Vera Twomey, the mother of a six year old daughter with a rare form of epilepsy, spent 5 hours yesterday protesting outside the Irish Parliament in a bid to get the attention of government Health Minister, Simon Harris.
Vera’s daughter Ava has Dravet Syndrome, a condition that can see her having up to 20 seizures in a day, and in many children can prove fatal.
There have been several high profile cases of children with the same condition who like Ava were resistant to conventional medicine, reducing their seizures to almost zero. Most had taken the non psychoactive cannabinoid CBD, the most famous being Charlotte Figi, who subsequently had a high strength CBD oil (Charlotte’s Web) named in her honor.
Family give daughter CBD for condition but believe she also needs THC
The Twomey-Barry family started giving Ava CBD oil in October, which has reduced the number of her seizures by 90%. But they have been advised that a cannabis oil containing CBD with a small amount of the psychoactive compound THC could reduce her seizures even further.
Cannabis containing THC is currently illegal in Ireland, although the first stage of a Bill was recently passed which will allow medical cannabis to be prescribed for certain conditions.
The mum of four had already been in the news after setting off on foot from her home in County Cork last November; her intention to reach Dublin and get a meeting with Health Minister Simon Harris to discuss her wish to give Ava cannabis oil.
After a few kilometres, Harris pleaded with Vera to stop and agreed to meet to discuss her requests.
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Family apply for compassionate licence but encounter many obstacles
Since then the family have been in talk with the Ministry of Health and the Health Products Regulatory Authority (HPRA) about being awarded a compassionate licence to import medical cannabis from abroad containing THC.
But according to Vera’s husband Paul, it is proving to be a very protracted process.
“We’ve done everything they’ve asked. Each time they come up with a new hurdle,” he says.
But yesterday in a meeting with the HPRA, the Cork couple say they were informed of another avenue, which was to be awarded a ministerial exemption directly from Health Minister Simon Harris.
Couple say no word from Department of Health
Insisting that this was the first time they had heard about this particular route, they tried to contact the Minister, who they say has not been returning any of their approaches since the 22nd December.
In desperation at the claimed lack of contact from Harris or the Department of Health, Vera decided to wait outside the Irish Parliament, hoping to force an answer.
In the end, Twomey received no response from Harris or the Ministry of Health. Instead a spokesperson made a statement direct to the media.
“Minister Harris is very aware of the situation facing Vera and her daughter, Ava, and is eager to be supportive in any way that is open to him. He has met with Vera on three occasions as well as speaking to her on the phone.
“He has made his officials available to her on an ongoing basis and asked them to arrange a meeting with the Health Products Regulatory Authority for her, which has now taken place. He has also instructed his officials that any application received via the licence process outlined below should be assessed immediately on receipt.
“The position is that cannabis-based products are strictly controlled under the Misuse of Drugs Acts, 1977 to 2016. The appropriateness of any particular treatment is a matter between the patient and their doctor and the Minister has no role in this process.
“This information has been provided to individuals who have applied directly to this Department for information, including the Twomey family, and has been stated publicly by Minister Harris on a number of occasions. To date only one such application from a doctor has been received.”
In an impassioned plea on social media yesterday Vera said:
“The situation that Ava is in is very serious and I would like Simon Harris to contact me. One of our most serious concerns is that three children have passed away from Dravet Syndrome seizures in the past month. As parents we are very concerned for the welfare of our children. Contact from the department (of health) would be most welcome.”