Northern Ireland’s first ever Rare Diseases Action Plan has been launched by Health Minister Robin Swann on 22 March 2022. Chair of the NI Rare Diseases Partnership Rhoda Walker who spoke at Pharmacy Forum NI’s Equality, Diversity & Inclusion webinar on disabilities held 23 November 2021, was extensively involved in the development of the plan.

Over 110,000 people in NI live with a rare disease. Stemming from the UK Rare Diseases Framework published in January 2022, the NI Rare Diseases Action Plan 2022/23 sets out 14 high-level actions that will be taken forward over the next year by the Department of Health in collaboration with healthcare professionals and educators, researchers and commissioners, as well as rare disease patient organisations and those personally affected by rare disease. The initiative also supports the recently published UK-wide Shared Commitments for Genomic Healthcare.

Action 11: Improving access to rare disease drugs

Responsibility for the development and oversight of the plan’s delivery lies with the NI Rare Diseases Implementation Group. This group brings together key stakeholders across the healthcare system – including pharmacy representatives – within the Health & Social Care Board. 

Of relevance to pharmacy in particular is Action 11 of the plan:

Improve access to rare diseases drugs by producing information resources and developing a clear roadmap for available initiatives to be available in one place. Initiate discussion with delivery partners to consider options for a review of commissioning processes for access to medicines and specialist medicines into the Northern Ireland health system.

In addition, Action 13 aims to improve awareness of and participation in rare disease clinical trials and research studies to test the safety and efficacy of new medicines, interventions and care approaches.

The plan also highlights that the National Institute for Health and Care Excellence (NICE) is currently updating its processes and a number of the changes adopted will support timely patient access to innovative medicines for patients with rare diseases.