Patients with sickle cell disease (SCD) may experience reduced life expectancy and lifetime income compared with similar individuals without SCD, according to research published in JAMA Network Open.

Researchers simulated 2 cohorts of age-, sex-, and race-matched individuals with or without SCD. Both cohorts included 87,328 individuals. Using data from the Centers for Disease Control and Prevention, National Newborn Screening Information System, and published literature, the researchers calculated birth and mortality rates as well as lifetime income for both cohorts. The researchers also calculated quality-adjusted life expectancy based on the patient reports of the effect of pain.

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Patients with SCD were projected to have a life expectancy and quality-adjusted life expectancy of 54 and 33 years, respectively, compared with 76 and 67 years, respectively, for the cohort without SCD and 79 and 69 years, respectively, for the US general population.

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Lifetime income was also projected to be lower for patients with SCD, with patients with SCD earning $1,227,000 while similar individuals without SCD earned $1,922,000. The US general population had a lifetime income of approximately $2,500,000. In other words, patients with SCD were estimated to earn approximately $695,000 less over their lifetime due to premature mortality compared with age-, sex-, and race-matched individuals without SCD.

Patients with SCD experienced an average of 2 to 3 hospitalizations each year, with each admission lasting an average of 5 to 6 days.

The researchers noted that their estimates of quality-adjusted life expectancy and lost lifetime income were likely conservative as they did not account for diminished quality of life due to symptoms other than pain or loss of income due to unemployment, disability, medical costs, and the like.

Further limitations of this simulation model include a “lack of contemporaneous countrywide mortality data” and the use of current death rates to estimate future mortality though “potential clinical advances…may alter those death rates.”

Disclosures: Some authors have declared affiliations with the pharmaceutical industry. Please refer to the original study for a full list of disclosures.


1.     Lubeck D, Agodoa I, Bhakta N, et al. Estimated life expectancy and income of patients with sickle cell disease compared with those without sickle cell disease [published online November 15, 2019]. JAMA Netw Open. doi:10.1001/jamanetworkopen.2019.15274