Introduction

The poignant story of Cahir O'Hagan, a 25-year-old from Clonoe, County Tyrone, is a stark reminder of the harsh realities facing those with cystic fibrosis (CF). As a passionate campaigner for better access to CF medications, Cahir's life was tragically cut short while he was waiting for a crucial double lung transplant.

The Challenge of Cystic Fibrosis

Cahir lived with cystic fibrosis, a genetic disorder marked by the accumulation of sticky mucus in the lungs and digestive tract, and for which lifesaving modulator drugs like Kaftrio, Symkevi, and Orkambi offered hope to many. While these medications have proven effective for approximately 90% of those with CF by tackling the underlying causes of the disease, around 10% suffer from genetic mutations that render these treatments ineffective.

Call for Access to Therapies

A year after Cahir's untimely passing, his brother, Paul O'Hagan, is vocal about the urgent need for continued effort to ensure that all cystic fibrosis patients receive access to essential life-saving therapies. He notes, “Ten percent isn’t just a statistic; it’s about real people facing this devastating illness.”

Statistics in Northern Ireland

In Northern Ireland alone, there are over 500 people living with cystic fibrosis, with adults making up about two-fifths of that population. Paul described his brother as “one in a million,” highlighting his unwavering resilience despite the challenges posed by the disease.

Access to Kaftrio

In July 2020, a landmark decision allowed CF patients in Northern Ireland to access Kaftrio through the healthcare system, alongside previous agreements for Orkambi and Symkevi. This move was lauded by then-health minister Robin Swann, who claimed it would enhance the quality of life for those afflicted. However, the sobering truth remains that not every patient can benefit from these advancements.

The Perspective of Medical Experts

Professor Damian Downey of Queen's University Belfast, a specialist in CF, characterized this era as 'a golden age of CF research,' yet he acknowledges the substantial gap in treatment access for those outside the 90%. “While the drugs have profoundly altered the lives of many, they aren't a cure for everyone,” he said, emphasizing the necessity for ongoing research into solutions for all CF patients.

Cahir's Story

Tragically, Cahir's story is one of the many where current medical advancements did not suffice. Despite receiving all available treatments, he ultimately found himself dependent on oxygen 24/7, with a lung capacity of only 18%. After being placed on the transplant list in March, hope turned to heartbreak when he passed away on October 4, 2023, just months before his wedding.

Paul O'Hagan's Vision

Paul expressed the disillusionment and sorrow his family faced: “It’s heartbreaking that the treatments available won’t help Cahir or others like him. We’ve made strides, but we can’t stop until we’ve ensured that everyone living with CF has access to potentially life-altering drugs.”

Looking Ahead

As Paul O'Hagan rallies for change, he holds onto hope for a future where research continues to advance, and more effective treatments are found for that critical 10% of CF patients. “You don’t stop a job when it’s only 90% done,” he insists, echoing the sentiments of many within the CF community who refuse to accept anything less than full treatment parity.

Conclusion

In summary, as the quest for comprehensive treatment options persists, it is vital that the voices of those impacted—like that of Cahir O'Hagan—drive awareness and advocacy. The ongoing fight for equitable access to lifesaving drugs is far from over, but the community remains resilient in their call for progress.