Beyond HIV testing: the case for sickle cell screening in Uganda

In the realm of healthcare and marriage preparation, the significance of HIV testing has long been emphasized as a critical step towards ensuring the health and well-being of couples.

However, recent revelations highlight another pressing concern that deserves equal attention: the prevalence of sickle cell disease and trait. According to information from Uganda Sickle cell Rescue Foundation, an NGO founded by business honcho Dr Bulaimu Muwanga Kibirige (RIP), the national prevalence of sickle cell trait stands alarmingly high at 13.3 per cent, with certain districts having rates as high as 23.9 per cent.

Sickle cell disease, a more severe form, affects 0.7 per cent of the population. These statistics underscore the urgent need for heightened awareness and proactive measures to address this silent but significant health challenge. It is no secret that sickle cell disease poses serious health risks, impacting not only individuals but also families and communities.

The genetic nature of the disease means that carriers of the trait can unknowingly pass it on to their children, potentially resulting in the birth of children with sickle cell disease. This hereditary condition can lead to lifelong health complications and, tragically, premature deaths if not managed properly.

In Uganda, as in many parts of sub-Saharan Africa, there has been commendable progress in HIV prevention and treatment efforts. However, the same level of attention and resources must now be directed towards sickle cell screening and management. Unlike HIV, sickle cell disease is not preventable through behavioral changes but can be managed effectively with early detection and intervention.

Newborn screening programs, though still in their infancy in many African countries, have shown promising results in identifying children with sickle cell disease early on. This enables timely medical interventions that can significantly improve health outcomes and quality of life for affected individuals.

The argument for integrating sickle cell screening into pre-marital health checks is not merely about expanding the checklist of tests but about ensuring informed decision-making and proactive health management for couples. Just as prospective partners discuss family planning, financial stability, and future goals, understanding each other’s genetic health risks is crucial for making informed choices about starting a family lest you shoulder the heavy burden of a lifetime treatment.

A 2022 study by the American Society of Hematology said individuals with siickle cell disease spend approximately $1.7 million on disease-related medical expenses over their lifetime.

These findings highlight the enormous economic burden affecting individuals living with sickle cell disease and raise questions about how medical advancements, like gene therapy, may one day factor into the cost of care.

As Uganda advances in various sectors, including healthcare, it is an opportune moment to advocate for comprehensive health policies that encompass both infectious diseases like HIV and genetic conditions like sickle cell disease. Government, healthcare providers, and civil society must collaborate to raise awareness, build capacity for screening, and ensure access to affordable treatment options for those affected.

In conclusion, while HIV testing remains paramount, the inclusion of sickle cell screening in pre-marital health assessments is a necessary step towards promoting healthier families and communities. It is time to broaden our perspective on preventive healthcare and prioritize the well-being of future generations by addressing this significant yet often overlooked health challenge.

The writer is a journalist and a public health professional.