News and Blog
Empower: Data4Health was privileged to join a hundred patient organisations, academics and policy makers at the Wellcome Trust this week to launch the new Understanding Patient Data initiative.
James Hargrave writes for the Huffington Post on how a new generation must be as willing to share patient information as they are to share personal information on social media.
In 2001, at the age of 41, I was diagnosed with chronic myeloid leukaemia (CML) following a scan to investigate what I thought was a minor knee injury. I was told that I only had three years to live, which, given that my wife and I had three young children, was obviously a devastating verdict.
The Early Access to Medicines Scheme (EAMS) has reached its second birthday (April 2016). The scheme aims to provide patients earlier access to drugs before they are licensed but only when the preliminary data suggests that the balance of benefit and risk is positive. Not only that, there also has to be an unmet need to treat a condition for a life threatening or life limiting disease. After two years, is the scheme maturing nicely, or facing the terrible twos?
Christina Knudsen writes for Empower: Data4Health on her struggle with Ampullary Cancer.
The Access to Medical Treatments (Innovation) Bill and the Accelerated Access Review here in the UK are important recent contributions to the bid to get drugs to patients with unmet need quicker. However, in the area of orphan drugs and rare diseases, any solution ultimately needs to be considered at a global level
The process of drug trialling has taken on a relatively new important phase. Post-marketing surveillance strategies are becoming a necessary part of an orphan drug manufacturer’s responsibilities.
Speaking about her daughter at the launch of Empower: Data4Health in Parliament on 23rd February 2016, Amanda Walburn-Green explains Georgia's story
Jo Churchill is MP for Bury St Edmunds, and two times cancer survivor. She is a passionate advocate for patients rights, and for driving the more effective use of data in healthcare. Empower is very lucky to have her support.
Big data visionary, innovation & precision medicine expert, and Empower's new spokesman on data reforms, Anoop Maini outlines the route map to deliver the big data environment which would optimise patient health, system sustainability and economic potential.
There is no denying the ambition and scope of the Accelerated Access Review (AAR). If such a review was under way in 2012 Les Halpin may have not felt quite so compelled to start a patient campaign, as much of what is called for in the AAR chimes closely with his original vision.
Today the Access to Medical Treatments (Innovation) Bill was debated at 2nd Reading in the House of Commons. It has now successfully scaled that hurdle onto the committee stage where it will receive further scrutiny.
Susie Hills, Managing Director at Graham-Pelton, a friend of Les Halpin's has written a piece about Les' success as a campaigner.
Further to our report assessing the progress of the Early Access Scheme (EAMS) a year on from its launch, Leela Barham has written a thought provoking article on EAMS' success so far.
Leela Barham, a health economist, writes our latest article examining the progress of the Early Access to Medicines Scheme (EAMS). Her piece comes ahead of a pending roundtable discussion (26 November) at the Royal Society of Medicine featuring a number of expert commentators including the new President of the RSM, Babulal Sethia.
Geoffrey Guy discusses prescribing unlicensed medicines and the use of GW Pharmaceuticals’ new treatment for epilepsy, Epidiolex, in a précis of the speech he delivered at Early Access Parliamentary Reception.
Claire Halpin, widow of Empower founder Les Halpin, conveys her thanks to those who came together for the manifesto launch on 25th March. Claire only wishes Les had been there to see the huge step taken with the Early Access Scheme.
Dr Jack Scannell, an independent consultant and former pharmaceutical market analyst, writes about the unpredictability of forecasting the success of a new drug.
The excellent research and campaign group, findacure, explain why fundamental diseases are so important to medicine; and invite you to join them for an exclusive workshop.
Leela Barham, an independent health economist, writes our first blog of 2014 on the Government's recent Strategy for Rare Diseases.
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.
Hana Ayoob, Oliver Timmis and Nick Sireau of the AKU Society write about the practicalities of designing clinical trials.
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.
Les Halpin writes about last week's crucial vote, in the EU Parliament, on Clinical Trials
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.
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...
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.