News and Blog
The latest newsletter from the Empower: Access to Medicine campaign.
This week our blog page features an article by Dr Brian Dickie, Director of Research Development at the MND Association, in which he looks at how drug trials are designed.
Empower: Access to Medicine won a Highly Commended Award, in the Health and Wellbeing category, at last night’s PRCA Awards.
Geoffrey Clifton-Brown, Les' local MP, has wirtten an obituary for the Guardian website.
The Empower: Access to Medicine campaign has been shortlisted for a national public relations award
We are saddened to announce that Les Halpin has passed away, aged 56.
If you would like to donate to the campaign please transfer your donation to Empower using the following details:
Account number: 63486087
Cheques can also be made payable to Empower: Access to Medicine
Empower: Access to Medicine releases its first policy report Early Access to Medicine - A Year On
Empower: Access to Medicine supports Lord Saatchi's Medical Innovation Bill
Empower: Access to Medicine will be releasing its first policy report looking at the barriers to drug development.
Hana Ayoob, Oliver Timmis and Nick Sireau of the AKU Society write about the practicalities of designing clinical trials.
The latest newsletter from Access to Medicine founder, Les Halpin.
Julian Savulescu,Uehiro Chair in Practical Ethics Director, Oxford Uehiro Centre for Practical Ethics, University of Oxford, writes an excellent blog exploring the ethics of drug approval
Health Economist, Leela Barham, explains NICE's approach to assessing drugs for orphan and ultra-orphan diseases.
This week Empower has been referenced in two parliamentary debates regarding the drug development process.
Les Halpin writes about last week's crucial vote, in the EU Parliament, on Clinical Trials
On 15th April a panel of academic, political, pharmaceutical and patient experts gathered in Parliament to to start the consultation process for the Halpin Protocol. You can watch a video of the summit and read the transcript here...
Les Halpin's latest newsletter to Empower: Access to Medicine supporters.
Oli Rayner, a patient advocate with Cystic Fibrosis, writes about clinical trials and his support for Les Halpin’s campaign.
As part of a Sky News piece on the Drury's battle with accessing vital cancer drugs for their daughter, Les Halpin wrote a special piece for the Sky News website.
Les Halpin writes about the launch of the Halpin Protocol; a blueprint framework for patients suffering from certain life-threatening diseases. It would allow patients to make their own informed choices about the risks of participation in Clinical Trials or taking drugs and therapies originally intended for other conditions.
A panel of academic, political, pharmaceutical and patient experts gathered in Parliament this week to to start the consultation process for the Halpin Protocol.
Lindy Jones, Author of The Voice in My Head is Perfect, writes about her diagnosis with MND and her experience of taking part in a drug trial.
Les Halpin looks back at the pioneering work of Dr Edward Jenner in his search for a vaccine against smallpox.
International journalist, writer and commentator Lois Rogers writes about how the blame culture limits chances for sick people.
Les' Halpin writes about the amazing coverage the campaign has recently received.
Empower: Access to Medicine has launched a Facebook page called ‘Right to Try’ to involve the patient voice in its campaign to accelerate the process of drug development and improve access to medical drugs for people with rare and life-threatening conditions.
Les Halpin has been interviewed by John Humphrys on BBC Radio 4’s Today Programme about giving people with rare, life threatening conditions the right to try unlicensed drugs.
Les Halpin has set up an e-petition to raise support for those with rare, life threatening serious conditions for which there is no satisfactory treatment currently available.
Les Halpin has been inteviewed by Sunday Times journalist, Lois Rogers, on his drive to improve access to medicine
Les Halpin has written a blog welcoming the GlaxoSmithKline decision to publish the data on all drug trials conducted by the company since its foundation.
Geoffrey Clifton-Brown MP has written an article for Politics Home's Central Lobby.
Empower: Access to Medicine has made a submission to the public consultation on the NHS Constitution. Empower welcomes the opportunity to make a submission to the Consultation and was particularly encouraged by the commitment to further invlove patients in their treatment.
Pharma Times, one of the UK’s Leading pharmaceutical and health publications, has run a news story in their online edition following the Westminster Hall debate on access to medicine for people with terminal illnesses http://bit.ly/UpFYgl and leads on Empower: ATM’s call for more patients to become involved in campaigning for change
Geoffrey Clifton-Brown MP led a debate in the House of Commons calling upon the Government to urgently accelerate the speed at which patients with rare and life threatening illnesses can access drugs (9.30am, Wed 23rd Jan)
This week’s Times leader 'The Drug Test' (10th January 2013) goes to the very heart of the issue that Empower is campaigning for - transparency.
Drug development is hugely expensive, which means that only large companies with deep pockets can develop them. Professor Lachmann explains the litigation system that drives up those costs.
I would like to take this opportunity to thank you for all your support this year; I have been truly overwhelmed by how much progress the campaign has made. The last month has been particularly busy for us and I would like to share with you some highlights.
The issue of slow drug development and lack of approvals for new medicines, particularly in neurology, was recently raised in parliament. CASMI’s support for The Empower: Access to Medicine campaign was announced and we will continue to strive towards creating a more productive environment for new treatments for neglected diseases.
Recent announcements on the UK Life Sciences Strategy and plans for mapping the DNA of over 100,000 people with rare diseases marks a significant step in the quest for new treatments. However, as Geoffrey Clifton-Brown, Les Halpin’s Constituency MP, writes it is not the whole story.
A couple of weeks ago I took part in an important debate in the House of Lords on improving neurological services in the United Kingdom.
It was an opportunity to highlight a neglected subject; one with some alarming statistics that I believe deserves wider attention in Government and policy circles.
Orphan medicines are used to treat some of the rarest conditions; conditions that affect less than 5 per 10,000 people in Europe. Leela Barham, independent health economist and 2020health research fellow talks about the challenges faced in developing new drugs such as cost, knowledge, regulations...
Empower: Access to Medicine campaign raised in House of Lords debate on improving neurology services
20 November 2012, House of Lords: Baroness Masham of Ilton debated the lack of drug development for patients with rare or life-threatening conditions in a Parliamentary debate. She referred to the Empower AtM campaign and asked the Government what it will be doing to speed up the drug development process.
Alastair Kent, Director of Genetic Alliance UK: The pursuit of safety when granting a licence to a new medicine is obviously important. Given that there is no such thing as a completely safe drug, the issue becomes one of establishing whether or not the anticipated health gains for patients are sufficient to outweigh the risks inevitably associated with prescribing a powerful (and potentially somewhat toxic) medicine to a patient with a serious and possibly life limiting disease.
I was thinking about this the other day when a spot on the TV news talked about a tragic incident where a boy had been struck by lightning outside his school. Rounding up, they said that this was a very rare incident: there were 12 cases of lightning striking individuals in the UK each year of which 3 usually ended in fatalities. I then compared this with my own condition, MND, which is described as a rare disease. Some 5000 people have MND in the UK, and about 1500 die each year. Sounds a lot less rare than being struck by lightning.
The Access to Medicine campaign is a unique one, created for patients by patients.
Since being diagnosed with Motor Neurone Disease in May 2011, I have done a huge amount of research on the Internet and talked to as many experts as I could find in order to understand the disease that is probably going to kill me.
Patients with rare, life threatening genetic conditions should be given greater powers to take part in clinical trials and have earlier access to medicines, according to a new campaign launched in the UK.
Empower: Access to Medicine debate - 12 September 2012 - The King’s Fund, London