A mother who has walked over 200kms from Cork and Dublin in a desperate bid to secure medicinal cannabis for her seriously ill daughter has vowed this evening to camp outside the Dáil until the law is changed.
Vera Twomey is due to arrive outside Leinster House around lunchtime tomorrow after her week-long march, writes Eoin English of the Irish Examiner.
Ms Twomey, who is battling tonsillitis and who is being pushed the final few miles in a wheelchair after suffering a knee injury, said: “My voice is gone, and my leg is gone but my spirit is not broken.
"I am as determined as ever. There is no going back. I’m not going home until I get this sorted for Ava,” she said in Naas this evening.
Vera, from Aghabullogue, set off from Mallow in Co Cork last Monday on her walk to Dublin to highlight her campaign for medicinal cannabis for Ava, seven, who suffers from a rare form of epilepsy called Dravet Syndrome.
Ava’s number and severity of seizures have reduced thanks to Charlotte’s Web - a CBD-based cannabis treatment.
But Vera said other children with Dravet Syndrome have seen incredible improvements after taking THC-based medication, and she believes Ava would benefit from it too.
However, the family’s application for medicinal cannabis under license pending the development of a compassionate access programme was rejected in late January because it wasn’t signed off by a medical consultant.
Her voice cracking with emotion, Vera this evening said: “I’ve suffered extreme discomfort and may have permanently damaged my leg.
“I’ve been patient, I have been respectful and I’ve waited for Minister Simon Harris to do something to help Ava.
“I thought 18-months ago when we started this campaign, that there was compassion in this country. But it’s obvious now that there isn’t.
“My campaign doesn’t seem to be resonating in the Dáil at all, but I need this resolved before I go back home.
“I’m not leaving until I get this sorted for Ava.”
She insisted that she will remain camped outside Leinster House until the issue is resolved.
“At this stage, my only option is to seek emergency legislation to allow Ava get access to this medication.
“Much less important issues that have been legislated for. They (TDs) could use the statutory instrument method as an immediate matter. My daughter’s life is at stake.”
She dismissed concerns about her own health and said: “All I have is tonsillitis and a sore knee. The risks that Ava faces from every seizure is permanent brain damage or death.”
Meanwhile, it emerged this evening that the Joint Committee on Health has brought forward its April 13 meeting with the Health Products Regulatory Authority (HPRA) to discuss its scientific report on medicinal cannabis tomorrow.
The meeting will take place around the same time Ms Twomey arrives at the Dáil.
She insists that legislation is her only option now.
But Dr Tony Holohan, the Chief Medical Officer at the Department of Health, has issued a statement this evening to clarify the advice given to Minister Harris in relation to the use of cannabis for medical purposes.
He said while the access programme is being developed, the Minister can provide a license for access to cannabis for medical purposes in individual cases.
But he said any application for such a licence must be endorsed by a consultant who is responsible for the management of the patient and who is prepared to monitor the effects of the treatment over time.
"Therefore, it is crucial that the granting of any such licence takes due care and consideration of the potential unintended consequences associated with the prescription of cannabis, a schedule one controlled drug, for medical purposes, and that its use is endorsed by a consultant who is familiar with and responsible for the care of the individual for whom the licence application is being made," he said.
The Health Minister has contacted Ms Twomey this evening just hours before she is due to arrive at the Dáil.
Minister Harris said he has been advised by the HSE that her daughter Ava's consultants will be in touch with her to arrange a further consultation for Ava.
Mr Harris also said he is extremely conscious of the long and arduous journey Vera and her family have made to arrive at the Dáil tomorrow.
He said: "And I have indicated my willingness to meet Vera and her husband Paul again tomorrow should they so wish but I have also honestly stated that it is not within my power to provide medicinal cannabis tomorrow.
"I believe the course of action is for this matter to be addressed with the medical professionals involved in Ava’s care.
"I remain fully committed to establishing an access programme for cannabis-based treatments in Ireland and, in that regard, I welcome the early consideration by the Oireachtas Health Committee of the recent HPRA report, following a request from me, which will now take place tomorrow and will hear from Department and HPRA officials."