Cost of living with sickle cell anemia

In a study published today in Bloody achievements, Researchers have found that private insured persons with sickle cell anemia spend about $ 1.7 million on medical expenses related to the disease for life. These findings underscore the enormous economic burden that affects people living with IRR, and raise questions about how advances in the medical field, such as gene therapy, may one day affect the cost of care.

SCD is the most common inherited red blood cell disease in the United States, affecting approximately 100,000 people. According to the Centers for Disease Control and Prevention (CDC), SCD affects one in every 365 births of blacks or African Americans and one in every 16,300 births in Latinos. Given that SCD has a disproportionate impact on black and Hispanic communities, such high health care costs create even more disproportionate financial constraints for these populations.

This study, funded by the National Heart, Lung and Blood Institute, Cure Sickle Cell Initiative, not only found excessive general medical expenses related to SCD, but also found that people with SCD pay significant out-of-pocket expenses for private insurance. plans.

“Our findings suggest that the lifetime cost of health care is about $ 44,000 for people with SCD,” said study author Kate Johnson, Ph.D., of the Institute for Comparative Health, Policy and Economics (CHOICE). Department of Pharmacy, University of Washington. “For this population, the annual burden of expenditures can range from 5 to 10% of annual income.”

To conduct this study, Dr. Johnson and colleagues collected data from a retrospective cohort of individuals born to 64 years of age diagnosed with IRR from 2007 to 2018 using a commercial claims database. The repository contained information such as outpatient and inpatient medical claims, prescription drug claims, records of health care use, payers and individual expenses, demographics, and insurance plans. They then analyzed these statistics against the corresponding controls without SCD.

The results showed that the medical costs of non-older people associated with CVD are approximately $ 1.6 million for women and $ 1.7 million for men. Notably, participants also spent about $ 44,000 on out-of-pocket expenses. In addition, these results suggest that medical costs for IRR treatment peaked between the ages of 13–24 years and declined with age. Researchers believe this may be due to both the typical progression of IRR and adolescents and young adults, who are in transition when their care may change or they may change insurance plans.

Dr Johnson noted that this study is limited in that these findings do not cover indirect costs can be accumulated in the care of IRR, such as loss of productivity due to disability or time spent treating the disease, both for patients and for their caregivers. She also stressed that the figures do not include people covered by public insurance plans such as Medicaid, and that only a third of patients with SCD have private insurance.

In the long run, the teams of the University of Washington and the Fred Hutchinson Cancer Research Center, which is tasked with leading the Cure Sickle Cell Economic Impact Consortium, are working to get a complete picture of the total cost of living with SCD. They believe it is necessary to estimate the cost of treating IRR, for example gene therapyand evaluate how these innovations can reduce the financial burden of living with this disease.

“Hopefully, these findings will spark a conversation about the prices of gene therapy,” Dr. Johnson said. “While the SCD is a a rare diseasethe current treatments available create a significant economic burden on individuals and our entire health care system. ”