1. How long have you been a medical cannabis patient?
I had surgery in April 2015 to remove a grade 2 tumour in my brain. The surgeons believed the had gotten 100% of it, however in October that year, they found a small recurrence and therefore recommended a round of chemotherapy and radiotherapy. I was afraid of those treatments at the time and made the decision to treat myself with what was known then as Rick Simpson Oil, a high thc concentrate made from cannabis. I made a call to a friend who had spoken about the benefits of this oil for cancer patients, and they gave me a contact for a man up north who was making cannabis oil for cancer patients. I met this man two days later in a fast food restaurant in Longford, and he brought the oil with him. I was expecting it to be a gangster type, however it was a man in his sixties who looked like a farmer. He was a gentleman, and explained all about the cannabis oil and how he believed it was able to treat cancer and regulate the systems in the body. We are still friends to this day.
2. How did being diagnosed with cancer affect your relationship with cannabis?
Being diagnosed with a brain tumour really turns your world upside down. It’s one of the most aggressive cancers there are, there is no cure, so you are classed as terminal. I was told that at anytime the cancer could mutate, and I could have three months to live if it did. Before that, I used to think that cannabis was a harmless drug that people used recreationally. I was willing to try it because I was convinced that conventional treatment would have me dead within a year. I did some research that confirmed that cannabis was being tested in labs and was causing death of cancer cells without effecting other healthy cells, unlike chemotherapy and radiotherapy that I was offered. I knew I was playing a high risk game, but I couldn’t face being sick in hospital and all the appointments that came with it, I would rather die than go down that road at the time. I didn’t want to be an inconvenience to anyone, especially for my wife and four children – they needed their Dad around the house and cannabis was going to allow this to happen.
3. Were the benefits immediately affective or did you notice an improvement over time?
There was an immediate improvement with mood and anxiety when I started taking cannabis oil. It gave me a new perspective and allowed me to accept my diagnosis. There was a feeling of being connected to all things, and the universe being involved with my recovery. I got my next MRI scan in Ballinasloe Hospital two weeks after starting the oil, which came up on the report that there was no cancer present. My wife and I couldn’t believe it, however neither could the consultant in Beaumont who was still pushing for chemo/radio treatment. I went for another scan in Beaumont a few months later, this report showed that there was still a small recurrence there. I was given two years to live if I didn’t take conventional treatment. I was so confused. My wife and I had seen the report from Ballinasloe on the computer screen with our own two eyes where it said there was no cancer found.
I was continuing to take cannabis oil, and eventually got a licence to import it from the Hague. The recurrence stayed stable for a few years after that until a scan in 2019 had shown an enhancement around the area. The consultant in Beaumont and I became friendly as he had seen the tenacity in me, and told me that now was the time to take the treatment while I was still relatively healthy and strong. I thought that cannabis had given me a good quality of life and it would protect me from any of the major side effects involved in chemotherapy and radiotherapy. I was delighted to have gotten an extra year of life than originally told. The consultant told me that there was a new tablet form of chemotherapy, where I wouldn’t have to go to hospital and could take it at home so that convinced me to give it a try.
The first part of the treatment was 6 weeks in St. Luke’s for radiotherapy 5 times a week. I lost a bit of hair where they were treating but other than that no other side effects. It was like a little holiday in beautiful surroundings. It was the same with the chemo, no side effects and I was actually growing hair during it. I was so well during treatment that I ran in the election in 2020.
We were over the moon when the subsequent scans showed two reductions in a row. My latest scan showed there was only scar tissue left. After the treatment was over, I saw they were doing trials on brain tumour patients with the same combination that I was being treated – tablet chemo, radiation and a 50/50 mix of THC and CBD oils, and the results were promising so it all made sense.
4. How did Patients For Safe Access begin?
Throughout my treatment I was writing and producing dance music, and as part of my recovery I started doing dj gigs for charity with a dj collective in Athlone. In 2017, Clodagh who was organising the gigs had a friend that was great pals with a guy in America who had great experience in cannabis and could help. I got a call a few weeks later from Martin O’ Brien of Patients Care Collective in San Francisco. We both loved dance music and we had both lost our Mothers due to cancer so we had common ground. Martin was a great support during this time. We’d chat on the phone every few weeks trying to come up with solutions on accessing safe cannabis for patients across Ireland. We became like brothers. One day Martin calls, and suggested that we should put the group together, he was already a part of an organisation called Americans For Safe Access who had managed to change laws in the states, and we could have all their resources at hand to make our own organisation here in Ireland. Martin also brought Don Duncan to the table, Don is a director of Americans for Safe Access, and really helped us set up Patients For Safe Access by training us in how to run a non-profit organisation. We also took on Martin Condon who was making waves as a cannabis activist and Alicia Maher, a medical cannabis refugee and law student as directors to plan and setup all the work to get PFSA off the ground.
5. What are the ambitions for PFSA?
We’ve been working hard to change the publics perception of medical cannabis, and the ultimate goal for us is to gain safe access to medical cannabis for anyone who can benefit therapeutically. Patients in Ireland are suffering needlessly and this needs to change. We have received countless emails about patients having to source cannabis treatment through the black market, and spending all their money just to alleviate symptoms. The question is “If cannabis doesn’t work for all these conditions, then why is there so much evidence for cannabis treatment, and why are there an ever increasing amount of doctors all over the world prescribing it? Are all those doctors wrong?” We are chipping away until the levee breaks, and are making great progress so far. The highlight for me was getting a call from a pain consultant in Beaumont asking about medical cannabis, how to prescribe, what products were available and recommended dosage – he believed that PFSA was the group that facilitated access for patients. Since then, we have updated our website to have scientific information on conditions that can be treated with medical cannabis, alongside testimonies from doctors and patients so that medical professionals can see the evidence for themselves with references to the studies.
6. On a scale of 1 - 10, 1 being the worst. How would rate the current Irish medical cannabis access program?
I wouldn’t rate it at all. It’s as bad as it can get. It’s so restrictive that you nearly have to be dead before you can get access. Even then the hoops you have to jump through to gain access can be very stressful for a patient, and unless you are under the three conditions, you have to pay for it as a private prescription which have crippled some families financially including my own. The general public think that the medical cannabis situation is sorted here in Ireland due to the introduction of the medical cannabis access program, but this is far from the truth.
7. What is your interaction with the Department of Health been like?
I have to say that the Department of Health have always been courteous and helpful. Like a lot of doctors in Ireland, they are not really educated about the endocannabinoid system and the science behind the benefits regarding cannabis treatment, and the current laws do not allow them to gain education, research and training that’s needed. However, it does not stop there. The HSE are responsible for the funding of medicinal cannabis, and my dealings with them at management level has been exhausting. I was being funded by the treatment abroad scheme until January 2020, when an audit took place an the decision to take medical cannabis off the scheme was implemented. This is where PFSA will be tackling next. We need medical cannabis on the medical card or government scheme just like all the other medicines and won’t stop banging on doors until we have access for all patients who can benefit.
8. Does Ireland need a cannabis advisory board to assist policymakers in making informed decisions?
It does, but it shouldn’t. Unelected civil servants seem to have the control. There is more than enough evidence, that a dog with a hammer in its arse could make an informed decision on policies surrounding the use of medical cannabis.
9. How many years until you see Irish patients being able to access medical cannabis for a range of ailments?
I would have thought we would be there by now so I can’t put a date on it, but one thing is for sure, we will get there in the end. Patients For Safe Access are gaining new members every day. We’ve managed to bring the cannabis patient diaspora together with a unified message that the powers that be cannot ignore.
You can follow Kenny Tynan on Twitter via @kennytynan
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