Rare Disease Ghana Initiative is calling for for institutionalization of New Born Screening in Ghana.
As part of their agenda to promote, create awareness and get policy makers to expand the newborn screening portfolio in the country, they have announced plans to initiate New Born Screening Campaign as a mean of engaging the public and key policy makers/stakeholders.
MEANING OF NEWBORN SCREENING
Newborn screening is a public health service program done to check for rare genetic, hormone-related, endocrine and metabolic conditions that can cause serious health problems for a child.
As the name implies, newborn screenings are usually done for babies within 48-72 hours after birth in developed countries.
Statistically, 12,500 babies with serious but treatable conditions grow up healthy due to new born screening.
A BRIEF RECORD ON US’S NEWBORN SCREENING
In the US alone, 4 million babies are screened annually. Newborn screening enables clinicians identify rare disorders that a child might be born with since most rare diseases are genetic in nature.
A BRIEF RECORD ON AUSTRALIA’S NEWBORN SCREENING
In Australia, newborn screenings cover over 25 conditions as well as hearing loss and critical congenital heart defects (CCHDs) and is free with results available within two weeks after samples have been taken. To pick a sample, a baby’s heel is pricked and blood sample taken to run the test.
The baby must however, be fed for over 24 hours before newborn screening can be done. Newborn screenings are also known as babies’ first test. There are over 670 newborn screening centers across the US and in 85 countries worldwide.
SCOPE OF GHANA’S NEWBORN SCREENING
In Ghana however, newborn screening education and efforts are much more focused on sickle cell disease neglecting other genetic conditions that are equally life threatening and disabling. So far, about 17,000 babies have benefited from the sickle cell screening program.
Although Ghana’s new health policy aims to achieve universal health coverage, not much effort has been directed towards newborn screening as it can go a long way in achieving this aim.
The Rare Diseases Ghana Initiative in view of this is making effort in addressing this issue as it undertakes the newborn screening awareness campaign in September.
The campaign aims to create awareness and get policy makers to expand the newborn screening portfolio to include other diseases as early screening and detection goes a long way in reducing the disease burden since rare diseases when detected from birth can be managed adequately using orphan drugs while improving the total quality of life of citizenry and increasing life expectancy.
MODE OF SCREENING AWARENESS AND DATE
The Rare Disease Ghana Initiative as part of observing the newborn screening awareness month will be organizing an online campaign throughout the month of September and a webinar scheduled for 24th September, 2021 as part of its recognizing rare series on the theme “Screening Babies: The pathway to Reducing Infant Mortality and Disability”.
The webinar targets clinicians, laboratories, researchers and policy makers to influence the newborn and baby screening policy to fruition with adequate resourcing.