Tina will fight for drug funding

Tina (42), of Bramley, and daughter Sophia-Jane Crouch (20), both suffer with tuberous sclerosis (TSC), which causes mainly non-cancerous tumours to develop in the brain, lungs and other organs.

NHS England vowed to develop a policy for the use of the drug everolimus, which is used to treat brain tumours caused by TSC.

The Tuberous Sclerosis Association said the NHS “broke that promise” and Tina has said she will fight the decision.

She said: “We’re really disappointed with the NHS decision. The drug costs around £3,000 per treatment.

“The condition creates tumours in your brain, behind your eyes and other organs. 

“The drug helps keep them under control but, more importantly, it helps keep you alive.

“It’s as simple as that. Without that drug you can die.”

Tina said she was currently on a trial of the drug but this will end in around three months time.

She added: “I have been fundraising for the Tuberous Sclerosis Association and trying to raise awareness of the condition for years because it is quite rare.”

Tina said she had spoken to Rother Valley MP Sir Kevin Barron, who wrote to NHS England voicing his concern about the decision.

Sir Kevin said: “I was very worried when Tina first contacted me about her experience with NHS England. 

“I have written to Simon Stevens, NHS England chief executive, to ask for an explanation of why a drug already approved for use is being withheld.”

But a spokesman for NHS England said no final decision had been made on funding everolimus for this condition.

He added: “Everolimus for SEGA was within a group of four treatments out of 22 where the clinical benefit was relatively low and the cost was relatively high, and the amount of funding that was available for new treatments this year didn’t stretch to that treatment to cover that group. 

“We have now asked the manufacturer to resubmit their best prices.”

People with the condition can make “individual funding requests” via their clinicians, he added.