Economic Burden of Sickle Cell Disease among Children and Adults.
Authors: Hartzema Abraham G. , Kauf Teresa L. , Coates Thomas D. , Huazhi Liu , Mody-Patel Nakita 
Published: October 2019

Abstract
Background: The economic burden of sickle cell disease (SCD) has not been determined. Cost-of-care estimates improve health care planning, inform research priorities, and contribute to an understanding of the cost-effectiveness of new SCD treatments. The objectives of this study were
examine resource utilization in the Florida Medicaid population; to estimate the cost of medical care for SCD patients; and to examine the proportion of medical care costs attributable to SCD versus other morbidities.
Methods: Pediatric (0 – 19 years; y) and adult (> 20 y) patients with a diagnosis of SCD between 1/2001–12/2005 were identified from Florida Medicaid claims. Patients with at least 1 inpatient or 2 outpatient SCD claims at least 30 days apart and ≥6 Medicaid-eligible months, not necessarily consecutive, were included in the analysis. Medicaid administrative data consist of medical and pharmacy utilization and reimbursement claims for medically-needy and low-income recipients. Resource utilization and costs were estimated using paid claims for hospitalizations, emergency room visits, outpatient visits, pharmacy claims, and other care (blood transfusions, hydroxyurea, iron chelation, serum ferritin tests). Claims containing a primary or secondary ICD-9 code indicating SCD were considered “SCD-related”; all other claims were classified as “non-SCD-related”. Individuals aged >65 y and/or dually eligible for Medicare or other health insurance were excluded. Annualized costs were estimated by multiplying mean cost per patient-month by 12. All costs were inflated to 2005 US$ using the medical care component of the Consumer Price Index.
Results: A total of 4,294 individuals met study inclusion criteria. Mean age at first claim was 14.5 y (range: 0–64 y; SD 13.2); 55.8% were female; 79.1% African-American. Mean SCD-related costs for pediatric (0–9 y) and adolescent (10–19 y) patients were estimated at $5,292 and $11,508 per year, respectively. Overall, 66% of total medical costs were related to SCD. The distribution of SCD-related costs was bimodal, with the youngest (0–9 y) and oldest (50–64 y) having the lowest proportion of SCD-related costs (53.7% and 35.3%, respectively). Non-SCD-related costs increased with age, ranging from $4,548 annually for ages 0–9 to $16,656 for ages 50–64. While SCD accounted for the largest proportion of total medical costs for patients 10–19 y (77.27%; $11,508), absolute SCD costs were highest for patients 30–39 y (67.1%; $21,792). Cost distributions were similar for males and females. Hospitalizations accounted for 80.5% of all SCD-related costs; emergency room visits, 3.2%; office visits, 0.9%; outpatient drugs, 3.6%; other medical care, 11.7%. Total discounted medical costs (3%) for a SCD patient from birth through age 45 were estimated at $448,460, with 67% of costs related to SCD.
Conclusion: Our results suggest that the burden of SCD is substantial. Moreover, non-SCD-related medical costs for SCD patients are considerably higher than expenditures reported for the general US population. While our results reflect the payer’s perspective, the clinical, humanistic, and economic burden of care on individual patients also is likely high. Interventions designed to prevent SCD complications and keep patients out of the hospital may reduce the significant economic burden of the disease.