Objective: To determine the association between health insurance and Huntington’s Disease (HD) time to diagnosis, delays in access to specialty care, and HD specific clinical outcomes.

Background: Socioeconomic mediators may influence HD care and access to specialty services.¹ We investigated the role of insurance and hypothesized that publicly insured individuals would experience longer delays to diagnosis and COE presentation, decreased access to services, and worse clinical outcomes.

Method: We performed an electronic health record review of 458 individuals with HD seen at a Huntington’s Disease Society of America (HDSA) Center of Excellence (COE) in Southern California, from 2012-2024. We defined time-to-diagnosis as age of diagnosis minus age at first symptom onset. Delays to specialty care was defined as the interval from age at HD diagnosis to age at first COE visit. Linear regressions evaluated associations between insurance payer and time-to-diagnosis and delays to first COE visit. Sequential models adjusted for biological factors (age at symptom onset, sex, race, CAG length) and socioeconomic variables (neighborhood socioeconomic status). Logistic regressions evaluated associations between insurance and chorea medications, reported falls, suicidal ideation, and access to psychiatry and physical therapy.

Results: Of 458 patients, 57% were female; 61% White Non-Hispanic, 26% Hispanic, 6% Black, and 3.5% Asian. At first COE visit, 29% had private insurance, 25% Medicare, 16% Medicaid, and 30% were self-pay. Compared to private insurance, those with public insurance (Medicare/Medicaid) had longer delays to diagnosis in all models (SES-adjusted β 4.02, CI 1.50-6.54). Insurance was not associated with delays in first COE visit or clinical outcomes. Specific to medications, publicly insured patients had higher risk of using both VMAT2 inhibitors and antipsychotics in the course of disease, rather than sole use of either, in our biologically adjusted model (RR 3.50, CI 1.11-11.04); this was not significant with further adjustment.

Conclusion: Public insurance was associated with longer diagnostic delay in HD but not with differences in COE presentation, access to services, or secondary outcomes. Higher use of both chorea meds amongst publicly insured suggests differences in treatment patterns across insurance groups that may be mediated by SES, highlighting potential disparities in HD care requiring further investigation.

References: 1. Griffith, Derek M., et al. “Determinants of inequities in neurologic disease, health, and well-being: the NINDS social determinants of health framework.” Neurology101.7_Supplement_1 (2023): S75-S81

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-impact-of-insurance-on-delivery-of-huntingtons-care-at-an-hdsa-center-of-excellence/