Author: Lynch Syndrome Ireland
Men’s Health Week 2026
Men, on the island of Ireland, experience a disproportionate burden of ill-health.
The week focuses on several actionable and educational targets:
- Awareness: Highlighting that males, on average, die younger and face higher death rates across most leading causes.
- Early Detection: Emphasising prevention, regular check-ups, and seeking help early to prevent medical issues from escalating.
- Actionable Steps: Challenging men to take small, realistic actions to improve physical and mental wellbeing, rather than striving for perfection.
Are Women Braver or Smarter than Men in this vital area???
Patient Advocates IN not OUT
Patients hold the key to better research, better healthcare and better outcomes.
“UCAN Ireland welcomes the publication by IPHA of important new clarity on patient advocate access at medical conferences, now live on the IPHA website.
The guidance makes clear that while there is a legislative basis for restricting non-Healthcare Professional access to promotional areas at conferences, this should never be used as a reason to exclude patient advocates and other non-HCP delegates from valuable non-promotional scientific sessions or communal spaces.”
’Patients’’ includes:
“Individual Patients” who are persons with personal experience of living with a disease. They may or may not have technical knowledge in R&D or regulatory processes, but their main role is to contribute with their subjective disease and treatment experience.
“Patient Advocates” who are persons who have the insight and experience in supporting a larger population of Patients living with a specific disease. They may or may not be affiliated with an organisation.
“Patient Experts”, who, in addition to disease-specific expertise, have the technical knowledge in R&D and/or regulatory affairs through training or experience.
“Patient Organisation Representatives” who are persons who are mandated to represent and express the collective views of a patient organisation on a specific issue or disease area.
“Carers”, who are persons supporting individual Patients such as family members as well as paid or volunteer helpers.
Waiting Lists….whats happening?
Over a 15 month period the HSE recorded an average of over 42,000 missed appointments each month.
What is going on? At a time when it is difficult to get an appointment to see most Physicians.
The main reasons could be….. forgotten appointments, long waiting times, communication problems (letters or texts not received), transport or work commitments, illness, and patients deciding they no longer need the appointment.
Is it just poor administration management by the HSE?
Or should there be more Patient engagement around appointments?
Prevention isn’t profitable
I have learnt that effective cancer treatment can be life-saving.
I have also learnt that surviving cancer is profoundly life-limiting.
My life was saved by the very best of our reactive model of cancer care, and I live with its costs every day. These costs have at times been extreme. Because of the urgency of my diagnosis, I was not able to store a sperm sample and, when I was later offered the chance after treatment, little remained. There are many parts of the world I will probably never visit because I need to remain within reach of hospitals in case of obstruction. Because of my acquired anatomy, I develop many kidney infections each year, travel with prophylactic antibiotics and live with regular discomfort. Yet I am alive, and that was not expected.
I belong to a transitional generation. My parents’ generation faced cancer largely as a death sentence. Mine faces it as survivable but devastating, a bargain in which you trade your body and your simplest pleasures for the right to keep breathing.
The question now is whether the generation after mine will have to make that same bargain, or whether we will have had the courage to spare them from it entirely.
We need healthcare systems to understand that without prevention, the projected rise in cancer cases will overwhelm them. And we need political leaders to fund cancer prevention not as a footnote to treatment budgets but as a priority in line with what is at stake: millions of lives that need never be disrupted, diminished or destroyed by this disease.
Prevention….Prevention….Prevention
What do patients wish they had known when they first heard the words, “you have cancer”?
In this powerful conversation, three cancer survivors share what it was really like to navigate diagnosis, treatment decisions, and immunotherapy – often without the guidance or support they needed.
“Hope in Action: A Patient’s Guide to Cancer Immunotherapy is a clear, compassionate resource designed for anyone impacted by cancer-patients, caregivers, and loved ones alike. It explains what immunotherapy is, how it works, what to expect during treatment, and how to get support every step of the way.
Click to access CRI_Patients-Guide-25.pdf
Minister details plan to review system for approving new drugs
Minister for Health Jennifer Carroll MacNeill says she has signed off on a plan for an end-to-end review of Ireland’s system for approving access and funding for new drugs and medical treatments.
The review to take around six months and it would form part of wider efforts to ensure medicine reimbursement decisions are made within 180 days of an application being submitted by pharmaceutical companies.
“This builds on new framework agreement targeting that reimbursement decisions are made within 180 days versus where we currently sit at around 600 days for oncology treatments. Getting from where we are to where we need to be requires exactly the kind of structural review that has now been commissioned.” UCAN Ireland
What does it mean to live with risk not disease?
If you’re a clinician or researcher in this space, the question isn’t:
“How do we give people more information?”
A better question is:
“How can we help equip & support patients to live with an uncertainty?”
VUS-
Variant of Uncertain Significance is a genetic test result indicating a change in your DNA, but scientists currently lack enough data to know if it is harmless or causes disease.
Determining whether a genomic variant is truly disease-causing is a rigorous scientific process.
“It requires robust evidence, internationally agreed standards, and often detailed discussion within multidisciplinary teams of clinicians, laboratory scientists, bioinformaticians, and genetic counsellors. Variants are not simply “found” and reported; they are carefully evaluated, challenged, and reviewed before any meaningful conclusions can be drawn.”
First trial of vaccine to prevent Lynch syndrome-associated cancers approved to start in Oxford
This MHRA authorisation marks an important milestone as we explore approaches to shift cancer care from treating disease to preventing it.
Phase 1 of the INTERCEPT-Lynch trial, which is funded by Moderna, sponsored by the University of Oxford and run by the University’s Oncology Clinical Trials Office with support from Oxford Cancer, has received authorisation from the Medicines and Healthcare products Regulatory Agency and is expected to begin recruiting participants this summer.
It will test ‘mRNA-4194’, an investigational mRNA-based vaccine developed by Moderna, which is designed to help prevent cancer in people with Lynch syndrome.
“People with Lynch syndrome live with a very high risk of developing cancer, often at a younger age than the general population. The INTERCEPT-Lynch trial represents a meaningful step in our efforts to prevent Lynch syndrome-associated cancers before they develop”
Lynch Syndrome Ireland 