Hep B Blog

Category Archives: Hepatitis B Diagnosis & Monitoring

Hep Matters Vignettes: Waiting for a Cure.

 

 

 

 

 

 

 

 

Hep Matters: Brief vignettes focused on promoting awareness of hepatitis B and liver cancer through fictional narratives inspired by real events and experiences

 

 

The Scenario 

 

 

 

 

Amina was born and raised in Kandahar, Afghanistan. At the age of 17, she moved to the United States with her family. During a routine check-up with her primary care doctor, Amina discovered that she had hepatitis B. She had never heard of the disease and explained that she always takes care of herself. The doctor told her that hepatitis B is a virus that damages the liver, and anyone can get it unless they are vaccinated to protect against it. Amina recalled that she never received any vaccinations for hepatitis B. Her family members were also unaware of how hepatitis B gets transmitted. 

 

 

Amina asked her doctor how she could get rid of this virus. Her doctor explained to her that there is no cure for hepatitis B, but antiviral treatment options do exist. While she may not be able to completely get rid of the virus, she can help protect herself from serious conditions such as hep B related cirrhosis or liver cancer with treatment. Amina’s doctor encouraged her to get treatment to prevent any serious problems from occurring. He also mentioned that treatment for hepatitis B is safe and effective. This did not make any sense to Amina. She thought to herself that if a treatment wouldn’t cure her of the disease, then there is no point in taking it. She felt healthy and did not show any symptoms. After the doctor suggested treatment options, she said that she will wait for the cure.

 

 

After moving to the U.S., Amina had gotten busy with school and work and did not follow up with her primary care doctor for years. Amina experienced stomach pains from time to time but they often went away on their own. On one occasion, her stomach pain worsened. She had to take a few days off from work to get better using home remedies, but they didn’t help. Finally, she went to the doctor’s office to learn more. She discovered that she had liver cancer. Her doctor referred her to a hepatologist (a liver specialist) for further treatment.  

 

 

 

The hepatologist explained to Amina that hepatitis B can lead to liver cancer without monitoring and treatment. Even though a cure is not available, treatment options do exist, and they help in slowing and preventing serious liver disease, liver damage or liver cancer. If Amina had started antiviral treatment on time, she could have saved her liver. The doctor recommended chemotherapy for Amina to treat the cancer. Not only did her medical bills go up but Amina felt physically and mentally exhausted by the procedures. She advocates for everyone living with hepatitis B to get treatment if they need it and not wait for the cure. She also participates in advocacy efforts to make treatment options more affordable for people living with hepatitis B. 

 

 

The Challenge: 

Lack of awareness: 

Amina and her family had little knowledge about hepatitis B before her diagnosis.  They were not vaccinated, which put them at an increased risk of getting hepatitis B. Even after her diagnosis, Amina did not take the time to fully understand her diagnosis, what lifestyle she needs to follow, or available treatment options. Not knowing enough about one’s hepatitis B diagnosis can put people at risk for more serious problems in the future such as liver cancer.  

Barriers to treatment 

After her doctor went over the treatment options, Amina decided to wait for a cure. While it is not clear if financial reasons played a role in her decision to not get treatment, the cost of treatment is certainly an important factor when considering treatment options for many people. Not having insurance coverage, high out-of-pocket costs, and side effects from medication can be barriers to getting treatment for hepatitis B.  

Difference between the cure and the current treatment for hepatitis B 

Instead of getting treatment, Amina decided to wait until a cure is available for hepatitis B. It is very important to understand the difference between treatment for hepatitis B and a potential cure. While scientists are working on finding an effective cure, it is not yet available. The process of getting a new medication approved for use is very long and consists of many procedures and steps, to ensure safety and effectiveness. The available treatment for hepatitis B is very effective in preventing serious liver problems such as cancer as it can control the long-term effects of the virus on the liver. There are many different treatment options available to reduce the symptoms, help people feel better, and prevent progression of hepatitis B to advanced liver disease such as liver cancer.  

 

What Can You Do? 

Don’t wait! 

After receiving your diagnosis, the most important step is to not wait and to get connected with care immediately. Schedule an appointment with your doctor and discuss your results. Take the time to understand your diagnosis and ask important questions. Discuss treatment options. Sometimes, treatment is not needed but other times, it’s important to start treatment right away. Encourage your friends and family to get screened and vaccinated for hepatitis B.  

Find Resources! 

