The key objectives for the population screening program in the UAE:
- Compare the cost of treatment of genetic blood disorders and cost of prevention of genetic blood disorders through population screening program.
- A national screening program for the common genetic blood disorders was launched in 2006 and is ongoing. It aimed at identifying thalassemia, sickle cell anemia, and G6PDH carriers in the UAE population.
The government conducted a nationwide population screening program for genetic blood disorders in which tests were performed in individuals aged 20 years and older.
- The objective of this study was to evaluate the life-time cost effectiveness of a national population-based screening program and the saving that could be done by doing a population based screening.
- The screening was done to identify the carriers of genetic blood disorders to promote a supportive network for other common genetic disorders and implementing necessary prevention program.
Case Study: Emirates Free from Births of Thalassemia Children by Year 2012.
The national health campaign, Emirates Free of Thalassemia 2012 was launched to raise awareness on thalassemia and tackle public health concerns and related issues for creating a healthy community.
The benefits of screening tests lay not only on an early detection of the disorder, but also preventing the birth of children born with thalassemia major. As in the case of all hereditary recessive diseases, there is a 25% chance for the child of thalassemia-carrier parents to become affected, another 50% chance of which will be carriers, while the rest go on seemingly unaffected.
At the launch of the campaign, thalassemia was a major public health issue in the UAE, which affects so many families at social, medical, financial, and psychological levels. Blood screenings campaigns, in general, are the best way to help reduce the presence of hereditary diseases in the country and this campaign was a first step in identifying a problem that could extend for generations to come.
The screening program was developed by the scientific committee after an in-depth study of the existing prevalence, and challenges and the structure and scope was designed to meet the standards prescribed by WHO.
The WHO Effectiveness Criteria of Screening has a checklist to assess the effectiveness of a screening program:
The target disease should be a substantial health problem.
- The disease should be diagnosable in a latent or pre-symptomatic phase.
- The natural course of disease – should be understood.
- A simple, safe and sufficiently precise screening test should exist to detect the target disease.
- The screening test should be accepted in the target population an effective treatment should be available.
- Treatment outcomes should be the better the earlier the disease is detected.
- An adequate infrastructure for screening, diagnostics, and treatment should exist costs of a screening program (including test, diagnosis and treatment) should be in a proper relation to total costs of a disease.
- Screening for a disease should be a continuous process (incidence screening) instead of a singular event (prevalence screening).
The campaign team led and guided by UAE GDA, comprised of 500 volunteer university students from 13 educational institutions within UAE such as Higher Colleges of Technology and UAE University and Dubai Women’s College. The campaign volunteers worked on the mission of educating the population about common genetic disorders (such as thalassemia, Sickle Cell Anemia, G6PD Deficiency & Diabetes) and informing them about the free screening and counselling services.
Impact of the population screening program between 2007 to 2016:
- The post campaign surveys showed that the awareness of genetic screening increased among student communities relatively from 6 %to 96%.
Cases detected and the financial savings.
- The screening test costs 120 dirhams ($33) in UAE GDA lab.
- Price of caring for a child with thalassemia, estimated at 1.2 million dirhams ($327,000) up to the age of 16.
UAE Genetic Diseases Association is founded in 2004 with the mission to strive to reduce the prevalence and impact of common genetic disorders in the UAE through preventative awareness programs, screening based on research studies and knowledge sharing, conducted by experts in the field using the most innovative technology at the lowest costs.
In line with the UAE Vision 2021 National Agenda which aims to achieve a world-class healthcare system, UAE GDA work towards:
- Empowering the Community with credible, available, affordable, preventable tools, and information on genetic disorders.
- Increase awareness of the common genetic disorders in the UAE and the region.
- Share information about tools and services available for these common genetic disorders, especially preventable disorders.
- Emphasis on bringing more awareness about the role of genetics in everyday life and how people can lead a healthier life and minimize risks of genetic diseases with simple and easy tips.
- Breast cancer
- Celiac disease/gluten intolerance
- Childhood cancer
- Duchenne muscular dystrophy (DMD)
- Familial hypercholestremia
- Neural tube defects (NTDs)
- Sickle cell anemia
- Vitamin D deficiency