Hep B Blog

Category Archives: Hepatitis B Diagnosis & Monitoring

Hep B Community – A New Global Online Support Group

The Hepatitis B Foundation is excited to announce our support of a new global online community support group called Hep B Community. Thomas Tu, PhD, a researcher at Westmead Institute for Medical Research founded this online community to reach a global audience who might need support if they are affected by hepatitis B. 

Dr Tu stated that “While hepatitis B remains incurable, it can be managed and treated. But, people with hepatitis B face social stigma and discrimination, discouraging them from seeking medical help that could prevent progression of their illness to serious disease like liver cancer,”. He further explained that this online forum is important for people affected by hepatitis B to feel supported and empowered to take control of their diagnosis. 

Westmead Hospital’s Storr Liver Centre and the Hepatitis B Foundation have provided start-up funding and help coordinate the forum with support from the World Hepatitis Alliance. The site is peer-led, volunteer-run and is free to join. Already, more than 200 members from all over the world have joined.

Chari Cohen, DrPH, MPH, senior vice president, Hepatitis B Foundation, believes, “The new forum is critically important because people can anonymously seek advice about how to live with hepatitis B, and what they can do to protect their liver and long-term health.” If you are considering joining Hep B Community – do not hesitate! In fact, research has shown that people participating in hepatitis support groups can increase their knowledge, coping, and compliance.1 

How Does it Work?

The online forum has multiple sections like learning resources, media about hepatitis B, and general discussion. 

You can post completely anonymously and a hepatitis B expert or a person living with hepatitis B will respond to your questions. You can also choose your own username and the platform will never show your email, ensuring privacy and confidentiality. 

The hepatitis B experts responding to your questions go through a verification process to identify that they are trustworthy sources of information. These providers are clinicians, nurses, scientists or patient experts,  there to provide reliable answers and give information about health guidelines and treatment options. The forum also has researchers and scientists giving explanations and updates about technical information related to hepatitis B virus and treatment. 

The site is completely free! You can access the site even without making an account if you want to browse. However, in order to ask questions or post content, you will need to create an account. Empower yourself and join the other 200 users and immerse yourself in the supportive hepatitis B community!

Reference

  1. Jessop, Amy B. PhD, MPH; Cohen, Chari MPH; Burke, Monika M. RN; Conti, Molli BS; Black, Martin MD Hepatitis Support Groups, Gastroenterology Nursing: July 2004 – Volume 27 – Issue 4 – p 163-169 

Author: Evangeline Wang

Contact Information: info@hepb.org

How to Find a Hepatitis B Provider

How to Find a Hepatitis B Provider

If you have chronic hepatitis B or are newly diagnosed, it’s important to see a medical provider who has experience managing and treating hepatitis B.

Having a medical provider with hepatitis B expertise on your team not only safeguards your health but also lessens the stress of having a chronic liver disease. “My specialist gave me all the possible scenarios, but most importantly, he gave me my life back,” one hepatitis B patient recalled.

When first diagnosed, it’s often a primary health provider (PCP) or for children a pediatrician who orders diagnostic tests for hepatitis B. Doctors may run additional blood tests and/or immediately refer you to a liver specialist. If your PCP has experience managing and treating hepatitis B, you may decide to continue your hepatitis B care with that provider. Or, they may recommend a specialist who accepts your insurance or practices in the same healthcare system. But,  you may have to do some research to find the best specialist to treat your hepatitis B.

There are two types of specialists who treat liver diseases:

  • A gastroenterologist is an internist who has trained in digestive disorders including the liver, but how much liver expertise a gastroenterologist (GI doctor) has varies based on their training. It’s important to find out if they specialize in liver diseases and if they have experience with hepatitis B.
  • A hepatologist is a physician who specializes in the liver. This doctor has the most expertise and should be up-to-date about new treatments and clinical trials. But not all hepatologists have treated hepatitis B. Many will have treated hepatitis C, but not hepatitis B, so you need to ask.

Tips for finding a specialist:

  • Are they in the Hepatitis B Foundation directory? The Foundation has a Physician Directory of medical providers who treat hepatitis B around the world. These doctors have voluntarily signed up to be included in the database. It is not an exhaustive list, there may be hepatitis B specialists in your area who have not yet joined the directory.
  • Call the practice ahead of time and ask questions. How many hepatitis B patients have they treated? Do they participate in any clinical trials?  Are they aware of current monitoring and treatment guidelines for hepatitis B?
  • What’s the doctor’s reputation? Does anyone in your community see a liver specialist for viral hepatitis? Whom do they recommend?
  • Will you actually see the specialist or an assistant? Do you see a specialist only if there is a need for treatment? If you go to a teaching hospital, do you see the doctor or an intern, fellow or resident?

