End The Neglect of Sickle Cell Disease in Sub Saharan Africa and Save 125,000 children under the age of 5

  • by: Gail Sealy
  • target: Public and private aid agencies, Major philanthropies (Bill And Melinda Gates Foundation, Clinton Foundation, President of the United States, Carter Center, DFID, Pharmaceuticals including Bristol Meyers Squibb; UNICEF, USAID, African Heads of State

Goal 3 of the World’s Sustainable Development Goals acknowledges that six million children still die before their fifth birthday each year, and four out of every five deaths of children under age five occur in Sub Saharan Africa and South Asia. Sickle Cell disease is one of the neglected contributors to this toll, with devastating impact on the livelihood of affected families and communities. It is an inherited disorder of the red blood cells, and one of the most common genetic diseases worldwide. It occurs widely in sub-Saharan Africa, parts of Middle East and some areas of the Indian subcontinent. Unfortunately, it is widely neglected in Sub-Saharan Africa, where an estimated 50-90% of the 150,000 children born annually with the condition, die undiagnosed before their 5th birthday. SCD leads to anemia and acute and chronic damage to body tissues and organs and life -threatening complications such as acute/ severe anemia, unpredictable severe pain attacks – often referred to as “pain crises” - acute chest syndrome, stroke, renal failure, and chronic organ damage. The most important public health intervention that has improved the survival of young children with SCD is early diagnosis by newborn screening followed by anti-pneumococcal prophylaxis, using oral penicillin and pneumococcal vaccination. With implementation of these low-cost interventions in high and middle-income countries (such as UK, USA, Brazil and Jamaica) with public health systems that support people with SCD, survival estimates of more than 90% by age 20 years have been achieved. However, in sub-Saharan Africa, home of more than 75% of children born with sickle cell disease in the world, it is a harbinger of early death and suffering. In most countries there are no well- structured care services for early SCD diagnosis and follow up in the highest affected areas. In addition to resource constraints, there is also a dearth of reliable data and ignorance of the new, cost-effective, and lifesaving therapeutic advances which can also perhaps account for the lack of attention to the disease. This includes new point of care diagnosis systems which can reduce diagnostic costs from $35 to $6 per diagnosis! In addition to reducing mortality, the increasing use of hydroxyurea (hydroxycarbamide) therapy is helping to reduce morbidity of SCD. Yet these life-saving therapies are mostly unavailable where the need is greatest. Please Share and Sign our Petition to End the Neglect and Save Young Lives. I know about this because I was able to give my son, Shikuri, the gift of diagnosis and medication since his adoption from Kenya at the age of 2. Now he is a robust 15 year old….Please help us end the needless suffering and deaths of young children in Africa with sickle cell disease

Consider a tax deductible, charitable donation to the Shikuri Project's program to provide diagnosis and medications to children with sickle cell disease in Homa Bay, a community in Kenya. See our work at www.linkforlife.org 

Dear Leaders


As another World Sickle Cell Awareness Day has passed, we the undersigned would like to direct the attention of leaders in global health care, serving child health in Sub Saharan Africa to the horrendous pain and death toll suffered by children from the complications of sickle cell disease, which is a treatable but neglected condition. Goal 3 of the World’s Sustainable Development Goals acknowledges that six million children still die before their fifth birthday each year, and four out of every five deaths of children under age five occur in Sub Saharan Africa and South Asia. Sickle Cell disease is one of the neglected contributors to this toll, with devastating impact on the livelihood of affected families and communities. It is an inherited disorder of the red blood cells, and one of the most common genetic diseases worldwide. While it occurs widely in sub-Saharan Africa, parts of Middle East and some areas of the Indian subcontinent, unfortunately, it is widely neglected in Sub-Saharan Africa, where an estimated 50-90% of the 150,000 children born annually with the condition, die undiagnosed before their 5th birthday. Sickle Cell disease also has devastating impact on the livelihood of affected families and communities. We request that you direct resources to providing the low cost interventions recommended by the World Health Organization: which can save 80% of the 125,000 infants born yearly with sickle cell disease. The interventions are simple; and African health systems have the capacity to deliver them with simple training and guidelines. These include newborn diagnosis; basic medications, i.e., penicillin, folic acid, hydroxyurea, pain medicines, IV antibiotics and the capabilities for family training and genetic counselling. USA, UK, and Jamaica - which committed to infant diagnosis - now have adult survival rates between 99% and 84%. Africa can aspire to the same; but they need your attention. Given widespread ignorance about the cause of the condition by those with the sickle cell trait, please also consider how best to educate communities where the condition is endemic. The high burden of SCD has been acknowledged by the World Health Organization and the United Nations. In 2010, the WHO Regional Office for Africa declared SCD as a Public Health Priority and promulgated a strategy document that spelled out guidelines for actionable steps to combat SCD in sub-Saharan Africa, but these have not as yet been translated to government action. There is negligible investment in targeted public health programs for SCD by public and private philanthropic and development actors. New technologies hold the promise of cost and time reductions in diagnosis and medical care. Broad public-private partnerships involving international donors and development partners, governments, non-governmental organizations, research funding bodies and industry are needed to provide resources for programs which deliver interventions that are integrated into the health systems of these countries. We ask that you help bring these children without a voice out of the shadows. There is no reason in 2016 why sickle cell should still be a deadly scourge when it is treatable. Give Life a Chance. Thank you. Sponsor: The Shikuri Project Charitable Trust (www.shikuriproject.org) a 501c3, established by the adoptive mother of a Kenyan born child with sickle cell disease, is working to convene partners to raise awareness and direct policies and resources toward diagnosis, treatment, and reduction in the incidence of sickle cell disease in children under 5 in underserved communities in sub Saharan Africa.

Sign Petition
Sign Petition
You have JavaScript disabled. Without it, our site might not function properly.

privacy policy

By signing, you accept Care2's terms of service.
You can manage your email subscriptions at any time.

Having problems signing this? Let us know.