The Impact of Sickle Cell Disease on Lifetime Earnings

There are substantial reductions in income over a lifetime for patients with sickle cell disease owing to early mortality, according to a new study that seeks to provide a better understanding of the condition from both the patient point of view as well as a societal point of view.

The authors, publishing Friday in JAMA Network Open, used a contemporary simulated population of people born with sickle cell disease using mortality data from California and Georgia, because there is no national registry that tracks the natural history of the disease.

Despite a reduction in the mortality rate of infants and children with sickle cell disease due to various interventions that allow most patients to survive to adulthood, adults have had a more difficult time due to limited access to care and the lack of treatment options; this leaves much to be desired in terms of major improvements in death rates and quality of life.

For instance, the multiple complications that lead to an increased use of healthcare resources as well as damage to both physical and cognitive capacity include vascular damage causing acute and chronic injury to the brain, kidney, the cardiopulmonary system, or other organs. Patients also suffer from pain, fatigue, and depression; the authors also noted that hospitalized patients aged 15 to 64 years spend an average of 5 to 7 days in the hospital.

Taken together, these factors have added up to serious decreases in quality of life and reductions to school and work productivity. Most of the 100,000 patients in the United States with sickle cell disease are African American or Hispanic American.

To understand the impact of the disease, researchers estimated life expectancy, quality-adjusted life expectancy, and income differences between a cohort of patients with sickle cell disease against a cohort without sickle cell disease, matched by age, sex and race/ethnicity.

The estimated prevalent population was 87,328 (95% uncertainty interval, 79,344-101,398); 998 were male and 952 were female. Compared with the similarly matched individual without the disease, the patient with sickle cell disease would lose approximately $700,000 in income over the course of their life.

Life expectancies for both men and women with sickle cell disease were 54 years; that compares with 79 years and 73 years respectively, for women and men in the matched cohort. In addition, the quality-adjusted life expectancy was also the same for men and women in the sickle cell disease group—33 years.

Projected lifetime income was $1.2 million for an individual with the disease and $1.9 million for one without. Put another way, the 22-year difference in life expectancy results in $700,000 in lost lifetime income per individual. The authors said they believe this is the first study to provide data about income lost because of sickle cell disease.

A birth population of 1950 individuals born with the disease each year would lose over $1.4 billion in lifetime income; this does not include indirect costs, such as lost workdays for illness, lost educational potential, lost time from work for parents or caregivers of children with the disease, and time spent in facilities receiving care.

Other studies have noted that patients with sickle cell disease are less likely to be employed.

Last month, the National Institutes of Health (NIH) announced plans to invest at least $100 million over the next 4 years to develop gene-based therapies for sickle cell as well as HIV. The Bill and Melinda Gates Foundation (Gates Foundation) will also contribute $100 million to the goal of advancing these potential cures, with an aim toward providing affordable, globally available treatment that will be accessible to patients in low-resource settings.

Reference

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 Network Open. doi: 101001/jamanetworkopen.2019.15374.