Irish campaigner Vera Twomey, who has fought a lengthy battle to obtain medicinal cannabis for her 11-year-old sick daughter, Ava, is delighted and grateful after it was confirmed the medicine would no longer need to be funded up front.
Twomey has spent seven years fighting for the introduction of medical cannabis to Ireland to help those with illnesses it can help to alleviate. The campaign for her daughter’s medication has received great media attention and garnered support across the county and beyond.
Located in North Cork, the second largest city in Ireland, Ava suffers from Dravet syndrome—a rare form of epilepsy. Medical cannabis has controlled her seizures for the past four years.
Ava was approved to use the treatment legally back in 2017. However, for several years, the family has had to travel to the Netherlands to pick up the cannabis medicine, called Bedrocan, and pay thousands of euros upfront.
After the COVID-19 pandemic began, the government told Twomey and other families in their position that their treatment could be imported, but they would have to pay 10,000 euros upfront and wait five weeks to be reimbursed.
Earlier this week, Health Minister Stephen Donnelly called Twomey to confirm that this would no longer be the case. He stated publicly that the refund system will be “replaced by a direct payment system from the Health and Safety Executive (HSE) to the dispensing pharmacy in the Netherlands.”
The new rules cover three conditions, including severe, refractory epilepsy.
In an interview with The Pat Kenny Show, Twomey said she was ecstatic to hear the news.
“Stephen Donnelly called us to confirm it,” she said. “It’s going to cover some people—there are some others who don’t have the qualifying conditions. Their situation still needs to be addressed. But after talking to Minister Donnelly, he is very interested in the topic of medical cannabis. I think he is genuinely the most progressive minister I have dealt with regarding this issue.
“We’re grateful they gave the time and attention to this to help us,” she continued. “There are still other people to help, but I think he is someone who is genuine towards helping people.”
In Ava’s case, a consignment of medical cannabis from the Netherlands costs around 9,500 euros every three months. The price would increase as Ava got older, something Twomey said would have made the upfront payments unmanageable.
“It was very stressful to have to continuously have this large sum of money, to us at least, in cold storage for the next prescription,” she said.
According to Twomey, medical cannabis has had a dramatic impact on her daughter’s life. Before starting the treatment, Ava would have “daily, aggressive, and constant” seizures. She would spend several months in the hospital every year as a result.
Since beginning treatment, Ava has not been admitted to the hospital in an emergency case since October 2016, and her seizure control is over 90 percent.
“It’s a night-and-day difference,” Twomey said. “For a patient with such a remarkably complicated form of epilepsy, that is phenomenal. It is life-changing.”
Last year, the government confirmed families would no longer have to travel abroad to collect prescribed cannabis products as a ‘delivery service’ was being made permanent. Authorities in the Netherlands have barred the commercial export of cannabis oils, but they do allow the filling of individual prescriptions from EU states.
Reflecting back on the past several years of tireless campaigning, “where there was always something else, another ‘but,’ another realization of ‘we have this but we need that,’” Twomey said it is “more than a little strange to think that we took on a government and even stranger that we have won.”
“All I ever wanted was to get Ava the best option to treat her seizures and save her life,” she added. “I never expected to have such a long journey, and to become so associated with this issue.”
Although this is a huge victory for Twomey’s family, and others as well, she is aware that there are still people out there who cannot access the medicinal cannabis treatment they need in Ireland.
“It is such a difficult fight, and I honestly don’t know how we’ve achieved this one thing,” she said. “Of course I’m aware that there will be people out there wondering when and if it will happen for them.”
Twomey is unsure if she will continue her activism at the same level going forward, but admits that “once you get this involved and meet so many people affected, it’s hard to step away.”
