Objective: To estimate economic costs of caring for an individual with Huntington disease from the patients and caregivers perspective.

Background: Huntington disease (HD) is a devastating fatal neurodegenerative disorder that leads to progressive disability and eventually complete dependence. Caring for a patient with HD imposes a significant financial burden not only due to the costs of medications, but also due to transportation costs, housing adaptations, lost patient income, as well as lost caregiver income. The economic impact of HD in developing countries such as Peru, may be particularly devastating because of the limited social safety net, but little is known about the health costs of HD or other orphan diseases in these settings.

Methods: 97 HD patients and their accompanying caregivers participated in a survey on disease-associated costs. All participants completed a standardized questionnaire related to quality of life, work productivity, activities of daily living, and health care utilization. Direct costs were estimated using a prevalence approach, while indirect health costs were estimated based on human capital approach.

Results: 64% of patients were female, and the mean age in women was 50 years (SD=13.98), and 47 years (SD=13.2) in men. The mean monthly income per patient was $148.30 while the mean monthly household income was $620.30. The mean annual cost of HD is $9538.72 per patient, of which the direct non-health costs are 71.3% of the total, indirect costs are 22.6%, and direct health costs are 6.1%. The annual cost per patient increases with the degree of disability in the patients: patients with a Barthel 5 have an annual cost of $4150.12 US, $9775.36 for Barthel 4, $18,285.11 for Barthel 3, $24,192.21 for Barthel 2, and $24,961.37 for Barthel 1.

Conclusions: The economic impact of HD for families and patients in Peru is catastrophic, with the costs of the disease far surpassing the annual incomes of both patients and their families. It is thus vitally necessary for the state to prioritize economic support and health coverage for these patients and families.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/a-health-cost-analysis-for-huntington-disease-in-peru/