The Hepatitis B Foundation has excellent resources on all things related to hepatitis B knowledge, prevention, and treatment. Check out some of our resources below:  

Information about hepatitis B:  

  • https://www.hepb.org/resources-and-support/fact-sheets/ 

Community support:  

  • https://www.hepbcommunity.org/  

Medication assistance programs 

  • https://www.hepb.org/treatment-and-management/patient-assistance-programs-in-the-u-s/ 

Resources for those newly diagnosed  

  • https://www.hepb.org/prevention-and-diagnosis/newly-diagnosed/ 

Hepatitis B research institute 

  • https://www.blumberginstitute.org/ 

Partner Highlight: Philadelphia Department of Public Health’s Viral Hepatitis Program Makes Great Strides Towards Elimination!

 

 

 

 

 

 

 

Happy Hepatitis Awareness Month! Continue reading to get to know the Viral Hepatitis Program at the Philadelphia Department of Public Health (PDPH)!  

The Viral Hepatitis Program at PDPH strives to support Philadelphia residents and service providers in several ways, including preventing viral hepatitis infection through education, screening, and vaccination; improving and providing access to affordable treatment; and supporting provider efforts to provide comprehensive viral hepatitis care/treatment. There are many tools that exist to prevent and treat viral hepatitis infections, and even cure them in the case of hepatitis C. Access to these services, however, is not readily available for everyone. The Viral Hepatitis Program aims to increase access and reduce inequities in care through collaborations and programming, in hopes of achieving the 2030 goal of hepatitis B and hepatitis C elimination.  

The Viral Hepatitis Program performs a number of exciting projects to achieve this work! 

 

 

 

Patient Engagement 

Many members of the Viral Hepatitis Program spend their days interacting with patients over the phone. Public health surveillance allows the program to work with hepatitis B and hepatitis C patients to provide individualized support. This outreach provides patients with viral hepatitis education, linkage-to-care, and care navigation along with access to harm reduction materials, support for substance use disorder care, and additional resources. 

 

 

 

 

 

Above: Viral Hepatitis team member, Cassandra Lamadieu, provides viral hepatitis educational materials to community members in attendance at the 2023 Philadelphia Block Captain Rally. 

 

Philly InSync: Provider Engagement  

Through collaborations within PDPH and with a partner organization, the Philly InSync Project provides education and technical assistance to healthcare providers and facilities to integrate harm reduction, substance use disorder care, and care for infectious diseases related to drug use. Philly InSync works with multiple sites to provide testing, care, and treatment of hepatitis B, hepatitis C and other infectious disease care while also providing technical assistance including staff trainings, data improvement strategies, and reducing barriers to care. A technical advisory committee of Philadelphia providers meets quarterly to provide enhanced technical assistance to these sites while learning how to improve the care they provide as well. The program elevates conversations among Philadelphia providers and creates a collaborative community to learn, listen, and share experiences, challenges, and solutions that involve anything from clinical experiences to insurance barriers.   

Pharmacy Project: Increasing Hepatitis A & B Vaccination 

Another project to increase viral hepatitis prevention efforts is the Pharmacy Project, which is focused on improving pharmacy-based vaccination for hepatitis A & B. Annually, the Viral Hepatitis Program conducts a survey of pharmacies in Philadelphia to collect information about hepatitis A and B vaccination services. The survey results are shared with the community on a map that allows patients and providers to find vaccinating pharmacies. The data collected is also used to identify barriers to vaccine access, to inform additional activities to support patients, providers, and pharmacists. 

 

 

 

 

 

 

 

 

Social Media 

To engage the community and to promote collaboration, the program runs several social media accounts and provides up-to-date information and resources. To access information on vaccine events, mobile health clinics, and many other health services follow along at the links below! Make sure to follow along during the month of May for some special Hepatitis Awareness Month content!  

 

 

 

 

 

 

 

Philadelphia Hepatitis B & Hepatitis C Elimination Plan 

The Viral Hepatitis Program and local partners and community members have worked together to create a plan for the elimination of hepatitis B and hepatitis C in Philadelphia. To see information on this process visit: Philadelphia Hepatitis B & Hepatitis C Elimination Plan Community Engagement Executive Summary. Striving to eliminate the impact of these infections from Philadelphia is not a new effort, as a committed community of viral hepatitis eliminators has been hard at work for quite some time. Hep B United – Philadelphia and The Hepatitis C Allies of Philadelphia (HepCAP) are the two local coalitions made up of individuals and organizations committed to viral hepatitis elimination. While much has been accomplished, PDPH and the local community of eliminators are continuing the work to provide services to educate, prevent, vaccinate, test, link-to-care, and treat these two diseases in Philadelphia. The Plan will be released in 2023. 

 

To learn more about viral hepatitis or for any questions… 

Websites: Phillyhepatitis.org & Hepcap.org 

Email: hep-ddc@phila.gov 

To order educational materials: bit.ly/hepeducationalmaterials  

Hepatitis B and Injection Drug Use: Risks, Barriers to Care, and Prevention Strategies

 

 

 

 

 

 

 

 

 

Hepatitis B is a liver infection which is caused by the hepatitis B Virus (HBV). Hepatitis B is transmitted from person to person through blood, semen, or other bodily fluids. You can learn more about the ways hepatitis B is spread here. People who inject drugs (PWID) are at high risk for contracting the virus due to the sharing of needles and low  awareness and education about hepatitis B.