You are entering into a long-term relationship with someone who may care for you for many years. You need their expertise, but you also need to feel comfortable working with them. Do they listen when you speak and make eye contact? Trust and rapport are very critical.

“It’s really important that they don’t judge me,” one hepatitis B patient explained.  Another patient said that finding a doctor who spoke his language, or had an assistant who was fluent in his language, helped immensely.

Once you identify a specialist, here are some questions to ask:

  • Is the specialist accepting new patients? How long do you have to wait to get an appointment?
  • What hospital or lab do they use, and are they convenient for you? It’s important for you to always use the same lab so you have consistent results that allow apples-to-apples comparisons.
  • Will the doctor call you with the results or will a nurse or other assistants communicate with you?
  • What would you like your care plan to be? Will you go for blood tests and then see the specialist? Typically, hepatitis B patients get blood tests once or twice a year to monitor their liver, unless they are undergoing treatment.

How to design a long-distance care plan if the specialist is far away:  Sometimes, the best hepatitis B specialist is a few hours drive from where you live, but distance doesn’t have to be a deal-breaker. Many people see a specialist for a first visit, and afterwards, simply have their PCPs or local labs email lab results to the specialist. For this remote healthcare relationship to work, your PCP needs to be willing to partner with the specialist. Also, your specialist needs to be open to telephone or video consultations with you as needed.

Technology matters. Sharing medical records and lab tests electronically make a remote relationship work smoothly. If there are firewalls between practices, find out how to ensure your PCP and specialist share your medical records. Be prepared, you may have to be the conduit if the two healthcare systems don’t talk to each other.

Insurance and cost: Ideally, the hepatitis B specialist closest to you accepts your insurance or is in your provider network. That doesn’t always happen so finding out the charges in advance is important.

  • Will the specialist bill your insurance or will you need to pay the fee upfront and manage the insurance reimbursement yourself?
  • How much do you have to pay out-of-pocket if the specialist is outside your network, or if you are not insured? Some specialists charge a lower fee to uninsured patients. You may be able to have an annual consultation with a specialist and bring your lab results.

One hepatitis B patient reported he was not entirely happy with the specialist his PCP referred him to. “At the time, I had great insurance so all the tests he ordered weren’t a lot of money out-of-pocket,” he said. “But then I changed jobs and I couldn’t afford all of his tests, and he wanted me to go on treatment though my lab reports didn’t justify it.

“I went looking for a new one and found one in the Hepatitis B Foundation’s website,” he said. “I had to drive farther to see him, but his knowledge and patience were very comforting and he spoke my primary language. He really helped me regain confidence in life.”

Prepare for your visit: Before you see your hepatitis B medical provider, put together a list of questions (see sample questions) and have your lab reports available — either bring hard copies or call ahead of time to make sure the doctor has access to your latest labs and medical records.

After you meet with your specialist, take some time to reflect. Are you happy with the doctor? Did he or she communicate well? Are you clear about what you need to do in the weeks and months ahead to take charge of your health? If the answer is yes, congratulations, you have assembled a good healthcare team.

Contact Information: info@hepb.org

CHIPO Is Looking for New Members!

By Beatrice Zovich

 

 

 

 

 

Are you a member of the African diaspora in the United States? Do you work for an organization that serves these communities? We would love for you to join CHIPO – the Coalition Against Hepatitis for People of African Origin! CHIPO is a national community coalition, co-founded and led by the Hepatitis B Foundation. Our members include a variety of individuals and organizations from all over the country, who are interested in and focused on addressing the high rates of hepatitis B among African communities in the US., which are disproportionately affected by hepatitis B and liver cancer. In some parts of the country, rates of chronic hepatitis B infection in African communities are estimated to range between 5 and 15% of people. 

The purpose of CHIPO is to provide a space for an open exchange of ideas, best practices, and  information about how to dismantle some of the many barriers that stand in the way of preventing, diagnosing, and treating chronic hepatitis B infection, and preventing liver cancer, in African immigrant communities. These barriers include a lack of disease awareness, high rates of stigma, limited access to healthcare and services, and the silent nature of the disease, which often does not present any symptoms until significant liver damage has occurred – a process which could take years or even decades. As a result, most African community members who have hepatitis B DO NOT KNOW that they are infected. This puts them at much greater risk for premature death from cirrhosis or liver cancer.

CHIPO, meaning “gift” in the Shona language, aims to disseminate accurate information about hepatitis B transmission, prevention, and treatment among community members, healthcare providers, and organizational leaders, and to improve the national capacity to raise hepatitis B awareness, testing, vaccination, and linkage to care among highly affected African communities. CHIPO also works to ensure that African immigrant communities are represented in HBV discussions and programs regionally and nationally. This is achieved through advocacy and the development of national and local partnerships. We currently have over 35 coalition partners around the U.S., dedicated to addressing viral hepatitis in African communities.

