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About Hepatitis B, HBV, Hepatitis B Awareness, Liver, Liver Cancer, Liver Health, Living with Hepatitis B

Understanding the Impact of Drinking Alcohol on Liver Health

 

 

 

 

 

 

 

 

 

 

April is Alcohol Awareness Month!  

Hepatitis B is a virus that can damage the liver. The liver is a critical organ in the human body and is responsible for energizing cells, removing toxins and waste, and strengthening the immune system. It is most commonly understood as the body’s primary filtering system and storage unit. Alcohol consumption has been shown to cause serious problems for the liver as it overwhelms the liver’s ability to carry out important tasks. 

Important Functions of the Liver: 

Bile Production: Bile is a greenish liquid released from the liver and into the gallbladder (a small sac located under the liver which stores bile) that helps to break down fats so they can be used by the body. The liver produces and cleans bile so that it can move through the small intestine. Bile also helps to remove some toxins and waste products such as excess cholesterol (a type of fat necessary for digestion and healthy cells) and bilirubin (a yellow substance made from old red blood cells) to keep your immune system healthy and clean. Even though cholesterol is an important substance, excess amounts of cholesterol can clog the bloodstream and cause serious problems like heart disease. This is why the liver removes unwanted cholesterol from the body. Similarly, bilirubin is made during the production of bile and is a waste product of old and broken-down red blood cells. A healthy liver can filter out and remove bilirubin from the body. High amounts of bilirubin may indicate damage to the liver or serious liver disease. 

Natural Detoxification: The liver is most notably known for its natural detox system, which is one of its most important functions. The liver removes toxins, foreign substances, and harmful waste from the bloodstream such as alcohol, drugs, and other chemicals through different ways. Depending on the substance, it may remove the toxin through bile, break it down into safer substances so the toxins don’t cause harm. The liver can even store the toxins, so the rest of the body is safe. It is important to understand that, even though the liver has a remarkable filtering system, it has limits and should not be put under excess stress.  

Blood Glucose Regulation: Glucose is a sugar molecule and the most important source of energy for your body. Glucose enters the body through foods high in carbohydrates, such as grains, potatoes and fruits. During the digestive process, glucose molecules from foods are broken down and used by the body to energize cells and maintain the most basic yet critical functions of the immune system. Glucose turns into blood glucose or blood sugar when it travels through the bloodstream. For glucose to be used as energy by the cells, it needs assistance from insulin (a hormone released by the pancreas), which helps it move around and get to the cells. Think of insulin as the key and glucose as the lock. The key opens the lock to the door. Similarly, insulin opens the door so that glucose can get inside the cells and provide energy. High levels of blood glucose and the inability to produce or use insulin properly can result in diabetes. Even though glucose comes from food, the human body can use the liver to produce its own glucose. The liver is basically the storage unit for glucose, saving it for use at a later time in the form of glycogen. Glycogen or stored glucose is released on an “as– needed basis.” When the body is running low on glucose, the liver uses fats to provide energy and saves the remainder of the glucose for the most important organs that need sugar for energy, such as the brain and kidneys.  

Alcohol Consumption and the Liver: 

Alcohol is a toxic substance and is known to cause a powerful effect on the brain’s ability to understand and process information because the brain is a very sensitive organ. This is why alcohol can be so addictive for some people. It causes chemical effects (excess release of dopamine, a hormone that makes you feel good) in the brain, which can lead to addiction. Increased intake of alcohol is also linked to several health issues such as cancer, heart disease, digestive problems and liver disease. Alcohol use is also associated with injuries such as fatal car crashes and alcohol overdose.  

Since the liver is the body’s natural detox system, alcohol consumption disrupts the liver from carrying out its most important tasks. For example, the liver’s role is to remove alcohol from the blood. Breaking down ethanol (found in alcohol) causes some liver cells to die. The liver is able to make new cells but too much alcohol or long-term use can reduce the ability to make repairs. The U.S. Centers for Disease Control and Prevention (CDC) defines more than two drinks per day for men and one drink per day for women to be excessive alcohol use. Drinking too much inflames the liver and disrupts its filtering system. Damaged and weakened liver cells are unable to remove the toxins from alcohol from the blood. When liver cells are destroyed, they are unable to carry out the other important tasks such as producing bile, making proteins and storing glucose.  

