NHS England devastating U-turn on drug treatment for brain tumours
Last year NHS England promised to develop an in year policy for the use of Everolimus to treat SEGA (brain TSC related tumours). This month, NHS England broke that promise and is saying this drug is ‘unaffordable’ for patients with inoperable SEGA. Each year we estimate that this will affect 20 children and young people. It is absolutely critical that they have access to this medicine.
As way of comparison:
|The NHS has approved the use of Eculizumab for another rare disease, the most expensive drug in NHS history has been made freely available to all that need it. Costing a projected £82 million pounds to treat patients per year, the annual cost of prescribing this treatment is 200 times more then to provide Everolimus to TSC patients with inoperable SEGA.|
|It costs less to prescribe one person with Everolimus for a year, than it does to provide kidney dialysis for anyone experiencing kidney failure. Both treatments are potentially life-saving, but kidney dialysis is freely available on the NHS for anyone that needs it.|
This is deeply unfair and we must do all we can to protect the lives and health of young people with TSC.
Here’s why we hope you join us in being outraged at this latest decision:
We must not allow NHS England’s decision to go unchallenged. NHS England’s policy not only affects our community, but also that of other people with rare diseases. We urgently need your help.
Here’s what you can do:
TSA LETTER TO MP (17 KB)
If you are concerned that this decision will affect you or the person you care for with TSC, please contact your TSA Regional Adviser
PLEASE NOTE THAT THIS DECISION ONLY AFFECTS PEOPLE WITH INOPERABLE SEGA IN ENGLAND. THIS DOES NOT DIRECTLY AFFECT ANYONE IN WALES, SCOTLAND AND N.IRELAND.