ABSTRACT
“An ounce of Prevention is worth a ton of Cure”.
Much of ill health can be prevented, and prevention is vital to improving individual as well as population health. This is particularly true for the most common inherited blood disorder – sickle cell disease – a debilitating, lifelong disorder, notoriously associated with poor quality of life and reduced life expectancy in affected persons, as well as tremendous pressure and burden on individual, family and state finances. Fortunately, with advancement in technology and medicine, sickle cell disease can now be prevented through a number of interventions, including Pre-implantation Genetic Diagnosis (PGD).
This chapter explores the origins of PGD and its evolution over time. It describes PGD – focusing on PGD for sickle cell disease, enumerating its various components, chronicling its comparative advantage and noting that it is currently the only option available for eliminating the high risk of having a child with a genetic disease prior to implantation.
With information from review of literature, records and interviews, the chapter discusses issues around barriers to accessing PGD in various regions of the world, highlighting sub-Saharan Africa (SSA); issues ranging from awareness and knowledge of PGD, through attitude, to issues of availability, cost, ethics, morality, religion, policies and legal restrictions.
It finally makes recommendations, including urging countries of SSA to prioritize sickle cell disease as a public health problem and to implement the WHO African Regional Office (AFRO)'s Framework Strategy for sickle cell disease. It also enjoins advocacy groups in the region to hold governments accountable for funding and implementation of sickle cell prevention and control programmes.
It further recommends regulation of PGD globally, suggesting that stakeholders develop protocols which will guide the practice of PGD, noting that, with technological advancement, the future is indeed bright.
