Sickle cell disease can be detected at birth and managed with cheap, proven care, yet most of the half a million babies born with it each year are in sub-Saharan Africa, where many children die before age five.
Written from the sources listed below, not independently peer-reviewed.
Out of every 100 babies born with sickle cell disease worldwide in 2021, about how many were born in sub-Saharan Africa?
about 515,000
Babies born with sickle cell disease
Modelled global estimate for 2021, 13.7% more than in 2000. About 405,000 of these babies, or 79%, were born in sub-Saharan Africa.
Data year 2021. Source: GBD 2021 Sickle Cell Disease Collaborators, The Lancet Haematology 10(8): e585–e599, 2023
about 376,000
Deaths linked to sickle cell disease
Modelled total for 2021, nearly 11 times the 34,400 deaths recorded with sickle cell disease as the single cause. About 81,100 of the deaths were children under five.
Data year 2021. Source: GBD 2021 Sickle Cell Disease Collaborators, The Lancet Haematology 10(8): e585–e599, 2023
50% to 90%
Children with the disease in sub-Saharan Africa who die before age five
Range of reported estimates cited by WHO's Regional Office for Africa, which notes that survival appears to be improving, especially in cities. In the United States over 90% of newborns with the disease survive to adulthood.
Data year 2024. Source: World Health Organization Regional Office for Africa, 2024
Unit: thousand births per year
Modelled Global Burden of Disease estimates published in The Lancet Haematology (2023); only the two years reported in the paper are shown. The rise mostly reflects population growth, as the share of babies affected stayed stable in nearly all countries. The global total rose from 453,000 to 515,000 over the same period.
There is no global numerical target for sickle cell disease itself, but it weighs on SDG target 3.2, ending preventable deaths of children under five by 2030. The authors of the 2023 Lancet Haematology analysis conclude that progress towards this target, and towards targets on maternal deaths and noncommunicable diseases, is uncertain without wider prevention and treatment of sickle cell disease. When the analysis was published in 2023, newborn screening was not universal in any African country, and only 5 of 23 high-burden African countries had allocated funding for it.
Sub-Saharan Africa's share of all babies born with sickle cell disease rose from 70% in 2000 to 79% in 2021, while India's share fell from 21% to 16%.
Source: GBD 2021 Sickle Cell Disease Collaborators, The Lancet Haematology 10(8): e585–e599, 2023Counting all deaths linked to the disease, sickle cell disease ranks 12th among causes of death in children under five worldwide, and WHO's regional office ranks it 11th in sub-Saharan Africa, ahead of measles and malnutrition.
Source: World Health Organization Regional Office for Africa, 2024In sub-Saharan Africa, total sickle cell deaths among children under five were estimated at 35.6 per 100,000 in 2021, almost six times the 6.0 per 100,000 recorded as cause-specific deaths.
Source: GBD 2021 Sickle Cell Disease Collaborators, The Lancet Haematology 10(8): e585–e599, 2023Curative stem-cell transplants were available in only six centres in the whole of Africa, and hydroxyurea was missing from national medicine lists in India and many countries of southeast Asia, according to the 2023 analysis.
Source: GBD 2021 Sickle Cell Disease Collaborators, The Lancet Haematology 10(8): e585–e599, 2023Instead of one “percent solved” score, DO GOOD rates three separate dimensions. A problem can have mature solutions that still reach too few people. These ratings are an editorial reading of the sources on this page, not a measured index.
Has the situation improved in the real world?
LowThe number of babies born with the disease in sub-Saharan Africa rose from about 318,000 in 2000 to 405,000 in 2021, and reported estimates still have half or more of these children dying before age five, mostly without a diagnosis.
How mature and validated are the available solutions?
HighNewborn screening, preventive penicillin and hydroxyurea are well tested; in the REACH study of 606 children in sub-Saharan Africa, hydroxyurea was followed by 70% fewer deaths than before treatment. Cures exist but remain costly and demanding.