The most common type of alcohol– related disease is fatty liver. This is when excess amounts of fat are found in the liver. This causes the liver to swell, and overtime may cause inflammation or cirrhosis (scarring of the liver). Any damage to the liver cells, whether it’s through swelling, inflammation, or scarring, disrupts the liver’s ability to carry out its most essential functions. Cirrhosis or scarring of the liver is the most dangerous thing that can happen to the liver. It means that healthy liver tissue and cells are now being replaced by scar tissue from liver damage. The symptoms of liver damage from alcohol use may consist of fever, vomiting, nausea, jaundice, abdominal pain, fatigue and loss of appetite. This process is not sudden and usually takes a long time to happen. However, symptoms and signs may not always be present.  

What People Living with Hepatitis B Should Know About Drinking Alcohol? 

People living with hepatitis B should know that the liver is already weakened by the virus. The hepatitis B virus attacks the healthy liver cells and tissue and causes inflammation. Alcohol use can result in more problems and can put greater stress on the liver. It can speed up the harm to the liver, resulting in serious liver disease. It can lower the body’s ability to defend itself from foreign invaders, such as other viruses and bacteria. Studies have shown that alcohol intake can result in rapid HBV replication, further increasing the risk of cirrhosis and liver disease.  

Love your Liver! 

In a recently published statement by the World Health Organization, it was found that “no amount of alcohol is safe when it comes to health.” It is important to understand that alcohol, whether little or much, is a toxin and puts the liver at the highest risk as the liver is the natural detox for unwanted and harmful substances. The liver does a lot to keep our bodies protected from harm and acts as a natural defense. But, like people, the liver can also experience burnout. It is very important to keep our liver healthy, safe, and away from harm! 

References: 

https://www.hopkinsmedicine.org/health/conditions-and-diseases/alcoholinduced-liver-disease 

https://www.verywellhealth.com/definition-of-bile-1759867 

https://www.ncbi.nlm.nih.gov/books/NBK470209/ 

https://dtc.ucsf.edu/types-of-diabetes/type1/understanding-type-1-diabetes/how-the-body-processes-sugar/the-liver-blood-sugar/#:~:text=When%20you’re%20not%20eating%20%E2%80%93%20especially%20overnight%20or%20between%20meals,in%20a%20process%20called%20glycogenolysis. 

https://columbiasurgery.org/liver/liver-and-its-functions#:~:text=The%20liver%20filters%20all%20of,fats%20and%20carry%20away%20waste. 

http://hepctrust.org.uk/information/liver/detoxification 

https://www.who.int/europe/news/item/04-01-2023-no-level-of-alcohol-consumption-is-safe-for-our-health#:~:text=The%20risks%20and%20harms%20associated,that%20does%20not%20affect%20health. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7081008/#:~:text=Hepatitis%20B%20virus%20(HBV)%20and,allows%20HBV%20to%20persist%20chronically. 

https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/effects-of-alcohol-on-your-health-and-liver 

About Hepatitis B, HBV, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Uncategorized, United States

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/

HDV, Hepatitis D Avocacy, Hepatitis Delta (HDV), Research

Why Is Hepatitis Delta So Hard to Eliminate?

Forty-five years after Mario Rizzetto discovered the hepatitis D virus (also known as HDV or hepatitis delta), scientists and advocates met for the first ever Delta Cure Meeting to discuss new scientific trends and global advocacy efforts to eliminate this difficult-to-treat disease. This conference included topics ranging from HDV’s global prevalence to new diagnostic methods, and the need for specific and improved efforts to fight this virus.

