Globally, there are significant disparities in the recognition and support given to patients with primary immunodeficiencies (PIDs). Even when these patients experience serious impairments (which may not always be visible), adult PID patients are often not deemed eligible for disability support.
In light of this issue, IPOPI has recently released a position statement advocating that PIDs causing a heavy disease burden should always be considered a disability. As such, affected patients should receive the necessary long-term financial and practical assistance. It is important to note that patients should not be denied their right to disability support simply because PIDs are rare.
This statement has received endorsement from APSID, ARAPID, ASID, CIS, ESID, INGID, LASID, and SEAPID, listed in alphabetical order. To learn more about this position statement, please refer to the full statement here.
We are proud to announce that IPIA has taken a significant step towards securing greater support and care for patients with Primary Immunodeficiency Diseases (PIDs) in Ireland. We recently sent a copy of IPOPI’s statement, along with a letter to the Health Minister, urging the government to recognize PIDs as a disability. This recognition will be instrumental in ensuring that patients receive the necessary support, care, and treatment they require to manage their condition effectively. Furthermore, recognizing PIDs as a disability will help to increase awareness of these serious conditions among the public and healthcare professionals. At IPIA, we remain committed to advocating for the rights of patients with PIDs, and we look forward to working with the health ministry to achieve this vital recognition. Stay tuned for further updates on our progress toward improving the lives of PID patients in Ireland.