The activities of CHIPO are many and diverse. They include bimonthly virtual meetings, which often center around a presentation by a coalition member about measures or interventions that have been undertaken or research that has been done to achieve one of CHIPO’s objectives – namely improving awareness about and access to hepatitis B information, screening, vaccination, and linkage to follow-up care. Other activities include educational community events and presentations; supporting the design and implementation of initiatives to help accomplish CHIPO’s goals, such as the CDC Know Hepatitis B campaign (discussed below) and a recent grant from Bristol Myers Squibb to raise awareness about liver cancer and understanding about the link between hepatitis B and liver cancer in African immigrant communities; and promoting the work of coalition members locally and nationwide. 

An example of a project for which CHIPO provided great support and guidance was the production of the first nationally available hepatitis B educational resources, specifically for African populations. Created in collaboration with the Centers for Disease Control and Prevention (CDC), these materials are part of a train-the-trainer-based model, and include a suite of materials, including a downloadable presentation on hepatitis B for community health workers, a printable flip chart for direct community education, and supporting fact sheets and resources. The presentation and flip chart have also been translated into Amharic, Arabic, French, and Swahili. 

To read more about CHIPO, including previous blog posts, articles, and meeting minutes, and to access a full list of our members and the work they are doing around the country, visit our website

Does this work sound interesting to you? Would you like to work with us to achieve lower rates of hepatitis B and liver cancer in African immigrant communities through increasing awareness, screening, vaccination, and linkage to care? Join us! Anyone is welcome to join CHIPO – contact the coordinator to get involved. We hope to see you on our next call!

Recap of NAIRHHA Day 2020 Celebration

 

 

 

 

By Beatrice Zovich

On Monday September 21st, a virtual celebration was held in honor of the sixth anniversary of National African Immigrant and Refugee HIV and Hepatitis Awareness (NAIRHHA) Day. This day, which itself is commemorated on September 9th, was created to build awareness and dismantle stigma around HIV and viral hepatitis in African immigrant and refugee communities. It takes place in September because this is the month that has been designated as National African Immigrant Month (NAIM) in the United States to celebrate the diverse and remarkable contributions African immigrants have made to enrich the United States, in spheres ranging from sports to writing to politics.

The virtual celebration that occurred last Monday included a discussion of the history of NAIRHHA Day and how it came to exist in its present form, a conversation with a hepatitis B advocate who is living with the disease, discourse about the importance of NAIRHHA Day on the national level and implications for making it a federally recognized day, and trivia questions about HIV and hepatitis B.

History of NAIRHHA Day: The Journey from 2014 to Present

Moderator: Chioma Nnaji, MPH, MEd, Program Director, Multicultural AIDS Coalition
Panelists: Augustus Woyah, Program Officer for Minority AIDS Initiative, Maryland Department of Health
Amanda Lugg, Director of Advocacy and LGBTQ Programming, African Services Committee

The idea for NAIRHHA Day was first conceived in 2006 at a convening of the Ethiopian Community Development Corporation in Washington, DC, at a session sponsored by Office of Minority Health about HIV in African immigrant communities. Conferences started to occur, primarily in the Northeast, although there was also interest in Atlanta and Seattle. It seemed that an opportunity had finally become available for advocates, researchers, and providers to all come together and focus on data collection, community mobilization, and policy work around HIV and viral hepatitis in African immigrant communities. The African National HIV/AIDS Alliance was established in 2010 and awareness days started in 2012 (Augustus played a large role in this). In 2014, Chioma Nnaji became connected to Sylvie Bello, the Executive Director of the Cameroonian Association in Washington, DC, and they, along with Amanda and Augustus, worked to get NAIRHHA Day off the ground. Chioma has largely spearheaded efforts to have NAIRHHA Day recognized nationally.

In terms of some of the challenges that have and continue to exist around NAIRHHA Day, obtaining community leadership and organizational buy-in, as well as national attention, are at the forefront. Social media and other digital platforms have been widely used in order to amplify the cause and try to obtain federal recognition. Additionally, maintaining relationships with government agencies has been quite difficult and has become a clash of visions of sorts. There is a strong belief that NAIRHHA Day should be a community-driven effort, but government agencies often have their own priorities, which can be distinct from those of the community and grassroots organizers. This is not to discount the government and organizational partners that are still involved, however, including NASTAD, the Hepatitis B Foundation, CHIPO, CHIPO-NYC, and Africans for Improved Access at the Multicultural AIDS Coalition. Another challenge has been reinforcing the distinction between African immigrant and African American communities and not treating the Black community as a monolith. Drawing this distinction in both data and policy remains difficult, thus often rendering African immigrant communities invisible.

