Page last checked: 30th November 2022
Last updated: 4th May 2021

Our Advocacy and Access Diary

In general, across the UK:

Feb – March 2020: to help with planning the roll-out of the nusinersen treatment programme across the UK, patient groups conducted a survey for all adults who have 5q SMA Type 1, 2 or 3 to find out who did / did not want access to nusinersen treatment. SMA UK collated the results – 145 people replied. We sent an overall summary to the adult services network, NICE, and NHS England.

Due to Covid-19, programme roll out was significantly delayed at most Centres, but we were able to liaise with many about who was waiting and get back to respondents with any updates and advice about what they could expect next.

Jan 2021 – June 2022: With MDUK we worked with a local patient group led by a very active family where the Trust was not providing the service, though the clinical team were more than keen to offer it. Finally the service was set up.

Who have SMA Type 3 and had lost their walking ability since 28th July 2019:

These adults would have been eligible for treatment on this date. SMA UK took up individual cases and the case in general to argue that in view of the delays in setting up adult services and the impact of Covid-19 that further increased delays, any adult in this position should still have been eligible for treatment.