Motion · S4M-06712 · 22 May 2013

Access to Rare Disease Drugs

Lodged by Nanette Milne Members' Business Motion 17 supporters

The motion

That the Parliament commends the work of the Muscular Dystrophy Campaign and the Cross Party Group on Muscular Dystrophy on raising the issue of speeding up access to high-cost, low-volume drugs for rare and very rare conditions such as muscular dystrophy and other neuromuscular conditions; understands that potential treatments for Duchenne muscular dystrophy are on the horizon; notes reports of patients in North East Scotland with Pompe disease experiencing difficulty in accessing treatment; notes the establishment of the Rare Conditions Medicines Fund and what it considers the important role of the Scottish Medicines Consortium and NHS Scotland in the regulatory and reimbursement process, and notes calls for patients with rare conditions to be able to access vital treatments, regardless of cost.

Supporters (17)

Source: the Scottish Parliament motions and amendments record.