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.
Yesterday the TSA joined campaigners and families affected by Morquio Disease and Duchene Muscular Dystrophy in a “flash protest” outside the Houses of Parliament. The protest, which took place during Prime Minister’s Question Time, called on the PM to stop letting NHS England’s bureaucracy getting in the way of access to medicine.
A number of MPs of all parties dropped by the protest to give their support- including Annette Brooke, Fiona MacTaggart, Russell Brown, Paul Farrelly, Alec Shelbrooke, Andrew Bingham, John McDonnell, Virendra Sharma, Mark Durkan, Sir Bob Russell, Dave Anderson and Vince Cable. 52 MPs in total have signed a parliamentary motion backing the campaign.
Greg Mulholland MP, who is leading the cross-party multi-organisation campaign, then questioned Prime Minister David Cameron for an unprecedented third time in just fourth months, and after PMQs took MPs to drop off a letter at 10 Downing Street to add further pressure on David Cameron. In his response Mr Cameron failed to recognise the needs of children and adults with TSC – believing that there are no people in critical need left without treatment.
The Government rises on 30 March for the general election. We urgently need your help to push for access to funding:
Write to David Cameron using this ONLINE FORM
Tweet David Cameron @David_Cameron
Include @UKTSA in your tweet
Include the hashtags: #FundOurDrugsNOW #Fight4treatment.