A Clareman who chairs the Irish Lung Cancer Community (ILCC), is part of a new cancer advocate organisation in Ireland which was officially launched this week.
United Cancer Advocates Network or UCAN Ireland is a network of advocates across the island of Ireland, which has been established to highlight issues and drive solutions on systemic issues impacting the cancer community, including the issue of accessing medications.
Along with access to trials, access to medications has been a key focus of Ennis man, Seamus Cotter in his role as ILCC chairperson,
“To that end, I along with other leading cancer patient advocates have founded a new patients network organisation here in Ireland called United Cancer Advocates Network Ireland (UCAN Ireland).
“We have come together with a specific focus on systemic issues impacting our cancer patients and their families around the country.
“We represent a broad range of cancers from across the whole island and we have launched our new organisation this week on the issue of accessing medications.
“We are heartened to hear the Minister for Health, Jennifer Carroll MacNeill, speak of the need and support for change, indeed these are called out specifically in the Programme for Government,” he said explaining how the organisation was set up.
Mr Cotter is a lung cancer survivor, and was one of two patient advocates who represented the ILCC on the steering committee of the recently launched Lung Health Check in the east of Ireland.
As part of the new organisation’s official launch yesterday (Wednesday) the cancer advocates including Seamus, hand delivered a letter to a government representative at The Dáil, for the attention of the Minister for Health.
UCAN Ireland in the letter has called for an investigation of early access schemes, review of the drug reimbursement process, investment in innovative and breakthrough treatments, and implementation of Mazars recommendations.
“These are all initiatives we support and we want to work with Government to get clear timelines for delivery on these critical items and help support their implementation,” UCAN Ireland said in its statement.
“We represent a broad range of cancers and 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.
“We launch with a focus on our most pressing issue which impacts across many cancers and that is access to cancer medications. This is an issue that has been dragging on for many years and is getting progressively worse.
“We know from several reports by the Organisation for Economic Cooperation and Development (OECD), the European Federation of Pharmaceutical Industries and Associations (EFPIA), and the Irish Pharmaceutical Healthcare Association (IPHA) that Ireland is much slower in approval time and numbers of drugs approved for reimbursement than most of our compatriots in western Europe and indeed across Europe as a whole.
“For cancer medications approved by the European Medicines Agency (EMA) over the period 2019 to 2022 Denmark approved 36 in 134 days while Ireland approved just 14 medications in around 600 days.”
“The OECD paints a similar picture on access to medications deemed of high clinical benefit. Ireland languishes in 21st of 25th place, with access to under 40% 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 (HTAs) and negotiations on price are underway.
“In Ireland patients are forced to wait. Patients die as a result of not being able to access medications. The general public are not aware that they cannot access many lifesaving or life extending medications here. Many of us within UCAN have personal lived experience of this issue,” it said.
James Hastings, co-chair at UCAN who was diagnosed with Stage 4 cholangiocarcinoma (CCA) in June 2023 said,
“…I’m 42, a father of three boys, and husband to Marian.
“Hearing ‘Stage 4 cancer’ was devastating, and being told that palliative chemotherapy was my only option 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 James needed for his cancer was Durvalumab, an immunotherapy available for a number of other cancers and approved for use in his cancer in December 2022 by the European medicines agency
“My oncologist even tried to secure compassionate access, but the answer was ‘no.’ It was heart-breaking to know that a potential lifeline existed, but I couldn’t reach it.
“The current system reimbursement in Ireland is failing patients and falls well below standards in Europe. Cancer patients do not have time on their side.
“Our community rallied around us in ways I could never have imagined.
“People from both my local area and across the country came together, raising €300,000 to get me the treatment I needed in London.
“Without their generosity, I wouldn’t have been able to access the therapy that gave me hope and kept me fighting. It’s something I will never, ever forget,” he said.
While the organisation says it is heartened to see the key resolutions they have outlined also contained in the Programme for Government, there are no timelines for delivery yet.
In addition to Mr Cotter’s signature, the letter was also signed by Miriam Staunton Chair UCAN and Melanoma Support Ireland; James Hastings Co-Chair UCAN and CCA Ireland; Niamh Conroy UCAN Secretary and Bowel Cancer Ireland; Roberta Horgan UCAN Communications and Lynch Syndrome Ireland; Martin Sweeney UCAN Co-Secretary representing prostate cancer; Cynthia Cosme Cravo UCAN member representing metastatic breast cancer; Siobhan Freeney UCAN member and Lobular Breast Cancer Ireland; Melody Buckley UCAN member and Ocular Melanoma Ireland; Pamela Deasy UCAN member and Pancreatic Cancer Ireland; Michael Rynne UCAN member and CLL Ireland, and Bridget Carr UCAN member and Ovarian Cancer Support Ireland.
Sharon Dolan D’Arcy covers West Clare news. After completing a masters in journalism at University of Galway, Sharon worked as a court reporter at the Sligo Weekender. She was also editor of the Athenry News and Views.