HBV Prevalence among PWID Communities

People who inject drugs (PWID) are at high risk for hepatitis B virus infection due to various factors, including sharing injection equipment and lack of awareness about hepatitis B transmission. Using unclean needles to inject drugs can result in the exchange of blood. This increases a person’s risk of being exposed to the virus. Hepatitis B prevalence among PWID is much higher than in the general population. Chronic HBV infection has been identified in 3.5% to 20.0% of PWID in a variety of settings, and 22.6% of PWID have evidence of past infection (Haber & Schillie, 2021). Drug injection is the most common risk for persons ages 18-40 years old with hepatitis B virus. 

Barriers to Care for PWID Communities

Access to treatment can be a significant barrier for PWID, who may face stigma and discrimination in healthcare settings. To find out if someone has hepatitis B it is recommended that a triple panel hepatitis B test be run (which includes HBsAg, HBcAb and HBsAb). These tests will help identify people with hepatitis B, a previous exposure to hepatitis B and those who have protection against hepatitis B infection (through vaccination). For those with hepatitis B, treatment options for hepatitis B consist of antiviral medications that can help to control the virus and reduce the risk of serious liver damage, cirrhosis, and liver cancer. Treatment is taken daily for life generally. PWID lack access to these treatments due to the stigma attached with substance use and addiction. Some of these stigmas include being associated with dangerous, unpredictable, and lacking self-control (NIH, 2019). In a recent study, 88% of individuals from PWID have experienced some type of stigma from the healthcare system (NIH, 2019).  Some of these stigmas included being poorly treated in healthcare facilities while interacting with nurses, security guards, and other medical providers. Due to these biases, people often refuse to seek health care services to avoid mistreatment. Stigma is the top barrier for PWID communities worldwide (Biancarelli et al, 2019). Even though the cost of treatment may be a barrier for some people, there are resources to find affordable options. Learn more about accessing medication here

Prevention Strategies

One effective prevention strategy to combat the spread of hepatitis B among PWID is to use clean injection equipment, like needles, works, and syringes. This will reduce the likelihood of transmission. New services have been introduced in cities like Philadelphia to decrease the rate of sharing needles. Prevention Point Philadelphia for example is a nonprofit public health organization that works to provide comprehensive harm reduction services to Philadelphia and surrounding areas. The syringe service program specifically allows used syringes to be exchanged for clean ones. With these services, the need to share needles can decline, which then can help decrease the risk of hepatitis B and other infectious diseases being spread in the community. Needle and syringe programs also provide other social and health services, such as counseling,  hepatitis testing, and referral to drug treatment for example.

Another way to prevent hepatitis B in PWID is through education and outreach efforts to help raise awareness about the risks of transmission and how to reduce those risks. This will also encourage safer injection practices to reduce the risk of transmission through blood contact. Other recommendations for prevention of hepatitis B among people who inject drugs is to offer vaccinations for PWID communities. The hepatitis B vaccine is safe and effective and recommended for all adults in the US between the ages of 18-59 and above 59 with risk factors. Testing is another great way to help the community- to identify infection and encourage prevention through vaccination ultimately preventing liver cancer in the long run. Offering people who inject drugs incentives to increase uptake and complete the vaccination schedule is also a way to prevent hepatitis B in PWID (WHO, 2023).  The United States has set a goal to decrease the number of cases of hepatitis B in the PWID community. The National Progress Report goal is to reduce the rate of new hepatitis B virus infections among people who inject drugs by more than 25% by 2025 (CDC, 2020). 

 

To learn more about the resources provided by Prevention Point, click here.

 

References:

World Health Organization. (2022, June 24). Hepatitis B. World Health Organization. Retrieved March 15, 2023, from https://www.who.int/news-room/fact-sheets/detail/hepatitis-b

World Health Organization. (2015, March). Guidelines for the prevention, care and treatment of persons with chronic hepatitis B infection. World Health Organization. Retrieved March 15, 2023, from https://www.who.int/publications/i/item/9789241549059

Centers for Disease Control and Prevention. (2020, August 11). NP report 2025 goal: Reduced HBV rate among PWID. Centers for Disease Control and Prevention. Retrieved March 15, 2023, from https://www.cdc.gov/hepatitis/policy/NPR/2020/NationalProgressReport-HepB-ReduceInfectionsPWID.htm

Biancarelli DL, Biello KB, Childs E, Drainoni M, Salhaney P, Edeza A, Mimiaga MJ, Saitz R, Bazzi AR. Strategies used by people who inject drugs to avoid stigma in healthcare settings. Drug Alcohol Depend. 2019 May 1;198:80-86. doi: 10.1016/j.drugalcdep.2019.01.037. Epub 2019 Mar 8. PMID: 30884432; PMCID: PMC6521691.

