PSY42 - The Direct Cost Burden of Tuberous Sclerosis Complex Among Insured Patients in the US

Abstract

By evaluating private and public US medical insurance claims, we aimed to quantify healthcare utilization and costs associated with tuberous sclerosis complex (TSC). TSC is a rare genetic disease often characterized by seizures, intellectual disability, behavioral problems, skin abnormalities, and/or lung and kidney disease. In this retrospective cost study, commercial and Medicaid insurance claims (2010-2015) were queried to identify patients with a diagnosis of TSC (ICD-9 code 759.5), drug coverage, and ≥2 years data. Controls with no evidence of TSC or epilepsy were matched to patients with TSC by age, gender, US region, and consistent insurance coverage. Healthcare utilization and costs were assessed for 2 years from date of first claims evidence of TSC, by diagnosis or fill of an anti-seizure drug. Average utilization and costs (normalized to 2017 dollars) were evaluated on a per-patient-per-year (PPPY) basis. 2,789 patients with TSC were identified: 1,625 with commercial insurance (mean age 27, 54% female) and 1,164 with Medicaid (mean age 26, 52% female). Patients with TSC utilized 2-3 times more medical services and over twice as many drugs (including non-antiepileptic drugs) vs. matched controls (p<0.0001) in both payer groups. The highest utilized service categories PPPY were: physician visits (9 visits) and ‘other’ outpatient services (e.g. speech and physical therapy) (6 visits) in patients with commercial insurance; and home health (33 visits) and ‘other’ outpatient services (e.g., habilitation, case management) (44 visits) in patients with Medicaid. Total costs PPPY (services +drugs) were higher in patients with TSC vs. controls: $20,586 vs. $4,181 for commercial-insured and $31,496 vs. $7,377 for Medicaid-insured (p<0.0001). The biggest cost contributors PPPY were: inpatient care ($5,078) for patients with commercial insurance and ‘other’ outpatient services ($8,363) for patients with Medicaid. Direct costs associated with TSC are substantial, highlighting the need for new treatments.