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Tag Archives: #justB

A Capitol Celebration: US Leaders in Hepatitis B Celebrate World Hepatitis Day

Hep B United (HBU), a coalition established by the Hepatitis B Foundation (HBF) and the Association of Asian Pacific Community Health Organizations (AAPCHO), held its fifth annual Hep B United Summit from July 26th to 28th in Washington D.C. The summit was held to promote screening and prevention strategies and advocate for a cure to further HBU’s mission to eliminate hepatitis B in the United States.

The summit is the largest gathering of hepatitis B leaders from around the country including public health agencies, national non-profit organizations, community coalitions, and individuals and family members affected by hep B. Catherine Freeland, MPH, Public Health Manager of HBF, said, “The summit is like a family reunion.” It’s an opportunity for HBU members to convene, share best strategies, and celebrate their wins over the past five years. The partnerships within HBU ensures that best practices and resources are shared as well. “Once we have a cure, we are committed to making sure chronically infected Americans get it,” Chari Cohen, DrPH, MPH, co-chair of HBU mentioned during the summit. Over the past year, HBU screened 22,556, educated 52,194, and reached over 6 million people with in-language hepatitis B messaging! That’s a win for sure!

As a part of the summit, HBU partners visited Capitol Hill to discuss with federal legislators the need to support hepatitis B and liver cancer research, education, screening, and treatment programs. A Congressional reception was also held to highlight the “#justB: Real People Sharing their Stories of Hepatitis B” storytelling campaign, which increases awareness of hepatitis B through personal stories. There were also meeting sessions focusing on capacity building, sustaining local hepatitis B coalitions, and best ways to utilize resources like the “Know Hepatitis B” campaign from the CDC and Hep B United and the #justB campaign. The Hep B United Summit is a way to celebrate World Hepatitis Day, which is on July 28th every year. Partners celebrated and raised awareness for World Hepatitis Day around Capitol Hill with a scavenger hunt!

At the Summit, HBU and its CDC partners presented five community leaders with the 2017 Hep B Champion Awards in recognition of their outstanding commitment to eliminating hepatitis B and liver cancer in their communities:

 Cathy Phan, the Health Initiatives Project Manager at HOPE Clinic in Houston, Texas, is recognized for her dedication to reducing health disparities, advocating for access to health care and health equity for underserved populations. Cathy brings unique perspectives, best practices and creative, innovative ideas from the local community clinics to the national level.

Vivian Huang, MD, MPH, the Director of Adult Immunization and Emergency Preparedness for the New York City Department of Health and Mental Hygiene and the medical director for the NYC Department of Health Immunization Clinic is recognized for her commitment to reducing the burden of vaccine-preventable diseases locally and globally including hepatitis B and liver cancer. Dr. Huang is a strong, tireless advocate for hepatitis B prevention, education, and treatment and health equity through health department engagement.

Hong Liu, PhD, the Executive Director of the Midwest Asian Health Association in Chicago, Illinois, is recognized for her innovative approaches to educating the public on hepatitis B and her willingness to share her best practices and experiences with others working in the field. This year, Dr. Liu’s leadership has led her organization to educating over 1,337 individuals in Chicago’s Chinatown district and screening close to 300 individuals for hepatitis B.

Dan-Tam Phan-Hoang, MSc., is program manager of HBI-Minnesota, a Minneapolis, Minnesota-based non-profit that she helped start in 2015. Dan-Tam is recognized for her leadership in Minneapolis, building strong collaborations with community leaders, healthcare providers, funders, and government agencies to address hepatitis B throughout the state and successfully establishing a hepatitis B outreach and prevention program for high-risk communities in the Twin Cities.

The National Task Force on Hepatitis B for AAPI, is a national organization that brings together scientists, health professionals, non-profit organizations, and concerned citizens in a concerted effort to eliminate the transmission of hepatitis B and to decrease health disparities among those chronically infected. The Task Force is recognized for increasing physicians’ awareness about hepatitis B and launching a new health care provider program, bringing together public health and health care professionals in regional meetings around the country. The Health Education for Liver Providers (H.E.L.P.) Training Program is designed to provide health care providers and their medical team core medical knowledge of hepatitis B and hepatitis C.

Read the summit press release here.

More pictures of the summit can be found on HBU’s Facebook album, Storify, and e-newsletter.

To read about the Hep B United 2016 Summit from last year, click here.

Join Us for a Twitter Interview! Meet Our Storytellers and Learn Their Hepatitis B Stories

#justB-Twittervu-blogThe Hepatitis B Foundation is proud to launch its storytelling campaign, sharing the stories of people living with and affected by hepatitis B. Join the Twitter interview at 2 p.m. (EST), Tuesday, May 16, hosted by the Hepatitis B Foundation and StoryCenter.

We will introduce three of our storytellers and their stories. Join the Twitter interview with the hashtag #justB and hear the poignant stories of real people living with hep B.

We will be introducing Jason, Bunmi and Maureen K. Jason, was in a difficult place in his life with addiction and depression when he learned of his hepatitis B and sought treatment. Bunmi, originally from Nigeria, talks about the loss of her father to hepatitis B- related liver cancer and the unwillingness of her family to talk about his disease. Maureen’s hepatitis B journey began with the adoption of her daughter, and the struggle with disclosure with family and friends. These brave storytellers are ready to put an end to the silence surrounding hepatitis B.