Haber, P., & Schillie, S. (2021, August 18). Pinkbook: Hepatitis B. Centers for Disease Control and Prevention. Retrieved March 24, 2023, from https://www.cdc.gov/vaccines/pubs/pinkbook/hepb.html 

Centers for Disease Control and Prevention. (2023, March 17). QuickStats: Age-adjusted drug overdose death rates, by state – National Vital Statistics System, United States, 2021. Centers for Disease Control and Prevention. Retrieved March 19, 2023, from https://www.cdc.gov/mmwr/volumes/72/wr/mm7211a7.htm?s_cid=mm7211a7_e&ACSTrackingID=USCDC_921-DM101471&ACSTrackingLabel=This+Week+in+MMWR+-+Vol.+72%2C+March+17%2C+2023&deliveryName=USCDC_921-DM101471

Board of Health, Department of Public Health. (2022, October 26). Health Department releases data on 2021 overdose deaths in Philadelphia: Department of Public Health. City of Philadelphia. Retrieved March 20, 2023, from https://www.phila.gov/2022-10-26-health-department-releases-data-on-2021-overdose-deaths-in-philadelphia/

If it’s not broken, don’t fix it! A hepatitis B vignette.

The Scenario

Yufei Zhao is 45 years old and lives with his family in Philadelphia,   Pa. Yufei discovered that he had hepatitis B when he attended a community health fair with his family. Even though he was instructed to talk about his diagnosis with a doctor and learn more about possible treatment options, Yufei decided to do nothing as he did not feel sick. While he has health insurance through his employer, he never utilizes any health care services. He often skips annual wellness visits as he says he “never gets sick.”  

A few weeks ago, Yufei’s family noticed that he has been skipping meals frequently saying he’s full or not hungry. At his daughter’s urging, he decided to go for a visit. After conducting some more tests, his doctor explained that the chronic infection with the hepatitis B virus had progressed substantially, and he had developed cirrhosis. After an MRI diagnosis, it was revealed that Yufei had liver cancer.

The Hepatologist (liver doctor) explained to Yufei that the liver is an important organ and acts as a cleaning system for the body. It removes toxic waste, purifies blood, and helps to digest food properly. When the virus entered the liver, it made many copies of itself and started attacking healthy liver cells. This led to inflammation and weakened the ability of the liver to carry out its most essential tasks. Because he was never monitored for hepatitis B, the virus allowed tumors to grow in the liver which caused the cancer. When the tumors grow in size or number, it eventually spreads to other parts of the body and disrupts other vital processes as well. 

The doctor mentioned that liver cancer is often called the silent disease because symptoms may not always be present. Even with a hepatitis B, a person could look or feel okay but that does not mean the virus isn’t active and causing damage. When the symptoms do show up, it might be too late to prevent liver cancer. After discussing his options with the doctor, Yufei learned that the best treatment for him was to get a liver transplant.  

He weighed the pros and cons of getting a transplant and consulted with his family. Now, Yufei is placed on a waiting list for a liver transplant to become available. In the meantime, his doctor has suggested other methods to destroy the smaller tumors without surgery through radiation (ablation). Yufei continues to spend more time with his family as he hopes to respond well to treatment until a new or partial liver is available.  

The Challenge

Cultural Perceptions on Health & Well-being 

  • Yufei is an older male in the household and the backbone of the family. For this reason, he considers it an obligation to prioritize his family over his personal health. It is important to understand these cultural and social beliefs prevalent in many different cultures and households. 
  • Family members should be advised to encourage their loved ones (especially older family members) to take charge of their health. It is important to check-in with your loved ones and assure them that sickness does not necessarily mean weakness. Taking care of one’s health can mean taking charge of one’s future.  

Hep B and Liver Cancer

  • Hepatitis B is a virus that causes inflammation of the liver. Without proper diagnosis and treatment, the virus can continue to multiply and damage healthy liver cells. This can lead to inflammation and scarring of the liver. This prevents the liver from doing its most important functions to maintain overall health which may result in the development of harmful tumors.  

Liver Cancer is a Silent Disease 

  • Many people with hepatitis B or liver cancer do not show symptoms of sickness but that does not mean the virus isn’t present or not actively working to harm the liver. Eventually, the physical symptoms will become noticeable as the virus/cancer advances to a more dangerous stage. 
What can you do?

Get tested! 