During the Delta Cure Meeting, scientists called for new global strategies to find people living with HDV and have prompted the World Health Organization (WHO) to update their screening guidelines to include HDV tests for all people living with hepatitis B (people who are HBsAg-positive). 

Unfortunately, some barriers continue to stand in the way of making this call to action a reality. Dr. Meg Doherty, the Director of Global HIV, Hepatitis, and STI Programmes at the WHO, stated in a recent Healio article that the WHO does not have any prevention recommendations that are specific to HDV. However, the WHO is developing updated guidance for HDV testing, diagnosis, and treatment as a part of hepatitis B (HBV)-focused elimination efforts.

While some initial progress has been made, (such as the inclusion of HDV in the 2022-2030 Global Health Sector strategies, which aim to increase knowledge about infections like HIV and viral hepatitis to create effective responses to and advance elimination efforts for these diseases), there is a need to expand elimination strategies to include HDV more broadly. The lack of robust inclusion of HDV disregards people who are currently living with HBV and are at the highest risk of HDV exposure and acquisition. People who have been diagnosed with HDV are overlooked as linkage to appropriate care, diagnostics and treatments (which are important for people living with HDV to stay healthy) continues to be out of reach for many. One of the major challenges with HDV is also the lack of testing and surveillance to identify those individuals living with delta and to understand the true burden of the disease. 

The WHO affirms that HDV elimination efforts must start with raising awareness of the virus and increasing advocacy efforts. The scientists at the Delta Cure Meeting are doing just that. Here are some solutions that scientists and researchers have identified to address the challenges surrounding HDV elimination:

Barrier: Overly complicated screening guidelines present a major barrier to the elimination of HDV. It was only in March 2023 that the Centers for Disease Control and Prevention (CDC) introduced new guidelines recommending universal HBV screening for all adults in the United States. A recommendation for universal HDV reflex testing (automatic testing for HDV when one tests positive for HBV) for all individuals living with HBV has still not been implemented in the US. Additionally, the American Association for the Study of Liver Diseases (AASLD) has screening guidelines for HDV that are still risk-based, meaning that only people who have certain risk factors are recommended to be tested for HDV (high-risk groups include people who inject drugs and men who have sex with men, among others). Conversely, the European Association for the Study of the Liver (EASL) and the Asian-Pacific Association for the Study of the Liver (APASL) have moved away from risk-based screening. Both EASL and APASL recommend that providers perform the HDV antibody total (anti-HDV total) test in all HBsAg-positive patients to identify whether someone has recovered from or is currently infected with delta antibodies (Palom et al., 2022; Hepatitis B Foundation, 2023).

Risk-based screening burdens both providers and patients alike. As part of risk-based testing, providers must ask questions about risk factors that are not necessarily part of a regular health screening and must know which factors indicate a need for HDV testing. Providers are often hesitant to ask their patients these questions, as talking about risk factors can be uncomfortable and overwhelming. But if providers do not ask, then the patient must know their own risk factors and ask for the test themselves (which can be very uncomfortable). A guideline to test everyone who is positive for hepatitis B (HBsAg-positive) for HDV would eliminate this confusion and hesitation. In light of this barrier, and the fact that risk-based testing is not evidence-based, the Hepatitis B Foundation recommends that all people living with HBV ask their doctors about getting tested for hepatitis delta.

Call to Action: Introduce new screening guidelines, including screening all adults who are HBsAg-positive for HDV. As the US does not have universal HDV screening guidelines, people who test positive for the hepatitis B surface antigen (HBsAg) but do not fall into a “high risk” category are not recommended to be screened for HDV, so they may be living with hepatitis delta and unaware of their infection. This puts these individuals at a much higher risk of having unmanaged hepatitis delta and developing liver cirrhosis or other advanced liver diseases at a more rapid pace. HBV is also already significantly underdiagnosed in the US and, as Dr. Nancy Reau neatly summarized “If you aren’t thinking about B, you’re not thinking about D.” 

