Parents all around the world have found solace in cannabis for treating a number of conditions, and one Edinburgh, Scotland mom has taken things a step further, with the help of other parents looking to treat their children’s intractable epilepsy. Karen Gray’s son, Murray, has a rare form of intractable epilepsy, Doose syndrome, and after facing the high medical cannabis prescription costs, Gray has launched a new charity, Intractable, aimed to help families and their children with their own private medicinal cannabis costs.
According to an Edinburgh Live report, Gray has fought for years to have her son’s medical cannabis prescription paid for by the country’s National Health Service, the publicly funded healthcare system in Scotland. In treating Murray’s epilepsy, Gray’s family has faced more than £14,000 in yearly costs, nearly $17,000 USD.
Murray was diagnosed with Doose syndrome in 2017 and experienced up to 100 seizures a day. There was a period of time when Murray was confined to hospital for the better part of a year.
Gray initially smuggled Bedica and Bedrolite oils from the Netherlands and found they worked wonders for Murray, allowing him to lead as normal a life as possible. Eventually the family was able to access the medication through the U.K. government, but the costs began to severely impact their finances, even though ceasing the treatments would once again put Murray’s life at risk.
Gray says that Intractable is the first charity of its kind, meant to step up where the U.K. government has failed, in regard to cannabis medicine and the costs associated.
The Intractable website reads, “Full Extract Medicinal Cannabis can work where Pharmaceutical treatment has failed, although legalised in 2018 it is not yet fully available on the NHS. Assisting with the cost of private prescriptions from Neurologists is one way we can assist the families of these sufferers. Until such a time when Full Extract Medicinal Cannabis Oil for the treatment of drug resistant epilepsy is more widely available on the NHS, the Charity ‘INTRACTABLE’ will aim to raise funds to pay for Private Prescriptions for those who qualify.”
Gray, Joanne Griffiths, Graham Levy and Emily Carkeet make up the crew behind the charity, working tirelessly with other families to secure two U.K. government-backed clinical cannabis medicine trials. Those behind the charity are also parents who know the challenges of paying for this essential medicine firsthand.
The website points to the fundraising efforts parents embrace to pay the “vast cost” of cannabis medicine each month, and Gray notes, “This is why I am delighted to be involved with Intractable. I want to be able to help fund the costs of these life saving medicinal cannabis oils.”
She adds, “It gives us great relief to know that, as a registered charity, we can help families in the same situation as ourselves. We now need to focus on raising a lot of money to make this a reality.”
The hope is that Intractable will help to tackle the crisis surrounding medical cannabis access for children and young adults with intractable epilepsy.
The law surrounding medical cannabis prescriptions in the U.K. was changed in 2018, allowing for private prescriptions and offering a better quality of life to a multitude of citizens since. According to Intractable, 180,000 people in the U.K. suffer from intractable epilepsy, and 1,000 people in the U.K. die yearly from the condition.
The charity also notes that reducing the number of seizures can be life saving, nodding to a recent study that showed medicinal cannabis has the ability to reduce seizures by more than 80% when used to treat intractable epilepsy.
Intractable Chair Graham Levy said, “As long as the patient has a prescription written in accordance with the law and the relevant NICE and GMC guidance we will be able to help them, subject to having charity funds. As a recognised charity, donors, sponsors and funders can have confidence in our charitable aims. We hope that this will be a springboard for our fundraising activities so that we can help as many children as possible.”
