FUTURE OF ACCESS TO HIGH-COST DRUGS FOR RARE DISEASES

That this House welcomes the new report by the All-Party Parliamentary Group for Muscular Dystrophy, supported by the Muscular Dystrophy Campaign, on raising the issue of access to high-cost drugs for rare diseases; notes that difficulties in authorising new treatments could mean essential drugs do not reach families that need them; recognises the need for a simplified approval process for multi-centre trials; acknowledges that hospital trusts should promote research more effectively amongst rare disease patients; calls on the Government to establish a ring-fenced fund for rare disease drugs; further calls on the Medicines and Healthcare Products Regulatory Agency, the National Institute for Health and Care Excellence and NHS England to speed up access to life-changing drugs after the final stages of clinical trials to ensure there are no major delays in treatments reaching children; and further calls on NHS England to ensure specialist centres are equipped with an appropriate range of health professionals to deliver treatments.