The SMA Trust, along with SMA Support UK and Treat SMA UK, will be attending a meeting organised by Muscular Dystrophy UK‘s All Party Parliamentary Group (APPG) on Tuesday 18th July in the Houses of Parliament.
The meeting will be an opportunity to:
- Discuss access to Spinraza™ in the UK. Spinraza™ is a drug to treat spinal muscular atrophy (SMA), which was recently approved by the European Medicines Agency (EMA) for SMA Types 1, 2 and 3. Whilst it sought approval from the EMA, the drug company, Biogen, made Spinraza™ available for free to eligible SMA Type 1 patients. However, due to bottlenecks and lack of capacity in the NHS, a majority of these patients are not yet receiving treatment in the UK. We’re pressing for Biogen, NHS Trusts and NHS England to reach urgent agreement on costs to ensure that all eligible infants with SMA Type 1 can receive treatment through the Expanded Access Programme.
- establish the priorities for the APPG for the forthcoming year