It's Rare Disease Day on February 29th. Below you can see the official video, or visit their site HERE for more information
Please support the fight for treatment in England
In November 2014 we launched our Fight4Treatment campaign for access to Everolimus. At the beginning of July 2015, and as a result of our campaign, NHS England committed to the development of “in year” policies for TSC. A positive decision would have made Everolimus routinely available on the NHS in England.
As we start 2016 we are still waiting for NHS England make a decision – along with a backlog of people who have had their funding requests turned down because their need for treatment has been judged to be ‘not sufficiently urgent’.
Elsewhere in the UK, the situation is better. In Wales, a two-year agreement which started in September 2015, sees funded access to everolimus for brain (SEGA) and kidney (AML) tumours associated with TSC. In Northern Ireland, Individual Funding Requests are going through with six approved to date, and no refusals to our knowledge. And in Scotland the Innovative Medicines Fund is being used to fund the prescription of Everolimus.
However in England, the situation remains bleak. So please take a few minutes out of your day to write to your MP and let them know about the terrible impact that NHS England’s decision-making delays are having on people affected by TSC. And if you have already written to your MP, thank you very much indeed – and please write to them again. Remind them of your earlier letter and ask them to support our call for access to medicine.
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 www.writetothem.com
When writing to your MP please don’t forget to:
• 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
Finally, please also let us know when you write to your MP – we’d be grateful to see any responses you receive as this information helps us to continue campaigning for a positive decision to be made, fast. And you can tell us about your experiences at any time on: