An Edinburgh, Scotland mom fears her son’s life, and her family’s financial situation are at risk when their pediatric neurologist retires later this year.
Karen Gray believes the retirement leads to the loss of access to a medical professional who best understands the effects of different medications on her son, Murray Gray. Murray, who suffers from “Doose Syndrome’ would suffer hundreds of seizures a day before using medical cannabis. In addition to the seizures, he suffers adverse reactions from anti-epileptic drugs.
With the retirement of the doctor, the Gray family will have to rely on a cannabis clinic to receive the treatment used to alleviate the symptoms of his epilepsy. However, Gray and another specialist say the problem could be avoided if those being treated with cannabis medication could get their prescriptions from NHS doctors.
Cannabis-based medicines including oils, vape products and flower were made legal in November of 2018, but cannabis-based medicines can only be prescribed by a specialist and not regular doctors. Cannabis-based medicines are also not reimbursed for their cannabis purchases, meaning all cannabis medicine are essentially paid for out of packet. The Gray family is worried the price may increase even though they already pay around £1,300 a month.
Murray’s pediatric neurologist Dr. Adelaida Martinez to the secretary of state for health and social care to ask that the children under her care go to their local GPs.
“I am a private consultant pediatric neurologist practicing at The Portland Hospital, and have been prescribing CBD medication to a group of children with intractable epilepsy since December 2018. I have done this on compassionate grounds as these children do not have the two defined types of epilepsy that enable them to be prescribed the licensed Epidolex through the NHS, or this medication when taken has not helped reduce their seizures. Without access to their unlicensed CBD medications, many of these children would have been left fighting for their lives,” Dr. Martinez said.
In a response to the letter, the Health Department said it felt for the families affected, but cannabis medicines will be approved for funding when they are proven safe and effective.
The Gray family previously attempted to get the price of the drug lowered with Murray’s brother, Dean, writing a letter to First Minister Nicola Sturgeon urging for the politician’s help in making medications like the one his brother takes more affordable. The family was disappointed when Sturgeon responded that she was unable to help as all medications available on the NHS must be proven safe first.
“In order to prescribe medicines like those Murray currently takes on the NHS in Scotland, we need stronger evidence of their safety than we currently have,” Sturgeon’s letter read. “Just now, specialist doctors in the NHS who treat children with epilepsy and similar medical conditions aren’t confident enough about prescribing cannabis oils, including Bedrolite, until there is better evidence available following a clinical trial.”
The move followed a similar attempt in the U.K. where nine-year-old Thomas Braun hand delivered a letter to the U.K. Prime Minister asked him to help get his brother’s cannabis medication prescribed on the NHS to make it more affordable.
In a bid to make medical cannabis more available on the NHS, hundreds of patients have been prescribed cannabis in a pioneering scheme. The Twenty21 project subsidizes costly cannabis treatments and aims to create the largest body of evidence for medical cannabis in Europe and convince lawmakers to make it available on the NHS. Since January, over 1,400 people have signed up for the scheme run by the charity Drug Science.
