The mother of a desperately ill woman who sold her home to pay for her daughter’s medicinal cannabis has urged the Government to make it available on the NHS.
Elaine Levy, from Bushey in Hertfordshire, said she and husband Graham are simply unable to afford the around £2,500 monthly bill for the “life changing” drug, which severely reduces daughter Fallon’s seizures.
Fallon, 27, has a rare form of epilepsy known as Lennox-Gastaut syndrome which, if untreated, leaves her suffering around 200 seizures a month.
Her current medicine, Bedrolite, reduces it to around five per month, and means she has greater independence, increased speech, and no longer needs a wheelchair.
Families of children with severe epilepsy were given hope of a breakthrough two years ago when prescriptions for medicinal cannabis were legalised.
Concerns over the future supply of the treatment from mainland Europe following Brexit were soothed when a Dutch company last month announced plans to begin manufacturing in the UK later this year.
But the Levys say the issue is over cost, not access, and have urged the Government to intervene.
Mrs Levy, who sold her home to pay for treatment, told the PA news agency: “Once I started this journey and saw the effects on my daughter there was no going back.
“We had to start finding the money ourselves, each and every month, £2,500.
“Eventually we got to the stage where we couldn’t afford it.
“I made the decision a year ago to sell my home so I could take money out of there and keep it separate so I have a pot to keep paying for Fallon.
“The thought of going back to how she was before is not an option.
“That money isn’t going to last forever, so I need Boris Johnson to give us the NHS prescription so we can have a normal life.
“At the moment I don’t sleep at night and I don’t know what I’m going to do each month – I just can’t carry on.”
MP Sir Mike Penning raised the issue in the Commons earlier this week, urging the Prime Minister to “do everything possible” to ensure parents do not have to “beg and borrow from their families and remortgage their homes” to afford medicinal cannabis and that lives are not lost.
Mr Johnson vowed to “resolve the issue” with the help of the Department of Health and Social Care.
Mrs Levy said the medication means her daughter “comes alive – she smiles, she giggles, she goes out”, and said she would hate for the treatment to come to an end.
Mr and Mrs Levy were outside Downing Street on Friday in an attempt to draw attention to the plight of their daughter, and that of around 100 other young people who they believe would benefit from the treatment being made available on the NHS.
“I’m living in hope every single day that he (Mr Johnson) is going to do the right thing,” Mrs Levy said.
“It needs to happen today. The money will run out this year.
“I can’t envisage what it would be like when I literally don’t have a penny left and Fallon is ending up in hospital, having to take the wheelchair out again.
“Will it take a child to die before Boris Johnson gives us prescriptions?
“If I had the opportunity to look the Prime Minister in the eyes, I would say: ‘Please Mr Johnson, you have children like I do, please help as a father and me as a mum, to keep my daughter well.’”