Good problems to have? Policy and societal implications of a disease-modifying therapy for presymptomatic late-onset Alz
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(2020) 16:11
REVIEW
Open Access
Good problems to have? Policy and societal implications of a disease-modifying therapy for presymptomatic late-onset Alzheimer’s disease Misha Angrist1* , Anna Yang2, Boris Kantor3 and Ornit Chiba-Falek4,5 * Correspondence: misha.angrist@ duke.edu 1 Initiative for Science and Society and Social Science Research Institute, Duke University, Durham, North Carolina 27708-0222, USA Full list of author information is available at the end of the article
Abstract In the United States alone, the prevalence of AD is expected to more than double from six million people in 2019 to nearly 14 million people in 2050. Meanwhile, the track record for developing treatments for AD has been marked by decades of failure. But recent progress in genetics, neuroscience and gene editing suggest that effective treatments could be on the horizon. The arrival of such treatments would have profound implications for the way we diagnose, triage, study, and allocate resources to Alzheimer’s patients. Because the disease is not rare and because it strikes late in life, the development of therapies that are expensive and efficacious but less than cures, will pose particular challenges to healthcare infrastructure. We have a window of time during which we can begin to anticipate just, equitable and salutary ways to accommodate a disease-modifying therapy Alzheimer’s disease. Here we consider the implications for caregivers, clinicians, researchers, and the US healthcare system of the availability of an expensive, presymptomatic treatment for a common late-onset neurodegenerative disease for which diagnosis can be difficult. Keywords: Alzheimer’s, Therapy, Access, Diagnosis, Gene editing, Service delivery, Infrastructure, Drug pricing
Introduction As the sixth leading cause of death in the United States, Alzheimer’s disease (AD) constitutes a major public health crisis. Nearly six million Americans over the age of 65 are living with AD; by 2050 that number is expected to approach 14 million (Alzheimer's Association 2020). The total lifetime cost of caring for an AD patient is estimated to be on the order of $350,000; in 2018, the financial burden of physical and emotional caregiving for AD (and other dementia) patients approached $12 billion (El-Hayek et al. 2019). Meanwhile, the AD drug development pipeline has been marked by decades of failure. The biology of AD is complex—whether one develops late-onset AD (LOAD), for © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Cre
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