Hep B Blog

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Eighth Annual Hep B United Summit a Success!

Hep B United is very pleased to report that the eighth annual (and first virtual) Hep B United Summit was a great success! With over 200 attendees from around the US, the summit brought together partners – both new and familiar – to discuss and collaborate on the successes and challenges of the past year, and strategies to move forward toward the elimination of hepatitis B.  

The theme of this year’s summit was “Standing Up for Hepatitis B: Creative Collaborations to Amplify Awareness, Access, and Equity.” The event included many exciting sessions on topics such as progress toward a hepatitis B cure; strategies for providing hepatitis B services in the time of COVID-19; federal updates on hepatitis B; methods for incorporating hepatitis B into viral hepatitis elimination planning efforts at state and local levels; the path to universal adult hepatitis B vaccination; expansion of hepatitis B outreach in non-traditional settings, such as pharmacies, harm reduction centers, and correctional facilities; the pandemic of structural racism and how to bridge gaps in healthcare; and elevating the patient voice to move elimination efforts forward. The event included a poster session with over 20 submissions from presenters around the country, ranging from medical students to organizational partners, and covering a diverse and comprehensive array of topics related to hepatitis B. 

The virtual platform offered a dynamic and engaging experience, with opportunities for networking, game participation, social media involvement, and learning. The Summit concluded with an award ceremony in which nine Hepatitis B Champions and a Federal Champion were honored for their efforts and dedication to hepatitis B advocacy, awareness, prevention, and elimination efforts over the past year. 

 As in previous years, the Summit provided an opportunity for colleagues to gather and to exchange innovative and creative ideas that will help to advance hepatitis B elimination and elevate hepatitis B as an issue deserving of widespread national attention. Recordings of the Summit are available on Hep B United’s YouTube channel – check them out today!

All of Us Research Program

Medicine is not one size fits all. Changing that idea takes All of Us. 

Why is it that an African American woman in her thirties living in a large city tends to receive the same medical care as a man in his sixties of European descent who lives on a farm in rural America, who in turn receives the same treatment as a Korean American mother of two in her forties living in a midwestern suburb? Each of these people has different ancestry, lifestyle, environment, socioeconomic status, and genetics, all of which have a major impact on health. Why should these factors not impact healthcare as well?

The All of Us Research Program, an initiative of the National Institutes of Health, is working to change that. The goal of the program is to diversify the pool of available biomedical data, so that researchers can study many different people and groups, and doctors in turn can then make much more informed decisions about prevention, diagnosis, and treatment of various conditions, that are much more tailored to individual people and to specific groups of people, a practice known as precision medicine. For far too long, doctors have been using data from and information about “the average person” (typically a white man) to make decisions and provide care to everyone in the extraordinarily diverse population of the United States. Now there is a great opportunity for all of us to come together to help them change that! 

The overall objective of the project is to recruit one million or more participants and to follow them over ten years.The Hepatitis B Foundation, in partnership with Hep Free Haw aii and the Asian Engagement and Recruitment Core (ARC), is working to spread the word about the All of Us Research Program to everyone, but particularly among Asian American, Native Hawaiian, and Pacific Islander communities, who are under-represented in this area, historically and currently. 

Why should I participate?

This is an important chance to learn about your own health, including risk factors and exposures.  This is also a great opportunity to help fight diseases, start to close the gaps in a healthcare system that currently does not provide all Americans with the same high quality of healthcare, and more quickly find solutions to serious healthcare problems. Examples of some questions you could help answer are: “How can we prevent the chronic pain that affects more than 100 million people across the US each year? How can we develop cancer treatments that will work the first time, so that we can skip painful trial-and-error chemotherapy? Why does the heart medication Plavix have a much lower success rate among Asian Americans than those of European descent? What would be a more appropriate treatment?” The answers to these questions can be found by gathering more data and more insights from more people. People like you! You have the power to change the course of healthcare for yourself, your community, and future generations.

How Can I Get Involved?

Getting involved is quick and easy! The steps to follow are:

  • Visit www.joinallofus.org to learn more, enroll, and provide consent for the sharing of your electronic health record, where all of your medical information is digitally stored. 
  • Complete a series of surveys that will ask for information about your lifestyle, environment, family history, and background.
  • Provide health measurements like height, weight, waist circumference, and heart rate, among others. 
  • Provide biosamples of blood, urine, and saliva. 
  • Start using apps and technology to track your behaviors and routine activities, starting with a FitBit and including others down the road that are still under development. 

