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非洲裔人群中心脏淀粉样变性的负担不均——全球资源与医疗可及性的失衡

Uneven burden of cardiac amyloidosis in people of African descent - global imbalance in resources and access.

作者信息

Madu Ernest C, Mezue Kenechukwu

机构信息

Division of Cardiovascular Medicine, Heart Institute of the Caribbean and HIC Heart Hospital, Kingston, Jamaica.

Section of Cardiovascular Medicine, Yale School of Medicine, New Haven, CT, USA.

出版信息

BMC Glob Public Health. 2023 Sep 1;1(1):15. doi: 10.1186/s44263-023-00016-3.

DOI:10.1186/s44263-023-00016-3
PMID:39681929
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11622854/
Abstract

Transthyretin cardiac amyloidosis (TTR-CA) is now increasingly becoming recognized as an important cause of heart failure, and some studies have shown that as much as a third of diastolic heart failure could be attributed to TTR-CA. Black populations are particularly at risk for TTR-CA as the most common form of the disease (hereditary TTR-CA) has a genetic basis and the gene responsible is most prevalent among people with West African ancestry. This perspective piece explores the challenges that individuals of African and Caribbean populations face when confronted with the burden of TTR-CA. Key issues include the absence of rigorous disease registries, deficits in human resources, a lack of infrastructure for testing and treatment, poor awareness and health literacy, financial limitations including an inadequate public health budget, and the absence of social safety nets. To address these challenges, proactive strategies are needed to build infrastructure and local capacity which will provide the framework for an effective response. Interventions should include healthcare financing mechanisms to protect and care for vulnerable and at-risk populations with a long-term strategy of increasing the financial remuneration for health workers in developing countries to prevent the brain drain. Additionally, pharmaceutical companies need to play an active role in promoting inclusive access and global health equity in the access to the new treatments for TTR-CA which predominantly affects Black populations. Collaborative ventures with international centers of excellence can help improve access in these communities, leveraging their expertise and resources.

摘要

转甲状腺素蛋白心脏淀粉样变性(TTR-CA)如今越来越被视为心力衰竭的一个重要病因,一些研究表明,高达三分之一的舒张性心力衰竭可能归因于TTR-CA。黑人人群尤其易患TTR-CA,因为该疾病最常见的形式(遗传性TTR-CA)具有遗传基础,而相关基因在西非血统人群中最为普遍。这篇观点文章探讨了非洲和加勒比人群在面对TTR-CA负担时所面临的挑战。关键问题包括缺乏严格的疾病登记系统、人力资源不足、缺乏检测和治疗基础设施、意识和健康素养低下、包括公共卫生预算不足在内的资金限制,以及缺乏社会安全网。为应对这些挑战,需要采取积极策略来建设基础设施和地方能力,这将为有效应对提供框架。干预措施应包括医疗融资机制,以保护和照顾弱势群体和高危人群,制定长期战略,提高发展中国家卫生工作者的经济报酬,以防止人才外流。此外,制药公司需要积极促进包容性获取,并在获取主要影响黑人人群的TTR-CA新疗法方面实现全球健康公平。与国际卓越中心的合作项目有助于改善这些社区的获取机会,利用它们的专业知识和资源。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8b3e/11622854/07a24157d5f2/44263_2023_16_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8b3e/11622854/07a24157d5f2/44263_2023_16_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8b3e/11622854/07a24157d5f2/44263_2023_16_Fig1_HTML.jpg

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以色列的遗传性转甲状腺素蛋白淀粉样变性:基因图谱与临床特征
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Should We Systematically Screen for the Amyloidogenic V142I Variant?我们应该系统性地筛查淀粉样变V142I变体吗?
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