Barrier: HDV is not a nationally notifiable or reportable condition in the United States. This means that healthcare providers are not required to report cases of HDV to local and state health departments or to the CDC. Because of this, the actual number of people living with HDV in the US remains underestimated, and without accurate prevalence data, prioritization of this neglected disease is made all the more difficult. 

Call to Action: Make HDV a reportable and notifiable disease in the US and beyond. Dr. Doherty of the WHO agrees that efforts to identify the populations most at risk for HDV are needed in the fight for HDV elimination, and specifically mentions the need for epidemiological surveys (different study designs of various sizes to better understand the burden of disease). A new survey method was discussed at the 2022 Delta Cure Meeting by Dr. Saeed Hamid in his presentation, “Epidemiology of HDV: From Low to High Endemic Countries.” Dr. Hamid called for new national surveys to be distributed to people with advanced liver disease because this population is one in which HDV is most likely to be found. He believes this monitoring method can be used in any country to advance elimination efforts.

Barrier: There are currently no standard HDV diagnosis methods, which makes HDV elimination very difficult to achieve. Professor Maurizia Brunetto, who presented “Diagnosis of HDV: Clinical Virology and New HBV Biomarkers,” explained that there is likely an underestimation of HDV infection in general, due to misdiagnosis (when someone is incorrectly diagnosed) and challenges accessing the diagnostic testing for hepatitis delta. When Dr. Doherty of the WHO was asked about what needs to be done to improve HDV elimination efforts (specifically in the US), she mentioned improving diagnostic testing tools.

Call to Action: Simplify testing and introduce point-of-care testing to increase HDV detection and diagnosis. Prof. Brunetto explained that point-of-care testing (getting rapid results within 20 minutes of being tested rather than waiting for up to 48 hours for results of a traditional blood test) can improve overall HDV diagnostics around the world. She believes it is especially important to introduce point-of-care testing in countries with less developed medical infrastructure. Having this point-of-care testing method will be easier to maintain and can identify people living with HDV earlier and link them to treatment before their disease becomes more severe. Dr. Stephen Urban, who led the discovery and creation of the first ever drug for HDV (bulevirtide), has been developing a point-of-care test to find delta antibodies from one single drop of blood. While only in the experimental phase, Dr. Urban and colleagues have published two journal articles that provide evidence for the test’s potential effectiveness in identifying people living with HDV (Lempp et al., 2021). While still more than two years away from using this method at a larger scale, Dr. Urban believes that this method can lead to faster HDV diagnostics.

As new HBV screening guidelines are introduced and new diagnostic tools are being developed, we have to advocate for universal HDV screening in individuals with hepatitis B by raising public awareness of the importance of screening and raising the voices of people who are living with HDV around the world. 

References

American Association for the Study of Liver Diseases [AASLD]. (2021, November). Hepatitis d (delta) at AASLD 2021.  https://www.natap.org/2021/AASLD/AASLD_136.htm 

Centers for Disease Control and Prevention [CDC]. (n.d.). Interpretation of hepatitis B serologic test results [Fact Sheet]. U.S. Department of Health & Human Services. https://www.cdc.gov/hepatitis/hbv/pdfs/serologicchartv8.pdf 

CDC. (2022). Nationally notifiable diseases. U.S. Department of Health & Human Services. https://www.cdc.gov/healthywater/statistics/surveillance/notifiable.html 

CDC. (2023, March 10). Screening and testing for hepatitis B virus infection: CDC recommendations — United States, 2023. MMWR | Recommendations and Reports, 72(1);1–25. https://www.cdc.gov/mmwr/volumes/72/rr/rr7201a1.htm?s_cid=rr7201a1_w 

Delta Cure. (2022, October). Program. https://www.deltacure2022.com/pages/program/index.php 

Delta Cure. (2022, October). Poster Exhibition. https://www.deltacure2022.com/pages/posterExhibition/index.php 

European Association for the Study of the Liver. (2017, April 17). EASL 2017 clinical practice guidelines on the management of hepatitis B virus infection. Journal of Hepatology, Clinical Practice Guidelines, 67(2), P370-398. DOI: https://doi.org/10.1016/j.jhep.2017.03.021

