When Everolimus was licensed for the treatment of TSC more than 2 years ago, no-one imagined that years later we would still be fighting for access in the face of a near total failure in NHS funding in England.
Over the past year and a half, the TSA has been supporting the development of a service specification and prescribing policy for submission to NHS England. Because of delays and inefficiencies in the work programme of NHS England, it is now entirely possible that no decision will be made until the financial year 2017/18, leaving TSC patients and their doctors with no way to access this medicine.
With only weeks to go before the general election, we need your help to persuade the present government to introduce interim funding until NHS England makes its decision.
If you have written to your MP already, please write again. Remind them of your earlier letter and ask them to support the Early Day Motion tabled by Greg Mulholland. MP (EDM 819). To read the EDM, which seeks support from MPs for the introduction of interim funding, click HERE
If you haven’t already contacted your MP, please do so now. You can find details of your MP and how to write to them HERE
When writing to your MP don’t forget to:
• Ask your MP to support EDM 819 – copy and paste the link to the EDM listing into your letter.
• Say who you are and where you live
• Give your contact details
• Tell your MP why access to Everolimus for TSC matters to you
• Mention the TSA
We’d be grateful for sight of any responses you receive.
