In a recent update we mentioned that hospitals were going to be asked to submit expressions of interest to provide Spinraza for adult patients. We can now confirm that that request has gone out and it is now down to hospitals to submit to NHS England.
We, as a community, really need to push hospitals into submitting their expression of interest. We are already hearing some large and well-known hospitals around the country are refusing to submit and therefore will not be providing access to adults.
The problem we have is that there are limited hospitals with skills to be able to provide the service. If some of those decide not to provide it then we could have huge swathes of the country without access locally. This means patients will need to be referred to other centres potentially long distances from home. Will also put pressure on the smaller number of centres who did provide a solution, meaning longer waiting lists and further delays for treatment.
We would urge all of you to contact your local hospital and ask them if they submitting an expression of interest for providing Spinraza to adults, and if not, why not? This needs to be locally driven in each area but we are happy to support. Please let us know what the responses are and also if you need any assistance. The fight is not over yet, we have contacts in media and MPs who we can approach.
TreatSMA team
