The Rare Disease Ghana Initiative, a national alliance for persons with rare diseases, is calling on stakeholders to make screening of babies compulsory in Ghana’s healthcare system to reduce child mortality.
According to the group, this can reduce the country’s overall disease burden, increase life expectancy and initiate procedures into adequately managing rare conditions.
As part of its efforts in tackling this issue, Rare Disease Ghana Initiative, with the support of Roche Pharmaceuticals, will organize an online campaign throughout the month of September.
Also, a webinar on the theme “Screening Babies: The pathway to Reducing Infant Mortalities and Disabilities” is scheduled for 24th September 2021 to engage the stakeholders.
The webinar targets clinicians, caregivers, medical laboratories experts, researchers and policymakers to influence the newborn and baby screening policy to fruition with adequate and sustainable resourcing.
Newborn screening is a public health service program for early identification of rare genetic, hormone-related, endocrine and metabolic conditions for which early and timely intervention can lead to the elimination or reduction of associated mortality, morbidity and disability.
As the name suggests, newborn screenings are usually conducted for babies within 48-72 hours after birth in developed countries. However, these screenings can continue till the baby’s 5th year of life.
The newborn screening program was introduced in Ghana in 1993 by the Sickle Cell Foundation Ghana to commence the screening of babies for sickle cell diseases due to the high prevalence of the disease.
However, the education and efforts put in raising awareness for sickle cell diseases have not been channelled to other genetic conditions that are equally life-threatening and disabling, although other rare conditions can benefit from the program.
In 2010, the national program of newborn screening was introduced under the sponsorship of the government’s ministry of health to screen all babies for selected diseases after birth as a complement to the newborn screening program for sickle cell disease but failed to achieve its mandate due to funding. So far, about 17,000 babies have benefited from the sickle cell screening program.
Ghana’s revised national health policy aims to promote, restore and maintain good health for all people living in Ghana while achieving universal health coverage. However, the document admits that health services are not appropriately designed to account for populations with unique needs such as the disabled, aged, persons with genetic disorders.
The policy further intends to adopt a life course approach to make it increasingly and appropriately reflective of the complex nature of Ghana’s disease burden and ensure the availability of equitable care for respective population cohorts. Screening of newborns and babies can help achieve this. Yet not much effort has been directed towards screening babies, as it can go a long way to reduce infant mortalities and disabilities.