A charity’s call for people with devastating muscle-wasting conditions to receive faster access to key treatments has received support from North Tyneside MP Mary Glindon.
Among the issues discussed at Muscular Dystrophy UK’s Fast Track event for people with muscular dystrophy, parliamentarians, pharmaceutical industry representatives and the National Institute for Health and Care Excellence (NICE) was a recent announcement of a scheme that would give people access to Spinraza – the first and only treatment for Spinal Muscular Atrophy – while it is being assessed for funding on the NHS by NICE.
The charity is warning that with more rare disease drugs like Spinraza reaching the market, patients will face agonising waits to access them without urgent reform to the drug approval process.
Mrs Glindon, who hosted the event, said: “We heard how lengthy and unnecessary delays to the drug approval process endangers lives.
“The NHS needs more powers to negotiate good deals with pharmaceutical companies, streamline access to treatments and early access schemes, which bring treatments to patients faster.
“Meeting those affected by this cruel condition really hit home just how urgent the need is to get life-changing treatments to families.”