November saw the first meeting of the Empower: Access to Medicine trustees, which include members of Les’ family. They will be taking the campaign forward on Les’ behalf. Last week the Guardian also ran a moving piece by Geoffrey Clifton-Brown (the Halpin’s local MP and an Empower trustee) on Les’ life and legacy.
Just before Les died, the campaign released its first major report Pathways to Progress which has been well received and is currently with policy makers as part of the consultation process. Now the campaign will focus on its next goal – seeking a legal opinion on whether a change in the law would be required to meet the campaign’s goals.
This would include assessing:
- the viability and legal status of administering drugs after phase II of development.
- the best form of mechanism to invoke the support of a patient group body (such as the MS Trust, MND Association, Association of Medical Research Charities, etc.) to act as a peer group for establishing “acceptable levels of risk” for a patient to take when the consequences of their condition potentially outweigh the potential for side-effects.
- whether an insurance based scheme is the correct avenue for a pilot testing the administering of a selection of drugs, post phase II, to patients.
We look forward to updating you with further details.
The campaign continues to engage with industry and politicians across the parties. Last month we had a constructive discussion with Steve Bates, CEO of the BioIndustry Association, where he described their latest collaborative report with the MHRA looking at early access to drugs. We also met with the shadow secretary of health, Andy Burnham, in partnership with a number of charities representing the rare illness Duchenne, to discuss the implementation of a US style ‘breakthrough’ (accelerated drug approval) system.
Lord Saatchi’s Medical Innovation Bill, which the Empower campaign backs, received a significant boost when the Health Secretary, Jeremy Hunt, committed to a consultation on Saatchi’s proposals. We encourage you to feed in your views when the consultation starts in the New Year.
Furthermore we have now secured the commitment of the Health Minister, Earl Howe to chair a seminal discussion which will bring together key representatives from the political arena, patient campaigns and industry representatives.
We also continue to seek your input via our blog page. This week it 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. If you are interested in writing for our site please get in touch.
If you would like to donate to the campaign, or discuss becoming an official supporter, please contact firstname.lastname@example.org or write to The Access to Medicine Campaign, 34 Smith Square, London, SW1P 3HL.
Empower: Access to Medicine