How widely are effective solutions actually used?
LowNewborn screening was not universal in any African country in 2023, only 5 of 23 high-burden countries had funded it, and WHO's regional office describes hydroxyurea as grossly underused in sub-Saharan Africa because it is not available.
Most figures are modelled because few countries screen newborns or record sickle cell deaths. The estimate of 376,000 total deaths in 2021 has an uncertainty range of 303,000 to 467,000, and the authors stress large data gaps.
WHO's Regional Office for Africa issued its SICKLE package of interventions in 2024, and Ghana committed in 2019 to free hydroxyurea through its national health insurance. Yet births with the disease keep rising with population growth, and no country has fully met calls for a national sickle cell policy.
Sickle cell disease is an inherited blood disorder. A child who receives an altered haemoglobin gene from both parents makes red blood cells that can stiffen into a sickle shape, block small blood vessels and break down early. This causes long-term anaemia, sudden episodes of severe pain, damage to organs such as the brain, lungs and kidneys, and a high risk of serious infections. A modelled analysis from the Global Burden of Disease study estimates that about 515,000 babies were born with the disease in 2021 and that 7.74 million people were living with it, 41% more than in 2000. The rise in births comes mainly from population growth in the Caribbean and in western and central sub-Saharan Africa.
Where the disease is diagnosed early and managed, most children survive: in the United States over 90% of newborns with sickle cell disease now reach adulthood. In sub-Saharan Africa, by contrast, WHO's regional office cites reports that between 50% and 90% of children with the disease die before age five, in a region where few newborns are screened for it. Because deaths are usually recorded under the infection or complication that ended a life, official cause-of-death counts miss most of the toll: the same analysis puts total deaths linked to sickle cell disease in 2021 at about 376,000, nearly 11 times the 34,400 deaths assigned to it as a single cause.
Sickle cell disease is identified by a blood test and counted through screening programmes, hospital records and, mostly, modelled estimates. The main terms are:
Sickle cell trait and sickle cell disease
A person who inherits one altered gene carries the sickle cell trait and is usually healthy. A child who inherits it from both parents has sickle cell disease. The most common and severe form is often called sickle cell anaemia; the Global Burden of Disease study models three genotypes separately.
Births with sickle cell disease
The number of babies born with the disease each year, or the rate per 100,000 live births. The global rate was estimated at 382 per 100,000 live births in 2021, with about 2% of newborns affected in Nigeria and the Democratic Republic of the Congo.
Cause-specific versus total deaths
Death certificates normally name one cause, such as an infection, so most deaths in people with sickle cell disease are recorded under other headings. The 2023 Lancet Haematology analysis therefore also estimated total deaths linked to the disease, including the excess deaths among people living with it.
Newborn screening
A blood test shortly after birth can identify babies with the disease before symptoms appear, so that preventive care can start in the first months of life. Screening is the entry point to every other intervention on this page.
What works
Testing babies at birth finds those with the disease before the first, often fatal, infection or anaemia crisis, so that families can be counselled and preventive care started early. The 2023 Lancet Haematology analysis concludes that universal newborn screening combined with preventive treatment is feasible and effective even in low-resource settings.
Limits
Screening only helps if results reach families and children are enrolled and followed up in care. In 2023 it was not universal in any African country, and only 5 of 23 high-burden African countries had allocated funding for it.
What works
Daily oral penicillin protects young children from pneumococcal bloodstream infections. In a 1986 US trial of 215 children under three, there were 2 such infections in the penicillin group and 13 in the placebo group, an 84% reduction, and no deaths with penicillin against three without. WHO's regional office recommends penicillin up to age five.
Limits
It requires an early diagnosis and a daily dose for years, so it depends on screening, reliable supplies and family follow-up. The landmark trial was done in the United States; protection in Africa also depends on vaccines and malaria prevention.
