December 17, 2021
New publication presenting the PID environment in 60 countries
IPOPI is pleased to share its recent publication on “The PID Principles of Care: Where are we now? A global status report based on the PID Life Index”. This publication is structured around the six PID Principles of Care, published in 2014 and revised ahead of the development of the PID Life Index in 2020, to consider advances in the field in recent years.
The revision resulted in the following six principles: PID diagnosis, treatments, universal health coverage, specialised centres, national patient organisations and registries for PIDs.
The PID Life Index is an interactive tool aggregating national PID data, and the tool used to measure the implementation status of these principles. A questionnaire corresponding to the principles was sent out to IPOPI’s national member organisations and to countries in which IPOPI had medical contacts, and data was gathered from 60 countries.
The data demonstrates that, regardless of global scientific progress on PIDs with a growing number of diagnostic tools and better treatment options becoming available, the accessibility and affordability of these remains uneven throughout the world. Although some countries do perform better than others, to date no country has fully implemented the PID Principles of Care, confirming the long way ahead to ensure optimal environment for patients with PID in every country.
Read the full publication.