Securing access to cutting edge cancer drugs is the initial focus of a new patient advocacy group, United Cancer Advocates Network (Ucan) Ireland.
Co-chairwoman Miriam Staunton, who was diagnosed with stage 3 melanoma back in 2018, says that the group brings together advocates across Ireland who have been living with a range of cancers.
“While traditionally we have been advocating in our own disease areas, now we come together to speak as one voice on key issues that impact the whole cancer community,” she said.
She described access to drugs as the “most pressing issue” for cancer patients. “This is an issue that has been dragging on for many yeas and is getting progressively worse,” she said.
Minister for Health Jennifer Carroll MacNeill was in touch with the new group just ahead of its formal launch on Wednesday to say that she was happy to engage with them.
Ucan Ireland says reports from the OECD and industry groups show that Ireland is much slower to approve new cancer drugs and approves fewer new medicines in the area than most other countries in western Europe.
She notes that Denmark approved the use 36 European Medicines Authority-approved medicines in an average of 134 days between 2019 and 2022 while Ireland backed the use of just 14 and took an average of 600 days to do so, citing a paper from the Irish Pharmaceutical Healthcare Association (Ipha), which represents drug developers.
“The OECD paints a similar picture on access to medications deemed of high clinical; benefit,” she said. “Ireland languishes in 21st of 25 places, with access to under 40 per cent of these high benefit medications.
“To make matters worse, many countries also have early access schemes so patients can access medications while health technology assessments and negotiations on price are under way. In Ireland patients are forced to wait.”
Medicines account for about €3.3 billion – over 13 per cent – of the about €3.3 billion – of a HSE budget that contends with perennial overruns.
Finding the money for new, often expensive, cutting-edge treatments as they come on stream requires either savings from the existing medicines budget or the allocations of additional funds in the budget.
Many of the advocates in Ucan Ireland have personal experience of the difficulty in access critical drugs.
James Hastings, who is co-chairman of the new group was diagnosed with stage 4 cancer of the bile duct in mid-2023. A husband and father of these boys, he said hearing the diagnosis was “devastating”.
He was told that palliative chemotherapy was his only option, news that he said “felt like a death sentence”.
“But the real shock came when I discovered that there were immunotherapy drugs that could make all the difference. Yet there was no access to them in Ireland under the HSE’s reimbursement system.
The drug had been approved for a number of cancers by the EU regulator – the EMA – including, six months earlier, his.
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“My oncologist even tried to secure compassionate access but the answer was ‘no’. It was heartbreaking to know that a potential lifeline existed but I couldn’t reach it,” he said.
In the end, €300,000 was raised locally and across Ireland to allow him access treatment in London.
Ucan Ireland said the current system of medicine reimbursement in Ireland is failing patients and, it alleges, falls below standards elsewhere in Europe.
Cancer patients do not have time on their side, says Mr Hastings.
Ms Staunton, who was told that she would have to wait until her cancer progressed to stage 4 – a terminal diagnosis – to access the treatment that has since worked for her, concurs, adding that patients are dying because they cannot access certain medications.
While welcoming Programme for Government commitments to review drug reimbursement structures, invest in new innovative treatments, investigate early access and look for a more co-ordinated approach at EU level, Ucan Ireland notes that there no timelines in the programme for delivery on any of those issues.
“The general public are not aware that they cannot access many life-saving or life extending medications here,” she says.
