Spinraza assessment delays highlighted in parliamentary debate

Published Date
30/01/2019
Author
Jonathan Kingsley
Category
Campaigns
Spinraza SMA treatment

The continued delays in the assessment process for the spinal muscular atrophy (SMA) treatment Spinraza were highlighted by MPs in a House of Commons debate yesterday on support for children with life-limiting conditions.

Mary Glindon MP, Chair of the All Party Parliamentary Group for Muscular Dystrophy, and Lyn Brown MP, spoke in the debate and challenged the Government, NICE, NHS England and Biogen to work together to reach agreement on access to Spinraza as quickly as possible.

What was said in the debate

In her powerful speech Mary Glindon MP made reference to:

  • frustration of families still waiting for Spinraza to be approved
  • inappropriate for Spinraza to be assessed by NICE under the Single Technology Appraisal route as SMA is a rare condition and therefore difficulty to meet cost effectiveness thresholds
  • 18 months since the European Medicines Agency licence recommendation for Spinraza was released
  • effectiveness of Spinraza for a better quality of life and possibly some longevity
  • access to Spinraza on the NHS in Scotland for SMA Type 1 patients
  • 24 European countries have made Spinraza available

Lyn Brown MP also spoke passionately advocating for access to Spinraza on behalf of her constituents – Shakil Malji, whose 5 month old daughter Maryam has been diagnosed with SMA Type 1 in the last couple of months. She urged Biogen to offer a way forward to ensure access for Maryam and called on the Government and NICE to play their part as well towards an agreement for access to Spinraza.

We, alongside SMA UK and Treat SMA, are continuing to put pressure on Biogen, NICE and NHS England to speed up their discussions to ensure that Spinraza is available on the NHS across the UK at the earliest possible opportunity and without any further delays.

Support from MPs

We greatly appreciate the interventions from Mary Glindon and Lyn Brown in the debate. We value their support and the backing of all the MPs we are working with who are pressing Biogen, NICE and NHS England to be as flexible as possible in their negotiations in order to achieve the positive conclusion of a Managed Access Agreement.

For more information about contacting your MP on access to Spinraza, please get in touch with Jonathan Kingsley at j.kingsley@musculardystrophyuk.org

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