What works
This daily oral medicine reduces the complications of the disease. In the REACH study of 606 children aged 1 to 10 in sub-Saharan Africa, treatment lowered pain episodes by 55%, infections by 38%, malaria by 51%, transfusions by 67% and deaths by 70% compared with the period before treatment. WHO's regional office advises offering it to all people with the disease from nine months of age.
Limits
Doses must be adjusted for health and body weight, so it needs regular clinic visits. WHO's regional office describes it as grossly underused in sub-Saharan Africa because it is often unavailable, and in 2023 it was missing from national medicine lists in India and much of southeast Asia.
What works
Regular follow-up with folic acid, preventive antibiotics and early treatment of complications keeps more children alive and out of hospital. WHO's Regional Office for Africa set this out in its 2024 SICKLE package of interventions, which gives countries a common framework for care.
Limits
Routine care needs trained staff, medicines and laboratory services at primary and district level. WHO's regional office notes that no country has yet fully complied with calls for a national sickle cell policy, so care is often limited to a few specialist centres.
What works
Stroke is one of the most serious complications in children with sickle cell disease. The 2023 Lancet Haematology analysis recommends transcranial Doppler ultrasound screening from age two to find children at high risk so that preventive treatment can start.
Limits
The scans need equipment and trained operators that most district hospitals lack, and children found to be at risk then need long-term treatment that health systems must be able to provide.
Promising, but not proven at scale. The stage shows how far each approach has come; it is not a recommendation.
In December 2023 the US Food and Drug Administration approved the first two gene therapies, Casgevy and Lyfgenia, for people aged 12 and older. In the Casgevy trial, 29 of 31 evaluated patients (93.5%) had no severe pain crises for at least 12 months in a row. Both require collecting the patient's stem cells, high-dose chemotherapy and a hospital transplant procedure, and Lyfgenia carries a warning about blood cancers.
Stem-cell transplants and gene therapy can cost from about US$100,000 to US$2 million per patient, and many families have sought transplants abroad. African clinicians and partners are building treatment centres of excellence, joint case review and patient involvement so that curative care can one day be offered on the continent. How it would be paid for remains unresolved.
Ghana committed in 2019 to provide hydroxyurea free of charge to all people with sickle cell disease through its National Health Insurance Scheme. Evidence on how far such schemes raise actual use and survival is still limited.
Implementation gap
Only 5 of 23 high-burden African countries had allocated funding for newborn screening in 2023, and no African country screened all newborns, so most children are diagnosed late or never.
Implementation gap
Hydroxyurea is cheap and proven, but WHO's regional office describes it as grossly underused in sub-Saharan Africa because it is unavailable, and recommends that governments negotiate together with manufacturers for lower prices.
Technology gap
Stem-cell transplants and gene therapies can cost about US$100,000 to US$2 million per patient, far beyond what health budgets in high-burden countries can pay, and many families have sought transplants outside Africa.
Knowledge gap
Official statistics recorded 34,400 sickle cell deaths in 2021, against an estimated 376,000 total deaths linked to the disease. Undercounting makes it easy for health budgets to overlook it.
Coordination gap
WHO's regional office reports that no country has fully complied with calls for a national sickle cell policy; where it is covered, it is folded into wider noncommunicable disease plans without dedicated targets.
Coordination gap
Specialist care and stroke screening are mostly available in large hospitals, while most children with the disease are born far from them. Linking screening, primary care and referral centres is still rare.
Unresolved questions, not vetted breakthroughs. Answering any of them would change what is possible.
Estimates of child deaths in sub-Saharan Africa range from half to nine in ten of those born with the disease. Which surveillance methods could give countries reliable figures without universal screening in place?
Pilot screening programmes have shown they can find babies with the disease. Which models of financing, laboratory networks and follow-up keep children enrolled in care once external funding ends?
Which simplified dosing, monitoring and supply approaches let district and primary health workers start and continue hydroxyurea safely for young children in places with few laboratories?
