The “ifight PID” Fund at AUBMC founded by Ola Masri Joumblatt, is a volunteer initiative that benefits children diagnosed with Primary immunodeficiency diseases.” ifight PID” fund started in 2017 at the center of infectious diseases research at AUBMC.
Once the PID program at AUBMC was established, it was immediately recognized that financial help was needed. Diagnostic tests were extensive and expensive, treatment options were costly and ongoing, and the main therapeutic approach, bone marrow transplantation, was beyond the financial reach of the majority of our families.
1. Assistance with payments for expensive laboratory tests and Hospital admissions. Assistance with payment for IVIG for patients who require life-long treatment as well as short-term treatment (e.g. following bone marrow transplant).
2. Establishment of diagnostic tests that are currently not available in Lebanon but are referred to outside labs in Germany and the USA. These tests when available will cost only a fraction of what they cost at commercial laboratories. Most of these tests will be genetic and functional assays.
3. Payment for bone marrow transplantation performed at AUBMC. Currently, patients who could benefit from bone marrow transplantation to treat their PID either have to raise funds (around 150,000-200,000 Euros) to go have the procedure done in Europe (mostly Italy) or $600,000-850,000 to be done in the USA, or die while waiting. Unfortunately, we have only done a handful of cases at AUBMC due to the limited financial means of families and, until recently, due to the lack of the essential equipment to perform the un-matched bone marrow transplants, which represent the majority of cases.
4. We plan to expand our bone marrow transplantation service for PID at AUBMC. In this regard, the hospital has agreed to discount the cost of the bone marrow transplant from $90,000 to $60,000 in order to expand the opportunity for eligible patients. For Lebanese patients, the Ministry of Health, National Social Security Fund, or the Armed Services will pay a variable part of the cost (almost 30% as average). Thus, we plan to raise funds so that we can perform 3 cases per year in the immediate future by raising $40,000- 50,000 per case.
5. Support basic research in immunology and infectious diseases improve our understanding of PID and understand the underlying mechanisms. This will not only contribute to the welfare of our patients but also to patients all over the world who will benefit from the cumulative research on PID and the improved understanding of the mechanisms of immunity and infection. It is only through these advances that new breakthroughs in the treatment of PIDs and related conditions will occur.
6. Establish a national neonatal screening program in Lebanon so that every newborn baby is screened at birth for the presence of the severe forms of PIDs that require immediate transplantation. This will significantly improve the outcome of these babies because they can be transplanted before they acquire any infections that can significantly compromise their response to transplantation.
The global incidence of PIDs varies. In the USA, it is estimated that 1 in 1200 children has a PID. In Lebanon and the Middle East, the rate is estimated to be 5-10 times higher due to intermarriage although there are no accurate figures. If the rate was at least similar to the USA, then it is expected that 60-65 Lebanese children and perhaps another 25-30 Syrian children with PID are born in Lebanon every year. This is almost as common as the annual number of new cases of cancer diagnosed in Lebanon. Currently, these children go to different centers in Lebanon and are not always evaluated by PID specialists. Many of them die before they get diagnosed.