  • The most important thing you can do to prevent liver cancer is to get tested for hepatitis B. Most liver cancers develop from undiagnosed hepatitis B infections. There are a lot of people who have hepatitis B and do not know about it because they have never been tested. Even if you feel healthy and okay, it does not hurt to get tested!
  • If you don’t have hepatitis B, the test can tell you if you are vaccinated or if you need vaccination (which can provide lifelong protection from ever getting hepatitis B and help prevent liver cancer). 

Get screened! 

  • If you have hepatitis B, it is critical to manage the progression of the virus in your liver. For this reason, it is important to go through monitoring of your hepatitis B infection, liver health, and screen regularly for liver cancer.
  • Discuss with your doctor if you are at high-risk and how often you should get screened. It is recommended to get an ultrasound every 6 months to check how the virus is impacting the liver. AFP testing may also be done with regular monitoring of the liver to check for the possibility of liver cancer. 

Get educated! 

  • Stay up to date with the latest research and information on liver cancer! If you have hepatitis B, you should know that there is no cure for the virus but there is a lot of research that shows what you can do to ensure you live a healthy and long life.
  • Take an active role in learning about the disease and how it can affect your health over time. Learn about fibrosis, cirrhosis, liver cancer staging, and available treatments for hep B infection.  

References
  1. https://www.hepb.org/research-and-programs/liver/screening-for-liver-cancer/ 
  2. https://www.cancer.org/cancer/liver-cancer/treating/by-stage.html#:~:text=Treatment%20options%20might%20include%20ablation,%2C%20and%2For%20radiation%20therapy. 
  3. https://www.cancer.org/cancer/liver-cancer/detection-diagnosis-staging/staging.html 
  4. https://www.hepb.org/research-and-programs/liver/risk-factors-for-liver-cancer/ 

Ignore it till it goes away! A hepatitis B vignette.

The Scenario:

Woman is sick on couch, her husband is giving her an ice pack

Aroha Kawai just started a new job as a medical interpreter for Pacific Islander patients diagnosed with COVID-19. As a critical source of communication for the providers and the patients, she is often called to work night and weekend shifts. Aroha had a difficult conversation with the family members of a critical COVID-19 patient on whether they should discontinue ventilation support for the ailing grandmother. During this time, Aroha’s family noticed changes in her behavior. She stopped eating regularly, lost weight and repeatedly cancelled plans to go out. Aroha dismissed her family’s concerns as physical manifestations of the emotional burnout from work.

People are at a free hepatitis B screening event in a park.

Recently she attended a health fair hosted by her department at work. She approached a viral hepatitis screening booth and decided to get tested for hepatitis B. The following week, she received her results in the mail. Her results indicated that she had tested positive for hepatitis B. She shared her diagnosis with her mother who informed her that her grandfather died from liver cancer.  

Inside a doctor's office. A doctor is showing information about the liver. A woman with hepatitis B sits with her husband.

Aroha then followed up with her primary care doctor She discovered that she had chronic hepatitis B. Even though the ultrasound did not show any evidence of cirrhosis, her doctor ordered an imaging test (U/S, CT, MRI) to screen for liver cancer. Unfortunately, Aroha was diagnosed with early-stage liver cancer 

Inside a hospital room. A man and child visit a woman with hepatitis B in a hospital bed.

Fortunately, the cancer had not spread and did not infect nearby blood vessels. Her doctor suggested a partial hepatectomy to remove the tumor safely as the rest of the liver was still healthy. Aroha decided to adhere to her doctor’s advice and successfully underwent the surgery. She has taken some time off from work to focus on recuperating from the surgery and spending time with loved ones.  

 

 


The Challenge:
  1. Dismissal of Symptoms:
    • Aroha initially ignored the physical symptoms of liver cancer. It is true that signs and symptoms may not necessarily be present.
    • However, it is crucial to take care of one’s health and never ignore warning signs. Fatigue, unintended weight loss, and loss of appetite are a few of the symptoms of liver cancer. 
  2. Cancer without Cirrhosis: 
    • It is possible to get liver cancer without cirrhosis. Therefore, it is always important to screen for liver cancer if you have chronic hepatitis B infection. 
  3. Importance of Screening
    • Liver cancer screening is a highly effective method to detect malignant tumors and prevent cancer for those living with hepatitis B.
    • Early intervention increases the survival rate significantly and stops the cancer from spreading to other vital organs. 

