July 18, 2023

Strengthening the Indonesian PID Patient Community at IPIPS Family Day 2023

After being constrained by COVID-19, family members of the Indonesian Primary Immunodeficiency Patient Association (IPIPS) gathered for the second time to share experiences and joy at the IPIPS Family Day 2023 event. The event took place on May 28, 2023 at the Twin House, Cipete, Jakarta and 12 families of IPIPS members and their children as well as doctors, advisors and physicians who support primary immunodeficiency (PID) patients were in attendance.

World Primary Immunodeficiency Week (WPIW) is held every year on April 22-29, to raise awareness and concern for PID globally. IPIPS Family Day 2023 was a part of this year’s WPIW event.

At IPIPS Family Day 2023, the Chairperson of the IPIPS Board of Advisors and Supervisors, Dr. Dina Muktiarti, Sp.A (K), shared brief information regarding PID. In her presentation, Dr. Dina said that the birth rate in Indonesia is 4.5 million per year and an estimated 450 babies are born with PID per year. However, to date, only 70 patients have been registered in Indonesia.

“To get a diagnosis of PID, immunological and genetic tests in Indonesia are still limited, not widely available, and quite expensive,” explained Dr. Dina.

IPIPS President, Dimas Adhi Sugiharto, conveyed similar issues in his presentation about the Patient Database Development Work Plan. As stated by Dimas, limited access and health support facilities are major challenges for PID in Indonesia. Only three of 2500 hospitals in Indonesia are able to provide diagnosis and treatment of PID.

“Therefore, the project to create a database (registry) for PID patients from IPIPS is the initial step towards building a diagnosis support facility,” added Dimas.

The establishment of the Indonesian PID patient database is also related to the WPIW  2023 theme, “turning real-world data into knowledge for better primary immunodeficiency treatment”. Registered data of PID patients can assist in taking action to develop a strategic PID care plan.

In addition to sharing information updates about PID in Indonesia, IPIPS Family Day 2023 was also filled with games and door prizes that enlivened the event. The 12 PID patient families who are members of IPIPS also shared news and experiences with each other in the family talk session.

After all, through IPIPS Family Day 2023, it is hoped that communication will be created among doctors and IPIPS members, and, at the same time, that PID patient families will get the latest information about PID as well as support from fellow IPIPS members.