Smuggling Medicine For UK Sick Kids Common For Parents
Legalization may have come to the UK, but access and expense makes smuggling medicine a viable solution.
Last year, the UK legalized medical cannabis to great fanfare. The change came after widespread media coverage about parents forced into smuggling life-saving medicine for their children. Access to cannabis treatments is still sorely lacking and very expensive, but the situation is starting to improve after Scottish mother, Karen Gray, became the first person in Scotland to legally source medical cannabis.
Smuggling Medicine From the Netherlands
Until recently, Gray traveled to the Netherlands several times per year to buy full-extract cannabis oil containing THC to treat her son’s seizures. Murray Gray has suffered from seizures since he was born. Gray continued smuggling the medicine in spite of the risk of seizure and prosecution. She had no choice because the medicine was saving her son’s life.
Karen now says she is “hugely relieved” after a supplier obtained a license to legally import cannabis oil to be dispensed at a Glasgow pharmacy. The oil is made using cannabis sourced from Dutch producer Bedrocan. Murray’s past treatments included Bedrocan’s Bedrolite CBD strain and Bedrocan THC strain. He now uses Bedica Oil.
Murray started cannabis treatment last August, on the pharmaceutical called Epidiolex. This is a CBD extract. Treatment was initially successful but, after three months, his condition worsened. He was admitted to hospital in January this year with symptoms so severe that he couldn’t “eat, talk or walk.”
Karen feared for her son’s life until a Dutch doctor prescribed a treatment regimen including THC. Murray is doing a lot better on THC treatment and The Scotsman recently reported that he has been able to return to school.
However, Murray has been unable to get a prescription for cannabis oil on the NHS (National Health Service). So, while his parents have prosecution protection, they must still pay the full cost of his treatment at a price tag of over £1,500 each month. The family had to accept charitable donations to keep up with Murray’s medical bills.
Karen, who calls the situation a “huge struggle” says the NHS needs to step up and pay for her son’s treatment. She has joined forces with Lisa Quarrell. another mother advocating for cannabis access for kids. Quarrell’s son, Cole Thomson, has severe epilepsy. Cole now receives treatment with Bedrolite, under private prescription from a London clinic.
Parents Beg Government For Help
Quarrell and Gray are calling on the Scottish government’s Cabinet Secretary for Health Jeanne Freeman to release funding for their sons’ treatment on compassionate grounds.
Doctors are treating two children in other parts of the UK (England and Northern Ireland), with cannabis using NHS funds. However, the Scottish government retains autonomy over the National Health Service in Scotland. They told Gray that, in her words, “there’s nothing they can do.”
A Scottish Government spokesperson told The Scotsman that “It is not for the Scottish Government to intervene in prescribing decisions. If a clinician prescribed an approved Cannabis Based Product for Medicinal Use using an NHS prescription then it would be dispensed free of charge in Scotland.”
However, to date the only cannabis-based medicine approved in the UK is Sativex, which leaves Murray out of luck and his parents out-of-pocket.
The UK has traditionally taken a hard-line against legalizing cannabis in any form. However, last year the Home Office Minister, Sajid Javid, rescheduled cannabis from Schedule 1 to Schedule 2, permitting cannabis-based treatments prescription in the UK.
The change followed several high-profile cases, including those of Alfie Dingley and Billy Caldwell. Like Murray and Cole, Alfie and Billy suffer from severe epilepsy which didn’t respond to standard treatments. The boys’ parents had to seek cannabis treatment abroad.
The situation came to a head after authorities caught Billie’s mother, Charlotte Caldwell, smuggling medicine into the UK from Toronto, Canada. Authorities seized Billy’s medicine. Thankfully, they swiftly returned it following a media campaign and extensive press coverage.
UK Patients Still Fighting for Medical Cannabis
In spite of the legal change, Billy is still fighting for access to his medicine. Billy is currently using privately-prescribed cannabis oil. This is because Northern Ireland’s Health and Social Care Board refuses to extend permission for the Caldwells’ NHS prescription.
A local GP is offering to prescribe cannabis oil with oversight from specialists. However, under current law only specialist doctors can prescribe cannabis-based treatments. At present, Billy and Charlotte must travel regularly to England to collect Billy’s private prescription.
For now, a US company is sponsoring Billy’s treatment. However, they indicate that they’re unwilling to do so indefinitely. At that time, Charlotte and Billy will find themselves in the same situation as the Grays.
Last month, Charlotte and Billy appeared at the High Court in Belfast to fight for a judicial ruling. Caldwell says that the current situation is “unlawful” and wants the court to issue an order allowing their GP to prescribe the cannabis oil Billy needs.
UK law only allows specialist doctors to prescribe cannabis. This means that even the most high-profile patients are still fighting to use their medicine. Meanwhile, the law saddles parents with astronomical medical bills. Legalizing cannabis in the UK made for good headlines, but very little has changed. Patients still can’t get their medicine and the government isn’t doing much about it. For now, it seems current laws will force parents, like Charlotte and Karen, to continue their struggle.