Sickle Cell Disease Cuts 20 Years From Life Expectancy, Study Finds

People with the inherited disease can expect to live 52.6 years following birth, the report shows.

People with sickle cell disease (SCD) have a life expectancy more than 2 decades shorter than the general population, according to a new report.

The study, published in Blood Advances,1 also evaluated differences in life expectancy among people in the United States who are insured by Medicaid, Medicare, or both.

About 100,000 people in the United States are believed to suffer from SCD, a diagnosis that brings with it chronic complications such as acute pain, stroke, symptomatic anemia, and the risk of infections and organ damage, noted the study authors. The disease disproportionately affects people of African descent, they added.

Improved therapies and screening programs have led to higher survival rates among children with SCD. Yet, the complications of the condition still significantly increase the risk of premature mortality, wrote the investigators. However, just how much SCD affects life expectancy is not fully understood because there has not yet been a population-level analysis.

The authors wanted to see what real-world data indicate about life expectancy and whether a patient’s type of insurance had an impact on outcomes. They hypothesized that survival might vary among insurance types.

“For example, some Medicare beneficiaries are also enrolled in Medicaid,” they wrote. “Those dual-eligibles tend to experience a higher burden of chronic diseases and poorer survival outcomes than single-eligibles.”

To test their hypothesis, the investigators used a nationwide database of Medicare and Medicaid claims in all 50 states between 2008 and 2016. They identified 94,616 people who had SCD but had not undergone any kind of transplant. The cohort had an average age of 26.6 years, and 74% were Black. Forty-eight percent of patients had Medicaid, 43% were eligible for Medicare and Medicaid. Four percent of patients had Medicare due to a disability or for end-stage renal disease, and 5% were part of the Medicare Old-Age and Survivors Insurance (OASI) Trust Fund.

Overall, the authors found people born with SCD could expect to live 52.6 years. As with the general population, females had a longer life expectancy than males, at 55.0 vs 49.3 years). For comparison, the CDC estimates that among the overall US population, the life expectancy at birth is 79.3 years for women and 73.5 years for men.

“Our study highlights that there is a persistent life expectancy gap among the individuals with sickle cell disease, even though they are covered by public insurance," said lead author Boshen Jiao, PhD, MPH, a researcher in the Comparative Health Outcomes, Policy & Economics (CHOICE) Institute, Department of Pharmacy, University of Washington, in a statement.2 "The clinical community has known that SCD can be an extremely burdensome condition; however, this study puts numbers behind that burden using real patient data."

In terms of insurance, patients who were covered by Medicare due to disabilities or end-stage renal disease and those on both Medicare and Medicaid had shorter life expectancies than patients on Medicaid only. Among subjects ages 65 or older, being dually insured with Medicare and Medicaid was associated with a shorter life expectancy compared with being enrolled only in Medicare’s OASI program.

Jiao said one reason these data are important is because gene therapies are being developed for similar diseases, and those therapies tend to come with high costs. If a gene therapy were to be approved for SCD, these life expectancy data could help clarify the impact of such treatments.

“There is substantial optimism that these therapies are valuable to patients,” Jiao said. “But because of the high price tag, it becomes even more important that we understand that we are getting enough benefit from these therapies, lifelong, long term, that will justify these high prices.”


1. Jiao B, Johnson KM, Ramsey SD, Bender MA, Devine B, Basu A. Long-term survival with sickle cell disease: a nationwide cohort study of Medicare and Medicaid beneficiaries. Blood Adv. Published online March 16, 2023. doi:10.1182/bloodadvances.2022009202

2. Quantifying the life expectancy gap for people living with sickle cell disease. News release. American Society of Hematology. March 16, 2023.Accessed March 19, 2023.

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