Open Letter to Minister Simon Harris

Irish Primary Immunodeficiency Association

Top Field Clonegath Fenagh Co Carlow. R21 X314

Mobile: Maria 0872369031

Email: pidinfo.ipia@gmail.com

6^th June 2019

Minister Simon Harris,

Department of Health, Office of the Minister,

Block 1, Miesian Plaza,

50 – 58 Lower Baggot St., Dublin 2

D02 XW14

Dear Minister Harris,

We in the Irish Primary Immunodeficiency Association (IPIA) represent the interests of patients with primary immunodeficiency disorders (PIDD) in Ireland. We admire your commitment as Minister for Health to constantly improve the quality of care to all patients who access services through the HSE.

In this context, we seek a meeting to highlight issues of significant concern to us as patients and parents. In particular, we are concerned about the following issues

1. Inability to access home care therapies that are essential for the wellbeing of our patients, specifically subcutaneous immunoglobulin replacement therapy for patients with antibody deficiency and C1-esterase inhibitor concentrate for patients with hereditary angioedema. These treatments are standard of care, and available to patients with PIDD in almost all developed countries. Availability in Ireland is restricted, leading to significant morbidity for many of our members.
2. Staff shortages in the specialty of Immunology. Currently, there is only one Paediatric Immunologist serving the needs of the entire country, leading to significant vulnerability in the service. A similar shortfall in staffing is evident in adult services. This places our members at risk of sub-standard care from poor medical decision making and therefore potentially poor outcomes.
3. Inability to access haematopoietic stem cell transplant (HSCT) in the Republic of Ireland for patients with severe PIDD. We feel it is unfair that HSCT is available for children with other medical conditions in Ireland, but not for PIDD. Although HSCT is provided for these patients in the UK through the TAS, the funding provided is inadequate to cover the significant costs associated with travel e.g. accommodation, travel, childcare, loss of earnings etc.

Furthermore, the trauma and psychological strain of having to receive treatment for a life-endangering illness away from family, friends, and other supports is very difficult for our patients and their parents. We want assurances that measures are being taken to ensure that HSCT for PIDD will be made available in Ireland in the near future, particularly within the new CHI campus at St James’s Hospital.

We seek a meeting with you in the hope to address these concerns.

Yours sincerely,

Maria Nolan

Rosa Catraio

Board members: Rosa Catraio-Chair, Martha Gouldsbury-Secretary, Maria Nolan-Treasurer, James Nolan-Assistant Secretary. Committee: Yvonne Rooney, Paul Rooney, Pedro Catraio and Orlagh Woods.