When pondering what areas could use improvement going forward, a number of different items were considered. These included incorporating COVID-19 into the conversation, along with viral hepatitis and HIV; addressing social and environmental determinants of health that lead to the over-prevalence of both infectious and non-communicable diseases in minority, and particularly African immigrant communities; adhering to the primary goal of community mobilization and including advocates and researchers to influence policy that provides linguistically and culturally appropriate services that address the most pressing issue of stigma; securing national attention; and obtaining resources. It is critical to remember that advocacy never ends, the need to magnify work and amplify voices is always present, there is no room for complacency, and there exists intersectionality in all issues (social and health justice are all-encompassing).

#justB Storyteller Interactive Discussion

Moderator: Farma Pene, Community Projects Coordinator in Viral Hepatitis Program, New York City Department of Health & Mental Hygiene
#justB Storyteller: Bright Ansah

In this session, Bright spoke about his experience with living with hepatitis B, including his diagnosis, treatment, and communication with his family. He spoke about being able to put a face to hepatitis B, which has helped many people and also allowed him to build strong relationships with a broader community. Bright found out about his status in 2014 and initially felt very lost. The first couple of years were a big struggle, as he did not want to worry his family and it took a while for him to come to peace with his diagnosis. This peace eventually came from a lot of extensive research, after which he found out that hepatitis B is not a death sentence and can be managed very well. He then started to think about what he could do to prevent someone else from becoming “a statistic.”

When asked what message he would share with newly diagnosed people, Bright stated that stress and anxiety are normal, but you are not alone. Every day, people find out they are infected. Bright has given his contact information to many different people and he emphasized the incredible importance of having a support system in place. When asked about how he overcame stigma and barriers, Bright replied that the biggest barrier is the mental hurdle. It took him about two years to not feel overwhelmed. Bright does still struggle with feeling rejected from clinical trials and finds this very frustrating – he still feels like he is being punished for having chronic hepatitis B.

The best advice that Bright can offer is to always be your own advocate and do your own research. If the first doctor or liver specialist that you find does not take you seriously or you feel that they are not doing enough for you, you do not need to stay with them and you can absolutely find another doctor. Bright went through this process himself and eventually found a doctor he likes at Johns Hopkins, through a friend of his. This can be a challenge with language barriers, but there are organizations that can help and there is a Specialist Directory tool on the Hepatitis B Foundation website, a resource that Bright stated he found very helpful, along with the website of the National Institutes of Health (NIH). Farma reiterated that the HBF website is a great place to visit to understand lab results in plain language, and offers a good collection of resources for family and community members of people living with hepatitis B. Bright finds that the most important questions to ask are: What exactly is your status and viral load? What should reasonable expectations for your life and health be? Is treatment appropriate and if so, which one? It is crucial to establish mutual respect with your doctor, and to iterate what expectations you have for your doctor as well. The most important messages are: Reach out. Ask questions. Stand up for yourself. You are not alone.

The Important Role that NAIRHHA Day Plays from a National and Policy Prospective

Moderator: Chioma Nnaji, MPH, MEd, Program Director, Multicultural AIDS Coalition
Panelists: Boatemaa Ntiri-Reid, JD, MPH, Hepatitis Director, NASTAD
Jennease Hyatt, Community Liaison for Boston/New England, GILEAD

The final conversation focused on why NAIRHHA Day should become a nationally recognized holiday. VIral hepatitis is the seventh leading cause of death globally. Nineteen million African adults are living with hep C, and 5-8% are living with hep B. Hep B and HIV need to be considered part of the health portfolio of African immigrants, with care taken that this does not compound stigma. NAIRHHA Day is really an opportunity to focus on this community specifically. You get things done by doing them yourselves and we are who we’ve been waiting for.

There is a strong need for a multi-faceted approach to this work and for local, state, and national partnerships. African immigrants need to be at the forefront of the HIV/AIDS conversation. In Massachusetts specifically, over half of new HIV infections are in immigrant communities: These communities need to be leading the conversation. In terms of the role that government agencies play in NAIRHHA day, this needs to be more than a supportive role. We need to talk about novel approaches. We know that there are healthcare disparities. We need to consider how to use funding to build capacity and engagement, and make sure this work moves forward. This should include counting in community members and small businesses and bringing people to the table who are not usually there. The community really wants to be engaged. Promoting testing and awareness at soccer games, for example, is a great idea. We need strong partnerships and leadership from the beginning and to determine different approaches and thus different outcomes. Community members are the experts and we need to treat them as such.

Across the country, there are jurisdictions that have a prevalence of 40,000 people living with hepatitis in a state and viral hepatitis staff have teams of 1-7. Local and state health departments have more of a role to play. CDC publishes a list of viral hepatitis coordinators by state. It would be great to close the gap with them and discuss more about what they are doing generally and how to get them more involved in NAIRHHA Day specifically. In thinking about a vision for NAIRHHA Day next year, thoughts included that everyone who serves African immigrant communities (including health centers and multi-service organizations) needs to see themselves as part of the solution. Additionally, federal representation should be part of NAIRHHA Day next year.