What can you do?
  1. Get Help!
    • If you experience pain or discomfort of any kind, it is important to reach out for help. Set up an appointment with your doctor and discuss your concerns.
    • There is a good chance you might be misunderstanding an important health issue for side effects of stress or emotional burnout. Do not ignore your symptoms or feelings.  
  2. Get Screened!
    • Hepatitis B is a leading cause of liver cancer, most of the time it is because someone did not know they were infected with hepatitis B or were not managing their hepatitis B infection.
    • Everyone should be tested for hepatitis B to know their status. Ask your doctor for a hepatitis B screening today.  
  3. Stay on track!
    • If you have hepatitis B, it is critical to manage the progression of the virus in your liver. For this reason, it is important to go through liver cancer surveillance regularly. Discuss with your doctor if you are at high-risk and how often you should get screened.
    • It is recommended to get an ultrasound with blood work every 6 months to check how the virus is impacting the liver.  This includes the alpha-fetoprotein (AFP) blood test to measure the levels of AFP in your blood as it may indicate the presence of cancer cells in your liver. This can also help detect any scarring or tumors. 

Don't ignore it until it goes away. Get help. Get screened for hepatitis B. Stay on track.


Resources and Acknowledgements:
  1. https://www.cancer.org/cancer/liver-cancer/detection-diagnosis-staging/signs-symptoms.html 
  2. https://www.cancer.org/cancer/liver-cancer/treating/by-stage.html 
  3. https://www.hepb.org/research-and-programs/liver/prevention-of-liver-cancer/ 

Reactivation with Hepatitis B: Understanding Risk Factors and Prevention Strategies

Understanding the hepatitis B virus and the panel of blood tests needed to determine infection or immunity can be a stressful and challenging task. In simplest terms, “hepatitis” means liver inflammation and the hepatitis B virus can ultimately cause liver inflammation. The liver is an important organ in the human body and responsible for the removal of toxins and regulation of digestion (learn more about the function of the liver here). The hepatitis B virus can infect and disrupt critical functions of the liver in supporting your overall health. 

How the hepatitis B virus works 

In the case of the hepatitis B virus, the host is the liver cell. As the virus makes more copies of itself, the liver may become damaged, and sometimes it is unable to carry out its essential tasks to regulate metabolism, nutrients, and digestion. It is best to prevent hepatitis B infections when we can – and since antibodies are the best defense against the virus, the hepatitis B vaccine can be used to signals the body to make antibodies to fight the virus. The hepatitis B vaccine provides lifelong protection from the virus. However, this is only possible before infection with the virus. If somebody is already infected with the virus, antiviral therapy is used to control the virus and prevent liver damage – antiviral medications disrupt the life cycle of the virus by disabling viral receptors from binding to liver cells. 

Blood test panel to diagnose hepatitis B: 

The only way to tell someone’s hepatitis B status is through a panel of blood tests – the tests are all done at one time, and only one small tube of blood is needed. These tests are not included in routine testing, so it is important to ask your doctor to test you for hepatitis B or try to find a free screening event near you (http://www.hepbunited.org/). The panel consists of the following tests to determine your hepatitis B status: 

  1. HBsAg: 
    • This tests for the hepatitis B surface antigen in someone’s blood. The surface antigen is the protein that surrounds the virus and protects it from attack by the host. A positive surface antigen test indicates that the virus is present in the body. A “positive” or “reactive” result for HBsAg indicates that someone is infected with hepatitis B and can transmit the virus to others.  
  1. HBsAb 
    • This tests for the hepatitis B surface antibody in someone’s blood. The surface antibodies are produced by the immune system and can fight off the virus by attaching to the surface antigen protein. This test can detect the presence of these antibodies. Ideally this test will be ordered quantitatively (numerically). A “positive” surface antibody test (meaning numbers reading >10 IU/mL) means that a person has protection against the hepatitis B virus (either by vaccine or from a past exposure).  
  1. HBcAb (total) 
    • This is known as the hepatitis B core antibody test. The core antibody is produced by the immune system after infection with the virus. This test indicates an existing or past infection of the hepatitis B virus.  

 

To learn more about interpreting your test results, click here. 

Important things to know about Hepatitis B Core Antibody (HBcAb) 

Someone who has markers of past infection, particularly hepatitis B core antibody, can be at risk for hepatitis B reactivation. Reactivation can be triggered by immunosuppressive therapies and cause significant life-threatening challenges. If you test HBcAb+, please talk to your doctor about what that means, and make sure you notify all future health care providers. 

How is reactivation with HBV defined? 

Reactivation is defined as the sudden increase or reappearance of HBV (hepatitis B virus) DNA. When the virus invades the cell, it forms a covalently closed circular DNA (cccDNA) in the nucleus of infected cells referred to as hepatocytes. Because cccDNA is resistant to antiviral treatments, it is never removed from the cells. Therefore, even after recovery from a past infection, the cccDNA is present and may reactivate. It is not clearly understood why this may happen, but certain factors may increase the risk for reactivation.  

To learn more about the core, click here. 

What puts one at risk for reactivation? 

