IPIA’s Press Relase
Primary Immunodeficiency in Ireland Equal Access to Home Therapy & Lifesaving Treatment – IPIA – Conference Meeting 2018
– Dublin, Saturday 21st April 2018 – Today the Irish Primary Immunodeficiency Association (IPIA), a patient-led support group for patients with primary immunodeficiency (PID) invited all members, patients, and healthcare professionals to their annual conference at City West Hotel in Dublin. The objective of the meeting was to celebrate World Primary Immunodeficiency Week (April 22nd – 29th), to learn about advances in diagnosis and care from associated healthcare professionals, and to discuss the challenges facing patients and their families in Ireland today. The focus of this year’s World Primary Immunodeficiency Week is “Early testing and diagnosis of Primary Immunodeficiency makes a world of difference”.
In an emotive morning session, two families shared their experience of travelling to the UK for bone marrow transplant (BMT). In spite of the excellent care they received both in Ireland and in Newcastle, significant difficulties exist for families undergoing this process. Both sets of parents described feelings of isolation from their family and support network and the stress associated with leaving unaffected children in the care of family and friends while they attended to for their affected child undergoing BMT in the UK. We also had an emotional testimonial outlining the challenges of a young adult living with Hereditary Angioedema (HAE), a very rare and potentially life-threatening immunological disorder.
Saara Keima from the International Patient Organisation for Primary Immunodeficiencies (IPOPI) gave international and EU updates. In her speech, she mentioned that although medical research and progress over the last decades have led to the development of lifesaving treatments, such as immunoglobulin replacement therapies, BMT, gene therapy, and contributed to greater understanding and knowledge of the diseases, it is estimated that around 70-90% of people living with the different forms of PID remain undiagnosed.
Dr. Ronan Leahy, Paediatric Immunologist from Our Lady’s Children’s Hospital, Crumlin, discussed both the deficiencies in current Paediatric Immunology service provision in the HSE and the progress that has been made. Among the priorities that Dr Leahy identified is the incorporation of a test for severe combined immunodeficiency (SCID) in the newborn screening program. SCID is the most severe PID, but can be identified reliably at birth using the “heel-prick” test. Early detection leads to greatly improved outcomes in patients with SCID and is cost-effective. Dr Leahy is working to have this added to the Irish newborn screening programme. Dr. Leahy also spoke about the need to develop a BMT service for children with immunodeficiency here in Ireland to avoid the need for parents to travel abroad for therapy.
Dr. Ciara O’Rafferty discussed the logistics of setting up a bone marrow transplant service for immunodeficiency in Ireland. As a paediatric BMT unit already exists in Dublin and there are now skilled medical staff in Ireland who could provide such a service, she described how feasible this should be in the near future if there was sufficient political will to make it a reality.
Dr. Mary Keogan, Consultant Immunologist at the Beaumont Hospital spoke about the
importance of PID patients having timely access to life-long immunoglobulin (IgG) replacement therapy to prevent severe and recurring infections. IgG is traditionally administered intravenously (IVIG) on a day case basis, although we also have the alternative of using subcutaneous administration of IgG (SCIG) as home self-infusion. – Successful Home Therapy requires proper education, training, and supportive care, but ultimately offers better quality of life as well as being better value for the healthcare system. Access to SCIG therapy should be available to all suitable PID patients who require immunoglobulin replacement. Dr. Keogan commented that the Immunologists have developed a Model of Care aiming to increase the proportion of Irish PID patients availing of Home Therapy and is working with the HSE to put arrangements in place to implement this plan.
It was a very emotional and informative meeting. The committee and members of IPIA wish to thank their sponsors, (IPOPI, Octapharma, Caragen), without whose help the meeting could not have taken place. We look forward to next year’s event.