Sickle cell disease (SCD) is the most common, clinically significant, genetic disease in Africa, especially sub-Saharan Africa (SSA). Globally, an estimated 465,000 babies are born annually with significant disorders of hemoglobin (Hb); of these, 401,000 (86 percent) have various SCD. An estimated 80 percent of all newborn babies with SCD are born in SSA. While there is no accurate account of mortality and clinical course of these children in SSA, 50-90 percent of them are estimated to die by 5 years of age, most of them never properly diagnosed with SCD or treated. In 2006, the World Health Organization reported that sickle-cell anemia (SCD-SS), “contributes the equivalent of 5 percent of under 5 deaths on the African continent, more than 9 percent of such deaths in West Africa, and up to 16 percent of under-5 deaths in individual West African countries.”
In most countries of SSA, there are no organized public health programs for SCD, no data on the public health impact of SCD, and no data on clinical management and outcomes of SCD. However, the health outcomes of SCD continue to show improvement in countries with organized programs such as the United States of America, Brazil, Europe, several countries in the Middle East, and a few in the Caribbean. The most effective life-saving intervention in the management of SCD has been early diagnosis (most effectively through newborn screening) followed by penicillin prophylaxis against pneumococcal infection. In addition, hydroxyurea, an old and relatively inexpensive drug, has proven to increase levels of fetal Hb F in SCD, and consequently reduce sickling, decrease anemia, reduce the frequency and severity of common complications of SCD, and reduce mortality. A few thousand people with SCD have been cured of the disease through hematopoietic stem cell transplantation. Gene therapy as a cure for SCD is currently under clinical trial.
The Comprehensive Sickle Cell Center at The Children’s Hospital of Philadelphia, the Sickle Cell Foundation of Ghana, and other international partners have been organizing a series of international symposia aimed at improving knowledge and practices in the management of SCD in Africa.
The target audience for this symposium is healthcare workers, public health officials, laboratory technologists, community-based organizations, and support groups for patients and families.
- Explore strategies for development and sustainment of newborn screening programs for SCD in Africa.
- Explore strategies for simplified, rapid and accurate diagnostic tests for SCD in Africa.
- Explore strategies for development of hydroxyurea treatment programs for SCD in Africa.
- Explore strategies for improvements in blood supply, transfusion safety, and practices in the management of SCD in Africa.
- Discuss genetic counseling strategies and their social impact in Africa.
- Discuss guidelines for management of SCD in Africa.
- Summarize proceedings of the symposium for dissemination to public health services in Africa.
The Symposium will start on Monday, July 11, 2016, with meetings of special interest groups such as the Sickle Cell Disease Network of West Africa, Sickle Cell Disease World Federation, and Global Sickle Cell Disease Network. Day two will include an all-day diagnostic laboratory demonstration session. Seven thematic areas will cover:
- Newborn Screening and Follow-up
- Laboratory Diagnosis
- New Therapies
- Blood Transfusion and Blood Safety
- Psychosocial Interventions
- Public Health and Health Education and Guidelines for Clinical Management of SCD in Africa – will be highlighted in the Simultaneous Sessions from Day II to Day IV
Monday, July 11
- Morning and Afternoon: Special Interest Group Meetings 1 through 4
- Evening: Opening Ceremony
Tuesday, July 12
- Morning: Plenary Session I & II, Simultaneous Session 1
- Afternoon: Simultaneous Session 2
- Evening: Case Presentations 1
Wednesday, July 13
- Morning: Plenary Session III & IV, Simultaneous Session 3
- Afternoon: Simultaneous Session 4
- Evening: Case Presentations 2, Banquet
Thursday, July 14
Morning: Plenary Session V, Closing Ceremony
Friday, July 15
All day: Patient-Family Education Day (Kumasi)