As the cannabis boom and reform measures make their way through the United States and across the globe, it’s highlighting the regions where essential cannabis treatments are still illegal or inaccessible, often affecting some of the most vulnerable among us. Robin Emerson and his five-year-old daughter Jorja know this experience all too well.
Yahoo! News covered their story, as Emerson reached out to the United Kingdom health secretary, simply asking that Jorja be allowed for the continued prescription of the drug that has kept her healthy and happy for the last three years, still awaiting a reply.
Jorja suffers from a rare chromosomal condition which had her hospitalized with life-threatening seizures a number of times through her young life. To help, she’s been taking medical cannabis, which Robin said has been a “wonder drug,” making Jorja mostly seizure-free and dramatically improving her quality of life.
Emerson recounts doctors relaying in 2017 that Jorja would die and her family would need to say their goodbyes.
“But when we tried her on medical cannabis, we began to see an improvement within weeks,” Emerson said. “On Christmas Day 2018, she smiled for the first time in such a long time, and it was wonderful.
“She got better and better and today she laughs and giggles and enjoys life,” Emerson added. “But we have hit a hurdle and if the government don’t do something soon, the consequences will be grave—not only for Jorja but for other children who need this drug.”
At the end of September 2021, the only clinical speciality in the U.K., prescribing medical cannabis for Jorja and other kids like her, retired, with no provision to replace her in this role. NICE guidance has also not been updated to allow GPs to prescribe medical cannabis. This lapse coule mean the end of the National Health Service (NHS) prescribing ongoing treatment for Jorja’s life-threatening condition.
Robin and Jorja are far from the only family affected by this change, inhibiting greater access to medicinal cannabis. Families of epileptic children have protested outside of the Parliament, referencing the “almost total block” on access to NHS prescriptions and forcing families to go private.
End Our Pain, a group behind one of the protests in 2021, noted that patients regularly cannot get the access they should and that, collectively, the suffering of those patients will continue, so long as treatment access is restricted.
“Over 2 years ago, on the 19th March 2019, the Secretary of State for Health and Social Care met the families being denied NHS prescriptions for medical cannabis and promised them ‘urgent action,’” the End Our Pain website states.
“Without the medicine Jorja will relapse and could possibly even die,” Emerson said, referencing the NHS’s messaging that more research is needed in regard to medical cannabis.
“We accept that, but when you’ve tried every other avenue and know it works for Jorja and other children and they need it to stay alive, we’re happy to give it to them now.”
Along with writing to the health secretary, Emerson also wrote to the prime minister, to no response.
“The fact they won’t engage with me is so frustrating,” Emerson said. “We’ve got until February until her current prescription runs out, so we are really up against a deadline.”
Emerson recalled the support he received after initially posting about Jorja’s condition online, everyone telling him that he and Jorja must keep fighting. Eventually, he came across medical cannabis after seeing a child in Australia, “who had gone from barely able to function to thriving and having a great life,” Emerson said.
One specialist consultant was eventually given the green light to prescribe Jorja the medicine she needed.
“She hasn’t stepped foot near a hospital and is living a great life and now that doctor has retired our own GP says he’s happy to write the prescription if he is told he is allowed, but that hasn’t happened,” Emerson said.
He noted they’ve even looked into moving to Canada to gain access to the drug, but ultimately, it’s in the hands of the government.
Emerson has started The Jorja Foundation, aiming to support families and young people seeking access to cannabis therapy treatments and supply vital funding for medical appointments, special equipment and more unattainable via the NHS or through occupational health, for patients.
“All they need to do is give other GPs permission to prescribe medical cannabis so we’re asking people to write to their MPs and ask for help or sign our petition. We are really against time so all I’m hoping for is a letter from Sajid Javid to say it’s possible and our little girl can have the drug she desperately needs,” Emerson said.