Trivia and Conclusion

The event concluded with trivia questions about HIV and hepatitis B prevention, testing, and treatment. Amazing music was provided by DJ WhySham and Laura O (@LauraO_TV) served as an excellent moderator. Thanks to everyone who participated and we look forward to another wonderful event next year!

New Resource: Guide To Hepatitis B Management for Primary Care Providers

The Hepatitis B Primary Care Workgroup has released a new resource that helps primary care providers prevent, diagnose, and manage hepatitis B! Hepatitis B experts from diverse health disciplines have contributed to making this comprehensive guide, which is available to download for free on the University of Washington’s website. 

Hepatitis B is a complex condition that typically is managed by a liver specialist (hepatologist). However, many people in the U.S. and other parts of the world do not have access to a hepatologist. Many primary care doctors do not feel comfortable or know how to properly care for someone living with hepatitis B. This leaves a large gap in managing and treating the infection. Hepatitis B Management: Guidance for the Primary Care Provider helps to close this gap by giving all providers the tools to understand the virus and how to manage it.

Dr. Amy Tang, Director of Immigrant Health at NorthEast Medical Services and one of the hepatitis B experts involved in creating the guide, answered a few questions about why this resource is so important: 

 

Why was a guide on hepatitis B management needed? What gaps will this help fill? 

 

Primary care providers are recommended to screen and vaccinate for hepatitis B in at-risk individuals.  However, when an individual tests positive for hepatitis B, they are typically referred to a specialist for care.  Because the majority of persons with chronic hepatitis B in the United States are foreign-born with limited English proficiency and often face both linguistic and access barriers to specialists, referral and retention in specialty care for chronic hepatitis B can often lead to lost follow-up.  Chronic hepatitis B management involves visits at least every 6 months for lab monitoring as well as routine ultrasounds for liver cancer surveillance for patients who fulfill high-risk criteria for liver cancer including Asian and African men over 40 years of age and Asian women over 50 years of age.  Because primary care is already performing routine blood tests and cancer screening for a variety of other chronic diseases such as diabetes, hypertension, and breast, cervical, and colon cancers respectively, we believe that empowering primary care providers with a simple to use hepatitis B algorithm would promote increased access and retention in care for persons with chronic hepatitis B.

 

How does this tool work towards the elimination of hepatitis B? 

 

The National Academies of Science, Engineering, and Medicine report for viral hepatitis elimination by 2030 recommends that primary care providers work closely with hepatitis B specialists and their organizations, e.g., the American Association for the Study of Liver Diseases (AASLD) and the Infectious Disease Society of America (IDSA), to increase primary care capacity for HBV screening, vaccination, monitoring, and treatment. Thus the National Taskforce on Hepatitis B in collaboration with ECHO Institute and San Francisco Hep B Free—Bay Area hosted a meeting at the 2018 AASLD Annual Liver Meeting in San Francisco to convene a workgroup of hepatitis B specialists in hepatology, infectious disease, public health, primary care, and pharmacy, as well as representatives from American College of Physicians (ACP) and American Academy of Family Physicians (AAFP) to discuss how we can increase primary care capacity for not only hepatitis B screening and vaccination, but also management and treatment.

Currently, the majority of hepatitis B care is managed by specialists.  AASLD puts forth guidelines and guidance for hepatitis B every couple of years, however, the guidelines can be lengthy, difficult to access, or intimidating for busy primary care providers to utilize. We polled over 100 primary care providers across the country through the National Association of Community Health Centers’ network of providers and found that primary care providers were interested in managing hepatitis B but felt like they did not have the tools and resources at their fingertips to do it manage it confidently.  They reported using web-based references like Up-to-Date for easily accessible guidance on conditions they were less familiar with. Thus, we wanted to create an easy to use document that would be easily accessible and free online. We teamed up with University of Washington’s Hepatitis B Online to host our Hepatitis B Guidance for Primary Care Providers as a means to widely disseminate our recommendations and work towards the elimination of hepatitis B in the United States and globally.

 

How and when should primary care providers use this? 

 

Primary care providers should use this hepatitis B guidance document when they decide to screen a patient for hepatitis B as the document guides them through how to properly screen for hepatitis B in asymptomatic individuals, how to interpret their lab results and provide appropriate counseling, and for patients who screen positive for hepatitis B, how to perform their initial evaluation, monitoring, treatment, and liver cancer surveillance.  We also have a dedicated section on perinatal management of women screened for hepatitis B that clearly illustrates the simple steps that can be taken by the primary care provider to prevent transmission of hepatitis B from mother to child. 

