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Edgework is a concept that describes situations where people exist close to the edge between life and death, safety and danger and must use significant skill to navigate their way across, and survive, this edge.

When we look at the lived experience of cancer patients, we can see that many people find themselves living in a similar edge space between certainty and uncertainty, life and death. They must confront and navigate existential edges, existential threats, as well as real, immediate serious challenges.

This perspective helps us see the patient as an active presence, someone who is navigating risk with the help of their social networks and health professionals.

It encourages us to see the courage and adaptation capacities of patients as they deal with life and death situations, and the new forms of awareness, connection and purpose that can come with their negotiations of the edges that their cancer presents to them.

Cancer as a form of sociology edgework

Lynch Syndrome: Exploring the Potential of mRNA in Cancer Prevention.

Moderna recently received authorisation from the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) for a Phase 1/2 clinical study evaluating mRNA-4194, an investigational mRNA-based vaccine for people with Lynch syndrome, an inherited condition that increases the risk of cancer. 

They anticipate the first trial participant to be dosed sometime this summer, this is the first step toward advancing a novel mRNA approach that aims to shift care from treating cancer after its diagnosis to preventing cancer from occurring.

By applying mRNA technology earlier in the patient journey, the goal is to harness the immune system when it could have the greatest impact.

mRNA technology works by instructing cells to produce specific proteins that can train the immune system to recognize and respond to disease. In the case of Lynch syndrome and mRNA-4194, they are investigating whether similar principles could train the immune system, specifically T cells, to detect and eliminate cells that carry these abnormal mutations before they grow into tumours. 

This is just at the beginning of this journey, and there will be important insights along the way, deepening understanding of Lynch syndrome and the potential of mRNA technology to address this high unmet need.

https://www.modernatx.com/media-center/all-media/blogs/potential-mRNA-cancer-prevention

What is Lynch syndrome?

Lynch syndrome is an inherited condition that increases the risk of several cancers, especially colorectal cancer.

What is a cancer-prevention vaccine?

Unlike vaccines that prevent infections (such as flu or COVID-19), these vaccines are designed to train the immune system to recognise and destroy abnormal cells before they become cancer.

What are researchers working on?

Scientists have found that many Lynch syndrome–related precancerous cells share common genetic changes (called neoantigens). This means it may be possible to create a vaccine that helps the immune system target these cells early. 

Key updates

• Researchers have identified promising vaccine targets in Lynch syndrome–associated precancers. 
• Several early-stage vaccine studies and clinical trials are underway.
• The goal is to reduce the risk of cancer developing, rather than treating cancer after it appears.
• These vaccines are still experimental and are not yet part of standard care.

What does this mean for people with Lynch syndrome?

• The research is encouraging and could lead to new ways of preventing cancer in the future.
• Regular screening (such as colonoscopies) remains the most important proven method of cancer prevention right now.
• Some people may be eligible to participate in clinical trials studying preventive vaccines.

Bottom line

Researchers are making progress toward a vaccine that could help prevent cancer in people with Lynch syndrome. The science is promising, but these vaccines are still being tested and are not yet available for routine use. Regular surveillance and current prevention strategies remain essential. 

https://www.cgaigc.com/post/updates-in-vaccine-chemoprevention-in-lynch-syndrome

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???

Click to access ActionMan2023.pdf

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.

https://www.linkedin.com/posts/ucan-ireland_codes-of-practice-activity-7472329732932395008-Dqo1?utm_source=share&utm_medium=member_desktop&rcm=ACoAABs3g3EBzKjRijqM-dZ6l7MG8TrOKYFA0ws

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?