Former Deputy Minister for Health and Member of Parliament for Akyem Oda, Alexander Akwasi Acquah, has made a passionate appeal for urgent national action to improve healthcare access and support for persons living with sickle cell disease (SCD) in Ghana.
Delivering a statement on the floor of Parliament on Friday, June 19, to commemorate World Sickle Cell Day, the lawmaker highlighted the devastating impact of the disease on individuals, families, and the nation, while calling for stronger policies and expanded treatment access.
This year’s World Sickle Cell Day is being observed under the theme: “Closing the Survival Gap: Equity in Sickle Cell Disease.”
Addressing Parliament, Mr. Acquah described sickle cell disease as a “catastrophic genetic blood disorder” that continues to kill, maim, and impoverish affected individuals and families across the country.
According to him, many Ghanaians are familiar with the painful realities of the disease through personal experiences in homes, schools, communities, places of worship, and healthcare facilities.
“I rise to share familial stories we may have experienced throughout our lifetime at our homes, schools, villages, communities, places of worship, health facilities, and here in our offices and constituencies,” he stated.
He recounted the struggles of babies and children suffering from severe anemia, swollen hands and feet, jaundice, dark-colored urine, strokes, and recurring painful crises, noting that many victims die prematurely while others continue to face stigma and discrimination.
The MP revealed that approximately 8 million Ghanaians are carriers of the sickle cell gene, warning that “every fourth person” in Parliament could potentially be a carrier capable of passing the condition to unborn children.
He further disclosed that about two out of every 100 newborns in Ghana are born with sickle cell disease, emphasizing that the disease remains highly prevalent in malaria-endemic regions such as Ghana.
Mr. Acquah also referenced the various local names for the disease across communities, including “nyunyui” in Fante, “nududwi” in Ewe, and “ahututuo” in Twi, indicating how widespread and familiar the condition is within Ghanaian society.
Despite the prevalence of the disease, he lamented that global and local interventions have not matched the scale of devastation caused by sickle cell disease, especially in Sub-Saharan Africa, which accounts for nearly 80 percent of global cases.
Citing global statistics, the former Deputy Health Minister stated that in 2021 alone, there were over 515,000 new sickle cell births globally, with an estimated 7.74 million people living with the condition worldwide.
He stressed that African children under the age of five remain the most vulnerable, with between 50 and 90 percent of sickle cell-related deaths occurring within that age group, often without proper diagnosis.
Mr. Acquah underscored the importance of newborn screening and early diagnosis, describing them as lifesaving interventions that remain inaccessible to many families in Ghana and other developing countries.
He also highlighted the availability of effective treatments such as Hydroxyurea therapy, popularly known as HU, which has been approved internationally for the management of sickle cell disease.
According to him, studies across Sub-Saharan Africa have proven that Hydroxyurea significantly reduces bone pain, hospital admissions, blood transfusions, and other severe complications associated with the disease.
The MP noted that a partnership between government and Novartis in 2018 piloted the use of Hydroxyurea in 21 district, regional, and teaching hospitals under the “Ahodwo Program.”
He added that although Hydroxyurea was later included in the National Health Insurance Scheme (NHIS) in 2022, access remains limited to only about 20 credentialed hospitals in eight regions.
Mr. Acquah warned that the urban concentration of treatment centers places a heavy burden on rural patients and caregivers, leading to loss of income, poor school attendance among children, and increased healthcare costs from repeated hospitalizations.
Drawing comparisons with Uganda, which has decentralized the administration of Hydroxyurea, he called on the government to urgently adopt similar measures to improve access nationwide.
To address the growing burden of sickle cell disease, the lawmaker proposed several recommendations, including the declassification of Hydroxyurea as a specialist medicine, decentralization of prescriptions to district hospitals, improved drug procurement systems, simplified treatment guidelines, and the creation of specialist consultation networks.
He also appealed to the public to stop using derogatory language against persons living with sickle cell disease.
“They are warriors, not sicklers,” he stressed, urging the public to show compassion and empathy toward affected individuals and their families.
Mr. Acquah further called on healthcare professionals to treat sickle cell patients with urgency and care, particularly during the rainy season when painful crises tend to increase.
He urged hospital administrators to fully implement government policies that guarantee access to Hydroxyurea under the NHIS benefit package.
The Akyem Oda MP expressed optimism that Ghana possesses the tools, expertise, and systems needed to significantly improve the survival and quality of life of persons living with sickle cell disease.
“We have the tools, expertise, systems, and knowledge to achieve equity in sickle cell disease care across the country,” he stated.
By 1960news.com
