On 21st January, in the House of Commons, Geoffrey Clifton-Brown MP chaired a discussion with Empower: Access to Medicine and the Health Minister, Earl Howe. Leading minds from the medical, political, pharmaceutical and patient advocacy world came together to debate the barriers that prevent medicines from getting to those who need it.
We are currently in the process of producing a report summarizing the discussion, so keep an eye out for it on our news page. In the meantime you can read this blog by Steve Bates, CEO of the BioIndustry Association, who took part in the debate.
Although the Minister was clear in his commitment to life sciences and admitted his frustration at the pace of progress, what was less clear was the timescales behind the Government’s ambition for accelerated access. The fact remains that lives are at stake while we wait for action.
How do we make progress?
We need to demonstrate to the Government and Parliament that this is more than a policy issue; the lack of progress in drug development affects real people and real lives.
That is why we are hosting a lobby of Parliament on 25th March in the House of Commons 4pm-6pm. We are looking for patients, and/or their families, to attend with their constituent MP so that we can get this issue onto the agenda of backbenchers.
If you would like to get involved, or support the event financially please contact the campaign team through the website www.accesstomedicine.co.uk.
This lobby of Parliament will hear from leading politicians, pharmaceuticals and patient advocates to explain how and why things can be done differently.
It is through educating our elected representatives that we can really bring pressure to bear to ensure that we change the system for the better.
The Halpin Protocol
Last week we launched a consultation on the Halpin Protocol, a blueprint which I hope will result in changes to the current legislation and rules governing the way drugs for people with serious and life threatening conditions are developed and prescribed. Although I could not be at last week’s Parliamentary launch debate, I followed it closely on Twitter and have listened to a recording of the whole event. I want to thank all of those who participated and spoke so well of their perspective on a challenge that potentially affects so many different stakeholder communities.
I also want to thank those who expressed an interest in observing the event, in particular Alan Thomas from mid-Wales, an ambassador for people suffering with Ataxia and who made a staggering 10 hour round trip just to attend. He will hopefully be helping us take the campaign to the Welsh Government.
And last but not least, the media who have kept this subject in the public eye, including my local Gloucestershire press who have treated my story in a very dignified and sensitive way, and The Sunday Times, which has run a number of stories now on the campaign and similar challenges experienced by others who want earlier access to drugs that may improve quality of life.
As a result of last week’s debate, Empower: Access to Medicine was raised the following day in Parliament by George Freeman MP, the Government’s Life Sciences adviser, who has expressed significant support and, as a result, he and Geoffrey Clifton-Brown are meeting with Health Minister Norman Lamb in the coming weeks.
I am realistic enough to know that any change to the current regulatory environment in this area will likely be too late to have any significant impact on my condition. But this isn’t about me. This is about the next generation of patients who deserve the chance to choose how they fight their battles and the risks they are prepared to take, as long as those risks are taken in a controlled environment under the strict guidance of their physician. It’s the patients who know most about the conditions they are living with day in, day out. All clinical trials data should also be shared publicly as this is the only way we are going to speed up evidence-based research and innovation.
As you know, despite the limitations of this illness, I am committed to pushing forward this debate and to keep its momentum high. Signatures on the e-petition are now well over 1500 – there’s a long way to go but I feel I am now taking a lot of people on the journey with me.