Mother slams minister's letter following plea to legalise cannabis oil for sick son
Noreen O'Neill has urged to Health Minister to legalise the use of cannabis oil for medical use
A mother has called a response from Minister for Health Simon Harris to her request to legalise cannabis oil as a medical treatment for her son Michael as "a fob off".
Noreen O'Neill recently wrote an open letter to Minister Harris imploring him to pass legislation to make cannabidiol (CBD) oil available as a medicine in Ireland.
It is not illegal in Ireland as it is not psychoactive, but it is also not authorised for medical use.
The response from the Minister to Noreen, seen by Independent.ie, says that CBD oil is not controlled under the Misuse of Drugs legislation before adding it was not authorised as a medicinal product.
The Minister went on to advocate the licensing system for medical cannabis use in Ireland: "Ultimately it is the decision of the clinician, in consultation with their patient, to prescribe or not prescribe a particular treatment, including cannabis-based treatment, for a patient under their care. The Minister for Health has no role in this clinical decision-making process."
However, doctors looking to prescribe products with THC do have to apply to the Minister of Health for a licence to do so.
Noreen has said that response felt to her as a "fob off" adding that nobody in her situation should have to wait for an effective treatment as "every single seizure is doing more damage."
She believes that cannabis products should be legalised for medicines, so that doctors would remain in charge of the treatment and so that it could be bought under the long-term illness scheme, rather than having patients pay for it out of their own pocket.
Noreen put the yearly cost of the oil in the region of €11,000.
"I had to take Michael's seizure management out of his doctor's hands and essentially do it myself," she said. "I'm not putting my son at risk in any way but if people have to do that then it is a bad state of affairs. It is absolutely insane."
Earlier this year, after yet another drug failed to assist his condition, Noreen began to administer a drug known as Charlotte's Web CBD oil to Michael, using dosage information for his weight, age and condition that she sourced online.
On the first day the seizures halved, on the second day of treatment they halved again and on the third day they stopped.
Michael has now been seizure free for more than two weeks.
Speaking to Independent.ie this week, Noreen said Michael is now "flying it".
"It completely changes his life," Noreen said. "He is aware of his surroundings. This is allowing him to be independent."
Michael is 17 months old and he began to suffer seizures aged three-and-a-half months. Soon he was suffering up to 20 seizures a day and doctors diagnosed him with Bilateral Frontal Polymicrogyria and Global Developmental Delay, a condition where excessive folds in the brain affect neurological development.
In her letter to Minister Harris this week, Noreen described what life was like as her young son continued to suffer seizures.
"Can you imagine what it’s like to watch a baby convulsing, Minister? During those times, a typical day in the hospital would be me waking up to get sick before I did anything else. The thought of what lay ahead and what would become of my baby literally turned my stomach daily. Some days, I had already been up all night as he was having nocturnal seizures intermittently.
"The rest of the day would be spent watching as he entered seizure after seizure after seizure, despite being on the maximum doses of several different anticonvulsant drugs. The days were interjected by blood tests, urine tests, EEGs, MRIs, physical examinations, IV lines, multiple medications and emergency seizure medication at times. What his little body went through was nothing short of torture."
Michael was given various anticonvulsants in a bid to stem his seizures but they either did not work or the side effects on his body were too great.
That's when she tried CBD oil for the first time.
Noreen sources her CBD oil from one of two locations in Ireland that sell it here as a supplement.
The company that manufactures the oil in the US have a disclaimer on their website which says; "This product is not intended to diagnose, treat, cure or prevent any disease".
Currently, doctors can ask the Minister of Health for a licence if they believe a cannabis product containing THC (the psychoactive ingredient in cannabis) is the best treatment, on the condition they monitor the patient.
Four such licences have been issued, including one to Ava Twomey, daughter of well-known campaigner on the the issue Vera Twomey.
The Minister's letter to Noreen also said that he was in the process of establishing a 'Cannabis for Medical Use Access Programme' to help access to cannabis products that are not authorised as medicines where "medical conditions have failed to respond to standard treatments".
Noreen also felt that this proposed programme was 'flawed'.
"Patients have to be shoved up against death's door before they say 'there you go so'," Noreen said. "The kids have to earn access to it by being sick enough.
"Some [doctors] are open to it and they believe CBD oil has a role in seizure control. Some of them are just afraid because they are sticking their neck out, they are risking their licences. It has to be made normal.
"A doctor should be able to request a cannabis product just as readily as they request an anticonvulsant. It should be on the shelf in the hospital dispensary."
In a response to Independent.ie The Department of Health said: "To reiterate, it is the decision of the clinician, in consultation with their patient, to prescribe or not prescribe a particular treatment, including cannabis-based treatment, for a patient under their care. The Minister for Health has no role in this clinical decision-making process.
"The Minister's role comes into play once a valid licence application has been received by the Department of Health. Such applications are assessed immediately."
With regard to the Access Programme, the Department of Health statement said: An Expert Group appointed by the Minister has drawn up clinical guidance for healthcare professionals treating patients through the Access Programme and Department of Health Officials are working on legislation to underpin the Access Programme. The access programme is not yet operational; in the meantime access to cannabis for medical treatment is via the aforementioned Ministerial licence application route."
Late last year, a bill to legalise medicinal cannabis use, proposed by People Before Profit (PBP) TD Gino Kenny, was sent back to the Health Committee.
At the time PBP TD Bríd Smith said Ireland is lagging behind other countries in legislating for medicinal cannabis.
"Poland are in the process of legalising medicinal cannabis. Already in Italy, Spain, France, Germany, Belgium, the Netherlands and over 23 States in the USA have legalised medicinal cannabis," she said.
Ms Smith added: "I have friends... who suffer with extreme pain because of cancer and other illnesses and they’re being deprived the use of medicinal cannabis… it’s time we caught up with the rest of the planet."