A non for profit organization Rare Disease Ghana Initiative is campaigning for a legislative framework that would promote newborn screening.
The organization says there are several benefits of newborn screening and early intervention to reduce infant mortality rate.
Speaking on Frontline on Rainbow Radio 87.5Fm, the Executive Director of the organization, Mr. Samuel Adjei Wiafe, stated that newborn screening (NBS) allows early identification of infants with diseases so that simple, cost-effective interventions can be implemented to manage the diseases.
He told host Kwabena Agyapong that these interventions dramatically reduce infant morbidity and mortality.
He said Ghanaians must also understand the effects of SCD and SCT, know the benefits of early intervention and recognize the value of a national NBS program.
He insisted that we need a law that would serve as an intervention in detecting rare diseases in children and provide interventions for them.
”The newborn screening is a campaign we must support. It is not a new agenda. The Sickle Cell Foundation has taken the lead, and we need a law to strengthen the campaign and make screening mandatory. We need this as a law,” he explained.
”There are many more diseases that we can screen for, but if we do not factor them in our laws, it would be difficult for our doctors to do it. We need to have it as a law and determine how other issues can be addressed especially financing, and public health interventions. We have to talk about it and not pretend that they do not exist,” he noted.
He said healthcare professionals have a key role to play in the screening of newborns.
He added that building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life.
He said such diseases are not from curses, and families must understand this and take steps in having an early diagnosis or early newborn screenings.
By: Rashid Obodai Provencal/Rainbowradioonline.com/Ghana
