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NEWBORN SCREENING
IN LEBANON AND THE MIDDLE EAST:
REALITIES, NEEDS AND PROSPECTS FOR COLLABORATION
Issam KHNEISSER
Newborn Screening Manager
Saint Joseph University (USJ)
Beirut, Lebanon
INTRODUCTION
• Large economic disparities among Middle-East
countries:
* From low-income: Yemen, Egypt…
* To oil-rich economies: Gulf countries…
* With war-torn countries: Iraq, Sudan,
Palestine
• Affect the buying power of the state and the
individual in terms of health expenditures
INTRODUCTION
• Large disparities in health care delivery system:
* From almost totally public: Yemen, Oman…
* To mixed patterns: Gulf countries, Jordan…
* To mostly private: Lebanon, Palestine…
• Health policies rarely based on evidence
obtained from health system research.
INTRODUCTION
•
In all ME countries, congenital disorders
remain a major concern in pediatric morbidity,
mostly in relation with persistent high levels of
consanguinity
•
Various levels of mandatory newborn
screening (NBS) programs in ME countries:
mostly congenital hypothyroidism, sickle-cell
anemia, phenylketonuria
INTRODUCTION
1. Pilot from King Faysal Hospital, Ryad, KSA, to
be expanded soon (Leader in TMS)
2. USJ and AUB (Lebanon)
3. Congenital hypothyroidism in Egypt
4. Piloting to restart in Kuwait
5. Piloting in Qatar to be expanded by 2009
6. PKU, Sickle cell, CH, CAH and TMS UAE
7. Piloting metabolic disorders in Yemen
8. CH and PKU screening pilot in Jordan
9. Piloting metabolic disorders in Oman
10. CH in Iran
11. Piloting Hemoglobinophathies in bahrain
Introduction
• Collaboration for Quality Assurance :
- KSA, Lebanon and CDC NSQAP
- UAE UK NEQAS
• Collaboration for Quality Improvement for
MS/MS:
- KSA and Lebanon
«www.region4genetics.com»
INTRODUCTION
MOST IMPORTANT OBSTACLES:
• Absence of technical structures which forces
specimens to be shipped out:
* Yemen to KSA
* Qatar to Heidelberg, Germany
* Lebanon to Hamburg, Germany
2. Unavailability of funds for global screening in
countries with high birth rates
3. Lack of specialized physicians and treatment
facilities/capacities
LEBANON
• Population estimated at 4 millions with 70,000
newborn babies per year
• USJ-NBS program actually covers about 20% of
newborn babies.
• AUB-NBS covers about 3% of deliveries which
occur at the AUB Hospital
• Many private hospitals have their own particular
screening programs for CH and various
hemoglobinopathies
• About 60% of newborns do not benefit from any
neonatal screening for various reasons
LEBANON
• Since 1996, USJ a private, community-based
university chartered in 1875, has established an
out-of-pocket money NBS center covering 4
diseases:
• In 11 years, 130,000 babies have been
screened:
–
–
–
–
85 cases of Congenital Hypothyroidism: 1/1500
720 cases of G6PD Deficiency: 1% among boys
13 cases of Phenylketnuria (1 DHPR,10 PKU, 2 HPA)
4 cases of Congenital Galactosemia (2 Classical, 2
Duarte).
LEBANON
•
Since November 2006, an expanded screening pilot study was
launched in collaboration with the Hamburg newborn screening
laboratory.
•
Includes in-born errors of metabolism: fatty acids, amino acids,
organic acids…
•
Abnormal results are reported within 5 days after shipment.
•
Assuring a confirmatory analysis and follow up.
•
Technical capacity transfer to Beirut will be done though expensive.
•
Challenge: keeping cost as low as possible for out-of-pocket clients.
CONCLUSION:
AVENUES FOR COLLABORATION
1. Finding the financial and political will to expand and
mandate neonatal screening programs to all newborns
2. Seeking funds for equipment acquisition or leasing to
buy
3. Improving in-country collaborative efforts to avoid
multiplying costly equipment with no return on
investment
4. Running cost-effectiveness analysis tool for decision
making
One good first step in Lebanon (and elsewhere):
Setting up a National Advisory Committee for Neonatal
Screening soon.
THANK YOU