• Over the past three decades, each one of the following strategies has been implemented in Ghana.
• Some have been implemented more broadly and consistently than others.
• When we are able to effectively scale up the implementation of these proven strategies, we will be able to prolong lives and significantly reduce preventable pain and suffering for our nation’s Sickle Cell Warriors and their families.
1. Prevention and early diagnosis of SCD
2. Newborn screening (NBS) and early infant diagnosis (EID)
3. Premarital counseling
4. Maternal carrier testing
5. Prenatal diagnosis
6. Supportive management
7. Pain Management
8. Infection prevention
9. Hydroxyurea
10. Folic acid supplementation
11. Blood transfusion
12. Screening for stroke
13. Psychosocial care
14. Outpatient care
15. Health education on SCD
16. Curative management
• From 1992 to 2022, Prof. Kwaku Ohene-Frempong, MD, with the support of international partners and colleagues in Ghana, provided national and global leadership for SCD detection, treatment, and management. Sadly, Prof. passed away in 2022.
• Since 2023, the Ghana Foundation for Sickle Gene Action (GF-SGA) has worked to fill part of the void left by Prof. Ohene-Frempong, aiming to restore lost programming and build upon the groundwork he laid.
• In August 2023, one year after his passing, the SPARCo Standards of Care for SCD in Sub-Saharan Africa were released, providing a unifying call to action to implement these guidelines nationwide.
See: Our Groundwork
1. The Sickle Cell Foundation of Ghana (SCFG)
2. Newborn Screening (NBS) and Sickle Cell Clinics
3. Hydroxyurea (HU)
4. Global Partnerships and Collaborations
5. Centers of Excellence (COEs)
6. The Kumasi Center for Sickle Cell Disease and Blood
7. A Model for Compassion, Commitment, Collaboration, Cooperation, and Collegiality
8. The SPARCo Treatment Guidelines
We support these treatment guidelines, designed to meet our specific needs.
• The SPARCo Standards of Care for Sickle Cell Disease in Sub-Saharan Africa
- The Last Referral Hospital Standard Version, August 2023
- The Home Based Version, September 2023
• They are unique because they offer recommendations for different levels of care, unlike traditional guidelines focused on tertiary care only.
We thank each individual involved:
• Contributors, reviewers, administrative and technical staff members, and funders
• The SickleInAfrica Consortium, including members of SPARCO and SPAN
• The Sickle Africa Data Coordinating Center (SADaCC)
• Ghana’s Prof. Ohene-Frempong, who led the group’s work and developed the innovative multi-level approach
We appreciate their effort to empower healthcare professionals:
• Guidelines were developed using both African and non-African sources to ensure suitability for sub-Saharan conditions.
Intended audience:
• Those providing emergency or ongoing care for SCD patients at last referral hospitals in sub-Saharan Africa.
Recommendations include:
• Diagnosis
• Health Maintenance and Preventive Therapy
• Screening for Specific Complications
• Management of Acute Complications
• Management of Chronic Complications
• Special Protocols: Hydroxyurea use and blood transfusions
• Click here to download: SPARCo_SoC_SCD_GuidelinesR_Aug2023.pdf, SPARCo_SoC_Homebased_version.pdf
• We know what needs to be done and what our challenges are.
• We need adequate funding to overcome these documented challenges, given Ghana’s high incidence of SCD.
• The government must treat SCD as a public health challenge, not a private matter.
• Past groundwork was supported by government funding, external grants, and partnerships, but sustainability has been lacking.
• We urgently need effective funding strategies and reliable governmental support.
• Much is required to manage and treat SCD, including patient education, medical resources, trained clinicians, and insurance.
• Immediate priorities include restoring newborn screening, affordable hydroxyurea access, and stroke prevention programs.
• We will work with the government to restore 22 discontinued newborn screening sites, fulfill NHIS promises for hydroxyurea, and scale up transcranial doppler screening access.