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News and Blog



Les Halpin 1957-2013

Les Halpin 1957-2013

We are saddened to announce that Les Halpin died this weekend, aged 56.
Les was a remarkable and visionary individual whose Access to Medicine campaign, seeking  fundamental change in patients’ rights to access to drugs for rare and life threatening illnesses, will be his legacy.
Les founded the campaign after being diagnosed with Motor Neurone Disease in May 2011.  In a relatively short time, the Campaign has gained significant momentum and it was Les’ clear wish that it continues its progress.  His vision was that one day, sooner rather than later, the Halpin Protocol will be reality, enabling patients to access medicines in the earlier stages of development, under the supervision of their consultant, that may improve or prolong their lives while providing invaluable trial data for future generations.
His wife Claire said today: “Les knew that he would not benefit from anything the campaign could change in his lifetime.    But he did know that he could put what time and energy he had left into an initiative that could be life changing for future generations.” 
Les’ MP, Geoffrey Clifton-Brown, who was one of the earliest supporters of the Campaign added: “When I first met Les he knew he was going to die.   His instructions to me and fellow campaigners the last time I saw him was that the campaign should continue – he was very clear to the end about what he had set out to achieve and how we are going to make that happen.  We are all committed to seeing the Halpin Protocol implemented so that people who are suffering from illnesses similar to Les will have a better chance in the future than he did because of lack of development into suitable drugs.”
Please add any messages of condolence to the comment box below.

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.
To show your ongoing support, the Campaign would also urge you to sign the online petition at

For further press information please contact Karen White on 0117 9073400 or 07787 148393 or James Hargrave 0203 267 0074 or 07900 904 707


  • Sad to hear this news…thinking of his family and friends. May he rest in peace and his legacy be taken forward.

    Maddie Copp 16-09-13 2:58pm

  • Deeply saddened to hear of the passing of an inspirational man who has shown such passion and enthusiasm in catalysing debate on how access to potentially beneficial treatments can be improved.

    Brian Dickie 16-09-13 4:02pm

  • So very sad to learn the sad news about Les Halpin.  The campaign has our wholehearted support and we are sure that there are many others, like ourselves, who will continue to support it.  My husband has a rare and life-limiting neurological condition - so Les’s work is close to our hearts and to those of our family and friends, all of whom support the campaign.  We are thinking of Les’s very courageous widow and family.

    Alison and Peter Martin 16-09-13 4:13pm

  • Remembering with fondness happy times on the badminton courts at Tetbury.

    Shirley Hill 16-09-13 4:16pm

  • I was privileged to get to know Les a bit through his support of the University of Exeter.  I was immediately so taken with Les and Claire and their commitment to making the world a better place.  There are few people who would commit so much of their time, and of their hard-earned wealth, to causes which were not necessarily the most popular, but which had a chance to make such a real change to humanity.  Les and Claire are some of the most selfless people it’s been my privilege to know.  Les was one of the ‘good guys’ and the world today is a little darker without his light in it.  I have great hope that his legacy, however, will live on through his good works and his many causes (including his foundation), and the world is a much, much better place because of his (too brief) life and works.

    With my sincerest condolences,

    Empower 16-09-13 4:18pm

  • I knew only of Les through someone else and constantly heard what an amazing person he was. The campaign he founded and led was truly inspirational and I only hope that his legacy will unfold exactly as he hoped it would - that patients will have the right to choose the drugs they are willing to take in an effort to cure or solve illnesses that rob of us incredible people far too early.

    Liz Morrell 16-09-13 4:43pm

  • I am very sorry to hear this. Please pass on my sincere condolences to his family. As you rightly point out, his name will live on in the great work he has done to help others - something they should be very proud of.

    Kind regards,

    Paul Tunnah

    Empower 16-09-13 4:47pm

  • I got to know Les and Claire through my work. Both wonderful people.  Les gave selflessly of the limited time he knew he had in the fight to improve life for others in his situation knowing that he himself was never going to benefit.  A wonderful man with a devoted wife and a ‘wicked’ sense of humour.  He will be greatly missed by all who had any contact with him.  Rest in peace Les, the world is a darker place without you.

    Ruth Barker 16-09-13 5:14pm

  • I am a Halpin Scholar who had a chance to do a PhD in a world class lab, thanks to the great initiative started by Les at University of Exeter. I had the privilege to have dinner with Les and Claire during my PhD. As I said in dedication part of my thesis, Les was a gifted, extremely friendly person. He was always with full of energy and ideas. Over a ten min chat, He could make you feel like you can achieve anything you really want, even can change the whole world. He was and he is a true inspiration for me.

