Julian Hails Tuberous Sclerosis Treatment Campaign Success
December 19, 2016
Julian is absolutely delighted to report that NHS England have recently agreed to routinely fund Everolimus for sufferers of inoperable brain tumours caused by Tuberous Sclerosis Complex (TSC).
TSC is a life-threatening genetic disease which can lead to the growth of benign tumours throughout the body, including in vital organs such as the heart, kidneys, lungs and brain. Tumours in the brain can lead to severe epilepsy as well as having a huge impact on intellectual development in young sufferers. In 2011 the highly effective drug treatment, Everolimus, was approved in the EU for the treatment of TSC-related tumours of the brain.
NHS England announced in the summer that it would not be funding this treatment, but has now reversed its position following a review of funding for specialised treatments.
Julian led a campaign in Parliament with Greg Mulholland MP to lobby the Chief Executive of NHS England, Simon Stevens, to make this incredibly effective treatment available to patients who desperately need it.
He launched a cross-party joint letter which received support from 42 MPs right across the country.
Speaking after the announcement Julian said, “I am overjoyed by NHS England’s decision to fund Everolimus for patients with SEGA. The credit must go to the families affected by Tuberous Sclerosis, the supporters and campaigners, as well as the Tuberous Sclerosis Association, who have all worked so hard for this fantastic result.
“This issue was first raised with me by my constituent, Nicholas Dale, whose son Sam suffers from TSC, and I had the privilege of meeting them in Westminster. This news will be a ray of hope for families who are affected by this disease, and I am absolutely delighted with this outcome.”