Hepatitis B Foundation [HBF]. (2023). Testing and diagnosis. https://www.hepb.org/research-and-programs/hepdeltaconnect/testing-and-diagnosis/ 

HBF (2023). Treatment. https://www.hepb.org/research-and-programs/hepdeltaconnect/treatment/ 

Lempp, F. A., Roggenbach, I., Nkongolo, S., Sakin, V., Schlund, F., Schnitzler, P., Wedemeyer, H., Le Gal, F., Gordien, E., Yurdaydin, C., & Urban, S. (2021). A Rapid point-of-care test for the serodiagnosis of hepatitis delta virus infection. Viruses, 13(12), 2371. https://doi.org/10.3390/v13122371 

Michael, E. (2022, October 31). Q&A: Expert discusses current state of hepatitis D, challenges in elimination efforts. Healio. https://www.healio.com/news/hepatology/20221031/qa-expert-discusses-current-state-of-hepatitis-d-challenges-in-elimination-efforts 

Palom, A., Rando-Segura, A., Vico, J., Pacin, B., Vargas, E., Barreira-Diaz, A., Rodriguez-Frias, F., Riveiro-Barciela, M., & Esteban, R. (2022, October). Implementation of anti-HDV reflex testing among HBsAg-positive individuals increases testing for hepatitis D. Journal of Hepatology, 4(10), 100547. https://doi.org/10.1016/j.jhepr.2022.100547 

Sarin, S. K., Kumar, M., Lau, G. K., Abbas, Z., Chan, H. L., Chen, C. J., Chen, D. S., Chen, H. L., Chen, P. J., Chien, R. N., Dokmeci, A. K., Gane, E., Hou, J. L., Jafri, W., Jia, J., Kim, J. H., Lai, C. L., Lee, H. C., Lim, S. G., Liu, C. J., … Kao, J. H. (2016). Asian-Pacific clinical practice guidelines on the management of hepatitis B: A 2015 update. Hepatology International, 10(1), 1–98. https://doi.org/10.1007/s12072-015-9675-4

TheBMJ. (n.d.). Chapter 5. Planning and conducting a survey. https://www.bmj.com/about-bmj/resources-readers/publications/epidemiology-uninitiated/5-planning-and-conducting-survey

World Health Organization. (2022, July 18). Global health sector strategies on, respectively, HIV, viral hepatitis and sexually transmitted infections for the period 2022-2030. https://www.who.int/publications/i/item/9789240053779 

300 Million Reasons, About Hepatitis B, advocacy, Hepatitis B Advocacy, Hepatitis B Awareness, Living with Hepatitis B

The Purpose and Process of Storytelling

 

 

 

 

 

 

 

 

 

If you live in the U.S. and want to learn how to share YOUR hepatitis B story in a powerful and effective way to help raise awareness, educate communities, and inspire action around hepatitis B, consider applying to our next #justB digital storytelling workshop!  

The #justB campaign empowers people with lived experience to share their story and use their voice to help increase awareness and advocacy around hepatitis B, combat stigma and discrimination, and encourage more people to get tested, vaccinated, and/or linked to care and treatment. Beginning in 2017, the Hepatitis B Foundation has partnered with StoryCenter to host six #justB digital storytelling workshops for over 41 participants from across 22 states in the U.S. and Canada. The #justB campaign includes stories that have been translated and published in 13 languages in addition to English – Mandarin, Cantonese, Vietnamese, Korean, Arabic, French, Mandingo, Twi, Yoruba, Tagalog, Khmer, Mongolian, and Chuukese.  

