Tim Loughton MP has joined a cross-party group of MPs, led by Greg Mulholland and Julian Sturdy, in writing to NHS Chief Executive Simon Stevens. The letter urges Mr Stevens to make the Everolimus drug available to those suffering from inoperable brain tumours caused by Tuberous Sclerosis Complex (TSC).
TSC is a potentially life-threatening genetic disease that is present from birth and causes non-cancerous tumours to develop in different parts of the body. The tumours most commonly affect the skin, kidneys, heart, eyes, lungs and brain which results in various health problems.
In 2011, Everolimus was approved for use on an EU-level to treat brain tumours, but despite a written guarantee that it would be made available on NHS England by this April, this has not happened. If these conditions are left untreated, patients suffer from neurological deterioration, with most dying within two years. However, with this treatment, up to 95% go on to live long, healthy lives.
In their letter, MPs express concern about the prioritisation process and how it disadvantages medicines for very rare diseases.
NHS England’s Clinical Priorities Advisory Group is reconsidering decisions on prescribing policies that were looked at in June. If the decision not to approve Everolimus isn’t overturned, MPs including Greg will call for an immediate and thorough reassessment of the draft prescribing policy for Everolimus through a fairer and more transparent process.
Commenting, Tim said:
“Everolimus should have been approved in April for treating brain tumours. Unfortunately NHS England then changed the way it decides which drugs to prioritise for funding, and drugs for ultra-rare diseases were unfairly disadvantaged. Everolimus, as a result, was then not approved.
“Just 20 young people a year develop these brain tumours and we must not leave them and their families to suffer. The campaign has received support from many MPs across all parties. I was pleased to co-sign the letter to NHS England’s Chief Executive, Simon Stevens, urging him to consider the decision that was made about Everolimus, and I hope he will deliver the best Christmas present these children and families want.”
You can see the full letter sent to Simon Stevens attached below.