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Genomics Medicine Campaign

Action Duchenne launches campaign to ask the Government to publish White paper

Please help us today to ask the Government to publish a new White paper on Genomic medicines and include demands for new drug funding for Duchenne.

Please modify our standard letters and send off to your MP today in support of our campaign. Ask your MP to forward your letter to the Health Secretary Andy Burnham. Simply register with our website www.actionduchenne.org/register , sign in and and use your dashboard to write to your MP. Remember to add some personal details to your letter.

Action Duchenne has written to the Department of Health in support of the recently published House of Lords report on Genomic Medicines which finds that the NHS is poorly equipped to deal with this next generation of medicines and treatments. The charity, which is aiming to find a cure for Duchenne Muscular Dystrophy and campaigning for better standards of care for all those living with Duchenne, is asking the government to consider using single-gene diseases like Duchenne a model for delivering the next generation of genomic medicines, where medicines are tailored to the individual depending on their genetic make up.

The report finds several issues that correlate directly with Action Duchenne’s experience of trying to find a cure. Lack of ring fenced funding to enable continuity of research; little incentive or support for biotech and pharmaceutical companies to work with the NHS to develop treatments; no framework to coordinate work by academics, scientists, NHS and commercial organisations – indeed, huge amounts of bureaucracy; disincentives for research in the UK meaning that research is conducted outside of the UK putting the UK at a severe disadvantage; no facility within the NHS to do research work in genomic medicine; and very little understanding outside centres of excellence which are few and far between resulting in a postcode lottery for patients.

For several years now Action Duchenne has been campaigning for ring fenced funding to find a cure or effective treatments, and for Centres of Excellence for the delivery of best practice medical care. The Centres of Excellence for multi-disciplinary care is a model that has been proven to work, with the result that patients live longer with a better quality of life. They are vital to provide teams of specialists that deliver holistic patient medical care needed to treat a complicated disease like Duchenne. Currently there are Centres of Excellence in Newcastle and London and the charity is campaigning to have additional centres introduced across the country so that all UK patients will be able to benefit.


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