Hepatitis Awareness Month 2018: #JustB Patient Storytelling Project

Hepatitis Awareness Month is a month-long, worldwide campaign dedicated to raising awareness of viral hepatitis and encouraging people across the country to get tested and vaccinated. This week, we’re sharing some information and resources about the hepatitis B virus.

What is Hepatitis B?

Hepatitis B is the most common serious liver infection in the world and is caused by the hepatitis B virus (HBV). HBV is transmitted through direct contact with bodily fluids infected with HBV including blood, semen, or other bodily fluids. A person can acquire HBV via unprotected sexual contact, sharing needles, syringes or other drug-injection equipment, or from mother to baby at birth.

HBV is often referred to as a silent epidemic as many people who have HBV don’t experience symptoms for years. In fact, 65% of people currently living with HBV are not aware of it due to its asymptomatic nature. Symptoms of HBV can include fever, fatigue, loss of appetite, nausea, vomiting, abdominal pain, dark urine, clay-colored bowel movements, joint pain and jaundice. HBV is preventable and treatable. Anyone can easily be tested for HBV via a simple, quick blood test. There is also an HBV vaccine that prevents people from acquiring HBV. The best way to prevent HBV is by getting vaccinated, and the only way to know that you have HBV is to get tested.

Anyone can get HBV but people at greater risk are those who:

  • Have sex with an infected person
  • Have multiple sexual partners
  • Have a sexually transmitted disease
  • Are men who have sexual contact with other men
  • Inject drugs or share needles, syringes, or other drug equipment
  • Live with a person who has chronic HBV
  • Are infants born to infected mothers
  • Are exposed to blood on the job
  • Are hemodialysis patients
  • Travel to countries with moderate to high rates of HBV

For some, HBV is an acute or short-term illness, but it can become a long-term chronic infection. Risk for chronic infection is related to the age that a person becomes infected. Approximately 90% of infected infants become chronically ill compared with 2-6% of adults. Chronic HBV can lead to serious health complications including scarring of the liver (cirrhosis), liver cancer, liver failure, and death. In the United States, an estimated 850,000 to 2.2 million persons have chronic HBV. Chronic HBV has no cure but can be treated via a regimen of antiviral medications approved by the U.S. Food & Drug Administration.

Last month, the Centers for Disease Control and Prevention released new surveillance data on viral hepatitis in the U.S. Findings show that in 2016, an estimated 20,900 HBV infections were reported and about half of chronic HBV infections were among people who are Asian/Pacific Islander. This report confirms the need to support the efforts of organizations working to address rising rates of chronic HBV and the racial/ethnic disparities in the prevalence of HBV within their communities. Local health departments play a crucial role in addressing HBV in their jurisdictions and offer leadership and support across the continuum of viral hepatitis prevention, care, and treatment.

#justB Patient Storytelling Project

An extremely important aspect of comprehensively addressing hepatitis B is actively engaging individuals living with HBV to understand the obstacles to screening, prevention and care, and reduce stigma surrounding HBV. The Hepatitis B Foundation is currently collaborating with StoryCenter and the Association of Asian Pacific Community Health Organizations on the #justB Storytelling Project, a national story bank that features short digital videos detailing the stories and lives of everyday people living with or affected by HBV. Individuals interested in viewing these stories can visit the #justB story bank to watch several videos about those impacted by HBV. Local health departments can leverage these stories to help reduce the stigma of HBV within their jurisdictions and normalize HBV testing and treatment. As part of the project, the Hepatitis B Foundation is helping people living with and/or affected by HBV to share their stories and is also training and supporting them to act as spokespeople in their local communities and nationally to help increase HBV awareness and promote the importance of HBV screening and care. The Hepatitis B Foundation is also committed to representing a diversity of people and perspectives within this project.

Participate in #justB

The Hepatitis B Foundation is currently looking for women and men (18 years or older) who have been impacted by HBV and have strong interest and commitment to raising HBV awareness. StoryCenter’s “Digital Storytelling Workshop” brings a small group of people together to transform their unique, personal stories into short digital videos. The workshop is participatory: those who attend share a story verbally in a group “Story Circle;” write a script for the story; record the story into a microphone; choose and take photos and video clips for the story; and collaborate with workshop facilitators to combine these materials into a short video. The workshop includes time for participants to talk about how their stories can be shared publicly to educate viewers and inspire action. Visit www.hepb.org/justb to view the types of videos that are produced in the digital storytelling workshops.

The next digital storytelling workshop for the #justB project will be held in Washington, DC from Saturday, July 21st to Monday, July 23rd, 2018. Participants must be able to attend all three days of the workshop. The Hepatitis B Foundation will arrange and pay for all participant travel and lodging costs, and meals will be provided for the duration of the workshop. Participants will also receive a stipend to help compensate for missed work time.

For more information about how to become involved in the #justB project, please view the recording and slides from Hepatitis B Foundation’s most recent informational/recruitment webinar. Potential storytellers should complete the online Participant Information Form by Friday, June 1, 2018 to be considered for the next workshop. Email Rhea Racho (rhea.racho@hepb.org) with any questions, comments or suggestions.

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