People living with cancer were among those addressing the Irish Pharmaceutical Healthcare Association conference. So too was Prof Gráinne O’Kane, a medical oncologist at St Vincent’s University Hospital, who specialises in pancreatic and liver cancers. This week, we have been telling their stories in their own words. We conclude today with Prof O’Kane’s memory of a particular patient.
“Certain patients will always stick with me and so this patient, about three years ago I met in St James’s Hospital – I worked there first when I came back [from Toronto] – and a physician had rang me to say, ‘Look, Gráinne, this patient has liver cancer, I don’t know if you’re going to be able to do anything: the liver is really sick.’
“And I knew there were new drugs that this patient could avail of. What is amazing about our system is – we cannot forget – is that we have such global expertise in this country. This patient got access to specialist physicians, we managed to optimise the patient’s liver, but I couldn’t access the drugs that I needed as standard of care.
“Now this was 2022, in May. The patient was very angry. He was due to get married. And I thought how am I going to get this patient the drugs that the patient needs?
“And I want to point out two things. I’m from the North, and I have private health insurance. This patient has neither. And in May 2022, the drugs have been approved in the North since December 2020. So, I’m sitting in a system going, ‘Why can’t I get this patient drugs?’
“We managed to get the patient drugs. The patient is still alive, and that patient was told he had six weeks to live.
“We got the drug through a compassionate access programme. And so that patient is contributing to society and that patient got married. And you can’t put a price on some of those things for patients.
“But what I was really passionate, and I suppose angry, about was that that patient, if he was in the North, could have accessed the drugs. And if that patient had private health insurance, that patient could have accessed the drugs without me having to fill out and beg for access to drugs where they’re considered standard of care, already EMA [European Medicines Agency] approved 2½ years previously.
“It takes physicians a lot of work to apply for these drugs. There’s a lot of forms; sometimes you’re literally begging and having to provide evidence for the drugs, depending on what the drugs are.
“But, in this case, the patient was able to get access to the drugs fairly quickly, within three months, I’d say. And that patient responded dramatically within a short period of time.
“Those drugs just became reimbursed [in the Republic] in 2024. 2024. So, that’s over three years after EMA approval and availability in the North of Ireland. We cannot live on an island where we want to increase our partnerships across the Border and have that disparity across the board.
“I had another patient – and this is where I struggle as a physician, and many physicians struggle, you know – with a different type of liver cancer who came to me. She had a relationship with the public healthcare system and I had to send her to the private hospital system to access the drugs that this particular woman needed.
“She is still in the private healthcare system. I still talk to her all the time because, ultimately, we do develop relationships with our patients over a period of time. But we’re now in this position where in order to access standard of care drugs, you’re having to send them to the private healthcare system.
“Ireland is recognised for the experienced oncologists and surgeons that we have in this country. You’re trained to the highest degree here and we go abroad, and we come back with expertise. Patients should be able to avail of that expertise.
“I’ve no doubt the first patient I mentioned, whom we got the drugs for within three months, if that patient wasn’t aware of the drugs that were available, that patient would be dead within four months for sure. And so that patient is still, as I said, alive and working three years later, contributing to society and has had a dramatic response to therapy.”
O’Kane says that fighting with the system to get the medicines you need is absolutely destructive for a physician. “It really takes its toll and I think it is very hard for us as clinicians to work in that system. But we are trying to strive for the very best for our patients to bring innovations to this country to develop clinical trials. It’s definitely difficult personally also.”
Prof O’Kane is not blind to the need to consider cost when it comes to sanction therapies.
“For sure, cost has to be considered in how we look at our drugs. We look at cost-effectiveness. But the reality is that the process has been delivered in large clinical trials, and I am a strong believer in overall survival benefit and quality of life benefit – the two end points that I hold on a pedestal for our patients that they need to deliver on.
“That goes through European Medicines Agency for approval. So, that process has happened. This has already been approved. I’m thinking again of my own diseases, cost-effectiveness wise in many of our European countries. So, what is a patient’s life worth in Ireland compared to Portugal? Or Lithuania?
[ ‘I wasn’t sick enough to access life-saving cancer therapy’Opens in new window ]
“And how is it that we in Ireland, where we have the second highest GDP and income in Europe, we are positioning ourselves where we are at the bottom of the table, if you look at oncology medicines, in terms of reimbursement? I struggle to understand that, I really do.
“Of course I think of cost. And I’m the first person if I am using drugs and I do not think they’re working, I will absolutely stop the drugs.
“But to [patient advocate] Miriam [Staunton’s] point where Miriam mentioned the neighbour with the private health insurance. We’re in this position now where I’m sitting and asking that question, and I hate it. Do you have private health insurance? But then what do I do? Do I tell the patient who doesn’t have private health insurance, who is low income, who has five kids at home, that there is a drug that you could potentially access, but it costs this amount.
“We just have to think about what we’re trying to do here and what identity we want to have in Ireland given our position in Europe.
“I can’t even tell you the week I’ve had trying to get patients… I’ve been on calls with the US, calls with Europe, trying to get patients who should have access to standard of care treatments, trying to get them on to clinical trials and it is the biggest burden of my life.”