  1. Virologic factors such as high baseline HBV DNA, hepatitis B envelope antigen positivity (HBeAg), and chronic hepatitis B infection that persists for more than 6 months.
    • Detectable HBV DNA levels and detectable levels of HBsAG can increase the risk for HBRr (reactivation) 
    • Testing positive for HBeAg also increases the risk for reactivation 
  2. Co-infection with other viruses such as hepatitis C or hepatitis Delta 
  3. Older age 
  4. Male sex 
  5. Cirrhosis 
  6. An underlying condition requiring immunosuppressive therapies (rheumatoid arthritis, lymphoma, or solid tumors) 
    • Certain medications can increase the likelihood of reactivation by more than 10%.  
    • B-cell depleting agents such as rituximab, ofatumumab, doxorubicin, epirubicin, moderate or high-dose corticosteroid therapy lasting more than 4 weeks. 

How to prevent reactivation of hepatitis B 

Hepatitis B reactivation is a serious condition that can lead to health complications, Reactivation is avoidable if at-risk individuals are identified through screening. Current guidelines recommend that individuals at the highest risk (those receiving B-cell depleting therapies and cytotoxic regimens) should receive antiviral therapies as prophylaxis before beginning immunosuppressive therapy. These antiviral therapies should also be continued well beyond stopping the immunosuppressive therapies. Be sure to talk to your doctor to be sure you are not at risk for reactivation.  

References 

Hepatitis b virus reactivation: Risk factors and current management strategies.

Reactivation of hepatitis B virus: A review of Clinical Guidelines.

https://aasldpubs.onlinelibrary.wiley.com/doi/10.1002/cld.883

https://www.hepb.org/prevention-and-diagnosis/diagnosis/understanding-your-test-results/

CHIPO Partner Highlight: Great Lakes Peace Centre

 The Coalition Against Hepatitis for People of African Origin (CHIPO) is a national community coalition that is co-founded and led by the Hepatitis B Foundation, comprised of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the US. Recently, CHIPO has started to expand its reach to communities in Africa and has welcomed new partners from the Continent. This month, in honor of Minority Health Month, we highlight a partnership between CHIPO and Great Lakes Peace Centre (GLPC) in Kasese, Uganda. CHIPO has recently provided GLPC with educational resources that are tailored for African communities, which GLPC is translating into local dialects and will use in a strategy to raise awareness and provide education about hepatitis B, primarily to rural women and youth in Kasese District. A recent interview with Bwambale Arafat, Head of Health and Policy Officer at GLPC, sheds light on some of the significant barriers that impede hepatitis B screening, prevention, and care in Uganda (and much of the African continent) and showcases some of the extraordinary work of GLPC on a host of issues, of which viral hepatitis is just one.

 CHIPO: Can you share a little bit about yourself? What is your connection to hepatitis?

Arafat: I work with the Great Lakes Peace Centre, which is a grassroots, youth-led organization, here in Kasese District, a rural area in Rwenzori region, western Uganda (near the border of the Democratic Republic of Congo, about 400 kilometers from the capital city of Kampala). Most of our work with hepatitis B is focused on raising awareness and providing education about the virus to women and youth in the area, who are the most important people to reach. We also engage in a lot of advocacy initiatives, as well as efforts to lower stigma and discrimination.

My personal connection to hepatitis B is the diagnosis of my uncle with hepatitis B and liver cancer and his death shortly thereafter. There was widespread misconception that he had been bewitched and poisoned by relatives. I have been working to try to dispel some of these myths and provide accurate information ever since. In 2021, I was honored as a World Hepatitis Alliance champion for hepatitis outreach work during COVID-19. I and GLPC are deeply committed to the cause of hepatitis B elimination by the year 2030.

CHIPO: Congratulations on the well-deserved honor! Can you share a bit about the work and goals of your organization?

Arafat: Due to its proximity to the Democratic Republic of Congo, Kasese feels the effects of war and conflict acutely, and the area is quite fragile. Peace and Conflict Resolution is the first of three priority areas for GLPC and is driven forward by the efforts and demographic dividends of young people. Health Promotion and Public Policy is the second priority area, which encompasses awareness and education about hepatitis, HIV/AIDS, malaria, and tuberculosis prevention, screening, and treatment, as well as nutrition assessments, counseling, and support, especially for mothers of children under five years of age. Water, Sanitation, and Hygiene is another topic of top concern, and initiatives in this sector included a hand-washing campaign for COVID-19. The last focus area under the Health Promotion umbrella is adolescent sexual and reproductive health, and especially promotion of education equity for menstruating young women and ending of stigma and discrimination around this, thus keeping young women in school for longer. Social empowerment happens through education, and people can donate to keep girls in school with financial support. The third organizational priority is to focus on climate change – GLPC distributes solar panels through public and private partnerships, as a great step toward sustainability and protecting the planet we share.

