Medical research

Campaign to bring Spinraza to the UK

The SMA Trust, in partnership with Muscular Dystrophy UK and SMA Support UK have written to the EMA requesting assistance in ensuring nusinersen (Spinraza) is made available at the earliest possible time for the treatment of spinal muscular atrophy in patients in Europe. We have written to ask what steps the EMA can take to expedite its review and bring forward any decision on a licence for the drug and strongly urging them to consider the totality of the clinical trial data, and to grant as broad an approval as possible. 

Read the full letter sent on 11th January 2017

If you are keen to lobby your local MP, we have prepared a template letter for individuals to use.

If you live in England, you can support the campaign by writing to your MP

If you live in Scotland, you can support the campaign by writing to your MSP

If you live in Wales, you can support the campaign by writing to your AM

If you live in Northern Ireland, you can support the campaign by writing to your MLA

Read more about how The SMA Trust is working hard to bring Spinraza to the UK and details of the NICE Scoping Workshop that took place on January 13th.

Meanwhile in the short term, read our joint letter to Jeremy Hunt MP  (Secretary of State for Health) sent on Feb 7th 2017 requesting support for the Expanded Access Programme (EAP) centres from the Department of Health, as whilst the drug is being made available for free there is currently no funding to support the additional infrastructure and capacity required by centres to deliver the treatment. Find out more on the EAP page of our website.

We will continue to do all we can to move the process forward, keep you updated and ensure that your voices are heard.