Partners work to address stigma and discrimination associated with viral hepatitis

Cross-posted from the HHS.gov Hepatitis blog

Earlier in the year we launched the Partner Planning Guide, a resource designed for use by individuals, groups, and organizations that are conducting strategic planning efforts for viral hepatitis. Since then, we’ve learned of many examples of innovative efforts being undertaken by a diverse group of partners to advance toward the goals of the National Viral Hepatitis Action Plan and I’m excited to begin sharing some of those examples in this post.

Since everyone has a role to play in the battle against viral hepatitis, the Partner Planning Guide is intended to help you, your agency, or your organization assess existing activities and plan new ones that align with the Action Plan and contribute to reaching our national viral hepatitis goals. When we launched the Partner Planning Guide, we asked you to tell us what you are doing and if your organization is engaged in activities that are helping us reach the goals of the Action Plan. We received an encouraging number of responses to this request, representing a wide range of partners and types of activities.

In this first of a series of blogs showcasing the work being done by incredible partners across the nation, we will focus on the work being done to address stigma and discrimination. Viral hepatitis stigma and discrimination is a very important issue and one that may cause people to avoid testing and treatment and fear disclosing their status to friends, family members, and colleagues. This can lead to worsening health outcomes. In addition, some institutions maintain discriminatory policies and practices that prevent individuals living with chronic viral hepatitis from pursuing professional opportunities even though hepatitis B is vaccine preventable and hepatitis B and C are treatable. To call attention to this serious issue, one strategy highlighted in the National Viral Hepatitis Action Plan is to increase community awareness of viral hepatitis and decrease stigma and discrimination.

Several of our partners are working hard to address stigma and discrimination as they relate to viral hepatitis. This includes the work being conducted by the Hepatitis B Foundation. In May 2017, the Hepatitis B Foundation (HBF) launched #justB, a national multi-lingual digital storytelling campaign, in partnership with StoryCenter and the Association of Asian Pacific Community Health Organizations (AAPCHO). The campaign shares powerful, personal stories of people who have been affected by hepatitis B and want to share their experiences to educate communities and inspire action. The goals of the campaign are to increase awareness and advocacy around hepatitis B; decrease stigma and discrimination associated with the disease; and promote testing, vaccination, and linkage to care and treatment.

Randy’s story, for example, calls attention to discriminatory employment restrictions for people living with hepatitis B. Shortly after Randy’s son Cody was accepted to the U.S. Naval Academy, they learned that Cody has hepatitis B, which prevents him from enlisting in any branch of the military. By speaking out about the impact this policy had on his family, Randy hopes to help change this policy and similar restrictions in healthcare and other fields, so people living with hepatitis B no longer have to face this type of institutional discrimination.

Since launching the #justB campaign in May 2017, the digital story bank has grown to 32 videos, with 15 available in other languages including Chinese, Korean, Vietnamese, and Twi. As of October 2018, the videos have been viewed more than 1.2 million times on YouTube and Facebook. Moving forward, the Hepatitis B Foundation aims to continue expanding its national story bank and will continue to recruit, train, and engage more patients and family members from across the U.S. to record and share their stories.

The Hepatitis B Foundation is a national nonprofit organization dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide. To learn more about the Hepatitis B Foundation click here. To learn more about the storytelling campaign visit: www.hepb.org/justb.

The Association of Asian Pacific Community Health Organizations has undertaken additional efforts to combat stigma associated with viral hepatitis. They developed Understanding and Combating Stigma: A Toolkit for Improving Care and Support for People Affected by HBV. The toolkit was written for health care providers and community health advocates who are interested in improving care and support for people affected by the hepatitis B virus (HBV). The aim of the toolkit is to support providers and community advocates in confronting and reducing the stigma associated with HBV while also promoting increased prevention, care, and treatment of HBV. Click here to access the full toolkit.

AAPCHO is also engaged in initiatives to address instances of institutional discrimination against people living with chronic hepatitis B, and has built strong partnerships in the community to address this important issue. Addressing the root causes of this discrimination is essential to make progress in reducing the burden of hepatitis B because persistent institutional discrimination worsens stigma and other forms of discrimination associated with hepatitis B, causing individuals to be fearful of getting tested for hepatitis B when the test result may limit future professional opportunities.

AAPCHO is dedicated to promoting advocacy, collaboration, and leadership that improves the health status and access of Asian American, Native Hawaiian, and Pacific Islanders within the United States, its territories, and freely associated states, primarily through member Community Health Centers. To learn more about AAPCHO, click here.

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