A Wicklow mother who has been fighting to access state funding for medical cannabis for her son's rare form of cancer vowed to keep going today at a rally at the Department of Health.
The Patients for Safe Access Day of Action took place this afternoon in an effort to promote the safe and legal use of medical cannabis in Ireland. Among those speaking and in attendance were doctors, politicians, patients, advocates, influencers, and legal experts.
Pamela Barnes from Wicklow was there today on behalf of her son Ryan whose rare form of sarcoma is now inoperable. Although he was diagnosed seven years ago Ryan has an "amazing quality of life" thanks to medical cannabis, Pamela told Dublin Live.
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Now 22, Ryan's tumour developed from the age of eight but his family has run out of money to keep paying for his medicine. Pamela says that Ryan does not fit the criteria for medicinal cannabis and although he has a ministerial licence for its use he cannot get it on the medical card.
Speaking to Dublin Live, Pamela said: "My son Ryan has a very rare genetic form of sarcoma. He was diagnosed at the age of 15, he had developed his tumour from the age of 8. He is now 22. He is a very fit young man, thankfully, down to medical cannabis which we went to in 2019.
"We have a ministerial licence, we can no longer afford the medicines. We've been paying over €10,000 a year just to keep Ryan well, to keep him off pharma drugs. To keep him away from you name it, they'll give it to him, for €1.50 on the medical card. But I pay €1,080 a month to keep him well on a natural medicine which is our choice. A natural medicine.
"So the primary care reimbursement won't reimburse our funds because Ryan doesn't fit into the criteria. It's in three parts, and he doesn't, and he never will because his condition is so rare. That's why he was misdiagnosed [at the beginning]. It's a rare genetic form of sarcoma. The criteria is epilepsy, if someone has chemo, which Ryan was offered and we refused, and they feel nauseous. Then he could have it."
During the rally Pamela carried a sign which read "I'm a working mother, not a stoner" in an effort to highlight why the crowd were campaigning outside the Department today. Other signs included "I'm a law student, not a stoner" and "I'm a baker, not a stoner".
Pamela continued: "I'm a working mother. I work every hour I can get to provide my son with natural medicine. To see him how he is, his appetite, the quality of life that he has is amazing. And this is all down to medical cannabis. This is a plant, and if I was allowed to grow and cultivate [it], I could.
"Today, I'm not expecting anything today. Rome wasn't built in a day. You know, we've been doing this since 2018. I'm going to keep going and I will not stop until Ryan is included on the medical cannabis access programme, where he can walk into his pharmacy and he can get his prescription just like me or you."
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