Category: Huntington's Disease
Objective: To estimate the current prevalence of Huntington’s disease (HD) among Medicaid beneficiaries in the United States (US).
Background: HD is a genetic, progressive, neurodegenerative disease characterized by cognitive, behavioral and motor symptoms. Onset of HD usually occurs between 30 and 50 years of age, with an average survival of 15 years after diagnosis. Few estimates of HD epidemiology in the US exist; a recent study using a commercial administrative claims database calculated prevalence and incidence at 6.5 and 1.2 per 100,000 persons and person-years, respectively. We set out to generate estimates of prevalence among beneficiaries covered by Medicaid, a US federal-state public insurance program that provides healthcare coverage to low-income individuals.
Method: Medicaid Analytic eXtract (MAX) data from 17 states were used to identify beneficiaries ≤64 years old who were diagnosed with HD based on the presence of ≥1 medical claim with a diagnosis for HD (International Classification of Diseases, Ninth Revision, Clinical Modification [ICD-9-CM] code: 333.4) in 2014. Only non-dual eligibility and Fee-for-Service (FFS) Medicaid beneficiaries were included in the study. Prevalence proportion was calculated as the number of HD cases in 2014 divided by all beneficiaries enrolled in 2014 (reported per 100,000 persons). Estimates were stratified by sex, age category (≤17, 18-34, 35-44, 45-54, 55-64), and disease stage (early, middle, late).
Results: In 2014, 353 Medicaid beneficiaries were identified as having HD, translating to a prevalence of 15.2 per 100,000 persons (females: 19.6; males: 10.6). HD prevalence increased by age category (1.1, 12.3, 50.6, 65.1, 83.7). Beneficiaries with late stage disease had the highest prevalence (3.5, 2.2, 9.6).
Conclusion: This study of HD epidemiology among Medicaid beneficiaries in the US is the first of its kind. These estimates of HD prevalence are higher than those previously reported in other US patient populations, which may reflect both the age of onset of HD and the unique eligibility qualifications of Medicaid that give way to a population with greater disability.
Study funded by F. Hoffmann-La Roche Ltd.
To cite this abstract in AMA style:
A. Exuzides, S. Reddy, E. Chang, C. Paydar, G. Yohrling. Epidemiology of Huntington’s Disease (HD) in the US Medicaid Population [abstract]. Mov Disord. 2020; 35 (suppl 1). https://www.mdsabstracts.org/abstract/epidemiology-of-huntingtons-disease-hd-in-the-us-medicaid-population/. Accessed October 22, 2026.« Back to MDS Virtual Congress 2020
MDS Abstracts - https://www.mdsabstracts.org/abstract/epidemiology-of-huntingtons-disease-hd-in-the-us-medicaid-population/