If you or a family member lives with sickle cell disease, there’s much to consider about the near and distant future. Thinking about your or your loved one’s life expectancy can be daunting, and you might push it to the back of your mind while focusing on more immediate needs like healthcare, mental health support, and quality of life.

Life expectancy is a population estimate, so it can’t predict exactly how long one person will live. Still, survival for children with sickle cell disease has improved over the past few decades as screening and treatment have advanced. In high-income countries, more than 95 percent of children with sickle cell disease survive into adulthood.

What Is Life Expectancy With Sickle Cell Disease?

A 2023 study using Medicare and Medicaid claims from 2008 to 2016 estimated life expectancy at birth to be 52.6 years among beneficiaries with sickle cell disease. Because the study focused on this specific group, the estimate may not represent everyone with sickle cell disease in the United States. For comparison, life expectancy at birth for the overall U.S. population was 79 years in 2024, according to the Centers for Disease Control and Prevention (CDC).

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The CDC reports that estimated life expectancy for people with sickle cell disease in the United States remains more than 20 years shorter than average. Still, survival with sickle cell disease has improved significantly over the past few decades. In the early 1990s, median life expectancy was estimated at 42 years for males and 48 years for females, according to the journal Blood.

Sickle cell care continues to advance, but researchers are still studying how newer therapies affect overall mortality. Working closely with a trusted care team, including a hematologist (blood disorder specialist), can help coordinate treatment and testing.

How Life Expectancy With Sickle Cell Disease Has Improved in Recent Years

Many advances in sickle cell disease care have helped improve childhood survival into adulthood.

Newborn Screening

Newborn screening is one of the advances linked to improved childhood survival. It uses a small blood sample from a baby’s heel to look for certain forms of hemoglobin that may signal sickle cell disease.

If the screening result is out of range, doctors typically follow up with more blood tests and genetic testing. Follow-up matters because diagnosing sickle cell disease as early as possible can allow treatment to start before serious or life-threatening complications develop.

Preventive Antibiotics

One benefit of newborn screening is that it allows children with sickle cell disease to start preventive antibiotics early when appropriate. For children under 5, the CDC recommends daily penicillin or another antibiotic prescribed by a doctor to lower the risk of serious infection. Preventive antibiotics can reduce the risk of life-threatening infections such as pneumonia.

A child’s doctor may prescribe penicillin twice daily until about age 5. These antibiotics help prevent severe infections such as invasive pneumococcal disease (IPD). Children with sickle cell disease have about 100 times the risk of IPD compared with children with normal hemoglobin.

Children older than 5 may continue preventive penicillin if they have had their spleen removed, have had a previous invasive pneumococcal infection, or have not completed pneumococcal vaccination, according to current guidance.

Preventive Vaccines

Vaccines can also help prevent life-threatening infections in children with sickle cell disease. Because of sickle cell-related damage to the spleen, babies and children with sickle cell disease can have more trouble fighting bacterial infections.

The pneumococcal vaccine, which lowers the risk of pneumonia, meningitis, and other severe infections, is an important part of prevention. A pneumococcal conjugate vaccine for young children became available in 2000. After it was introduced, pneumococcal infection rates in children under 3 with sickle cell disease fell by more than 90 percent.

Children with sickle cell disease should receive all routine vaccinations. They may also need additional doses or modified vaccination schedules for pneumococcus, meningococcus, and Haemophilus influenzae type B.

For children who are prescribed preventive antibiotics, vaccines aren’t a replacement for those medicines. Both should be used as recommended by the child’s care team.

Hydroxyurea

Hydroxyurea is an oral medicine used to treat sickle cell disease in both children and adults. Some hydroxyurea products approved by the U.S. Food and Drug Administration (FDA) can be used in children as young as 6 months.

Hydroxyurea is a disease-modifying therapy that helps the body produce more fetal hemoglobin, a form of hemoglobin that does not sickle. Higher fetal hemoglobin levels help red blood cells stay round and flexible, making them less likely to block blood flow.

Hydroxyurea can lower the risk of serious sickle cell complications such as pain crises and acute chest syndrome. Its use in the United States has expanded substantially, especially over the past decade.

Hydroxyurea can also reduce emergency room visits, hospitalizations, and the need for blood transfusions related to sickle cell disease. Hydroxyurea and other disease-modifying therapies have become more widely available over the past 30 years and can help protect organ function.

Gene Therapies

Gene therapies are a newer category of sickle cell disease treatment, and there are two approved options. Like bone marrow transplants, gene therapies require conditioning chemotherapy before treatment. These therapies are not right for everyone.

The FDA has approved exagamglogene autotemcel (Casgevy) for people ages 2 and older with sickle cell disease and recurrent vaso-occlusive crises. Lovotibeglogene autotemcel (Lyfgenia) is approved for people ages 12 and older with sickle cell disease and a history of vaso-occlusive events. Both treatments use a person’s own blood-forming stem cells, which are changed in a laboratory and then returned to the body as a one-time infusion.

These treatments can greatly reduce or prevent serious vaso-occlusive complications in some people and may provide long-lasting control of the disease. Because these therapies are relatively new, their long-term safety and effectiveness are still being studied by the FDA.