You will receive help and guidance at each stage in the process. 

What about my privacy?

Glad you asked! Any data that you provide will be highly secure and protected. Data security for this project has been built by experts with input from the public. All data is encrypted with identifying information removed, and guaranteed by a Certificate of Confidentiality. Researchers must also agree to a Code of Conduct before accessing the data. You will have access to any and all of your data at any time throughout the program and the highest standard of transparency is practiced. 

What if I don’t want to continue?

You are in control. You can stop your participation at any time. If you have already provided data and no longer want it to be used, you can simply let All of Us know and your data will be destroyed. 

Partners in the Process

All of Us is not a project where researchers know all of the answers and are just mining participants for data. Choosing to participate in All of Us means that you are a partner in the research process. Your thoughts and insights are valuable and you will play a direct role in shaping healthcare for yourself and your community both now and in the future – not just with your data, but as an active participant in the research process, including in the proposal and guidance of future research. 

The All of Us Research Program aims to serve people better, to be more inclusive in biomedical research, to find healthcare solutions that are realistic for and meaningful to more people, and to work toward research and medical breakthroughs that are more reflective of the diversity of the United States. Take the next step to make sure we are Invisible No Longer. Visit www.joinallofus.org to get started today!

 

Creating a #HepBFree Future in Arizona

Layal Rabat, Empowerment and Advocacy Manager at Asian Pacific Community in Action (APCA), provides an inside look into APCA’s hepatitis B efforts in Arizona.

Asian Pacific Community in Action (APCA) was formed in 2002 to meet the health-related needs of Asian Americans and Native Hawaiian and Pacific Islanders (AA & NHPI) residing in Arizona. Our vision is to inspire diverse communities to seek healthier futures. Our mission is to provide services, advocacy and education for diverse communities to help create a healthier and more empowered population seeking good health. In addition to hepatitis B testing, education, and referrals, APCA’s programs include Oral Health Advocacy, Advocacy Training, Policy Work, , Messaging/Storytelling , the Affordable Care Act, Medicaid, SNAP enrollment assistance, Civic Engagement, and Pop-up Health Fairs & Clinics.

Engagement Through Storytelling 

Over the years, we’ve prided ourselves on our creativity and thinking of ways to connect with communities through arts and innovative practices. This has led to the creation of  #HepBGirl and the HepBoo basketball fundraiser to support our hepatitis B efforts.

APCA’s most recent work has been centered around a mini-grant project generously funded by Hep B United – a national coalition to address and eliminate hepatitis B. The goals of the mini-grant were to help establish or contribute to hepatitis B prevention, education, linkage to care, and surveillance on a local level. APCA focused on education and empowerment by implementing the Hepatitis B Foundation’s (HBF)  #justB storytelling campaign into the community.

The project timeline was based on the recruitment of storytellers, conducting storytelling events, and conducting the analysis. The biggest lesson learned is that recruitment can take the most time out of all of the goals. We were aware of the stigma around talking about the infection and wanted to conduct our work in an ethical, sensitive way. To do this, we worked with a provider who helped by offering the opportunity for their patients to share their experiences. The patients could then choose whether to contact us or not. We also assured those that chose to speak that we would not publish any of the stories without their explicit approval and consent. To respect participant time and efforts and reduce the labor required of them for the event, APCA took great care to do as many of the preparations as possible, simplify the questions being asked, and conduct the events in a manner that respected their emotional labor and centered their explicit consent.

Hepatitis B In Arizona

Centered upon vulnerable populations such as older Asian American and Pacific Islander (AAPI) adults who were born before certain vaccine policies, APCA’s hepatitis B work includes addressing policy issues, access to care, and direct services. Direct services around hepatitis B included screenings, vaccinations, and referrals to care and treatment. In the past, APCA tested 2,869 people and found that 6.7% had active hepatitis B infections. An additional 31.2% were not vaccinated.                                                                                     

Arizona’s hepatitis B story mirrors that of the United States overall. From 2006 – 2015, an average of 979 chronic hepatitis B and 128 acute hepatitis B cases were reported each year in Arizona, though there has been a decrease in the number of acute hepatitis B cases identified in recent years. 
The rate of new reports of acute hepatitis B was highest among persons aged 40-44 years. Chronic hepatitis B rates were highest among those 30-34 years. 
The average annual rate of hepatitis B infection among Asians/ Pacific Islanders was much higher than other racial/ethnic groups (1,2). 

