By David A. Swanson (email@example.com), Dickson Emeritus Professor, Department of Sociology, University of California Riverside and Regional Affiliate, Center for Studies in Demography and Ecology, University of Washington
Sickle cell disease is a genetically-inherited, painful, crippling, life-threatening condition affecting at many as 100,000 people in the United States. Despite the prevalence of sickle cell disease, little is known about the life expectancy of people who suffer from it.
Using mortality data generated in a population-based surveillance study of patients with sickle cell disease over the period 2004-2008, I created a life table for the study population circa 2006 and applied it to the US population. I find that a newborn with sickle cell disease circa 2006 had a life expectancy of approximately 48 years. For the total U.S. population, newborns in 2006 were expected to live to approximately 78 years, 30 years longer than a newborn with sickle cell disease. The 2006 U.S. Black population, in which nearly all those with sickle cell disease are found, was estimated to have a life expectancy at birth of 73.2 years, about 25 years longer than a newborn with sickle cell disease.
The probability of a newborn with sickle cell disease reaching age 55 in 2006 was approximately 0.35 while the probability of a newborn in the US population as a whole living to age 55 was approximately 0.92, about 2.6 times higher. The probability of a newborn in the 2006 U.S. Black population surviving to age 55 was approximately 0.86, about 2.45 times higher than a newborn with sickle cell disease.
A 2019 study constructed life expectancy estimates for the U.S. population with sickle cell disease via cohort simulation modeling, estimating that life expectancy at birth for the U.S. population with sickle cell disease was 54 years as of mid-2017. In comparing my results circa 2006 and those for mid-2017, the life expectancy at birth of the U.S. sickle cell disease population lengthened by approximately six years, from 48 to 54, an increase of 12.5 percent. Between 2006 and 2017, life expectancy at birth of the U.S. population as a whole lengthened from 77.7 years to 78.6 years, an increase of 1.16 percent. This comparison suggests that, while there was a slow increase in life expectancy at birth for the total U.S. population between 2006 and 2017, the increase in life expectancy at birth for the SCD population increased considerably over approximately the same period.
While much, undoubtedly, remains to be done, those who have been working on reducing the mortality associated with sickle cell disease should take heart. Their efforts are paying a substantial dividend in terms of increasing years lived – six years at birth in 11.5 years. Should these efforts continue to be funded, more improvements can be expected. It is encouraging that one such effort, the Sickle Cell Data Collection Program received $1.2 million in funding in 2019. Hopefully, additional funding will continue under the Biden Administration and beyond.