Empower: Access to Medicine joins Duchenne community in Parliament
15 January 2015, Blog
24,000 strong petition
Duchenne patients had recently received the devastating news that a very promising treatment – Translarna – was being blocked by NHS England for funding reasons.
NHS England, who pulled out of yesterday’s event at the last minute, (much to the anger of the delegates) have stopped this vital drug being used on patients due to the upfront costs of the treatment.
The many MPs, Peers, patients and parents present were outraged by the logic of the decision. Duchenne, a muscle wasting disease, is incredibly expensive to manage for both the health service and parents. From steroids and wheelchairs to ventilators and end-of-life care, the condition has significant ongoing financial consequences for the health service. Therefore a treatment that presents the opportunity to save more patients earlier in the condition, thus lessening the demand for their needs later in life, seems a no-brainer.
That’s why dozens of families, for as far afield as the Shetlands, marched on Downing Street with a 24,000 strong petition in hand calling for the fast track of this vital medicine.
Show of solidarity
Duchenne is a condition with a great many mutations, this drug will only help 13% of sufferers. But it was a tremendous display of solidarity that many of the patients and families in attendance were not even going to benefit from this specific treatment. Yet they were there on behalf of their friends, and the future patients who may benefit.
Empower was privileged to be among such company. In the coming weeks we will be announcing the new focus and priorities of Empower and if you want to find out more please visit www.accesstomedicine.co.uk.
James Hargrave is an Account Director at the JBP London office