In a recent episode of Disability Matters, hosts John Comiskey and Patrick O’Donnell spoke with Emma Wallace, Member Services and Advocacy Senior Coordinator with Cystic Fibrosis Ireland, and Louise Patterson, parent advocate and campaigner for equitable access to medication.
Together, they explored what cystic fibrosis (CF) is, how it affects daily life, and why access to new treatments remains a matter of urgency for some families in Ireland.
What Is Cystic Fibrosis?
Cystic fibrosis is a genetic, multi-organ disease that primarily affects the lungs and digestive system. It is caused by a fault in a protein that regulates salt and water movement in the body, leading to thick, sticky mucus that can cause serious complications.
In Ireland, CF is usually identified early through the newborn heel-prick test, allowing children to be connected quickly with specialist hospital teams. Ireland also has one of the highest rates of cystic fibrosis in the world, with close to 1,400 people currently living with the condition.
Advances in Treatment — and the 10% Left Behind
Emma highlighted how treatment for CF has changed dramatically over recent years, particularly with the introduction of CFTR modulator therapies, which can significantly improve lung function and quality of life.
Currently, around 90% of people with cystic fibrosis are eligible for these modulators. However, approximately 10% fall outside existing eligibility criteria due to rare or complex genetic mutations.
Louise Patterson spoke powerfully about this gap. Her son Aaron has one of these rare mutations — shared by only a small number of people worldwide — meaning he has never had the chance to trial medication that could potentially slow disease progression.
Research now suggests that up to half of this 10% group may still benefit, but because of the rarity of their gene types, traditional large-scale clinical trials are not feasible.
A Call for Individual Patient Trials
Louise outlined a campaign calling on European regulators to allow individual, consultant-led medication trials, similar to models already used in countries like France.
Under this approach, patients are given access to medication for a limited period, carefully monitored, and allowed to continue only if clear benefits are shown.
“This isn’t about giving medication blindly,” Louise explained. “It’s about offering hope where there is evidence — even if the numbers are small.”
Life with Cystic Fibrosis: What Often Goes Unseen
Louise also shared what daily life looks like for families living with CF. While life may appear “normal” on the surface, there is an enormous hidden workload:
• Multiple daily medications
• Inhaled therapies and physiotherapy several times a day
• Strict hygiene routines
• Constant vigilance around infections
• Frequent hospital admissions when unwell
Simple things many people take for granted — holidays, swimming pools, planning months ahead — require careful consideration and flexibility.
The Role of Cystic Fibrosis Ireland
Founded in 1963, Cystic Fibrosis Ireland was established by parents who recognised the need for dedicated support, advocacy and community.
Today, the organisation provides a wide range of services, including:
• A dedicated Support Desk (9am–5pm)
• Patient advocacy and signposting
• Financial grants, including fertility and exercise grants
• Online parent support groups
• Investment in research and awareness
• National fundraising and community engagement
Emma emphasised the importance of peer connection, particularly as people with CF cannot meet in person due to cross-infection risks. Online supports have become a vital lifeline for families.
Research, Advocacy and Community
CF Ireland works closely with European partners, clinicians and researchers, ensuring Irish families stay informed about emerging treatments and trials.
Fundraising efforts — including walks, marathons, community events and 65 Roses Day — directly support services, research investment and advocacy campaigns.
Getting Support After Diagnosis
Anyone newly diagnosed with cystic fibrosis, or supporting a loved one, can contact Cystic Fibrosis Ireland directly:
📞 01 496 2433 (Monday–Friday, 9am–5pm)
Emma closed with a message of gratitude to families, donors, volunteers and healthcare teams — and a renewed call for fair access to treatment for all people with CF, regardless of how rare their gene may be.
This interview aired on Disability Matters with John Comiskey and Patrick O’Donnell on 92.5 Phoenix FM, a programme produced by Blanchardstown Centre for Independent Living (BCIL).
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