Launching of the National Program of Neonatal Screening for Primary Immunodeficiency Diseases (NaSPID)

 

The aim of the National Program for Neonatal Screening for PID is to detect babies with PID at a very young age, before onset of severe and recurrent infections, so they can be successfully treated and cured by bone marrow transplantation.

The ceremony was attended by Ms. Bahia Suleiman representing the Minister of Social Affairs, Pierre Bou Assi, Dr. Walid Ammar, General Director of the Ministry of Public Health, Dr. Antoine Shallita representing, Dr. Reymond Sayegh, President of the Lebanese Order of Physicians, Dr. Nuhad Dumit, President of the Lebanese Order of Nurses, Father Salim Dakkash, President of Saint Joseph University, Dr. Fadlo Khuri, President of AUB, Dr. Ziyad Ghazzal, Interim Director of the Medical Center and Associate Dean of the Faculty of Medicine representing EVP/ Dean Mohamed H. Sayegh, Dr. Roland Tomb, Dean of the Faculty of Medicine at USJ, and Dr. Soha Ghanem representing the President of the Lebanese Pediatric Society.

Dr. Ghassan Dbaibo, Director of the Center for Infectious Diseases Research (CIDR) at AUBMC, emphasized the burden of primary immunodeficiency diseases (PID) among Lebanese children indicating that the number of annually diagnosed children is similar to that of children with cancer. “There are around 250 types of primary immunodeficiency diseases caused by genetic defects; some of which might be mild and present with recurrent infections that can be treated while others might be devastating and lead to early death from severe infections within the first one or two years of age,” he explained. He added, “Though these diseases might be considered rare if taken separately; however, as a group, PID form a significant emotional and financial burden on parents and different health guarantors.”

Dr. Dbaibo praised the efforts done by Mrs. Ola Joumblatt that eventually led the Ministry of Public Health to endorse the early detection screening program. He explained, “Due to these efforts, Lebanon will be a pioneer in the early detection of PIDs among countries in the MENA region and low to middle-income countries in general.” 

Mrs. Ola Joumblatt thanked the MOPH for believing in iFight PID motto “Every child with PID should have the chance to live”. She reminded the attendees about the aims of the iFight PID Fund at AUBMC that was founded around two years earlier to help children with PID. “iFight will financially support families in providing treatment to their children with these diseases especially those with the severe form that requires bone marrow transplant and to develop a program for neonatal screening for PIDs,” she explained.

Mrs. Joumblatt also announced that the program will kick off starting March 2018 and that weekly workshops will be organized by the CIDR at AUBMC starting 27-January-2018 for all hospitals and pediatricians. She concluded by thanking all those who contributed to establishing this program including H.E. Mr. Hasbani, Dr. Walid Ammar, Dr. Joseph El-Helou, and Dr. Jihad Makkouk from MoPH. She also thanked Dr. Fadlo Khuri, Dr. Mohamed H. Sayegh, Dr. Ziad Ghazzal, Chairman of the Department of Pediatrics and Adolescent Medicine, Dr. Miguel Abboud, Dr. Ghassan Dbaibo and Mr. Walid Katergi. 

After greeting H.E. Mr. Hasbani for his dedication to improve children’s health, Father Salim Dakkash from Université Saint-Joseph de Beyrouth (USJ) discussed the university’s long history and experience with neonatal screening which triggered them to participate in the national program in this event. He emphasized the importance of both cooperation and a competitive spirit in advancing the medical field and ensuring the best for children and their families. 

AUB President, Dr. Fadlo Khuri highlighted Lebanon’s wealth in human resources and the obligation to use these important resources for improving the health system in Lebanon. He also mentioned that with the limited financial resources and confined number of medical centers that are capable of dealing with rare and serious diseases such as PID, it’s important for these resources to integrate their knowledge and experiences as with USJ and AUB, in order to avoid unnecessary duplication and waste of resources.

H.E. Hasbani concluded the press conference by focusing on the importance of the collaboration between the government, community, NGOs and academic institutions in the improvement of a community’s health status. He also thanked iFight PID, AUB, and USJ for their cooperation and their continuous efforts to save and improve children’s lives. In addition, he assured the audience that all babies born under the coverage of the MOPH will have the screening test done with no additional costs and hoped that all other guarantors’ parties would collaborate with NaSPID to end the suffering of many children.

The press conference was followed by a video promoting the National Program.