People living with cancer and a consultant treating cancer patients were among those addressing the Irish Pharmaceutical Healthcare Association conference. This week we are telling their stories in their own words.
In July last year Bernard Mahon was living a healthy life. He was on a Mediterranean diet, went to the gym five days a week and swam every day. At weekends he would go climbing and, as he and his wife were into northern soul, they would regularly go to dances.
On what was a typical morning for the Maynooth University lecturer he was heading into work “but as I was going upstairs I felt breathless, and I thought that’s unusual. And then I was sitting at my desk and started to have chest pains. I’m a 62-year-old man – chest pain, breathless, what could this be? So I went to the cardiac clinic. Fantastic service and they said your heart’s fine, but your iron levels are low and that’s a worrying sign.”
Mr Mahon went for a series of tests. “And basically within six weeks of medicalisation and jumping from one doctor to another I was sitting in the office with [Prof] John Reynolds, and John said to me, ‘you have stomach cancer. And normally I would have said at this point [we’ll try] new adjuvant therapy, but it’s operable. You’re stage 4.’
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“I mean six weeks from zero to nothing was just, you know, startling, unreal, surreal in some ways.”
Mr Mahon spoke to a second consultant on his team, medical oncologist Prof David Gallagher. He told Bernard his team had done a molecular characterisation of his cancer. The verdict? “He told me it was grim, but there was immunotherapy combined with chemotherapy which does work very well in my particular genetic make-up.
“‘But unfortunately it’s not available on the public system', he said. So I thought that’s dramatically unfair but fortunately I do have health insurance. He said: ‘Well unfortunately your insurer doesn’t cover it either.’
“And you sort of think, you know, when you’re watching the adverts of a little girl with the big balloon that they’re all wonderful and helpful, and actually there’s an amazing difference even in the private system.
“So I had to advocate myself with my insurer. I’m an articulate guy and I’m incredibly networked. And I was able to shame, basically, my insurer into providing...I’d paid for myself the first few immunotherapies but eventually I got access on compassionate grounds.
“I suppose the thing that struck me was, firstly, how unfair it is. You know, I can mobilise people. I was able to do the social media campaign. I was able to use the radio, and I could mobilise these things when I was still well enough. But there’s a huge network of friends. Through force of circumstance and everything else I’ve managed to get access to the therapy I need.
“John Reynolds said he wouldn’t give me [a guess of how long he had to live] ... Patients will ask how long. And consultants never want to answer that question to you, but 13 months was sort of average for stage 4 stomach cancer. And we haven’t got time.
“You know, when we hear [approval for a drug will take] 400, 500 days. To us that means something dramatic. It isn’t for you. That will be a wonderful thing in the future, but we haven’t got time. I went through a lot, my family went through a lot. I lost 17 kilos over eight weeks.
“But then there were certainly something almost miraculous about the immunotherapy. Suddenly, after my second dose, the weight started to come back on, I started to get a bit more energy.
“And just in January, David was saying the PET scan showed that the secondaries – I have secondaries in the adrenal [gland], in the kidney. And those and the lymph nodes can’t be detected. It doesn’t mean it’s clear but they can’t be detected, and the primary on the stomach is much reduced. So, we are, I suppose, walking examples of the effect of new and innovative therapies.
“I feel great! This is the crazy thing. Honestly since mid-January to now I’m feeling... ow, I feel tired but I’m 62, you know. I just put it down to being that’s just the way it is. But a lot more energy, a lot more appetite, I still feel a bit nauseous, I still feel a bit tired, but chalk and cheese since December. You know?
When Mr Mahon started on the immunotherapy his doctors had been cautious.
“‘This works very well on a percentage of patients, and you may or not be in that group’, they said. And that’s okay, that was a good enough opportunity for me. And when I saw David in January he was saying this has worked as well as we could have possibly hoped for. And that for me is fine.
“It means I’m back in work, part-time anyway. The likelihood is that my son’s getting married in the summer, that I’m going to be able to see that. That’s the sort of thing, you know. It is surreal. If you’re not in that situation you don’t fathom what these timelines and dates mean.
“Last Christmas there was the song by Wham, Last Christmas, and everyone was listening. My kids were there, and they think it’s a song about infidelity. But I was there thinking this could be my last Christmas. In fact, it might have been. And I couldn’t listen to that...well, whatever the virtues of Wham I couldn’t listen.”
More than most Mr Mahon knows exactly how much the treatment that has given him this extra time is costing, as he had to find the money for it himself initially.
“I know very well because I had to take from the money we put aside for our son’s wedding – €8,000 a dose and a dose every six weeks, so over €1,000 a week.
“The course of treatment is six months in the first instance, and possibly a year, possibly two. I mean, I may have another fight with my insurer precisely for the fact that I’m too well.
“But what really shocked me is that this is not solely a financial issue. It’s a delivery issue. Everyone I’ve ever met in the Civil Service, in the HSE, are wonderful, committed [people] to patients. But somehow the system isn’t serving us.
“Back last August or September I was chatting to my adult son and daughter, and they were saying how are we going to deal with this? And their first thought was a GoFundMe campaign. And I said absolutely not. My consultant saying this is the best drug for me. The EMA have approved it, other countries have approved it.
“It is my right to get that drug, not to compete against the child with scoliosis or the, you know, the Ukrainian families who are struggling, and frame myself within a bigger picture of misery to get more money. That is not the way I want to go.
“I want what is my right, nothing more, nothing less. That’s all I want. So, you know, the fundraising, let’s all go out and have jumble sales is nonsense. Sorry.”
