Healthcare Utilization and Costs in Commercially Insured Patients with AL Amyloidosis

Objectives: Amyloid light chain (AL) amyloidosis is a rare, progressive, and typically fatal disease caused by extracellular deposition of misfolded immunoglobulin light chains (LCs). Soluble toxic aggregates and deposited fibrils (amyloid) lead to progressive failure of vital organs, including the heart, kidneys, and nervous system, causing significant morbidity and mortality. Its effects on resource utilization are poorly understood. The aim of this study was to estimate healthcare utilization and costs among patients with AL amyloidosis.

Methods: In this cross-sectional study, for each calendar year (CY) 2007-2015, patients with AL amyloidosis were identified in the Truven MarketScan^® Commercial and Medicare Supplemental databases if they had: (1) ≥1 inpatient or 2 outpatient claims consistent with AL amyloidosis [International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) codes: 277.30 or 277.39; International Classification of Diseases, 10th Revision, Clinical Modification (ICD-10-CM) codes: E85.4x, E85.8x, or E85.9x] in any diagnosis field within that CY; and (2) AL treatment (eg, chemotherapy, hematopoietic stem cell transplant [HSCT]) following diagnosis. This algorithm was used to identify patients as there is no diagnosis code specific to AL amyloidosis. Exclusion criteria were age <18 and lack of enrollment on January 1 of ID year. Full-year enrollment was not required after exploratory analysis suggested most patients with partial year enrollment likely died during the year. We reported descriptive statistics on healthcare costs and utilization by CY and overall. Some patients may have been included in multiple CYs at different points in the course of their disease. Costs were adjusted to 2015 US$. All analyses were done using SAS^®.

Results: There were 7,326 patients identified overall (between 368 and 1,080 unique patients per year), with a mean (SD) age 63.6 (12.1), 45% of whom were female. All US regions were represented. Hospitalization was common: 50.1% (n=3,670) were admitted at least once during the year and 11.3% (827) were admitted 3 or more times. Utilization decreased over time (57.0% in 2007 and 46.2% in 2015 had any hospital admission). Among admitted patients, mean (SD) length of stay (LOS) was 14.7 (19.5) days; 3.7% of patients had HSCT, with mean (SD) LOS of 21.0 (12.6) for the transplant. Patients were seen for outpatient care with a mean (SD) of 45.2 (36.2) times per year. Mean (SD) [median] total annual cost was $101,855 (148,965) [51,939] for all patients. Medical costs were $88,801 (144,491) [38,936], with $50,126 (86,232) [22,100] accrued in the outpatient setting, $37,909 (100,892) [802] inpatient, and $766 (3,650) [0] emergency department. Outpatient pharmacy costs were $13,054 (26,606) [3,501]. Costs increased over time ($92,866 in 2007 to $114,030 in 2015).

Conclusions: Patients with AL amyloidosis use substantial healthcare resources. Half of patients with AL amyloidosis were admitted to the hospital each year for an average stay of more than 2 weeks. Visits to laboratories, offices, and other outpatient sites occur almost twice a month. The total cost of this care is more than $100,000 per patient per year and rising. New therapies aimed at improving organ response have the potential to reduce disease burden and healthcare utilization.