme’s John Humphry’s.

This drove further attention to Empower’s cause and the campaign was covered, over the course of 18 months, on Sky News, BBC News, a range of regional press (print, TV and radio) across the southwest of England (where Les was from) and a series of pieces in The Times (who championed the issue).

Celebrities such as Bradley Wiggins, Professor Stephen Hawking, England Rugby’s Andy Farrell, and more threw their support behind the campaign by co-signing letters, petitions and attending parliamentary events.

Effecting change

Through comprehensive engagement across Government, industry and the academic world Empower helped secure a major positive change for patients – the Early Access to Medicine Scheme. Working with a coalition of patient and medical campaign groups, such as Joining Jack, Duchenne Children’s Trust and the Genetic Alliance, Empower hosted a summit in the House of Commons where the Department of Health launched its new Early Access Scheme (March 2014) with Empower’s support.

Unfortunately Les was not see the positive change that he helped bring about, as he lost his battle with MND in September 2013. However his wife, Claire, featured alongside the Health Secretary, Jeremy Hunt, in a nationwide release announcing the scheme.

The campaign has not stopped there. Most recently it joined Duchenne Muscular Dystrophy charities, who have worked closely with Empower, in delivering a 24,000 strong petition to Number 10 calling for the approval of a vital drug, Translarna, which is currently unavailable for patients.

Empower will also be imminently releasing a report examining the progress of the Early Access to Medicine Scheme to date.