Wait for treatment ‘shameful’

William Davis with his parents Paula and Nick and little sister Jessie.
William Davis with his parents Paula and Nick and little sister Jessie.

The family of a teenager with a rare genetic condition have spoken of their relief after he was finally given vital medication to treat a life-threatening tumour.

William Davis, from Bury St Edmunds, was born with Tuberous Sclerosis Complex (TSC), a disorder which causes mainly non-cancerous tumours to develop in different parts of the body.

Last year the life of the 16-year-old, who is currently featuring on Channel 4’s Born To Be Different series, was put in jeopardy by a large kidney tumour which threatened a renal bleed.

To reduce the tumour, William needed the drug Everolimus, but although the treatment is readily available to TSC suffers in most countries, his family faced a fight with NHS England to secure the necessary funding.

“It’s disgraceful and shameful what NHS England have put us through,” said William’s mum, Paula, who sufferes from multiple sclerosis. She appeared on BBC Breakfast earlier this week.

“There are other families who are still fighting –  for their children’s lives –  to access a licensed medication which has been proven to be effective and which is available so widely elsewhere in the world,” she said.

In April, 2015, Great Ormond Street Hospital requested funding for William, who has severe epilepsy and autistic spectrum disorder, to be prescribed Everolimus.

It was rejected as NHS England does not offer the treatment to patients in England unless there is a critical or urgent need. NHS officials claimed William’s case was not “exceptional”.

As the tumour grew to 7cm, a fresh application was made by doctors – and granted in August.

“It was a mega relief,” said Paula, 45, who lives with husband Nick and William’s younger sister, Jessie, 10.

“William still has TSC – nothing will change that – but the threat of a catastrophic renal bleed is receding. He is calmer and happier and the tumours on his face are also much less pronounced.”

Paula is backing the Tuberous Sclerosis Association’s #Fight4Treatment campaign for Everolimus, which costs £30,000 a year per patient.

NHS England is due to make a decision regarding funding for the treatment later this month.

William’s story continues on ‘Born To Be Different’ on Tuesday at 9pm.