Attending a #justB digital storytelling workshop is a unique and uplifting experience that brings together people directly affected by hepatitis B in a supportive, small group environment (no more than 10 participants), where they can feel free to share openly about their experiences while learning to create short videos or “digital stories” in their own words. During the workshops, participants are guided through a “Story Circle” activity, receive feedback on selecting specific parts of their story to develop their script around, record a voiceover, gather photos and video clips, and combine these materials into short videos around 3-4 minutes long. After the workshops, participants become part of a growing community of more than 40 other storytellers who receive ongoing communications, resources, and opportunities to stay connected and engaged in hepatitis B advocacy and education.  

 

 

 

 

 

 

 

The storytellers gather around for a storytelling workshop.

 

Over the years since the initial launch of #justB, we have seen just how powerful storytelling is, and how personal stories can be used to promote greater awareness, openness, and discussion around an often stigmatized disease like hepatitis B. We have also learned that the process of storytelling – and participation in storytelling workshops – has a positive and lasting impact on storytellers themselves.  

For example, the following quotes (collected from storyteller interviews and audience surveys) highlight the impact that the #justB campaign has had on participants and viewers. 

Quotes from storytellers about their experience: 

  • “In the weeks after the workshop, I felt a lot more hopeful and supported.”  
  • “It was an awesome, life-changing experience and I look forward to doing more work with the Hepatitis B Foundation and various other organizations to raise Hepatitis B awareness and prevention.” 
  • “This storytelling workshop was a true blessing for me personally. Before, I felt isolated and disconnected. After the workshop and getting to know how Hep B has affected others, I feel a great sense of family and inclusion. My true hope is that our stories can change how others not affected view those who are and that more emphasis would be placed on the treatment and cure for this condition.” 
  • “I remember feeling very lonely when I first got diagnosed. I was, I don’t know, a leper or something but then to hear other people having gone through that same fear and that same sort of feeling of isolation, just super impactful. It made you recognize that this doesn’t have to be a lonely or solitary thing. There are other people who have the same struggles and experience the same fear, I guess, that you did. That was incredibly powerful, and definitely something that I didn’t know I was missing that.” 
  • “The workshop definitely changed my perspective on the power of storytelling for mental health.”  

Quotes from story viewers / audience members:  

  • “I really enjoyed the personal stories. Hearing first person experiences re: HBV has such a significant impact and realism that is not accessible when approaching the topic from a clinical or third person perspective. It’s very sad but powerful to hear the experiences re: stigma, isolation, perseverance, and how they are fighting for their families, friends, and others.” 
  • “It was very informative. I came in not understanding what it really was. Now I understand how important vaccinations are. It is an important topic to discuss, and I want to let my friends and family know how serious the problem is.” 
  • “The stories were extremely powerful. That paired with data and key messages [was] a very effective presentation.” 
  • “JustB storytelling was very moving! The diversity in storytellers was great.” 
  • “Very touching, impactful and inspirational! Thank you to all the storytellers for your bravery!”  
  • “The storytelling was wonderful. I will definitely be using the stories in our education and awareness outreach.”  

 

 

 

 

 

A postcard featuring quotes from the Dai’s Story.

 

Learn more about our current storytellers at www.hepb.org/justb. To apply for the workshop, fill out this form: https://storycenter.wufoo.com/forms/zyu5qsb02lscca. We accept and review applications on a rolling basis until all spots are filled.  

The next #justB workshop will take place this summer 2023 (tentatively in late July or August) and will be held in either Washington, DC or in the Doylestown/Philadelphia area. All travel, accommodations, and meals will be coordinated and paid for by the Hepatitis B Foundation. Participants will also receive a honorarium for completing the workshop.  

The Hepatitis B Foundation recently launched a new website for our storytelling campaign. Visit https://www.hepbstories.org/ to learn more!

If you have any questions or feedback, please contact Rhea Racho, Program Director – Advocacy and Engagement at rhea.racho@hepb.org. 

HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Hepatitis B Prevention, Hepatitis B Treatment

CHIPO Partner Highlight: Hepatitis B Initiative of Washington, D.C.

