Is sickle cell disease sufficiently prioritized in policy and socio-economic research on diseases in Tanzania? Lessons for the past 50 years

Abstract

Catastrophic health consequences associated with chronic and genetic disorders, including those related to sickle cell disease (SCD) remain lowly measured and understood. Illnesses associated with SCD, especially the, sickle cell anaemia (SCA) pose significant tolls to individual patients and their families and contribute to poverty due to loss in production and retardation of economic development. This paper synthesises evidence from systematic literature reviews on policy priorities both in theory and practice and studies carried out on SCD. The review was systematically done by drawing evidence from published and unpublished literature searched through online search engines and other sources. The magnitude of SCA problem is yet to be adequately measured and documented in terms of the
scale of its prevalence in many countries including Tanzania. However, a few reports available pinpoint Tanzania as one of the African countries with a large number of patients with SCD. Social stigma and discrimination against patients with SCD pose psychological affect to either the individual patients or their family members and this is partly due to low community knowledge on this disease on one hand and the perceived socio-economic disturbances associated with the disease that at times reduce the morale of caregivers/takers in families to attend  patients. A few studies so far seem to have much focused on the medical dimensions of the disease usually reported at health facilities therefore, failing to establish the actual magnitude and socio-economic consequences of the disease, thus limiting the room for more informed policy decisions. Unfortunately, the inadequate public policy and research attention to this disease indicates that there is need for revisiting research and policy agenda towards making a difference in its interventions, and this include creation of public awareness and prioritizing research.