The guide includes detailed information on the following topics:

  • Chronic Hepatitis B Testing and Management Algorithm
  • Interpretation of hepatitis B test results
  • Tests to run on a hepatitis B surface antigen positive (HBsAg +) individual and how to counsel them
  • Monitoring and management of the HBsAg + individual 
  • Managing pregnant women who are HBsAg + 
  • Monitoring for liver cancer

The guide is part of Hepatitis B Online – a free suite of materials for providers that supplies information on all topics related to hepatitis B such as when a person should begin treatment and liver cancer screenings. The website also includes prescribing information for approved hepatitis B treatments, and clinical calculators to aid in interpreting predictors of liver damage such as the AST to Platelet Ratio Index (APRI) and fibrosis score. 

 To access and download the new tool, click here! 

New Resource: Guide To Hepatitis B Management for Primary Care Providers

The Hepatitis B Primary Care Workgroup has released a new resource that helps primary care providers prevent, diagnose, and manage hepatitis B! Hepatitis B experts from diverse health disciplines have contributed to making this comprehensive guide, which is available to download for free on the University of Washington’s website. 

Hepatitis B is a complex condition that typically is managed by a liver specialist (hepatologist). However, many people in the U.S. and other parts of the world do not have access to a hepatologist. Many primary care doctors do not feel comfor table or know how to properly care for someone living with hepatitis B. This leaves a large gap in managing and treating the infection. Hepatitis B Management: Guidance for the Primary Care Provider helps to close this gap by giving all providers the tools to understand the virus and how to manage it.

Dr. Amy Tang, Director of Immigrant Health at NorthEast Medical Services and one of the hepatitis B experts involved in creating the guide, answered a few questions about why this resource is so important: 

Why was a guide on hepatitis B management needed? What gaps will this help fill? 

Primary care providers are recommended to screen and vaccinate for hepatitis B in at-risk individuals.  However, when an individual tests positive for hepatitis B, they are typically referred to a specialist for care.  Because the majority of persons with chronic hepatitis B in the United States are foreign-born with limited English proficiency and often face both linguistic and access barriers to specialists, referral and retention in specialty care for chronic hepatitis B can often lead to lost follow-up.  Chronic hepatitis B management involves visits at least every 6 months for lab monitoring as well as routine ultrasounds for liver cancer surveillance for patients who fulfill high-risk criteria for liver cancer including Asian and African men over 40 years of age and Asian women over 50 years of age.  Because primary care is already performing routine blood tests and cancer screening for a variety of other chronic diseases such as diabetes, hypertension, and breast, cervical, and colon cancers respectively, we believe that empowering primary care providers with a simple to use hepatitis B algorithm would promote increased access and retention in care for persons with chronic hepatitis B.

How does this tool work towards the elimination of hepatitis B? 

The National Academies of Science, Engineering, and Medicine report for viral hepatitis elimination by 2030 recommends that primary care providers work closely with hepatitis B specialists and their organizations, e.g., the American Association for the Study of Liver Diseases (AASLD) and the Infectious Disease Society of America (IDSA), to increase primary care capacity for HBV screening, vaccination, monitoring, and treatment. Thus the National Taskforce on Hepatitis B in collaboration with ECHO Institute and San Francisco Hep B FreeBay Area hosted a meeting at the 2018 AASLD Annual Liver Meeting in San Francisco to convene a workgroup of hepatitis B specialists in hepatology, infectious disease, public health, primary care, and pharmacy, as well as representatives from American College of Physicians (ACP) and American Academy of Family Physicians (AAFP) to discuss how we can increase primary care capacity for not only hepatitis B screening and vaccination, but also management and treatment.

Currently, the majority of hepatitis B care is managed by specialists.  AASLD puts forth guidelines and guidance for hepatitis B every couple of years, however the guidelines can be lengthy, difficult to access, or intimidating for busy primary care providers to utilize. We polled over 100 primary care providers across the country through the National Association of Community Health Centers’ network of providers and found that primary care providers were interested in managing hepatitis B but felt like they did not have the tools and resources at their fingertips to do it manage it confidently.  They reported using web-based references like Up-to-Date for easily accessible guidance on conditions they were less familiar with. Thus, we wanted to create an easy to use document that would be easily accessible and free online. We teamed up with University of Washington’s Hepatitis B Online to host our Hepatitis B Guidance for Primary Care Providers as a means to widely disseminate our recommendations and work towards the elimination of hepatitis B in the United States and globally.

How and when should primary care providers use this? 

