A three-strong TreatSMA team is at the annual NICE Conference in Manchester. We intend to speak to the NICE/NHS decision makers present here.
As you may know, NICE, NHS, clinicians and patient representatives reviewed a draft of Spinraza Managed Access Programme on 6th March 2019. That draft did not propose any significant exclusions to the treated population, although the discussion on the cost of therapy remained open as Biogen has proposed an unacceptably high price.
Subsequently, the NHS and Biogen finally engaged in negotiations, and we hoped for a positive outcome. We were fairly confident in the results, since public authorities in 27 other European countries had all by then recognised Spinraza’s benefit and made it available through their public healthcare. We thought the UK will be no different, even if slow.
However, we then realised that the NHS has been unwilling to treat several categories of patients with Spinraza. Certainly, we knew that the economic analysis presented in on the 6th of March was harder, for example, for children with more advanced symptoms, or that there wasn’t much data for ambulant type 3s and adults. However, at no point did it cross our minds that the NHS will go as far as to refuse the treatment to patients who need it most, against all expert opinion and the entire worldwide practice.
We were shocked with the level of understanding of the disease among some of the decision makers.
As we stressed many times, TreatSMA’s aim is to make sure that no child, no teenager and no adult with SMA in the UK will be left without access to treatment.
Thank you for emailing your picture messages to NICE and NHS decision makers over the last days. This has definitely had a tremendous impact. The people who decide about our health and lives must understand what SMA is all about and what we want from them. Today we will hand them in those messages printed – let the photos accompany them in their daily work.
You can see the album by clicking here – thank you everyone who has emailed us their powerful messages. We could not add all of the amazing pictures but the majority have made it.
Thank you also to those who donated to TreatSMA, allowing us to get the albums professionally printed and bound, pay the conference entry fee of £238.80 per person and purchase rail tickets. Dawn, Gary and Kacper will report to you from Manchester with whatever they will manage to achieve.
Fingers crossed, with success.
