“We know the burden placed on families”: Why we’re helping fund medical cannabis for other epilepsy patients

A new charity will help fund private prescriptions for medical cannabis patients with severe epilepsy.

The families of four people living with severe forms of epilepsy, have launched a non-profit initiative to help relieve the burden of private prescription costs.

Intractable Epilepsy will fundraise to provide financial support for children and adults with drug-resistant epilepsy, who are forced to spend thousands each month on their medication.

Medical cannabis was legalised in November 2018, but a recent report by the Advisory Council for the Misuse of Drugs (ACMD) confirmed that less than five prescriptions have been issued on the NHS in the last two years.

Loved ones of those living with conditions such as intractable epilepsy [when seizures are so severe they can’t be managed by conventional medication] spend an average of £1,800 a month on cannabis medicines, leaving them facing huge financial pressures.

A Drug Science study published last week into the impact of cannabis, in ten patients with severe epilepsy, found that they had spent a total of £20,000 a year on their medication.

The charity has been co-founded by Graham Levy, who with his wife Elaine was forced to sell their home to pay for their 27-year-old daughter Fallon’s prescription.

Also behind it is Karen Gray, whose son Murray, eight, has been seizure-free for 18 months on medical cannabis, Joanne Griffiths, mum of 11-year-old Ben who has seen huge improvements in his condition since obtaining a prescription last year, and Margi Huxley, carer for her sister Helen, who was refused Epidiolex by an NHS neurologist.

Launched following the two year anniversary of the law change, Intractable, will aim to help other families across the UK in the same desperate circumstances and is looking for initial donations to help get it off the ground.

“Our aim is to raise enough funds to relieve the financial burden of private prescriptions on those who suffer with intractable epilepsy, due to medical cannabis not yet being available on the NHS,” said Joanne, on behalf of the families.

“We know the huge financial burden put on families to find the thousands of pounds needed to fund cannabis medicines every month and we want to help others like us.

“The more money we raise the more people we can support.”

It comes in the same week that Sapphire Medical Foundation – which provides financial support for patients to access prescriptions – became the UK’s first medical cannabis charity, following a landmark decision from the Charity Commission.

Intractable will offer a similar application process once enough funds have been secured to offer necessary support.

“We welcomed the news that the Sapphire Foundation has successfully registered with the Charity Commission, which should pave the way for our charity to do the same,” said Joanne.

“We will have an application system in place once we have raised enough money to offer the much-needed financial support.”

Please support! #Intractable #Epilepsy destroys lives, & it is our mission to make these lives better both medically & financially, for the sufferers and their families.

Please click the link to support this great cause: https://t.co/Kq8Fl4zAIf#FullExtractMedicinalCannabis pic.twitter.com/PG8aVW9RSN

— ManningGlobal (@ManningGlobal) December 15, 2020

The charity has been supported by Pothecary Witham Weld Solicitors and international financial advisors, Manning Global.

Joanne added: “We would like to say a huge thank you to Michele, and Zainab at Pothecary Witham Weld Solicitors who helped us set up the charity, and Rachel and Matt from Manning Global for their support to raise funds we need to be able to launch.”

Find out more and donate to Intractable Epilepsy here