The mother of a boy with severe epilepsy has urged medical cannabis manufacturers to ease the financial burden on hard-pressed families.
Charlotte Caldwell said many families in the North who contend with severe epilepsy are having to pay privately to get a prescription at a time when the cost of living is soaring.
Ms Caldwell and her son Billy, who are from from Castlederg, Co Tyrone, played a leading role in a campaign to secure a change in British law in 2018 allowing certain patients to access treatment through the UK's health service.
However she told the PA news agency that despite that breakthrough, it has been a difficult road for families like hers.
She was speaking on the fourth anniversary of the confiscation of her son’s medical cannabis at Heathrow Airport in London after returning from medical treatment in Canada. They had travelled there after their GP was unable to continue prescribing the medicine.
It was later returned to him after he became ill and was being cared for at London’s Chelsea and Westminster Hospital, where his doctor notified the UK Home Office that Billy’s condition had become life-threatening.
Then British home secretary Sajid Javid authorised the return of the medical cannabis, and in November that year changed the law to allow it to be prescribed by specialist doctors for certain conditions.
In the Republic, the health service last year agreed for the first time to reimburse a regulatory-approved cannabis-based medicine under the drugs payment scheme.
The cannabidiol medication Epidyolex has been available to all eligible patients in the State since January, becoming the first country in Europe to approve Epidyolex for all three of its medical indications.
Cumbersome process
Ms Caldwell described the process of obtaining a health service-funded prescription in the North for medical cannabis as cumbersome, and said many families have had to resort to private health care to get it or risk the black market.
She is offering her experience to advise families, and has made a number of pleas to government and medical cannabis manufacturers to ease the process.
Ms Caldwell said a framework exists but it is only available to those aged 18 or under, leaving “forgotten children” who require full-time care left behind.
She is calling on medical cannabis manufactures to gift paediatric epilepsy patients their medicines while they are waiting for their publicly-funded treatment to be approved.
Ms Caldwell told PA: “While I am delighted that there is now a route to affordable and reliable medical cannabis treatment in the UK, I am saddened that it remains a complex and at times opaque process.
“Four years on from having Billy’s medicine confiscated from me at Heathrow Airport, I want to share the learnings of my experience with other families, for whom the journey need not be so fraught with complication, heartache and vast personal expense.
“I am also calling on medical cannabis manufacturers, who do so well out of private prescriptions, to put their medicine where their mouth is by gifting medical cannabis to patients seeking NHS funding.
“This would immediately relieve a huge financial burden faced by patients and their families, during which time I hope to help them navigate the complicated approval process.”
