“Working together, we can eliminate hepatitis B in the U.S., but it will mean prioritizing hepatitis B as an urgent public health problem. Now is the time to prioritize and accelerate research so that we can find a cure for hepatitis B and effectively treat liver cancer.”
Chari Cohen, DrPH, MPH, Vice President, Public Health & Programs, Hepatitis B Foundation and Co-Chair, Hep B United
In the U.S., an estimated 2.2 million Americans are chronically infected with hepatitis B, with up to 80,000 new infections each year. Only 25% of infected individuals are aware of their infection and less than 10% are able to access care and receive treatment. Hepatitis B is associated with significant health disparities, disproportionately impacting Asian American and Pacific Islander (AAPI) and African immigrant communities. AAPIs make up 50% of the HBV infection burden and have liver cancer rates that are up to 13 times higher than Caucasian populations. Hep B United has a total reach of 4 to 6 million Asian Americans and Pacific Islanders, which is our target population.
Hep B United is a national coalition which was founded in 2012 is currently comprised of 36 organizations, including 22 local community coalitions in 18 states and 23 cities across the U.S.
With funding support from the U.S. Department of Health and Human Services (HHS), the Hepatitis B Foundation and the Association of Asian Pacific Community Health Organizations (AAPCHO) convened Hep B United as a national campaign comprised of a network of community-based coalitions. HBU’s mission is dedicated to reducing the health disparities associated with HBV by increasing awareness, screening, vaccination, and linkage to care for high-risk communities across the U.S. HBU came together with approximately 15 founding members at its first summit. Together, the partners created a first national community/coalition strategic plan to address hepatitis B in alignment and response to the goals of the first HHS National Action Plan to Combat Viral Hepatitis. The HBU coalition membership was a unique model based on a “coalition of coalitions” where members are comprised of local HBV coalitions typically made up of members that represent a variety of sectors including community health organizations, health clinics, local/state government health agencies, academic/research institutions, health care providers, social service organizations, faith-based organizations, individuals living with hepatitis B, businesses, and others.
The Hep B United (HBU) coalition capacity building program aims to significantly increase the number of people living with hepatitis B that are tested and linked with appropriate health care services and to decrease HBV-related illness and death in the United States. Additionally, HBU was launched in partnership and coinciding with the premiere of the CDC Know Hepatitis B Campaign, a national communications campaign promoting hepatitis B testing among Asian Americans and Pacific Islanders. The Know Hepatitis B multilingual campaign has materials in English, Chinese, Korean, and Vietnamese and messages are delivered through a variety of multi-media channels.
The objectives of the Hep B United coalition capacity building program are to:
- increase the number of coalition partners, including organizations at regional, state, and local levels, working together and sharing resources, strategies, and lessons learned focused on community-based hepatitis B education and testing.
- increase capacity of coalition members to deliver culturally competent and appropriate educational outreach to Asian American and Pacific Islander communities.
- increase numbers of Asian Americans and Pacific Islanders tested for chronic hepatitis B who are unaware of their infection.
- Increase reach, exposure, of the Centers for Disease Control and Prevention’s (CDC) Know Hepatitis B educational campaign materials.
Hep B United’s capacity building activities include: a mini-grants program with goals to increase innovative community-based hepatitis B education, testing, and linkage to care programs; monthly coalition calls to share resources and best practices; monthly training webinars; an annual summit; an HBV storytelling program; a technical assistance peer mentoring program; and a speakers bureau to engage with Asian ethnic media and disseminate hepatitis B education and testing messages.
HBU partners screened an average of 40,000 AAPI’s each year which includes clinic-based partners who serve Asian American communities in California, New York, Ohio, Georgia, New Jersey, Washington, and Texas. Among coalition partners surveyed in the first three years of the project, over 52,000 individuals received HBV education and over 22,000 individuals from our target population were tested for HBV at community-based screening events. The overall infection rate was 7.2%, varying greatly between 3.6% in Washington, DC to 17.6% in New York City, with percentage linked to care varying between 65% to 100%.
The program also increased reach and exposure of Know Hepatitis B campaign materials to target populations, disseminating over 6,000 in-language resources to local partners through community-based HBV education and testing events.
The first group of the peer mentoring program resulted in the development of two new HBV coalitions in Minnesota and New Jersey.
The capacity building training webinar topics were determined by a needs assessment survey. They have reached over 2,000 individuals/organizations live, over 6,000 online views, and continue to serve as an educational resource on Hep B United’s website and YouTube channel.
In your opinion, what were the main things that helped the activity to be successful?
A key to the success of the national and local partnerships are the shared values and goals of achieving health equity and breaking down barriers in accessing health care services for those at risk for and living with chronic HBV. The coalition’s annual in-person summit continues to grow each year as our membership expands and as the event becomes further branded as an annual national hepatitis B partners convening. The coalition has filled a need to unify efforts to combat hepatitis B around the country. Our strategies around coalition building — to consistently provide a space for information sharing on successes and challenges, as well as serving as a national platform to advocate for improvements in hepatitis B programs and policies, are critical to our success. Our successful programs reflect the unique role the coalition serves, as both a hepatitis B programming facilitator as well as an advocacy channel.
How could the activity be improved (lessons learned, crucial aspects for replication, implications for future policy and practice work etc.)?
This program is intended to increase HBV testing and linkage to care, and it is a model that can be replicated for other public health priorities, geographies/globally, and target populations.
The program activities such as the training webinars could be expanded to a larger audience. Co-hosting events with non-traditional partners and broader health coalitions has been helpful in engaging with additional stakeholders.
Overall, with the expansion of the coalition and its capacity building programs and activities (including the annual summit), the infrastructure of the coalition itself has had to adjust and formalize over time. With the evolution of this model, we strive to maintain its grassroots perspective and promote community-based HBV testing. Concurrently, while community-based testing has been highly effective in reaching a large proportion of the target population, the coalition also is an advocacy voice to promote widespread HBV testing within the primary health care system.
Did you face any challenges? Outline ways you overcame your challenges.
It can be challenging to maintain partnership momentum with competing interests, limited capacity, and resources. We have had to innovate program activities and seek new sources of funding to achieve sustainability and maintain momentum.
“Thank you for the continued efforts to improve health outcomes for the communities affected by HBV.” – HBU partner
“This Summit illustrates our ongoing commitment to reducing disparities in Asian American, Pacific Islander and other communities disproportionately impacted by this preventable and treatable disease. In continuing to work together to improve the coordination of activities both at the local and national level, we are influencing real change to combat this hidden epidemic and taking steps toward ending the burden of viral hepatitis on all communities.” Jeffrey Caballero, MPH, Executive Director, Association of Asian Pacific Community Health Organizations and Co-Chair Hep B United