Gene therapies currently require high-dose chemotherapy and specialised hospitals. Could gentler preparation, in-body gene editing or regional manufacturing bring the cost and complexity down enough for use in Africa and India?
Say "a person living with sickle cell disease" rather than labels, and correct the common belief that pain crises are exaggerated. People with the disease often report having their pain doubted when they seek emergency care.
If sickle cell trait is common in your family or community, a simple blood test and genetic counselling can help you understand your own status and choices. This is a personal decision, and carriers are usually healthy.
Groups that run newborn screening, supply hydroxyurea or support families in Africa and India rely on donations. Look for organisations that publish how many children they reach and keep in care.
Few countries have a dedicated plan or budget. Telling elected representatives that you support funding for newborn screening and essential medicines in global health aid is one way to add pressure.
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GBD 2021 Sickle Cell Disease Collaborators, The Lancet Haematology 10(8): e585–e599 (15 June 2023), open access CC BY 4.0, published 2023
Peer-reviewed modelled estimates (repository copy of the open-access article). Source of the 515,000 births in 2021 (453,000 in 2000), 405,000 and 318,000 births in sub-Saharan Africa (79% and 70%), India's 21% and 16% shares, 7.74 million people living with the disease (+41.4%), 382 births per 100,000 live births, 376,000 total and 34,400 cause-specific deaths, 81,100 deaths under five and the 12th rank, under-five rates of 35.6 and 6.0 per 100,000 in sub-Saharan Africa, newborn screening not universal in any African country, 5 of 23 countries funding screening, six transplant centres in Africa, transcranial Doppler from age two, hydroxyurea missing from formularies in India and southeast Asia, Ghana's 2019 free hydroxyurea commitment, and the SDG conclusion.
World Health Organization Regional Office for Africa (June 2024), published 2024
WHO's regional guidance for Africa. Source of 50–90% of children in sub-Saharan Africa dying before age five, over 90% of US newborns surviving to adulthood, the 12th (global) and 11th (sub-Saharan Africa) rank among under-five causes of death, about 2% of newborns affected in Nigeria and the DR Congo, penicillin up to age five, hydroxyurea from nine months, hydroxyurea being grossly underused because unavailable, joint price negotiation, and no country fully complying with calls for a national policy.
National Heart, Lung, and Blood Institute, US National Institutes of Health (1 December 2018), published 2018
Summary by the funder of the REACH trial (published in the New England Journal of Medicine). Source of the 606 children aged 1–10 and the reductions in pain (55%), infections (38%), malaria (51%), transfusions (67%) and deaths (70%), and of dose adjustment by health and weight.
Gaston MH et al., New England Journal of Medicine 314(25): 1593–1599 (1986), record via Duke Scholars, published 1986
Landmark trial behind penicillin prophylaxis. Source of the 215 children under three, 2 vs 13 pneumococcal bloodstream infections, the 84% reduction, and no deaths with penicillin against three with placebo.
US Food and Drug Administration (8 December 2023), published 2023
Source of the approval of Casgevy and Lyfgenia for people aged 12 and older, 29 of 31 evaluated Casgevy patients (93.5%) free of severe pain crises for at least 12 months, stem cell collection and myeloablative conditioning, and Lyfgenia's boxed warning on blood cancers.
Patel S, Makani J et al., eBioMedicine 115: 105713 (2025), record via Aga Khan University eCommons, published 2025
Peer-reviewed perspective from African researchers. Source of the cost of curative interventions (about US$100,000 to US$2 million per patient), patients seeking transplants outside Africa, and the CHARTA approach of centres of excellence, multidisciplinary meetings and patient engagement.
DO GOOD International (2026). Care for Sickle Cell Disease. Global Challenges. Updated October 15, 2026. https://www.dogood.world/challenges/sickle-cell-disease
For figures, please cite the original sources listed above.