A borough MP has given her backing to the fight for access to rare disease drugs.
Mary Glindon has backed a major inquiry that warns hundreds of children with life-shortening conditions could be denied therapies, owing to drastic changes to the way drugs are funded.
She joined MPs, patients, commissioners, regulators and charitable organisations at the launch of a report by the All Party Parliamentary Group for Muscular Dystrophy into access to high-cost rare disease medicines.
The report reveals that while potential treatments for Duchenne muscular dystrophy are finally in clinical trials, parents fear that the ‘race against time’ for their children to be treated may be lost owing to unnecessary delays, funding issues and bureaucracy.
Mrs Glindon said: “Talking to families brought home the urgent action required to fulfil the recommendations laid out in this inquiry.
“Without the right assessment processes and funding in place we risk families enduring agonising delays before their children can benefit from cutting-edge therapies, which could drastically improve their quality of life.”