The region of Middle East and North Africa, mostly referred as MENA countries are a group of approximately 21 countries with a total population of about 400 million with an estimated 10 million newborn birth every year. Each country in the MENA region is diverse with respect to population size, healthcare system and epidemiological transition. The region is also characterized by extremely high incidences of consanguineous marriages as a consequence of which, high risk of genetic disorders are very common.
Hereditary diseases and congenital disorders (also called birth defects) are mostly responsible for a considerable percentage of perinatal and neonatal mortality in many countries in the region. Diseases like Thalassaemias, sickle-cell anaemia and glucose-6-phosphate dehydrogenase (G6PD) deficiency are more common among the MENA populace.
Newborn screening is at its nascent stage, it is either started on a pilot scale, or it is yet to start in most of the MENA countries. Although, few MENA countries do have fully-functional NBS programs as a part of their national health program, in most of the other countries of the region, NBS is developing slowly and faces multiple challenges. These challenges include geographical challenges, leadership support, proper planning and execution methodologies, protocol development and so on.
For the successful and sustainable implementation of NBS throughout the complete MENA region, the following steps needs to be undertaken.
- MENA countries should make NBS mandatory for at least one condition. Advanced academic and research institutes of the region should work in this direction and shall expand screening programs.
- MENA countries should share technologies, expertise, skills and resources among themselves. Regional co-operation would not only help in increasing awareness about congenital diseases but it would also help in widening the reach of NBS programs. Also, countries should explore avenues to enter into partnership outside the region for greater benefits.
- Countries shall create data archives and communication systems to store and share information related to congenital disease prevalence, NBS programs, healthcare providers and so on. This would not only create a database of pediatric health status in the region but it would also be an important tool for management of long-term and follow-up care.
- A central NBS organization should be formed in the MENA region for supervision of rare health conditions, orphan diseases and control of NBS programs across the region. This establishment should also be capable to impart required knowledge, skills and trainings for health professionals.
- Existing NBS programs should be provided with required funds and technical support so that they keep on functioning smoothly. Also, options to expand those programs must be looked into. Some of the less-developed or developing NBS programs should be integrated with advanced NBS programs to expand more.
- Advanced laboratories and research facilities should be established with advanced resources to look into congenital diseases and inborn errors of metabolism in the MENA region.