Below are the topics scheduled for discussion during the Twitter interview. How can you contribute to the conversation? Please support Jason, Bunmi and Maureen K. as they disclose their hepatitis B stories on social media. Consider sharing parts of your hep B story or pose a question. Join the conversation with the hashtag #justB.

T1. Tell us about hepatitis B, the storytelling campaign and what the foundation hopes to achieve for those affected by hepatitis B.
T2. What makes hepatitis B different from other diseases, and how do these stories highlight the challenges associated with hepatitis B?
T3. We’d like to open it up to our storytellers. Please tell us about your story, and what makes hepatitis B different from other diseases.
T4. How has hepatitis B affected your life?
T5. What made you decide to share your hepatitis B story? Were you concerned with the stigma associated with hepatitis B?
T6. Describe your experience meeting with others impacted by hepatitis B.
T7. If there is one message you would like to get across to others about coping with #hepatitis B, what would it be?
T8: What would you tell others that are struggling with whether or not they should share their hepatitis B story?

Co-hosts and special guest handles include:

Be sure to watch Jason, Bunmi and MaureenK‘s stories.

Are you just getting started with Twitter and want to know how to join the conversation?  Type #justB in the search box of the Twitter application and click on the “latest option” to follow the twitter view.

#justB in search box

 

 

 

 

 

 

 

You can prepare any questions or tweets you might have for the above participants in advance, or you can also tweet on the fly, re-tweet, or Like a tweet from the chat.

The topics are labeled T1, T2, etc. so please respond/answer specific topic by using A1, A2, etc. in front of your tweets. Remember to include the #justB hashtag, which is not case sensitive, in all of your tweets.

Looking forward to sharing the stories of our guests on the Twitter view. Please welcome them by joining the conversation!

People Affected by Hepatitis B Share Stories of Family Secrets, Stigma and Diagnoses That Came Too Late

Alan Wang of Berkeley, CA, describes how doctors failed to test his family for hepatitis B in his video story.
Alan Wang of Berkeley, CA, describes how doctors failed to test his family for hepatitis B in his video story.

In an innovative storytelling initiative, people living with chronic hepatitis B open their hearts and share their stories of family secrets, stigma and diagnoses that came too late as they confront the impact of hepatitis B on themselves and the people they love.

The Hepatitis B Foundation, working with StoryCenter, has created unique video stories that share the experiences of people affected by hepatitis B, which affects one-third of the world’s population. The video stories, which debut May 1 in recognition of Hepatitis Awareness Month, are designed to raise awareness about the liver disease that affects 2 million in the U.S.

There is no better way to understand the human toll hepatitis B takes than to hear directly from those affected. Most people know very little about this disease and up to 75 percent of people living with hepatitis B don’t know they’re infected. The hope is that these stories will put a human face on this infection and help improve testing, vaccination and treatment.

One storytelling video, featuring former ABC 7 News anchor Alan Wang of Berkeley, CA, talks about how doctors fail to test people for hepatitis B. It was after the CEO of Newsworthy Media suffered liver damage that a doctor tested him for hepatitis B. “It was only because I (had) a medical reporter friend who connected me to a leading hepatologist that I got the attention I needed,” Wang, 49, explains in his story. After his diagnosis, he encouraged family members to be tested and his mother and siblings were also found to be infected by the disease that is easily transmitted at birth.

justB“We were left to connect the dots because the medical profession is failing to address an epidemic that kills more than 700,000 people a year,” he explained. “It’s bad enough that hepatitis B is a silent killer with few symptoms until it’s too late. It’s also ignored by Asian cultures that consider talk about deadly diseases to be taboo.”

While a safe and effective vaccine that prevents hepatitis B has been available since 1982, many Americans did not have access to the vaccine. John Ellis Jr., another hepatitis B storyteller who lives in Pensacola, FL, was diagnosed with chronic hepatitis B at age 16. He, like many people living with hepatitis B, does not know how he became infected.

“When I was first diagnosed, I was shocked the doctor couldn’t tell me how I contracted it, as if finding out how I contracted hepatitis B would somehow cure me of it. As I grow older, what’s most important to me is maintaining my health.” Ellis explains in his story that he wants to be, “bigger than his diagnosis.” He does not want hepatitis to hold him back or define him. He is an entrepreneur and he has organized a charity bike ride to raise awareness and funding for research.

Another featured storyteller is pharmacist Bunmi Daramaja, of Elkridge, MD, who grew up in Nigeria and emigrated to the U.S. She struggled with her family’s reluctance to discuss her father’s death from liver cancer, resulting from chronic hepatitis B.

“Stigma is everywhere (in my African culture),” she explained in her story. “People don’t think about the facts of how the virus is transmitted– they are afraid to even touch someone who has it. Many people don’t even want to get tested, because treatment is either not available or costs too much money. They say, ‘What’s the point?’ This needs to change.

“In the U.S., the services are here, and I want to make sure that people of African origin know there are resources. I want to end this silence,” she explained.

The Hepatitis B Foundation’s Storytelling page helps tell the story about an infection in the U.S. that is under-diagnosed, under-treated and remains stigmatized across America.