MDI at the Irish Presidency Conference: Closing the Gap Between Approval and Access

I was delighted to receive an invite from the Minister of Health Jennifer Carroll MacNeill, to attend the Irish Presidency Conference on Clinical Trials and Medicine Access today.

The conference is essentially about how Europe can make the journey from medical research to patient access to medicines faster, more effective and more sustainable. Looking at why there can be a significant gaps between a medicine being developed/approved and patients actually getting access to it across Europe!!

MDI’s recent advocacy campaigns ,Givinostat/Duvyzat, Risdiplam and other treatments for neuromuscular conditions, makes this event timely.

I was impressed that the conference guest speakers from Europe and Ireland where looking at the whole system that determines whether a promising treatment ultimately reaches a patient and not just one silo!

The conference is bringing together EU policymakers, medicines regulators, HTA bodies, pharmaceutical/R&D organisations, patient organisations and international experts.

For MDI, the key question I will be seeking some answers on today and tomorrow:

How do we ensure that people with rare and neuromuscular diseases are not left behind when Europe develops and approves new treatments?

From an MDI perspective, I hope this conference is an opportunity to understand where European medicines policy is heading over the next 5–10 years.

Alan Breathnach
CEO
Muscular Dystrophy Ireland