association e?pilepsie canna med comp

Epilepsy: New UK charity launched

Newly launched, Intractable, is the first UK charity dedicated to helping children and young adults with epilepsy access medical cannabis treatments. Not everyone can afford the costs of privately prescribed medical cannabis and therefore cannot treat themselves. With loved ones relying on these private prescriptions to manage epilepsy that is resistant to other treatments, a group of parents and families have come together to launch a charity to help fund these costs.

A revolutionary initiative

The first autonomous and independent charity, Intractable, has been set up to raise funds to help families who have been prescribed medical cannabis by their GPs and cannot afford to pay.

There are 180,000 people in the UK with intractable epilepsy, which means that their bodies do not respond to conventional treatments and 1,000 people die each year from the condition. Reducing the risk of death and sudden unexpected death from epilepsy (SUDEP) involves reducing the number of seizures, which medical cannabis can do. Indeed, according to a recent study in Drug Science, the plant can reduce seizures by over 80%.

The more funds raised, the more people saved

While it was legalised in November 2018, medicinal cannabis has only had three NHS prescriptions in four years. As a result, dozens of other children, addicted to cannabis to reduce their seizures, are forced to go through private clinics to get it. This is costing them up to £2,000 a month, which is enormous.

There are even extreme cases where parents have been forced to sell their own house, raise money and borrow money from their relatives. This is what happened to Graham Levy, father of Fallon, 28, who has a rare form of epilepsy called Lennox-Gastaut syndrome. He sold his house in 2019 to pay for cannabis prescriptions.

It is to alleviate such problems that Intractable was founded. The vice-president of the association, Joanne Griffiths, also has resistant epilepsy and has managed to greatly improve his condition with medical cannabis. He has effectively obtained a private prescription as the NHS refuses to issue such prescriptions until clinical trials have been carried out.

Joanne Griffiths said that it took them over a year of hard work and struggle to get to this point. Their desire is to be able to support families like theirs who are struggling to afford the epilepsy drug. "Today, we will finally be able to raise funds to help them meet these costs," he added.

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