Case study – The Price family

Dylan Price, 7, has Tuberous Sclerosis Complex and two brain tumours (SEGAs) which are growing and will prove fatal without treatment.

Dylan, as well as the SEGA growths, also suffers with epilepsy. Despite this he has developed into a wonderful, sociable, happy little boy who attends
mainstream school.

He has received Everolimus since March 2016, funded by NHS England through an Individual Funding Request (IFR). This is due to be reviewed every 6 months.

A brain scan four months after he started Everolimus has revealed that Dylan’s SEGAs have both reduced in size by 25%, and apart from a few mouth ulcers,
has had no side effects from the medicine.

But Dylan’s parents condemn NHS England Individual Funding Request route to securing Everolimus as ‘bureaucratic, expensive, wasteful and life-threatening’.

Father Stuart, 40, said; ‘Dylan had a brain scan at 9 months old and two SEGAs were visible but small and not troublesome. Another routine brain scan in
August 2015 was performed but we hadn’t expected any changes to happen because the tumours are so slow growing. It was therefore a shock for us to
be told by Dylan’s neurologist that we would need to meet the neurosurgeon and plan brain surgery as soon as possible to prevent further problems.’

SEGAs can be treated in two ways; surgical removal or medically using the new drug Everolimus. The risks of brain surgery are bleeding, stroke and risk
of being left with permanent disability. This was very distressing for the Price Family, knowing that surgery would be very traumatic for Dylan and
high risk.

Says Stuart: ‘The neurosurgeon told us that the boundaries between the SEGA tumour and healthy brain tissue are blurred so complete removal of the SEGAs
would almost certainly result in the loss of healthy brain tissue too. Furthermore, as they cannot be fully removed through surgery, they would almost
certainly grow back and that Dylan would require further surgery. This was a very distressing prospect for all of us.’

Dylan’s neurologist completed an Individual Funding Request for Everolimus for Dylan in December 2015.

‘It was 3 months after the scan before the IFR was submitted,’ says Stuart, an air traffic controller. ‘But I do not blame the neurologist at all. She
was fully behind it, but clinicians have so many demands made upon them and are under so much constant pressure. An IFR is an immensely bureaucratic
and wasteful process requiring at least a whole day’s work by a clinician making an application just for one patient.’

Two months later, in February 2016, the Prices received the news that NHS England has rejected the application.

‘This was, again, immensely stressful,’ says Stuart. ‘Dylan appeared well, but we knew that the tumours in his brain were growing and he was, in fact,
in a life-threatening situation which could change for the worse at any moment.’

A second, follow up IFR was made, supported by the TSA, and submitted that same month, and in March 2016 NHS England then approved funding for Everolimus
for Dylan, on a six month rolling basis.

‘It was a huge relief,’ says Stuart. ‘And Dylan is doing well. The tumours have shrunk by 25% already and apart from a few mouth ulcers, he has had no

‘The alternatives are awful to think about. Surgery, as being very expensive for the NHS, would mean Dylan may suffer disability and therefore not be as
able as he is now. And it won’t solve the problem, as he would require further operations when the SEGAs re-grow.

‘We simply do not understand why families of children with TSC-related SEGA are forced to go through the ordeal of an IFR when NHS England knows that Everolimus
works, works incredibly well, is much cheaper than surgery, and does not waste the very valuable time of clinicians who are forced to fill in huge
forms to apply for this treatment.

‘We are backing the TSA’s #Fight4Treatment campaign because we feel that this madness has to end now.’

Key facts

  • Without surgery or Everolimus Dylan will suffer brain swelling followed by death.
  • The high risks of brain surgery are unnecessary when there is a proven medical alternative. As well as high costs of brain surgery, further and substantial
    costs to NHS England will include lifelong medical, psychological and social care for him and his family due to the profound impact of his new
    disabilities resulting from surgery. Not counting the huge emotional toll on the child and his family.
  • With Everolimus – which costs less than kidney dialysis per patient per year – Dylan’s health improves as the SEGAs shrink. No surgery costs. The child’s
    – and family’s – outlook improves vastly.

Case study timeline:

August 2015: Routine brain scan reveals 2 SEGA tumours which Dylan has had all his life due to Tuberous Sclerosis Complex are suddenly growing at a rapid
and life-threatening rate.

Family asks neurologist if she will apply for funding for Everolimus for Dylan, as the only alternative to surgery, using the IFR route.

December 2015 After completing hugely time-consuming application form Dylan’s neurologist submits IFR application for Everolimus to NHS England.

February 2016 NHS England turns down IFR funding request for Everolimus for child.

February 2016 Neurologist and family repeat application.

March 2016 NHS England approves 6 months worth of funding for Everolimus for Dylan.

Dylan starts to receive drug.

August 2016 Brain scan reveals Dylan’s SEGA tumours have shrunk by 25%.