Action For Access

25 October 2019

Genetic Alliance UK have launched their Action For Access campaign to improve access to potentially life-changing treatments for people affected by rare diseases (including SMA). In their report, they detail the problems in the system, including the two fundamental problems that are not being addressed - money and unrealistic expectations from decision-makers.

The report also highlights the changes Genetic Alliance UK want to see implemented in order to benefit the lives of those with rare diseases, and their family and carers. We are backing their report and supporting their campaign, working together and calling for #ACTIONFORACCESS

There are lots of ways you can support the Action for Access campaign, including by signing up to receive updates and sharing information on social media - you can use the media tools here to create personalised messages for your social media.

You could share messages such as:

  • Around 3.5 million people in the UK will be affected by a rare disease at some point in their lives – this includes SMA. That’s why we want #ACTIONFORACCESS
  • The 110 weeks it took for NICE to publish guidance on nusinersen for 5q SMA was unacceptable. That’s why we demand #ACTIONFORACCESS
  • The nusinersen Managed Access Agreement for those with SMA is a great step forward but currently excludes others who could benefit from this life-changing treatment. That’s why we want #ACTIONFORACCESS
  • Every day matters for someone with a progressive condition. That’s why we want #ACTIONFORACCESS

We’ll be sharing these and others so that more and more people get to hear about and support the campaign. Please tweet / share and support.

There will be more released about this campaign in the coming weeks.

Read the report and find out more