AVA BARRY HAS Dravet syndrome, an extremely rare, drug-resistant form of epilepsy.
The six-year-old suffers from several seizures every day, many of them violent. Several types of pharmaceutical medication have failed to improve her condition and she frequently has to spend time in hospital.
Her parents Vera Twomey and Paul Barry believe there is one thing that can help her: cannabidiol (CBD) oil, a form of medicinal marijuana.
Vera says a medication called Epidiolex, which contains CBD oil, could help alleviate some of Ava’s symptoms.
Earlier this year, doctors told Vera and Barry they have run out of pharmaceutical options, but could try some of the failed medicines again in different formats.
In response, they set up an online petition about access to medicinal marijuana in Ireland. It is available in some countries and certain states in the US.
The petition, which had over 11,600 signatures at the time of publication, will be sent to Health Minister Simon Harris. A previous version was intended for his predecessor Leo Varadkar.
Dravet syndrome is extremely rare, affecting about one in 20,000 births, and causes regular and prolonged seizures.
When Ava was diagnosed her parents were told she would not walk or talk, but she has defied the odds in this regard and now attends school. However, her condition means she regularly misses days.
“At the moment, if we got Ava to go to school two days a week you’d be concerned she’d not be able to do a third day, we’re thrilled if she does three. Last year she got to school five days a week just twice.
“I can’t tell you, how badly she wants to go to school, how annoyed she is at me when she can’t go,” Vera tells TheJournal.ie.
It’s not uncommon for Ava to have up to 12 tonic-clonic seizures a day, where she falls to the floor and shakes violently.
Vera says she also often gets 100 or more ‘absences’ a day and myoclonic jerks, like the jerks people sometimes get before falling asleep.
“They’ve never gone away.
We’re still struggling, she’s still having seizures. She’s still going through an awful lot. I’m still very, very worried about her – that she might not come out of one of the seizures.
Vera is in contact with a number of parents in other countries whose children have a much better quality of life since they got access to CBD oil.
She says she is aware of one girl from the US whose seizures have reduced from about 300 a month to just three.
Bill to legalise medicinal cannabis
Medicinal cannabis regularly makes headlines. A recent summit at Trinity College Dublin examined the topic, while a bill on legalising cannabis for medical use is set to be debated in the Dáil in the coming weeks.
In July, Bríd Smith tabled the bill on behalf of her People Before Profit/Anti-Austerity Alliance colleague Gino Kenny.
The bill calls for cannabis use to be permitted for sufferers of illnesses such as Multiple Sclerosis, cancer and Dravet syndrome.
It calls for the establishment of a Cannabis Regulation Authority and for distributors to be licenced.
A bill by then TD, now MEP, Luke Ming Flanagan to legalise recreational cannabis use was defeated by 111 votes to eight in 2013.
Speaking about the bill in July, Kenny said:
Someone in pain would do anything to take away that pain. We should not criminalise those that use it for that purpose. I think there is a huge groundswell of support with the public to allow cannabis to be used for medicinal purpose, for people with serious illnesses.
Earlier this month, a cross-party parliamentary group examining drug policy reform in the UK called for medicinal cannabis to be made legal in Britain to help people with a number of conditions including chronic pain and anxiety.
During its inquiry, the group took evidence from 623 patients, representatives of the medical professions and people with knowledge of how medical cannabis is regulated across the world.
Caroline Lucas MP, co-chair of the group said: “Many hundreds of thousands of people in the UK are already taking cannabis for primarily medical reasons.
It is totally unacceptable that they should face the added stress of having to break the law to access their medicine. This a matter of compassion and human rights. The government should have the political courage to view the issue of medical cannabis separately from any wider drugs reform and act urgently.
At the time, the Home Office told BBC News there were no plans to legalise the “harmful drug”.
Vera says CBD oil is “very safe” with none of the associated high of marijuana as the tetrahydrocannabinol (THC, the active ingredient) is removed or, if necessary, is only present in trace amounts.
Simon Harris
Vera says she met with Health Minister Simon Harris in June to discuss Ava’s situation and has been in contact with his office a number of times since then.
“I actually thought he was wonderful, I really did. He was so interested in Ava.
“I know not much has happened since then, but I don’t think he was just paying lip service. I haven’t given up hope.”
When Independents 4 Change TD Clare Daly raised the issue of using medicinal cannabis to treat the symptoms of Dravet syndrome in the Dáil in May, Harris said he has “no role in the process of authorising medicinal products”.
“Under European and Irish legislation, before a medicine can be placed on the Irish market, the manufacturer must seek an authorisation from the Health Products Regulatory Authority (HPRA) or, in the case of certain medicinal products, the European Medicines Agency. A determination on an application for authorisation of a medicine is based on a rigorous scientific assessment of the application against the criteria of safety, quality, efficacy, legal and regulatory requirements.
CBD is derived from cannabis which is a controlled drug. If a CBD oil product does not contain an ingredient which is a controlled substance, it may be feasible to have that product imported and used in Ireland, in accordance with specific conditions, should a patient’s doctor be of the opinion that this is an appropriate treatment.
“My department is aware that cannabis for medicinal use has been legalised in some countries and that there have been several studies internationally on the therapeutic effects of cannabinoids for a number of medical issues. In July 2014, the Misuse of Drugs Regulations were amended to allow for certain cannabis based medicinal products to be used in Ireland.
“Subsequently the HPRA granted a marketing authorisation for a cannabis-based medicinal product which is indicated for the relief of certain symptoms for people with multiple sclerosis.”
Harris added that his department “will continue to keep developments in relation to cannabis-based medical products under review”.
Vera’s petition can be viewed here.
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