 CHIPO: What are some of the biggest barriers to hepatitis screening, prevention, and care in your community?

Arafat: As I mentioned above, the widespread presence of myths and misconceptions about hepatitis B, especially about transmission, is one of the biggest culprits in perpetuating the stigma and discrimination that still dominate the hepatitis B conversation and presents one of the biggest challenges to increasing screening and vaccination. Some ways that we are working to dispel some of these misconceptions are through our social media platforms, which all have huge followings by younger people. However, attitudes are very slow to change, and this is why the involvement of religious and community leaders in spreading accurate information and shifting the narrative around viral hepatitis is so important, and why personal testimonials and connections with people who are living with hepatitis B hold such power.

Other challenges to screening, prevention, management, and treatment of hepatitis B in Kasese include the enormous out-of-pocket costs of diagnosis and testing; the persistent lack of awareness among the general population – primarily lack of information, education, and communication; the lack of logistics and supplies for things like test kits and cold chain storage for vaccines; and the long distances and mountainous topography that make access to health facilities in larger cities difficult. Additionally, funding and resources from the government and other stakeholders remain inadequate, making it difficult to ensure that services will be available when they are needed. The Minister of Health and government of Uganda have created infrastructure to help with vaccination (they have provided 1 million USD for this reason), have recommended universal adult vaccination, and have also waived fees for viral load investigation. However, things like ultrasound scans, complete blood count panels, and other tests to determine when someone would need treatment for hepatitis are not subsidized. The government could also do a great deal more in terms of increasing awareness, investing money into management and care, prioritizing the birth dose of the vaccine to prevent mother-to-child transmission of hepatitis B, and addressing the stigma and discrimination so many living with hepatitis B routinely face.

Many infants also continue to be delivered by traditional birth attendants, who are not trained in preventing mother-to-child transmission of hepatitis B, and knowledge among community health workers in general is very low. There is also inadequate data and surveillance of the disease, and no records of screening, vaccination, or care are kept in the Health Management and Information System. There is a lack of clear guidelines around testing for the medical community and a lack of materials that can help to raise awareness and combat stigma.

We also really need to integrate hepatitis services into those that exist for HIV/AIDS. Machines that are used to test for HIV/AIDS can be recalibrated to also test for hepatitis. Electronic Health Records can be upgraded to include hepatitis B status. As awareness grows, patients can also hold health workers accountable for hepatitis testing, as they do now for HIV and syphilis. This conversation needs to start with the people themselves.

 CHIPO: How are you planning to use CHIPO’s materials and resources over the next year?

Arafat: We have a saying in Kasese: “When you talk in a foreign language, you talk to people’s heads. When you speak in their language, you speak to their hearts.” Our first priority is to translate CHIPO’s flip charts, takeaway cards, and guides for health educators into our local dialects of Lhukonzo and Runyakitara, in order to reach as many community members and stakeholders as possible. We will host four community educational events using the materials and in these events, will focus on hepatitis B overview, causes and prevention, common myths and misconceptions, and unmet needs in this area. These sessions will be moderated by NoHep Champions and Hepatitis Ambassadors, so that the community can hear from people with direct experiences of the disease and their voices can be amplified.

Additionally, we will host NoHep Champion Table Talks, which are informal discussions that will consist of young people living with HBV and pregnant women, who will share stories and build community. These talks will touch upon how people are doing physically, as well as with handling stigma, and will identify needed services, insights which can help to determine future programming and practices. These talks will also emphasize that no one is alone, and that hepatitis B is not a death sentence, but that people with HBV can live long and healthy lives. We will also convene community barazas (gatherings) with local leaders, including social workers, health workers, village health teams, hepatitis ambassadors, local council, and cultural, community, and religious leaders to conduct trainings on delivery of the educational materials. These will provide an opportunity to educate and invite open discussion. We will also hold continuing education courses on hepatitis B for healthcare professionals at health facilities, including community health workers, village health teams, and para-social workers. Finally, we are planning to compose a radio jingle related to hepatitis B that will be heard around the district.

Only 1 in 10 people in Kasese know their hepatitis B status. These materials can go a long way in changing that.

CHIPO: Thank you so much for your valuable insights and for all of the work you are doing! Do you have any final thoughts or messages that you would like to share?

Arafat: I would just like to mention our No Hep Mamas campaign, which we are also implementing for the prevention of mother-to-child transmission of hepatitis B. We are working to bring this campaign to more health facilities, and share this information in prenatal care settings, as stopping the cycle of transmission is truly the best way to eliminate hepatitis B.

CHIPO: Thank you so much again for your time today, Arafat, and we look forward to more inspiring work from you in the future!

Arafat: Thank you very much!

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!