The Rare Disease Ghana Initiative (RDGI), a National Alliance Non-Governmental Organisation (NGO), has called for the comprehensive screening of all newborns within 48 to 72 hours after birth.
That would ensure the early detection of rare genetic, hormone-related, endocrine (gland secreting hormones) and metabolic conditions (chemical reactions) for immediate intervention to reduce and eliminate their associated mortality, morbidity and disability.
The RDGI, a leading advocacy and coordinating care for undiagnosed and rare disease in the Ghana, in a statement copied to the Ghana News Agency in Accra, said not much effort had been directed towards the screening of newborns in Ghana.
It said the newborn screening campaign was an annual public health service programme held in September to create awareness and sustain education on the urgent need for ensuring the screening of all infants within two to three days after their birth, as in the developed countries.
The statement said the testing could continue until the baby’s fifth year of life.
In view of that, the RDGI would undertake the second edition of the newborn screening awareness campaign this month to encourage policy makers, health workers and the public to support the call to expand and make compulsory the screening of babies within the healthcare system to reduce the country’s overall disease burden and increase life expectancy.
The RDGI, with support from Roche Pharmaceuticals, would also organise a webinar scheduled for September 24, 2021, as part of its recognising rare series on the theme: “Screening Babies: The Pathway to Reducing Infant Mortality and Disability.”
It is targeted at clinicians, caregivers, medical laboratory experts, researchers and policy makers to influence the newborn and baby screening policy with adequate and sustainable resourcing.
The statement said although the Newborn Screening Programme was originally introduced in Ghana in 1993 by the Sickle Cell Foundation due to the high prevalence of the disease, which benefitted about 17,000 babies, education and awareness creation had not been channeled to other genetic conditions that were equally life threatening.
In 2010, however, the national programme of newborn screening was introduced, through sponsorship by the Ministry of Health, to complement the sickle cell screening but failed to achieve its mandate due to funding.
The RDGI said Ghana’s revised National Health Policy, which aimed to promote, restore and maintain good health for all residents while achieving Universal Health Coverage (UHC), had admitted that health services were not appropriately designed to account for populations with unique needs such as the disabled, aged and persons with genetic disorders.
It said the Policy intended 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.