OBJECTIVES: Huntington’s disease (HD) is a rare, inherited, and progressive neurodegenerative disease with a significant impact on the lives of patients and their families. Here we evaluated treatment patterns and healthcare resource use (HCRU) for Medicare beneficiaries with an HD diagnosis.

METHODS: Individuals with HD were identified in Medicare claims between January 2010 and December 2020 and assigned to two cohorts based on age and Medicare qualification criteria. Cohort 1: Age <65 years and on Medicare due to disability. Cohort 2: Age ≥65 years, on Medicare due to age, and had continuous coverage in Medicare Parts A, B and D for ≥360 days before incident HD diagnosis (baseline). Both cohorts required ≥180 days of follow-up post index HD diagnosis. Those with other neurodegenerative diseases were excluded. Descriptive characteristics, annual medication use, comorbidities and associated costs were summarized by cohort.

RESULTS: 1715 (cohort 1) and 4601 (cohort 2) individuals with HD were identified. Baseline characteristics for Cohort 1: mean age 45 (±11) years, 52% female, 77% non-Hispanic White, and 79% Medicaid eligible; Cohort 2: mean age 75 (±7) years, 63% female, 82% non-Hispanic White, and 24% Medicaid eligible. Neurologic, psychiatric, and cognitive comorbidities were frequently reported in both cohorts. However, the proportion with psychiatric comorbidities was higher in cohort 1 (41%) than cohort 2 (26%). Psychiatric and HD-specific medication use rates were also higher in cohort 1 vs cohort 2 (anti-depressants: 60% vs 34%; anti-psychotics: 51% vs 14%; tetrabenazine: 24% vs 6%). Post-diagnosis HD-related overall spending was higher in cohort 1 [$17,321 (±33,106)] than cohort 2 [$3,992 (±15,394)].

CONCLUSIONS: Treatment patterns in HD largely reflected management of psychiatric symptoms and limited use of HD-specific medications. As a result, the burden of HD on HCRU and costs remains substantial, especially among beneficiaries on Medicare due to disability. This highlights the need for better treatment options.