“Newborn screening is not simply buying a kit or a machine; it’s a whole approach of analysis and interpretation. Now, it’s time to convince the authorities to move forward”, says Issam Khneisser, NBS pioneer in the Middle East and North Africa (MENA) region. Long-time Head of Business for the Newborn Screening Unit at Saint Joseph University in Beirut, Lebanon, he has been involved with newborn screening for more than 20 years. Among other things, his work has included cost-benefit analysis for newborn screening as well as contributing to a model to expand NBS to developing countries.
The MENA region is highly heterogeneous, with great diversity between countries in population, per capita income and health systems. All in all, the region consists of 21 countries, with a population of 440 million and with 11 million annual births. The extent to which MENA children benefit from newborn screening varies greatly from country to country. An improving infant mortality rate in the past decade has led to growing recognition of the value of NBS, yet there is much work to be done.
Great diversity in screening practices
Khneisser divides MENA countries into three groups. First, there are those that have implemented a national NBS program, though with great diversity in panel size. For instance, the United Arab Emirates, Qatar and Kuwait do MSMS screening and have a large panel of more than 25 diseases. Saudi Arabia also does MSMS screening, but has decreased the number of disorders being screened for. Many other countries, such as Iran, Egypt, Bahrain, Palestine and Jordan, only screen for one or two conditions. The first condition included in MENA screening programs has usually been Congenital Hypothyroidism, due to prevalence and cost-effective treatment.
Second, there are countries where selective screening is done, but there is no law or national program for NBS. In Lebanon, for example, community-based private efforts have led to 60 % of newborns being screened for an expanded panel of 28 primary targeted diseases. In Morocco, there is nominally a national program in use, yet only a symbolic portion of newborns is being screened with a positive trend, every year a new center is added since 2013. In Morocco, there is nominally a national program in use, yet only a symbolic portion of newborns is being screened; however a new center has been added yearly since 2013. In Iraq, a huge national pilot study took place from 2013 to 2015. Due to budget cutting, it was stopped in 2016, yet some screening is still being done by sending sample abroad, for instance to Lebanon. In Oman, similar private efforts are taking place. “In Oman, they have made a tremendous effort for a national program. In November 2015, they even gathered sick babies and made a song for the Prince to establish national newborn screening. But still nothing is done”, Khneisser says.
Finally, there are countries where sadly nothing is done, despite private efforts to promote newborn screening, such as Algeria, Libya, Syria, Tunisia and Yemen.
Facing lack of funding, outdated health policies
Why have some MENA countries succeeded in implementing a newborn screening program, while others have not? The economic situation within the region is certainly a great contributing factor. “Funding in Qatar, Saudi Arabia and the UAE has given them an opportunity to do expanded screening”, says Khneisser. However, dropping oil prices have led to cuts in funding even in wealthy countries. For instance, Saudi Arabia reduced their newborn screening budget in 2016. Some countries have problems with complicated bureaucracy and inefficiency. There may even be government funds allocated to NBS, yet no screening is actually done, like in Algeria. Additionally, many countries in the MENA region have outdated health policy ideas, like emphasizing treatment instead of a preventive approach. “Remarkably, in most countries they prescribe the milk for PKU babies, even though they are diagnosed at 3–5 years of age. They don’t do screening, but they support the formula for the milk for the babies when they are diagnosed. This is an additional argument to justify cost-benefit analysis. Most of the money that is currently being paid for the formula could be put to better use, with the outcome of a much higher IQ for PKU babies.”
International efforts needed for start-up regions
Another problem is a lack of strong patient organizations or other local pressure groups. Strengthening them would have a better impact on health policy makers. Khneisser’s own work to bring a newborn screening program to Lebanon has been a hard challenge. “We began 20 years ago as a private effort, preparing the ground for the government to move forward, but still the government is unwilling to move and there is still no law mandating newborn screening. We’re ending up doing the job for the government. For symbolic fees, we are doing a newborn screening panel for CH, G6PD deficiency, galactosemia and expanded screening with tandem mass spectrometry. This only covers the cost of the reagent”, Khneisser explains.
Still, he has hope for positive development in the region. In particular, it should be relatively easy to convince countries where a national program is already in place to add new tests to their program. “Adding another test would only have an extra cost of 1–2 dollars for the whole program bill per individual, contributing to better quality of life for more babies.”
In the start-up countries, there is a will for newborn screening. Yet more support and push from external parties is needed. “Internationally, we have had good efforts from ISNS to support the MENA region, including implementation, technical assistance and work groups. And you especially, PerkinElmer, are investing into a tremendous effort to push governments for a better health service for babies. Since the mid-80’s, your partner HVD has been behind many national program decisions, like in Egypt and other countries.” Yet even great international efforts would come to nothing without the collaboration of local key people like Issam Khneisser, pioneer and leader for NBS.