Published on: 07/18/17
I remember hearing the breaking news that the Irish Parliament had unanimously passed a Bill to legalise medical cannabis.
Vera Twomey was the tearful messenger. She was mid flow telling a medical cannabis conference in the European Parliament about her daughter Ava. After a quick glance down to read a message on her phone, she announced the shock development, receiving a roar of appreciation from all there.
By then Vera’s face was familiar to the Irish people. She had been tirelessly sharing with everyone that would listen how 7-year-old Ava’s life threatening seizures had reduced by nearly 90% since taking CBD oil. With brave acts of determination such as walking over 200km from her home to the Irish Parliament, her story had captured the hearts of every strata of Irish society, from members of the Irish Parliament to grannies who’d never touched a joint in their life.
Vera was jubilant. Her dream seemed to have come true. The Bill, put forward by People Before Profit Alliance member of parliament (TD) Gino Kenny, was going through. Surely, it was time to celebrate.
The Irish government, however, were a little more reticent about pushing through the legislation. And so Health Minister Simon Harris commissioned a scientific review by the Irish Health Products Regulatory Authority before proceeding further.
Irish government launches Compassionate Access Programme
The report noted a lack of sufficient scientific evidence proving beyond doubt the efficacy of medical cannabis. Despite this, it went on to recommend the use of medical cannabis for a limited number of conditions such as refractory epilepsy, spasticity associated with MS, and the pain/ nausea associated with cancer treatments such as chemotherapy.
Although far less inclusive than most campaigners had hoped for (chronic pain sufferers were excluded), there was still a sense of optimism about the government’s proposal of a Compassionate Access Programme to medical cannabis for Irish patients.
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Health Committee less than impartial?
Next step, the formation of a Health Committee, bringing together various politicians to examine how to implement the Bill. Heading up the committee, Dublin Fine Gael politician and pharmacist by trade, Kate O’Connell.
Back in March, O’Connell had voiced her opposition to the Medical Cannabis Bill, raising concerns about potentially unknown side effects resulting from medical cannabis use. She is reported as saying that if anyone died from a CBD overdose, “the blood could be on our hands.” This despite there being no recorded cases of anyone overdosing on CBD, and scientific studies finding that the non-psychoactive compound can be safely tolerated in humans in doses of up to 1500mg a day.
She went on, “let’s not rip up the rulebook, with the possibility of terrible unintended side-effects that were never anticipated. That’s why we have robust trials. Everyone thought thalidomide was great at first.”
Health Committee rejects Medical Cannabis Bill
With words like these, it’s little surprise that the Health Committee recently announced they had decided to reject the Bill. Reasons given were concerns about the its implications on the decriminalization of cannabis for recreational use, a lack of a suitable framework for access to medical cannabis for patients, and not enough guidelines for doctors.
The report also criticised the use of whole plant medical cannabis preparations, stating “whole plant cannabis also contains many other chemicals which are psychoactive and potentially harmful. It is not possible to regulate the whole plant extract of a plant which has over 100 varieties and several hundred components. The isolation of cannabinoids which have proven medicinal beneficial effects and have scientifically proven efficacy and safety is the key to developing medicinal cannabis products which can be legally prescribed and dispensed.”
Ava becomes medical cannabis refugee
Something that has disappointed mother and medical cannabis campaigner Vera Twomey. She heard the news from the Hague in Amsterdam where she and daughter Ava are spending two months as medical cannabis refugees.
Despite Vera’s best efforts to convince Health Minister Simon Harries that Ava needed a whole medical cannabis preparation containing both CBD and THC, Harris refused to change his position. As a result, Vera and her husband sought out the nearest country in Europe where Ava could legally be prescribed whole plant cannabis containing THC, which happened to be Holland. Since starting the new medication three weeks ago, Ava’s health has drastically improved.
Vera told Endoca:
“Ava’s essentially had no seizures since she started the medical cannabis. She’s counting to twenty. Before that she couldn’t count to five. She’s feeding herself all the time now. She is visibly better. Her appetite is excellent. Her sleep has improved. Her balance is better. She’s putting on weight.
“She’s a healthier child, her eyes are brighter, her reaction is quicker, her coordination has improved. Her speech – she’s coming out with sentences. You could work for six months at home to get 2 words out of a child like Ava, and she’s been here three weeks.”
Betrayed but defiant
The mother of four feels betrayed by the report’s recent findings. “It’s an absolute modern day scandal what they have done,” says Vera. “They have filled the health committee with people who would tow the line of what the government wanted to do.”
So does this mark the demise of the regulation of medical cannabis in Ireland?
“It’s not the end,” Vera says emphatically. “Personally, we will come home with a licence for medical cannabis for our daughter. They cannot pick and choose who they want to issue licences for medical cannabis to. I won’t allow it. I won’t allow my daughter to be stranded over here like a refugee.”
It will be interesting to see what next step the Irish Government takes. The report recommends various amendments to address the constitutional and safety issues, and Health Minister Harris himself insists the proposed Compassionate Access Programme is still underway.
Will whole plant cannabis be sacrificed?
In reality, the most likely forms of cannabis to reach Irish patients will be pharmaceutically produced, patented versions of cannabis, such as Epidiolex containing pure plant derived CBD, or Sativex which combines THC and CBD.
However, Vera is not just a medical cannabis campaigner, but backs the use of whole plant extractions: “I understand Neurologists in Ireland have agreed that all they are willing to prescribe is Epidiolex, but Epidiolex isn’t enough,” she says. “So we are going to be applying for a license for whole plant cannabis with THC, which works, and has changed my daughter’s life utterly and completely.”
One thing for sure, Vera is not ready to give up the fight.
“There are people over in Ireland who are dying on their legs. I have no notion of giving up. It is not the end.”
For information on how to make donations to the crowdfunding campaign so that Ava can continue receiving treatment in Holland, please visit her Go Fund Me page.
Disclaimer: Views expressed here do not necessarily reflect those of Endoca and its staff. This article is not intended to provide medical advice, diagnosis, treatment or cure. Endoca CBD products have not been approved by the US Food and Drug Administration (FDA).