Looking Towards the Future

The mini-grant opportunity will help to launch #HepBFreeArizona – a campaign aimed at eradicating hepatitis B in the state. We hope to continue working with those that shared their stories to help build our future hepatitis B program and get it to a level where we can provide a space for patients living with hepatitis B to lead the way. The same barriers that prevent community members from accessing care also hinder their efforts to get involved in advocating for the policy changes that will alleviate those barriers. We are always learning how to balance community member autonomy and valuing their labor with respect to the time and effort they contribute and not taking more than we are giving.

Thank you to Layal Rabat for serving as our guest blogger this week! If you would like more information from Layal or the Asian Pacific Community in Action, please visit their website or contact them here.

 

Layal Rabat is a third culture kid who has spent years practicing the fine art of parachuting into projects as the need for her skills arises. She takes an intersectional approach to her work and does not shy away from any cause where injustice is present and her contribution is welcomed and necessary. Her experience lies in project management, traditional and digital communications using all mediums from her own voice to videos to writing to tweeting, assembling audience-specific information for delivery in an infinite amount of ways. An infinitely curious researcher and an obsessive collector and assembler of information, she is often seen playing a supportive role in the background and amplifying the voices of those directly affected by injustice in her community. Fluent in English & Arabic, intermediate in Spanish & knows a tiny bit of Armenian. Current issues are immigrant rights and public health. With a BS in Psychology & an MA in Social Justice & Human Rights, she is currently working as the Empowerment & Advocacy Manager at the Asian Pacific Community in Action, and volunteering her time as IT/Web & Social Media Coordinator at Phoenix Allies for Community Health. She also volunteers with the Restoration Project, Phoenix, and serves as a board member with Sonoran Prevention Works. In her spare time, she enjoys listening to music (& karaoke), reading, writing, photography, and traveling.

 

References

  1. 2016, Viral Hepatitis Epidemiologic Profile for Arizona
  2. 2016, Arizona Department of Health Services

 

One in Three People Worldwide Has Had Hepatitis B, So Why Do We Feel So Alone?

Volunteers from the Rann India Foundation teach villagers about hepatitis B testing and prevention in India.
Volunteers from the Rann India Foundation teach villagers about hepatitis B testing and prevention in India.

By Christine Kukka

Hepatitis B is the global pandemic no one talks about, yet one in three people worldwide has been infected. In 2013, hepatitis B and C together was the seventh-leading cause of death worldwide, with hepatitis B causing 780,000 deaths annually.

Today, 257 million people have chronic hepatitis B. Despite the availability of an effective vaccine, the number of people living with hepatitis B virus is projected to remain at the current, unacceptably high level for decades and cause 20 million deaths through 2030.

How can this happen? Viral hepatitis infection and death rates far outstrip that of ebola and zika. In fact, you have to combine the death toll from HIV and tuberculosis to find human suffering on par with what viral hepatitis causes around the world each year. Continue reading "One in Three People Worldwide Has Had Hepatitis B, So Why Do We Feel So Alone?"

Twitter Chat: Partner Highlights From Hepatitis Awareness Month

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Join Hep B United, the National Viral Hepatitis Roundtable, CDC’s Division of Viral Hepatitis, and the Hepatitis B Foundation for a Twitter #HepChat Wednesday, June 15 at 2 p.m. EDT. The chat will highlight Hepatitis Awareness Month outreach events and allow hepatitis B and C partner organizations to share their successes, challenges, and lessons learned from their efforts.

Continue reading "Twitter Chat: Partner Highlights From Hepatitis Awareness Month"

Is a Cure for Hepatitis B Coming? Experts Say Yes

How far are we from finding a cure for hepatitis B? We are close, said Timothy Block, PhD, president and co-founder of the Hepatitis B Foundation and its research arm, the Baruch S. Blumberg Institute. He points out that hepatitis C, once thought to be incurable, is today cured with new combination treatments.

Image courtesy of suphakit73 at FreeDigitalPhotos.net.
Image courtesy of suphakit73 at FreeDigitalPhotos.net.

