Accra, Nov. 30, GNA- Sickle Gene Action Foundation (SGAF), a Sickle Cell Disease (SCD) advocacy group, has been launched in Accra, with a call on society for a collective action in the fight against the disease in Ghana.
The group aims at advocating legislative to make SCD medications, such as Hydroxyurea and treatment guidelines widely accessible throughout the country such as anteretrovirals.
The organisation will also collaborate with the government and other stakeholders to profer solutions to the challenges hindering the treatment and management of SCD.
SCD is a genetic condition that is present at birth. It is inherited when a child receives two genes—one from each parent—that code for abnormal haemoglobin.
In an address, Ms Victoria Awo Twumasi, Executive Director, SGAF, said: “The organisation believes that early diagnoses, early access to affordable treatment and early public health awareness with quality sickle cell centres for prompt management of the condition is critical to saving lives.
Ms Awo Twumasi said measures, such as stakeholder engagements, and public health interventions, such as counselling, were needed in a proactive strategy to help find solutions to the challenges in the treatment and management of SCD.
She, therefore, called on all stakehokders to join in the fight against SCD by driving national awareness.
They should also strengthen the role of civil society in advocacy through a stronger voice both – nationally and internationally.
Dr Yvonne Brew, Paediatrician, Child Health Department, Greater Accra Regional Hospital (GARH), said: “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.”
She requested that government and stakeholders should make screening and hydroxyurea (medication for severe SCD) for new born babies accessible in all facilities to save more lives.
She also stated that families, friends and society should show love to persons living with SCD because it contributed to treatment.
Madam Mary Lamptey, National Nurse Coordinator for Newborn Screening, who also spoke about newborn screening for SCD, said the process was quite simple and encouraged parents to allow their children to be screened.
She spoke about how the initiative was started by the late Prof Ohene Frimpong in the Ashanti Region in 1992 but had to be halted due to lack of funding.
She used the opportunity to pay tribute to the late Prof. Ohene-Frempong who, introduced newborn screening for SCD to Ghana and Africa, and called on the government to make funds available for the initiative.
The US Center for Disease Control explains that Sickle cell disease is a group of inherited red blood cell disorders.
Red blood cells contain haemoglobin, a protein that carries oxygen. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body.
In someone who has SCD, the haemoglobin is abnormal, which causes the red blood cells to become hard and sticky and look like a C-shaped farm tool called a “sickle.” The sickle cells die early, which causes a constant shortage of red blood cells.
Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious complications (health problems) such as infection, acute chest syndrome and stroke.
There are different types of the disease, which is diagnosed by a laboratory test.
Though it is incurable, it can be medically managed successfully for patients to live their full healthy lives.
GNA