It’s time to #Fight4Treatment

Having strongly suspected that access to Everolimus was poor in the UK, the TSA filed Freedom of information requests to find out how many individual funding requests had been received and how many approved over the past 12 months. We now know that fewer than 5 people in the UK have been granted NHS-funded access to Everolimus for the treatment of brain SEGA and AMLs via the individual funding request route. This means that the majority requests put forward by doctors for access to Everolimus on clinical grounds have been rejected by the panels who decide whether the NHS will pay for the treatment.

Please join our campaign to highlight the near-complete failure in NHS access to Everolimus by writing to your MP.

By writing to your politician you can help to raise awareness of Tuberous Sclerosis and highlight the unfairness of the situation.  Your politician can raise the issue in the House of Commons, Scottish Parliament or Assembly (according to where you live) or write to a government minister. 

If you (or the person you care for) have had an application for NHS funding of Everolimus turned down, despite the recommendation of your doctor, your local politician may agree to act directly on your behalf in relation to your particular case for access.

When writing to your MP don’t forget to:

  • Say who you are and where you live
  • Give your contact details
  • Briefly outline why access to Everolimus for TSC matters to you
  • Mention the Tuberous Sclerosis Association
  • Say what you would like your parliamentarian to do
  • If you have been denied access despite your doctor’s recommendation make sure you include key documents relating to your efforts to gain access.

We’d be grateful for sight of any responses you receive. 

To find out who your parliamentarian is and to send an electronic form visit the following website and enter your postcode:

For more information on Everolimus visit the European Medicines Agency

Or read our fact sheet on Treatments and Therapies here

Use #Fight4Treatment when talking about the action you’ve taken and to keep up to date with campaign news on Twitter and Facebook


Got a question about the campaign? Contact our CEO, Jayne Spink