Following its launch in 2017, the iFight PID Fund, a volunteer initiative which benefits children diagnosed with Primary Immunodeficiency Diseases (PID) at the American University of Beirut Medical Center (AUBMC) in collaboration with the American University of Beirut (AUB), organized a Cultural Duo Guitar and Flute fundraising concert at AUB’s Assembly Hall. The proceedings of the concert will contribute to fulfill the mission of the initiative: Every child with PID should have the chance to live.
The event was attended by Mrs. Ola Masri Joumblatt, Founder and President of the iFight PID Fund, Prof. Ghassan Dbaibo, Director of the Center for Infectious Diseases Research, Director of the National Neonatal Screening Program for Primary Immunodeficiency Diseases (NaSPID) and member at the iFight PID Fund along with AUBMC Volunteer Group members and senior AUB and AUBMC healthcare practitioners and staff.
“Around 60 to 65 children are born in Lebanon every year with severe cases of PIDs, which makes the disorder almost as common as the annual number of new cases of cancer diagnosis among children. Unfortunately, many of these children die before they even get to be appropriately diagnosed and treated,” highlighted Mrs. Ola Masri Joumblatt. “With early diagnosis, proper care and optimal treatment, PID is manageable and can save children from lifelong disabilities, unnecessary vaccinations and lengthy hospital visits. Our aim is to help improve patients’ conditions so they live full and rewarding lives,” concluded Mrs. Joumblatt.
The global incidence of PIDs varies. In the USA for example, it is estimated that 1 in 1200 children has a PID that significantly affects their health. However, lack of awareness means that globally between 70 to 90 per cent of people affected remain undiagnosed, with their healthcare practitioners treating primary immune deficiency related infections as common flus (1). Although there are no accurate figures in Lebanon and the Middle East, the rate is estimated to be 5 to 10 times higher due to intermarriage. If the rate is at least like the USA, then it is expected that 60 to 65 Lebanese children and perhaps another 25 to 30 Syrian children are born with PID in Lebanon every year. Currently, these children go to different centers in Lebanon and are not always evaluated by PID specialists. Many of them die before they are diagnosed.
“Our mission is to support children with PID through enhancing screening and facilitating diagnosis and treatment to patients with primary immunodeficiencies,” said Prof. Ghassan. “Our continuous efforts are a testimony to reinforcing the future vision of establishing a comprehensive specialized center for PID in addition to supporting advanced research to help protect our community,” he added.
Upon its establishment in 2017, iFight PID Fund with the endorsement of the Ministry of Public Health (MoPH) launched the National Program of Neonatal Screening for Primary Immunodeficiency Diseases (NaSPID), a preventive public health program that is carried out in many countries across the World. Supported by MoPH, supervised by iFight PID Fund and directed at the Center for Infectious Diseases Research (CIDR) at AUBMC, NaSPID is the first such program in the MENA region. It enables early identification of some of the severe forms of PID that, without detection and treatment, can lead to death at an early age in affected children.
Starting April 2018, all Lebanese hospitals became obliged to conduct PID screening test on each newborn in Lebanon. Such a procedure will have a positive impact on decreasing the number of infant mortality and will help iFight PID Fund get accurate data. The testing is done in coordination with AUBMC and Université Saint Joseph, Medical Genetics Unit.