Worth The Cure: The Role of Community Engagement and Community-Led Reporting in National Hepatitis Efforts

Author: Sara Helena Pereira e Silva Gaspar Bryn Gay Joelle Dountio

Theme: Social Science & Policy Research Year: 2022

The Hepatitis C Partnership for Control and Treatment (Hep C PACT) works in collaboration with
governmental and civil society actors involved in hepatitis C (HCV) advocacy in countries, including
Bangladesh, Cambodia, Malaysia, Mozambique, and Thailand. Many countries have national hepatitis
plans, and community-led platforms that offer opportunities to identify barriers and incorporate
recommendations may help countries align with HCV targets by 2030. Community engagement
ensures the centering of marginalized and vulnerable populations in policies and can offer strategies
for adapting point-of-care HCV testing and treatment. Two advocacy tools aid researchers, policymakers, civil society, and affected communities with community-led reporting and advocacy for
change. Mapcrowd is one community-driven, crowdsourced database that provides information on
the availability and pricing of HCV diagnostics, treatments, plus hepatitis and harm reduction-related
policies. Using this data, the Worth The Cure campaign tool provides a collective learning space and
design toolkit for advocates to take action to address access barriers.
MapCrowd data are free, publicly accessible, and sourced from 119 countries by 60 in-country
contributors globally and supplemented by peer-reviewed publications. Data are limited based on
where we have in-country contributors and networks.
Government-led reporting on HCV can lack nuance and details at subnational or micro-elimination
levels. MapCrowd and Worth the Cure tools are part of effective community engagement platforms
and used in the development and implementation of community-led advocacy that inform national
HCV plans and future hepatitis elimination validation processes in the aforementioned countries.
As countries develop national HCV plans, the involvement of communities, especially people who use
and inject drugs, is fundamental to effective, inclusive, and sustainable achievement of 2030 targets.
MapCrowd and Worth The Cure tools can be used by diverse stakeholders to monitor and assess the
validity of achieving targets and indicators, thus improving transparency and accountability in HCV
programs at country levels.
Disclosure of Interest Statement:
No pharmaceutical grants were received in the development of this study.

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