Campaigner Vera Twomey has fought tirelessly for access to medical cannabis for her daughter, but Ava and other patients are still left to struggle, she tells Cannabis Health.
Vera Twomey would describe herself as quiet and non-confrontational, and yet she has one of the loudest voices in Ireland’s campaign for access to medical cannabis.
She has been forced to fight on behalf of her daughter Ava, 11 – who suffers from a severe form of epilepsy known as Dravet syndrome – and has relied on cannabis to control her seizures for several years.
“Women are motivated by their children and when a situation arises that is deeply unfair and threatens their future, it has certainly motivated me to find my voice,” says Vera.
“It’s the love that drives you. I found strength from my daughter’s struggle, she inspired me to be better and to do what was necessary on her behalf to get her what she needed.”
She continues: “You lose the fear to speak out, and any reservations about your ability to be good enough has to be set aside, because your child is brave and resilient and continues to fight for their life and you have to do something to improve their situation.”
The mum-of-four, cast herself into the limelight in order to access cannabis medicines for Ava, walking from her home in Cork to Leinster House in Dublin in protest to ask former Health Minister Simon Harris for help in person.
Vera has since spoken in the House of Commons and the European parliament, as well as all around the Republic of Ireland and Northern Ireland on the topic of medical cannabis, penning a book about her and Ava’s journey along the way.
In 2018, she was a winner at the People of the Year awards, which recognise people in Ireland making a real difference to the lives of others and used her acceptance speech, broadcast by RTE, to make yet another plea to the Irish government to legislate for medical cannabis usage.
But although Vera has thrown herself into the public eye, she has struggled to come to terms with putting her child through the same exposure.
“We have had to talk publicly for so long about our children and their illness. It’s private, it should be a family issue and yet as parents, trying to access medical cannabis we don’t seem to be given that respect,” she says.
“As a mother who has seen her child go through 15 or 16, different types of pharmaceutical medications, never once was there any issue or any arguments about getting access to those. Yet the amount that we have to expose ourselves when fighting for cannabis it’s quite extraordinary.”
In the early days of her campaign Vera resisted sharing videos of Ava having seizures online and with the media, but she says journalists were right when they told her it would be the most effective way to make progress.
“It’s a dreadful necessity that many of us have been forced to do, because you’re showing somebody who you love with all of your soul at their most vulnerable moments to strangers and hoping that sense will prevail. It’s completely wrong and such an invasion of privacy,” she adds.
“When people look back at the lengths that we had to go to to access medication for our children, I think they will be appalled.”
Ava is among 40 patients who have now been granted an individual ministerial licence to import Bedrocan oil to Ireland.
But until the coronavirus restrictions were introduced last year Vera and other parents or carers, were forced to travel to the Netherlands every three months to bring the medicine back.
Having been told there was no other solution, when the pandemic hit the Health Service Executive (HSE) stepped up and arranged for the importation and delivery of the medication for these patients,
Vera then embarked on another public battle to secure the arrangement permanently at a meeting with the Health Minister Stephen Donnelly in December.
A month later, Donnelly would claim the government was facilitating “compassionate access” to cannabis medicines, with an announcement of the provision of funding for the Medical Cannabis Access Programme (MCAP) in January – almost two years after it was introduced.
But the scheme failed to recognise the needs of thousands of patients in Ireland, including Ava.
Only four low dose cannabis-based medicines are covered by the programme, for people living with one of three qualifying conditions.
These include intractable nausea and vomiting associated with chemotherapy, severe treatment-resistant epilepsy and spasticity associated with multiple sclerosis (MS).
Despite the majority of patients who are currently being prescribed cannabis under a ministerial license using Bedrocan products from the Transvaal pharmacy in the Hague, none of these have been approved for the programme.
The Irish Government says Bedrocan has not applied to be part of the MCAP due to the fact that Dutch authorities do not permit the commercial export of oil-based cannabis products to pharmacies or wholesalers outside of the Netherlands.
“It saddens me deeply, but beyond sadness, it frightens me, because we depend on this medication for Ava’s survival,” says Vera, who currently pays 10,000 Euros up front every three months for the medicine and before it is refunded.
“It’s very difficult, particularly in light of Covid. If there was a job loss within the family or a medical emergency with another child, patients wouldn’t have the funds to access this medication,” she continues.
“Everybody is entitled to the best possible treatment, but it seems other Republic of Ireland patients are now going to be treated differently to us, shouldn’t we all be treated fairly?”
Since the announcement Vera has been calling on Donnelly to take steps to help patients with an individual licence fund these medicines at source.
“If it can’t be included in the compassionate access programme we have to accept that, but there should be a facility for funding medication for the individual licence holders,” she says.
“They have fought tooth and nail to achieve access to cannabis for their family members or themselves and this leaves us in a situation where we are forced to continue to struggle.
“It’s never ending, there seems to always be more obstacles to overcome.”
Vera’s voice is now amplified by the support of the recently-formed Irish Medicinal Cannabis Council – of which she is a founding member – which brings together the country’s leading cannabis advocates, including Tom Curran and Gino Kenny TD, to drive change and put cannabis back on the agenda.
“The fact that there is now an official council to respond to developments on the situation in Ireland is very helpful and much more effective,” she says.
“Within the cannabis community, there were lots of individual voices speaking about different issues, whether it be epilepsy, MS, chronic pain, but the overall objective for all of us is for fair and reasonable access to cannabis.”
It might seem almost impossible, but Vera is proof that progress is being made, however slowly.
“Things are only impossible until they’re possible. That’s what we’ve shown over and over again with medical cannabis,” she says.
“Everything was impossible at the start, but over the course of time we got a prescription, we found prescribing consultants and we secured the delivery of the medication.”
Vera adds: “Broader access to cannabis is going to change because there’s too many of us with stories of the extraordinary benefits for it not to be acknowledged and taken seriously in the future.”
A spokesperson for the Department of Health said it does not comment on individuals but added: “The products referred to are manufactured by the dispensing pharmacy in the Netherlands. The Dutch authorities do not permit the commercial export of oil-based cannabis products to pharmacies or wholesalers outside of the Netherlands but do allow the filling of individual prescriptions for collection by EU citizens from outside the Netherlands.
“Consequently, as they cannot be commercially exported, the manufacturers of the products have not applied to have them assessed by the HPRA for inclusion in the MCAP.”
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