Primary care providers should use this hepatitis B guidance document when they decide to screen a patient for hepatitis B as the document guides them through how to properly screen for hepatitis B in asymptomatic individuals, how to interpret their lab results and provide appropriate counseling, and for patients who screen positive for hepatitis B, how to perform their initial evaluation, monitoring, treatment, and liver cancer surveillance.  We also have a dedicated section on perinatal management of women screened for hepatitis B that clearly illustrates the simple steps that can be taken by the primary care provider to prevent transmission of hepatitis B from mother to child. 

The guide includes detailed information on the following topics: 

  • Chronic Hepatitis B Testing and Management Algorithm
  • Interpretation of hepatitis B test results
  • Tests to run on a hepatitis B surface antigen positive (HBsAg +) individual and how to counsel them
  • Monitoring and management of the HBsAg + individual 
  • Managing pregnant women who are HBsAg + 
  • Monitoring for liver cancer

The guide is part of Hepatitis B Online – a free suite of materials for providers that supplies information on all topics related to hepatitis B such as when a person should begin treatment and liver cancer screenings. The website also includes prescribing information for approved hepatitis B treatments, and clinical calculators to aid in interpreting predictors of liver damage such as the AST to Platelet Ratio Index (APRI) and fibrosis score. 

 To access and download the new tool, click here

Fighting the Doom and Gloom: Screening Saves Lives!

blood tubes

By Anu Hosangadi

Liver Cancer Connect’s “Fighting the Doom and Gloom” series is highlighting some of the advances in prevention, screening, and treatment that are helping to increase survival among people with liver cancer. Previously, we talked about how prevention works. Now we’ll explain how screening and surveillance save lives.
Continue reading "Fighting the Doom and Gloom: Screening Saves Lives!"

Journey to the Cure: What Does Liver Cancer Research Look Like? ft. Aejaz Sayeed, PhD

Welcome to “Journey to the Cure.” This is a web series that chronicles the progress at the Hepatitis B Foundation and Baruch S. Blumberg Institute towards finding the cure for hepatitis B.

In the fourth episode (part 2), Kristine Alarcon, MPH sits down with Aejaz Sayeed, PhD, Assistant Professor at the Baruch S. Blumberg Institute, to talk about his research in liver cancer. For any questions about hepatitis B, please email info@hepb.org.

Disclaimer: The information provided in this audio post is not intended to serve as medical advice of endorsement of any product. The Hepatitis B Foundation strongly recommends each person discuss this information and their questions with a qualified health care provider.

Edited by:
Kristine Alarcon, MPH

Special thanks:
Samantha Young

Music:
Modern – iMovie Library Collection

Script:

Welcome to “Journey to the Cure!” Every month, we’ll sit down with scientists from the Hepatitis B Foundationand the Baruch S. Blumberg Instituteto talk to you about hepatitis B and efforts to find a cure for hepatitis B. There’s still a long way to go, but we’re here to walk you through our journey.

Kristine Alarcon, MPH:
Can you tell me about your research?

Aejaz Sayeed, PhD:
That’s an interesting question. I’vespent a lot of time pursuing breast cancer and prostate cancer. I just started working on the liver cancer. There are millions of people who are pursuing cancer research, but the challenge is that we have done a lot of progress in some cancers, but some cancers, still, we do not have a handle on. For example, we have done a lot of progress in breast and prostate cancer. We have not done much in pancreatic and liver cancer. And, the five-year survival rates of breast and prostate and other cancers have drastically increased, but we have not done much of a progress in pancreatic or a specific form of brain cancer or pancreatic cancer or liver cancer. The problem, again, is that we’re not able to detect the disease at an early stage, and if we had a good set of biomarkers available, there’s a good opportunity, there’s a good chance that we should be able to control these diseases as well.

Kristine Alarcon, MPH:
What attracted you to studying liver cancer?

Aejaz Sayeed, PhD:
I’ve been working on breast cancer and prostate cancer, so in liver cancer, I want to use the tools and techniques, which I used in breast and prostate cancer. That’s why there’s that desire to use the similar strategies, which I used in breast and prostate cancer to discover and characterize markers. That’s why I’m still setting up collaborations with transplant surgeons because liver cancer is treated generally by either resecting the tumor or transplanting the liver. The liver is such an important organ that you cannot really take the liver away. You need the liver. Transplanting the liver is another strategy of treating these patients, so, yes, it is basically that desire that we have more biomarkers, and I can use the knowledge that I gained in breast and prostate to recapitulate the same kind of events, so that we can make a dent.

Kristine Alarcon, MPH:
Yeah; that’s so cool.

Aejaz Sayeed, PhD:
Thank you.

Kristine Alarcon, MPH:
Well, thank you for joining us on this episode of “Journey to the Cure.” Please join us next time for our next episode. Thank you for joining us!

Aejaz Sayeed, PhD:
Thank you!

