NHS will pay for life changing epilepsy drug

The mother of a young girl with severe epilepsy is 'terrified' of what will happen to her daughter when a vital treatment is taken away. Jessica Holt and daughter Darcy.
The mother of a young girl with severe epilepsy is 'terrified' of what will happen to her daughter when a vital treatment is taken away. Jessica Holt and daughter Darcy.

The mother of a young girl with severe epilepsy has been told a life-changing medicine to help her daughter will be funded by the NHS.

Darcy Holt, six, suffers from tuberous sclerosis (TS) - a condition that means she develops tumours that lead to illnesses including epilepsy.

Jessica Holt with daughter Darcy.

Jessica Holt with daughter Darcy.

For several years she has been on a trial for the medication Everolimus, which her mother Jessica said reduced the number of seizures she has a day from around 80 to just two or three.

In August it appeared NHS England was set to remove funding for the drug for people with Darcy’s condition and she could be “back to square one”.

But now the health service has confirmed it will fund the treatment in cases where patients’ conditions have not responded to standard anti-epilepsy medicines. Jessica said: “It is absolutely amazing to know that others will be able to get to benefit from everolimus as my daughter has over the past three years for her epilepsy.

“Hopefully many more children and adults living with TSC can now get access to this treatment, which might make their quality of life a lot better.”

The Tuberous Sclerosis Association charity has campaigned on behalf of families for the treatment to be funded.

TSA chief executive Louise Fish says: “Around 70 people in England are currently prescribed everolimus for TSC-related kidney and brain tumours.

“NHS England estimates that a further 300 people in England will benefit from treatment with everolimus for TSC-related refractory epilepsy.

“We’re delighted that NHS England has decided to fund this life-changing and potentially life-saving treatment from April 2019 onwards.

“We’ll be working with TSC clinics across England to help them get ready to prescribe this drug to more people who can benefit from it.”

Visit www.tuberous-sclerosis.org for more information on the condition.