It has been documented that infants with sickle cell disease are at risk of death in early infancy and that with appropriate services this risk can be minimized. Therefore, it should be a societal goal to give every infant with sickle cell disease in this country an opportunity to avoid a preventable death associated with the disease. I wish to present what, in my judgment, is required to achieve that goal and a brief rationale for each provision. These judgments are based upon 18 years of experience in designing and administering sickle cell service programs and 13 years of serving as president of a national sickle cell organization.
Every state must have a program designed to achieve the goal (currently only 13 states do) and the program must be underwritten by the state. Traditionally, the provision of personal health services has been considered a governmental responsibility when the following three conditions are met: the lack of services has dire consequences, effective services can be provided, and the solution requires a population approach. Sickle cell disease in infancy meets these criteria. The Government's responsibility is to provide or require the service and to provide or ensure financial support.
Each state's plan must require by state law that all at-risk newborns are tested. The various voluntary programs have been initiated, implemented, and nurtured by committed experts in large communities and their experiences cannot be generalized to small communities where devoted and skilled sickle cell leaders are not present. It should be optional for the various states to decide whether the law requires all newborns to be tested.
A prevalence survey on leprosy and the possible role of village 10-cell leaders in control in Muheza District, Tanzania