Experts believe a cure for hepatitis B will also soon be developed. And the need for a cure has never been greater, with more than 240 million people worldwide living with chronic hepatitis B, causing 1 million deaths per year from related liver failure and liver cancer.

“Treatments are available,” explained Block, “but we have become a little too comfortable with the medications that are currently approved for use.” While these drugs are effective, interferon has many side effects and daily antivirals require lifelong use. These drugs work in only half of the infected population and reduce death rates by only about 40 to 70 percent.

What will a cure look like?

The available antivirals are similar and combining them offers no advantage. They have limited effectiveness against cccDNA, the seemingly indestructible “mini-chromosome” of the hepatitis B virus that continues to produce virus particles in infected liver cells, even in people being treated. A cure, therefore, would have to destroy or silence cccDNA and provide long-term immunity. Because one-drug treatments can lead to drug resistance, a cure would almost certainly involve combination therapy, similar to hepatitis C. Continue reading "Is a Cure for Hepatitis B Coming? Experts Say Yes"

Celebrate Mothers’ Day with High-Quality Healthcare First, Sentimentality Second

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net.
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net.

By Christine Kukka

In 1914, the United States designated the second Sunday in May as “Mothers’ Day.” Its founder, Anna Jarvis, hoped the holiday would focus on her own mother’s work promoting peace and public health. Years later, Jarvis protested loudly when the holiday became better known for sentimentality and greeting card sales.

Our nation often loses sight of a holiday’s original intent, but this Mother’s Day we can bring back the goal of preserving public health, especially where it concerns mothers and infectious diseases.

Decades ago, researchers developed one of the most extraordinary life-saving vaccines–hepatitis B immunization. It saves lives in two ways: It protects children and adults from infection and it breaks the vicious cycle of mother-to-child infection. A baby born to a hepatitis B-infected almost always becomes infected. The vaccine, administered within hours of birth, breaks that cycle.

When the vaccine debuted in the late 1970s and early 1980s, most people with chronic hepatitis B had been infected at birth. When newborns and children are infected, their immune systems don’t recognize or attack the virus and the infection can continue indefinitely.

To stop this infection cycle, today all pregnant women are screened for hepatitis B. Babies born to infected women are immediately vaccinated and treated with HBIG (hepatitis B antibodies). This public health initiative has been extremely successful in dramatically reducing hepatitis B. However, the campaign’s focus has been primarily on newborns and the hepatitis B-infected mothers were often forgotten. Though hepatitis B infections had been identified, the infected mothers were often lost to follow-up, and this neglect continues today. Continue reading "Celebrate Mothers’ Day with High-Quality Healthcare First, Sentimentality Second"

“Hepatitis on the Hill” Advocates Fight for Hepatitis Prevention, And So Can You

Hepatitis on the Hill advocates, March 2016.
Hepatitis on the Hill advocates, March 2016.

On Tuesday, March 8, more than 120 advocates from across the U.S. fanned out on Capitol Hill to talk to their representatives about the importance of funding the Viral Hepatitis Division of the U.S. Centers for Disease Control and Prevention (CDC). Dozens of people laid their hearts on the line and told their stories about how they, their families, and friends have been touched by hepatitis.

In meetings with Congressional staff, and in some cases their senators, they shared stories about family members who discovered they had hepatitis B only when they were diagnosed with late-stage, inoperable liver cancer. Others talked about how lucky they were to have been immunized at birth, considering their mothers were infected. Courageous advocates described losing loved ones to hepatitis B and C spread through the heroin epidemic, and recalled indifferent healthcare workers who saw only addicts instead of human beings who had  lost their battle with both addiction and hepatitis.

Our goal was to get our representatives to allocate more funding for CDC’s hepatitis division, which is sorely needed. It’s CDC’s job to investigate disease outbreaks and educate the public and healthcare providers about infectious disease. For example, CDC publishes a variety of reports and promotional materials to educate people how to protect themselves against hepatitis B and C. The agency also funds a “hepatitis coordinator” in nearly every state whose job it is to help prevent hepatitis, investigate outbreaks, and collect data—a Herculean task for just one person. Continue reading "“Hepatitis on the Hill” Advocates Fight for Hepatitis Prevention, And So Can You"

Make a Vine Video with #HepBUnite for the 2016 Hepatitis B Awareness Campaign!

