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Abstract Details

Spatial-Epidemiological Analysis of Proximity to Specialty Center Care for Medicare Beneficiaries with Huntington Disease – Implications for Programmatic Solutions to Address Unmet Needs in Huntington Disease Populations
Movement Disorders
Movement Disorders Posters (7:00 AM-5:00 PM)
042
To describe persons with Huntington Disease (HD) in the U.S. Medicare program and characterize Medicare HD patients by proximity to an HD Center of Excellence (COE)
HD COEs provide multidisciplinary specialty HD care and are the primary hub for research opportunities and accessing new treatments. Data on the extent to which HD COEs are currently accessible to individuals with HD, particularly those who are older or disabled, are lacking.

We conducted a cross-sectional cohort study of Medicare (the U.S. government-led program for older or disabled adults) beneficiaries with an HD diagnosis in 2017. We extracted and analyzed Medicare data on benefit entitlement, demographics, mailing zip code and comorbidities. QGIS software and the Google Maps Distance Matrix API were employed to identify and calculate the distance from each HD patient to the nearest COE. We also determined state level variations in the proportion of individuals within 100 miles of a COE.

Among 9,056 Medicare beneficiaries with HD, 54.5% (n= 4,931) were female, 83.0% (n=7,513) were white; 48.5% (n=4,395) were ≥65 years, but 66.0% originally qualified for Medicare due to disability, not age. Common comorbidities were cognitive disorders (47.7%), depression (47.0%), anxiety (42.2%), hypertension (45.6%), diabetes (22.0%), kidney disease (21.5%) and ischemic heart disease (21.3%). Overall, 5,144 (56.8%) of the HD cohort lived within 100 miles of a COE. Race/ethnicity, sex, age, and markers of poverty did not associate with below average proximity to HD COEs. The proportion of HD patients living within 100 miles of a COE varied from <10% (16 states) to >90% (7 states). The majority of under-served states were in the Mountain and West Central (North and South) divisions of the U.S.
Medicare beneficiaries with HD are frequently disabled and have other medical conditions. Geographical, rather than sociodemographic, barriers define the under-served Medicare population with HD.
Authors/Disclosures
Thanh Phuong Pham Nguyen, PharmD, MBA, MSCE (University of Pennsylvania Perelman School of Medicine)
PRESENTER 		The institution of Dr. Pham Nguyen has received research support from National Institute of Health. The institution of Dr. Pham Nguyen has received research support from National Institute of Health.
No disclosure on file
Pedro Gonzalez-Alegre, MD (Spark Therapeutics) Dr. Gonzalez-Alegre has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Spark Therapeutics. Dr. Gonzalez-Alegre has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Eisai Therapeutics. Dr. Gonzalez-Alegre has received personal compensation in the range of $500-$4,999 for serving as a Consultant for NeuExcell. The institution of Dr. Gonzalez-Alegre has received research support from NIH/NINDS. Dr. Gonzalez-Alegre has received intellectual property interests from a discovery or technology relating to health care.
Allison Wright Willis, MD (University of Pennsylvania) Dr. Wright Willis has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Pharmacoepidemiology and Drug Safety. Dr. Wright Willis has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for JAMA Neurology. The institution of Dr. Wright Willis has received research support from NIH. The institution of Dr. Wright Willis has received research support from NIA. The institution of Dr. Wright Willis has received research support from Biogen. The institution of Dr. Wright Willis has received research support from Parkinson Foundation. The institution of Dr. Wright Willis has received research support from Arcadia.