    Rest in peace,

    Yasin 16-09-13 5:41pm

  • I had the privilege of being one of a team of DNs who cared for Les & supported Claire, enabling him to stay at home throughout this dreadful disease. He was a force to be reckoned with!
    His legacy will be the Right To Try campaign & the setting up,of Empower: Access To Medicine
    RIP Les, your battle may be over but you live on in this campaign

    Bec Williams 16-09-13 6:13pm

  • Such an amazing,brave and funny man.l will never forget those eyes, they said so much!!! It was a privilege to have known you and an honour to have cared for you.  Your legacy will live

    jo scarr 16-09-13 7:15pm

  • Such sad news. I am confident Les’ work, supported by so many, will continue.

    Leela Barham 17-09-13 6:40am

  • A great man, will be missed. To all the family take care

    Mark Samson 18-09-13 8:07am

  • RIP Les, condolences to family and friends from an Australian PALS.

    Ali 18-09-13 8:08am

  • Les was inspirational and will be remembered for the work he did -  I am sure it will help others eventually.

    Please convey my sympathy,  at an appropriate time,  to Clare. She will have suffered so much during this difficult end to his life.  The loss is so final and one needs to draw on the happy memories of the past and appreciate the marvelous spirit he had.

    Baroness Gardner of Parkes

    Empower 18-09-13 9:19am

  • Very sad to hear of Les Halpin’s death. His campaign to make changes to clinical trials has been incredibly important, this is an issue which affects many people including young people with cancer. We’re grateful for what Les has done and send our condolences to his family.

    Sasha Daly, Teenage Cancer Trust 18-09-13 9:40am

  • I just wanted to say how sorry I am about Les & I am thinking of you all.

    He was a real inspiration, I learnt a lot because of him & his campaign.

    Charlie Smoothy

    Empower 18-09-13 11:17am

  • Les Halpin was a remarkable man. Undaunted by his own illness, he campaigned with great determination for fundamental change in patients’ rights to access experimental medicines. His Empower campaign has already achieved huge momentum, and will be a worthy legacy of someone we will sadly miss.

    Professor Richard Barker

    Empower 18-09-13 12:41pm

  • Mr Halpin is an inspirational figure for all, but especially for those living with a life-limiting condition. The amount he achieved and the importance of his legacy will resonate for many years to come. Our best wishes go to his family.

    Andy Soar, Action Duchenne 18-09-13 1:41pm

  • I didn’t know Les but my Mum Rita Bellinger was diagnosed with MND in July 2011 and sadly died recently on 22nd August 2013 aged 67.  We live just a few miles away from you in Purton, Wiltshire.  I think had trial drugs been available to my Mum she would have taken them.  There is insufficient awareness of this disease which has cruelly taken our loved ones before their time, so please, I would like to help in your campaign. My sincere condolences to all who knew Les

    Angela Bellinger 19-09-13 2:05pm

  • Our sincere condolences to Claire and your family
    and friends.
    Anything we can do to help forward The Haplin Protocol,
    consider it done.
    We will make sure Les’s vision becomes a reality.
    May he Rest in Eternal Peace
    With all our love and solidarity
    Davina, Eric, Summer, Jodie and Laila Rivers

    Davina Rivers 19-09-13 7:27pm

  • Very sad - a very brave and courageous man.

    Steve Anderson-Dixon 23-09-13 1:43pm

  • Christian Martin and myself were delighted when we were asked to make the videos for the Access to Medicine campaign, and we had the privilege of being invited to Les and Claire’s house to interview him on three occasions. Although we were saddened to witness the severe toll that this terrible disease had taken on him, we were at the same time uplifted by his spirit and his dogged determination to push forward a movement that might in the future ensure that others did not suffer the same fate as him.
    His courage, openness and good humour were an inspiration to us, and we feel profoundly grateful to have known him.
    He is a huge loss to his family, but also to the wider world in general.
    Simon, Christian, Jack and Jamie

    Simon Cook 29-09-13 11:17am

  • I was so sorry to read that Les has passed away.  His endeavours gave me some hope when there appeared to be nothing that would help this heart-breaking condition.  Very sadly, my husband passed away in June, after finally being diagnosed last year with MND.  It has been a traumatic year but I always clung to a faint hope that someone, somewhere would come up with a new treatment, but it wasn’t to be.

    I sincerely hope that Les’s campaign will gather strength and that new trials will emerge and will be readily available for those suffering with this dreadful condition.

    I will certainly be following any progress made.

    Joy Cook

    Joy Cook 02-10-13 10:05am

  • 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 fulfill that legacy and I and my team are proud to do so.

    Jennifer Bryant-Pearson, Chief Executive, JBP PR & Parliamentary Affairs

    Empower 02-10-13 10:31am

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