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How do you unite for hepatitis B?      VINE TO WIN!

 

Join Hep B United for a national hepatitis B awareness campaign. Create an action-oriented awareness message about hepatitis B through a six-second Vine ​video! Hep B United will use selected video entries in its social media efforts in May 2016 to help promote Hepatitis Awareness Month. Your video could be included in its national awareness campaign!

Eligibility: ​Anyone and everyone may participate! You do not have to be a member of Hep B United or any organization.

What to Do: ​Use Vine to create a six-second ​video (click for example) focusing on the 2016 theme “#HepBUnite: How you unite for hepatitis B.” You can create your video alone, or with a group. Your message should focus on how you are united around hepatitis B. You could highlight hepatitis B prevention activities that you participate in, or feature a key fact about hepatitis B in your video. Although not required, Hep B United encourages you to use the materials available from the Know Hepatitis B campaign!

How to Enter:

  1. Between April 11 and April 29, post your video to either Vine, Facebook or Twitter. Be sure to include the hashtag “​ #hepbunite”​ and tag @HepBUnited.
  2. Submit your video link with your name and contact information by e-mail to connect@hepbunited.org​.

Contest Entry Requirements

  1. Each video must be original.
  2. Each video must include the hashtag ​“#hepbunite” and tag @HepBUnited on Twitterand/or Facebook in order to track the videos.
  3. Videos should not include any material that would require the consent of any third party or violate any copyright, privacy right, or any other right of a third party. If used, Know Hepatitis B campaign materials should be used in their entirety and retain the CDC and HBU logos.
  4. Submissions including offensive language, imagery or themes will be excluded from the competition.

Be Creative and Have Fun!

  • Be creative to get across your hepatitis B awareness message!
  • Need inspiration? Looking for video ideas? Consider “linking arms,” “flexing your muscles to combat hep B,” “running in a group,” “group high five,” or “shout out with office staff/community groups!”
  • Check out the ​Hep B United or ​Know Hepatitis B Campaign website for background statistics and resources you can use!

Selection of Winners and Prizes

  • Selected videos will be included in the 2016 May Hepatitis Awareness Month Hep B United social media campaign.
  • Selected videos will be included in the creation of additional materials promoting hepatitis B awareness around the U.S.
  • Three finalists will be chosen by a panel of judges as best exemplifying the 2016 #HepBUnite theme.
  • A Grand Prize winner will be chosen from the three finalists and will win $100. The two remaining finalists will each win $50.
  • The finalists will be notified by email, and the grand prize winning video will be revealed to the public in mid-May through social media and press releases.

Selected entries will be included in the Hep B United social media campaign! Two finalists will win $50 each!
One Grand Prize winner will win $100!

Submission Period: Post and submit your Vines between
April 11 and April 29, 2016, (contest closes at 11:59 p.m. Eastern Time on April 29)

Questions? Please contact Pavitri Dwivedi at ​Pavitri.Dwivedi@hepb.org

The Ugly Intersection of Prejudice, Immigration, and Hepatitis B

By Christine Kukka

 Image courtesy of xedos4 at FreeDigitalPhotos.net.
Image courtesy of xedos4 at FreeDigitalPhotos.net.

A few weeks ago, an ill-informed New England governor proclaimed illegal immigrants were bringing in infectious diseases, including hepatitis, HIV, and tuberculosis. Recently, similar anti-immigration, fear-mongering from presidential candidates has filled the airways.

For hundreds of years, disease has been used as reasons to stop immigration to the United States. During the early 1800s, officials claimed the Irish brought cholera into the country. The Italians were believed to carry polio and tuberculosis was called the Jewish disease. In 1900, the Asian-American community in San Francisco was believed to be infected with bubonic plague that posed a threat to public health. Residents were subjected to mandatory injections with an experimental drug until a court order halted the local public health campaign.

Throughout the 19th and 20th century, “politics was saturated with attacks on immigrants as diseased intruders to the body politic,” wrote American University history professor Alan M. Kraut in Foreign Bodies: The Perennial Negotiation over Health and Culture in a Nation of Immigrants. This dialogue led to revision of the 1882 Immigration Act to exclude, “persons suffering from a loathsome or a dangerous contagious disease” from entry into the United States. Continue reading "The Ugly Intersection of Prejudice, Immigration, and Hepatitis B"