A new sickle cell disease (SCD) advocacy group, Sickle Gene Action Foundation (SGAF), has been launched in Accra with the aim to identify the challenges of persons living with SCD in the country in order to provide support.
Though it is a non communicable disease, due to its impact and mode of transfer, the foundation is advocating legislative change to make all issues pertaining to SCD receive the same attention as critical and communicable diseases.
It is also advocating SCD medications like hydroxyurea treatment guidelines to be made widely accessible just as medications for HIV/AIDS which are easily accessible throughout the country.
Speaking at the launch of the foundation in Accra, the founder and Executive Director of SGAF, Victoria Awo Twumasi, said the objective of the organisation was to collaborate with the Government of Ghana and other stakeholders to proffer solutions to the challenges hindering the treatment and management of SCD in the country.
The ceremony was attended by government officials, traditional authorities, religious leaders, healthcare professionals, caregivers and sickle cell warriors.
She stated that SGAF took its inspiration from a world renowned hematologist and former President of the Sickle Cell Foundation of Ghana, the late Professor Kwaku Ohene Frempong, who dedicated his time and career to support persons living with SCD.
“The sickle cell community is grateful for all his hard work that has saved many lives”, she added.
She said the SCAF would continue with the good works of the late Prof as “it still believes that early diagnosis, early access to affordable treatment and early public health awareness with quality sickle cell centers for prompt management of the condition is critical to saving lives”.
Ms Twumasi said measures such as stakeholder engagements and public health interventions such as counselling were some measures needed to help find solutions to the challenges in the treatment and management of SCD.
She, therefore, made a call to action for all to join in the fight against SCD by driving national awareness and strengthening the role of civil society in advocacy through a stronger voice, both nationally and internationally.
A Paediatrician from the Child Health Department of the Greater Accra Regional Hospital (GARH), Dr Yvonne Brew, noted that “there is the need for newborns to be screened for SCD so that treatment can start early to save their lives.
“Early detection saves lives.
We must know that if a child survives, society also survives,” Dr Brew stated.
She emphasised the need for all stakeholders to make newborn screening for SCD and hydroxyurea accessible in all facilities to save more lives.
A presentation by the National Nurse Coordinator for Newborn Screening, Mary Lamptey, educated guests about the importance of newborn screening for SCD and the process involved, saying it started in 1992, spearheaded by the late Prof. Ohene-Frempong who introduced the interventions to Ghana and Africa.
She said although newborn screening for SCD after its introduction had been extended to few health facilities, they could not scale up to cover the entire country due to lack of funding and also added her voice to the call to make it a national intervention to help save babies with the right medical attention once their status was confirmed.