“Every Fourth Person Here May Be a Carrier” – Akim Oda Demands Decentralized Sickle Cell Care, End to NHIS Limits Ahead of World Day

Akim Oda MP Hon. Alexander Akwasi Acquah has called for urgent reforms to Ghana’s Sickle Cell Disease response, warning that stigma, late diagnosis, and restrictive NHIS policies are costing lives despite proven, cost-effective treatments being available.

Delivering a statement in Parliament ahead of World Sickle Cell Day on June 19, themed _“Closing the Survival Gap: Equity in Sickle Cell Disease,”_ Hon. Acquah said SCD is “a catastrophic genetic blood disorder that kills, maims and impoverishes affected individuals and families.”

*8 Million Carriers in Ghana*

“I rise to share familiar 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 within our constituencies,” he told the House.

He described the disease’s toll: “Accounts of babies, infants, and children succumbing to devastating illness that brings upon them very severe anemia, painfully swollen hands and feet, eyes that glow with a yellow tink, dark colored urine, and even stroke that maims and kills.”

“About eight million Ghanaians are carriers of an abnormal hemoglobin gene called the Sickle Cell Gene. Here on the floor of parliament every fourth person may be a carrier with the potential of passing the gene onto our unborn children.”

“In Ghana about two out of hundred newborns have Sickle Cell disease. The Sickle Cell disease gene is common in Ghana where the malaria parasite also thrives.”

Hon. Acquah noted the disease is deeply embedded in Ghanaian culture. “Across all Ghanaian dialects there's a local name for this devastating blood disorder that is notorious for causing excruciating physical, mental and even financial pain.”

He cited local names, with the Akans call it "Ahotutuo" He said we know this disease very well yet global and international efforts to manage it, let alone eliminate it, are not commensurate with the devastation it causes.

Stigma remains widespread. “Unfortunately too many people continue to be stigmatized and judged because of this disease, I'm sure we all remember statements like ‘hmm he won't live beyond eighteen years. Twenty-five if he's lucky.’”

*Africa Bears 80% of Global Burden*

“Sub-Saharan Africa accounts for nearly eighty percent of global cases. In twenty twenty-one there were five hundred and fifteen thousand new births and an estimated seven point seven four million people living with the Sickle Cell disease globally.”

Je said, the most vulnerable population is African children under five years. Fifty to ninety percent of Sickle Cell disease related deaths occur sometimes with children dying undiagnosed.

*“We Are Running Out of Time for SDGs”*

Hon. Acquah said SCD “remains a significant driver of health inequalities and an obstacle to achieving the SDGs.”

“We have better tools now to diagnose and detect early any acute and chronic debilitating physical and mental complications of SCD,” he said. “We have a better understanding of how to manage and now cure this chronic disease with safe blood transfusion and cost-effective disease-modifying treatments such as hydroxyurea.”

“However, we are running out of time and need to expedite efforts to achieve the SDGs by 2030.”

He added: “Sickle Cell Disease causes life-threatening complications affecting every organ in the body from the head to the feet. Typically, children and adults with sickle cell anemia experience excruciating bone pain, anemia, and infections.”

*Hydroxyurea: “Most Impactful Intervention”*

While cures like bone marrow and gene therapies exist, Hon. Acquah said they are “practically inaccessible in Ghana due to their cost and the logistics required to implement them.”

Instead, he pushed hydroxyurea as the game-changer. “Mr Speaker, the most impactful intervention at this time is the nationwide implementation of hydroxyurea therapy for nearly all patients with Sickle Cell Disease.”

“HU, as is popularly called, an old anti-cancer medicine has been approved by the United States Food and Drug Administration since 1998 for the treatment of Sickle Cell Disease in adults and subsequently in children aged nine months and older.”

“Several Sub-Saharan African studies have also shown that these interventions are feasible, safe, and cost-effective in reducing typical bone pain, recurrent hospitalizations, the need for blood transfusions, and acute chest episodes.”

He noted Ghana’s progress: “A public-private partnership between the Ghana Government and Novartis in 2018 successfully piloted HU therapy for Sickle Cell Disease across 21 district, regional and teaching hospitals under the Ahodwo program. Subsequently, HU was included in the National Health Insurance Scheme in 2022.”

But Hon. Acquah said current implementation is failing rural Ghanaians. “HU access under the NHIS is currently restricted to about twenty NHIS credentialed hospitals in eight regions,” including “only six of the twenty-one Ahodwo affiliated facilities with specialist prescribers.”

“The resulting travel burden forces a difficult trade-off leading to lost income for adult caregivers and diminished school attendance for children.”

Hospitals without HU access face “avoidable healthcare costs for recurrent hospitalizations, treatment of recurrent sickle cell disease crisis and blood transfusions — which HU effectively prevents.”

*Six-Point Plan for Universal Coverage*

Citing Uganda’s decentralized model, he tabled reforms to achieve “true universal coverage” before 2030:

1. *Declassify HU as a specialist medicine* and integrate it into the standard NHIS benefits list.

2. *Decentralize prescriptions* to non-specialist prescribers in tertiary, regional and district hospitals.

3. *Improve HU forecasting and procurement* by including the Global Platform for Access to Childhood Cancer Medicines.

4. *Simplify guidelines* into national one-page posters and reminders.

5. *Develop a network of specialists* for consultation and supportive supervision.

*“They Are Warriors, Not Sicklers”*

“Finally, Honourable Speaker, I appeal to the public to show deeper compassion and sympathy towards those living with sickle cell disease and their families. We must eliminate geography and stigmatization language from our vocabulary,” he said.

“These individuals possess unique identities, strength and talents. They are warriors, not sicklers.”

He urged health workers to act with urgency, especially during the rainy season when “emergency departments see a rise of painful sickle cell crisis.”

“To our dedicated healthcare providers, I urge you to treat our warriors with utmost urgency and empathy. Please ensure every patient is offered and assisted in accessing HU.”

Hospital administrators were charged to “strictly implement government policy recommendations ensuring that HU is fully accessible under the NHIS benefit list for all sickle cell warriors.”

*Newborn Screening Gap*

Hon. Acquah stressed that early detection saves lives but remains limited. “This catastrophic blood disorder can be efficiently managed through early detection through newborn screening that is properly known as NBS. NBS is a life-saving intervention that is not universally accessible in countries in the global south with the highest burden of the disease including Ghana.”

He referenced global momentum: “The recent announcement made during the 78th session of the United Nations General Assembly were reassuring, emphasizing the urgent need for sustainable collaborative actions to bridge the global SCD equity gaps.”

“The demands are sustainable, collaborative, local, and international partnerships through interdisciplinary, holistic, preventive, rehabilitative, and restorative and mental health measures across continents.”

“Eventually, health systems strengthening and sustainable funding are needed to mitigate the social, economic, and political determinants that threaten to widen the existing inequalities.”

*“We Have the Tools”*

“We can now improve the survival, quality of life and economic productivity of Ghanaians today while preparing for tomorrow’s Ghana,” Hon. Acquah concluded.

“We have tools, expertise, systems and knowledge to achieve equity in sickle cell disease care across the country.”