Elaine Levy discloses that she had to sell her house to afford private prescriptions for medical cannabis to treat her grown daughter’s epilepsy.
Relatives of individuals with chronic diseases are urging the government to allocate more funding to medical cannabis research.
End Our Pain, an organization advocating for medical cannabis, plans to deliver a letter to Health Secretary Steve Barclay on Monday, requesting £1.4m be dedicated to researching the medication.
Medical cannabis, which advocates argue can treat neurological disorders, chronic pain, and conditions like epilepsy, became legal in the UK in 2018.
However, up until now, less than five individuals have obtained an NHS prescription, forcing others to seek private prescriptions or even purchase drugs on the black market.
Elaine Levy had to sell her four-bedroom house and move into an apartment due to the £2,200 monthly cost of medical cannabis for her adult daughter’s epilepsy treatment.
“Ultimately, I couldn’t maintain the mortgage payments; it was like paying more than a mortgage, so I eventually sold my house.
“I’ve made significant sacrifices for this, but when you witness your child transform from being heavily medicated to a girl who is alert, no longer requires a wheelchair, and isn’t always calling ambulances, how can you possibly go back?”
NHS doctors’ reluctance to prescribe cannabis-based products stems from insufficient evidence regarding quality, safety, and clinical and cost effectiveness.
Dr. Simon Erridge, head of research and access at Sapphire Medical Clinics in London, stated: “Currently, in those areas where we’ve seen the most promise—such as mental health, chronic pain, sleep disorders—we haven’t had the right kind of research that can persuade regulators and clinicians in the NHS to prescribe it on a population basis, across all people with those conditions.
“Those trials, which we call randomized control trials, involve comparing medical cannabis to a placebo or a gold standard treatment.”
For Elaine, the absence of such research is extremely frustrating.
She stated that Matt Hancock, when he was Health Secretary, promised funding would be provided, but they have been consistently disregarded by the government in the years since:
“We were promised an observational trial and a randomized control trial, so we could actually help the children who are already on medical cannabis, and also gather data for those who aren’t,” she added.
“We have never seen the money, and we haven’t had a meeting with the government since. They have essentially ignored us.”
While Elaine lost her house due to the costs of obtaining the medication privately, others resort to purchasing it on the black market.
When Hayley Lanciano’s spouse Neil was given just weeks to live with terminal brain cancer, she attempted to alleviate his pain by illegally acquiring medical cannabis.
“He was having difficulty walking and leaving the house at the time, and that was when they informed us he only had six to eight weeks left to live, so we were desperately grasping at straws, wanting to do more and provide him with some quality of life.”
She continued, “You feel very isolated and alone. You have to conduct your own research. You just hope and trust that what you’re purchasing is what they claim it is.”
CHECK THIS: The Benefits of Medical Cannabis for Treating Chronic Pain
