Ireland has become the latest European nation to approve a bill allowing for the use of medicinal cannabis. The bill, which was passed on the 1st of December after the government said it would not oppose it, is yet to become law (its ratification will be debated in the early months of the new year), but campaigners are confident it will pass and that much-needed cannabis products will be available through the health system for those in need.
A variety of factors contributed to the passing of the bill, but the main driving force was that of grassroots action. Various patients, activists, politicians and parents of those in need worked together on a campaign that will change the lives of so many people on the island.
I caught up with Graham de Barra from Help Not Harm (HNH) – a campaign to update Ireland's current drug laws, reduce harm and promote health policies – to find out how this bill came to pass.
"It really began seven years ago; we had a protest in Cork in 2010 with a number of patients, including one man, John McCarthy, who had motor neurone disease. He would have been well known in Cork for his writing and campaigning, and he was sitting there in a wheelchair giving his talk, and what really struck me was when he stood up – this guy was essentially paralysed from the neck down – and he stood up momentarily and walked over to the microphone and finished the last minute or two of his speech by saying that he was able to stand up because he was lucky enough to have been gifted a weed brownie that morning. For me, that's when I realised it is an essential medicine. John passed away about a year after giving that speech."
That speech took place during the early stages of the movement, back when it didn't quite have the momentum it needed and later found. The death in 2013 of another vocal campaigner, Aodhrua Fitzgerald, from a rare form of cancer was another blow to the community and its campaign.
In fact, it wasn't until about a year ago that Graham and Help Not Harm really began to focus on medical cannabis. It was also around this time that they got to know a woman called Vera Twomey, whose daughter Ava suffers from a severe drug-resistant form of epilepsy called Dravet's syndrome. This is an extremely debilitating illness which can see Ava have multiple seizures every day, many of which can leave her hospitalised. Particularly bad seizures put Ava's life at risk.
I called Vera at her home in Cork, which she shares with her husband and three children, and she explained Ava's condition. "Doctors didn't have much hope for Ava at all," she said. "They told us she'd never walk or talk and that we'd have to accept all of these terrible things for her future."
Vera ran her own campaign alongside HNH and other affected families, such as that of Erica Cawley, who has the same condition as Ava. This involved setting up a Facebook page, a petition and making numerous appearances in Irish media. She told me that since Ava began using Charlotte's Web – a product containing CBD, a non-psychotropic compound in cannabis used for medicinal purposes, and legal in Europe and Ireland – her seizures have decreased dramatically. Over the last three months she has had an average of six seizures per month. According to Vera, before she started using the cannabis-based medication "she could have that many in two hours... her life has changed utterly and completely".
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The medicinal cannabis bill was drafted by HNH and the political party People Before Profit (PBP), and in July PBP TDs (the Irish equivalent of MPs) Brid Smith and Gino Kenny submitted it to the Dail (Irish Parliament). In September, HNH organised a global medical cannabis summit, attended both by officials – such as those from the Department of Health – and about 40 patients, many of whom spoke out about the benefits the bill would have on their lives and the lives of their families.
One such man is Mark Gaynor, whose son Ronan was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) – an extremely rare, aggressive, inoperable and ultimately terminal brain tumour that predominately affects younger children – in April of 2015. The family was told that life expectancy upon diagnosis and treatment with radiation is approximately six to nine months. For seven months Ronan has been taking Endoca CBD hemp oil daily, and Mark has done extensive research and is convinced that medical cannabis, coupled with other treatments, is the best chance his son has for a better quality of life.
He explained to me how the ratification of this bill will help Ronan and his family: "Most importantly, Ronan would be guaranteed a safe, lab-tested and reliable supply of medicinal cannabis, enabling us to better manage his neuropathic pain. It would also mean that he wouldn't need or rely on other expensive prescription medicines he has been prescribed, such as fentanyl, buccolam and oramorph [an opioid]." He added that "We would like the Irish government to help, not just by passing a bill which says we can no longer be prosecuted for a criminal act by sourcing and administering cannabis-based medicines to our children to alleviate their suffering, but by placing medicinal cannabis on the prescribed medicines list and helping to also alleviate the financial pressures borne so far by us, our family, our friends and our community."
In early November, Ava suffered a massive fit and had to be hospitalised. At her wit's end, Vera decided that she would walk the near 200 miles from her Cork home to Dublin to confront minister for health Simon Harris, who despite previous calls and meetings with her had still not delivered on promises to help. Under the glare of the media, and with Vera 21 miles into the walk, Harris called her and told her to call it off – that he was going to do something.
"We met him the following week," said Vera. "He said he was going to try and get an exemption for our daughter, and we're still working on that, but they are trying. The legislation was due to be brought to the Dail in January, but due to the efforts of a number of politicians it was brought forward to December 1st."
On the day of the bill Vera and Graham were giving a talk about medicinal cannabis to the European parliament when Vera got a text message from Simon Harris' assistant, telling her that the government would not be opposing the bill. It came as a shock to the pair.
This bill is very much the beginning – there is still work to do – but the foundations have been laid, and some form of legal medicinal cannabis will become a reality. Importantly, though, the people behind the bill – and the beneficiaries of it – do not want to see a restrictive version applied. All patients are different, so what is needed is a diverse amount of products on offer.
Ireland has a chance to lead the way in this pocket of Europe, setting examples for other countries like the UK to follow. So here's hoping the government won't water down this legislation and undermine the hard work done by all those trying to bring much needed relief to those in need.
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