Newly Diagnosed with Hepatitis B? How Did I Get this? Learning the HBV Transmission Basics

If you have just been diagnosed with hepatitis B virus (HBV) then you need to understand how HBV is transmitted. This is important whether you have an acute or chronic infection.  You must understand you are infectious and can transmit the virus to others.

How is hepatitis B transmitted? Hepatitis B is transmitted through direct contact with infected blood. This can happen through direct blood-to-blood contact, unprotected sex, unsterile needles, unsterile medical or dental equipment, and from a HBV infected mother to her baby at birth.  For kids, pediatric experts report that the fluid that oozes from cuts and open sores is also highly infectious, so keep those open cuts covered. HBV can also be transmitted inadvertently by the sharing of personal items such as razors, toothbrushes, nail clippers, body jewelry and other personal items that have small amounts of blood on them.

Hepatitis B is not transmitted casually by sneezing or coughing, shaking hands, hugging or sharing or preparing a meal.  In fact HBV is not contracted during most of life’s daily activities. You don’t need to keep cups and utensils separate. Hugging, or even kissing won’t cause infection unless there are bleeding gums or open sores during the exchange. It’s really all about trace amounts of infected blood, though the virus is in other bodily fluids in lower concentrations.  For example, it’s not about the saliva on the toothbrush that is a big concern, but rather the potential for trace amounts of blood that could be exchanged with a shared toothbrush.

How did I get this? If you have been diagnosed with hepatitis B virus you are likely racking your brain trying to figure out how you could have gotten HBV.  Some can immediately track their likely exposure to a recent event, or perhaps a time period in their life where they were more likely to have been exposed. They may fit into an at-risk category for hepatitis B due to lifestyle choices, country of origin, frequent travel and exposure in endemic areas of the world, or an unsafe blood transfusion, or medical or dental procedures performed without proper infection control. Some may never know how they were infected. What is important is that you are now aware.

Since HBV is a silent infection there can be years before it is detected.  Many individuals born in endemic parts of the globe find out later in life that they are hepatitis B positive, even though they have likely had HBV since birth or early-childhood. Children are especially vulnerable to chronic HBV. Greater than 90% of babies and up to 50% of young children infected with HBV will remain chronically infected, and most will have no symptoms.  Often it remains undetected until it is caught in routine blood work, blood donation, or later in life after there is liver inflammation or disease progression. In Asia, vertical transmission from mother to child is particularly common; whereas in Africa, horizontal transmission at a young age may be more likely.

Although not casually transmitted, there are inadvertent opportunities for exposure to hepatitis B. If you are from an area where HBV is very common, then the odds of exposure, transmission, and infection will be higher. Many are surprised when family is tested, and they learn hepatitis B appears to “run in their family”.  Hepatitis B is NOT genetic! It is not carried on the sperm of a man or the egg of a woman, but it is very easily passed from an HBsAg positive mom to her baby at birth. Hep B is a vaccine preventable disease, but not all moms living with the virus have access to the birth dose for their baby or able to complete the vaccine series, or they have a high viral load resulting in failure of HBV birth prophylaxis. The good news is that today we can prevent the transmission of hepatitis B to the next generation.

If you do, or have participated in high-risk activities at some point in your life, you are also at greater risk. This is not a time to judge or be judged.

Time to move forward. Unless your infection is acute and you can definitively identify your exposure, I would advise that you let it go and move forward. I spent a number of years wondering about the details of my daughter’s infection, but ultimately, it really didn’t matter. What is important is seeing a doctor to learn more about your infection, getting treatment if you need it, preventing transmission to others, and moving forward with your life.

Journey to the Cure: How is Hepatitis B Related to Liver Cancer ft. Aejaz Sayeed, PhD

Welcome to “Journey to the Cure.” This is a web series that chronicles the progress at the Hepatitis B Foundation and Baruch S. Blumberg Institute towards finding the cure for hepatitis B.

In the four episode (part 1), Kristine Alarcon, MPH talks with Aejaz Sayeed, PhD, Assistant Professor of the Baruch S. Blumberg Institute. They talk about how hepatitis B is connected to liver cancer and doctors and scientists tell if a patient has cancer.

For any questions about hepatitis B, please email info@hepb.org.

The Hepatitis B Foundation is a national nonprofit organization dedicated to finding a cure and improving the lives of those affected by hepatitis B worldwide through research, education and patient advocacy. Visit us at www.hepb.org, on Facebook at www.facebook.com/hepbfoundation, on Twitter at @hepbfoundation, and our Blog at www.hepb.org/blog

Disclaimer: The information provided in this video is not intended to serve as medical advice or endorsement of any product. The Hepatitis B Foundation strongly recommends each person discuss this information and their questions with a qualified health care provider.

Edited:
Kristine Alarcon, MPH

Special thanks:
Samantha Young

Music:
Modern – iMovie Library Collection