The Coalition Against Hepatitis for People of African Origin (CHIPO) is a community coalition that is co-founded and led by the Hepatitis B Foundation and is made up of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the U.S. and globally. Over the past year, CHIPO has grown its membership to include over 50 community-based organizations and federal agencies, all of which are working to meet the common goals of raising awareness about hepatitis B among African communities, and increasing rates of screening, vaccination, and linkage to care. This month, we are excited to highlight the work of one of our partners, the Hepatitis B Initiative of Washington, DC, (HBI-DC), and their new Deputy Executive Director, Sandra Ashford. Please enjoy a recent interview with Sandra, as she describes her work, including successes and challenges, and the positive impact HBI-DC has had by expanding their organization and mission.

Could you please introduce yourself and your organization?

Hello, my name is Sandra Ashford. The current Deputy Executive Director for the Hepatitis B Initiative, Jane Pan, will soon be retiring, and I’ll be stepping into the role. I started out in hepatitis B as a Latino outreach coordinator and then worked with the Fairfax County, Virginia, health department. I have also worked with IPHI (Institute for Public Health Innovation) for COVID.

Can you tell me about HBI-DC?

HBI-DC was founded by Leslie Oh, whose mom and brother died in the same year of hepatitis B-related complications. After experiencing the pain of losing her family members she decided that she did not want anybody else to go through that struggle. As a result, she started HBI Boston, where she was studying public health at Harvard University at the time. While in school she would pass out informational pamphlets about hepatitis and engage in other advocacy efforts. She moved to Washington D.C. in 2006 and started HBI-DC, which is where our organization started and from where it continues to grow.

Could you tell me about what some of HBI-DC’s programs are that specifically address hepatitis and other health concerns in African communities?

The programs that we offer include free health screenings for hepatitis B, hepatitis C, and HIV, as well as free glucose and cholesterol screenings for the community. Our reach at HBI-DC includes individuals in Washington DC, Maryland, and Virginia and, since 2006, we have educated 80,000 individuals on hepatitis, and have screened 24,000 people for hepatitis B, and an additional 22,000 for hepatitis C. From these screenings, 1,100 people have tested positive for hepatitis B and 900 people for hepatitis C. For us, that is a big success because those are individuals who did not know they were living with hepatitis.

Our programs target high-risk individuals including immigrants, especially from Africa and Latin America. Any individuals who test positive for hepatitis B or C are linked to free health care, thus ensuring that follow-up and support are established, and people are not left alone with a positive hepatitis B or C diagnosis. We also provide health education in the native language of our clients, so that everybody is accounted for in these different communities.

Which countries are primarily represented in the African diaspora that HBI-DC serves?

The African communities that we have served so far based on our screenings and education activities come from Algeria, Angola, Benin, Botswana, Burkina, Cameroon, Congo, Egypt, Ethiopia, Ghana, Kenya, Guinea, Libya, Liberia, Morocco, Nigeria, and Sierra Leone.

What are some of the biggest challenges in addressing hepatitis and other health concerns at the community level? How have you worked to overcome these? Are there any additional resources that would be helpful to have?

A significant challenge we encounter at the community level is health misinformation. Social media platforms have contributed to the mistrust of providers and vaccine mandates, and there is a significant lack of knowledge regarding viral hepatitis. We overcome these challenges through a diverse and multilingual workforce. Our community is more receptive to testing and education if they feel like they’re speaking to a representative that looks like them, shares cultural experiences, and speaks their language. In addition, all our educational and preventative material is also translated into different languages. We also utilize social media channels targeted at these diverse communities to spread accurate information on hepatitis and target populations most at risk.  

What do you think are some of the biggest barriers in raising awareness and addressing rates of hepatitis screening and linkage to care at the local, state, and federal levels? Do you think more could be done in these spheres to address this problem?

A big barrier for us is the stigma associated with HIV and hepatitis. For this reason, when we go out to events and we’re talking to communities we try to offer comprehensive health services like cholesterol and glucose screenings. When individuals get glucose and cholesterol screenings, it gives us an opportunity to educate the clients on HIV and hepatitis, because we understand the stigma associated with these diseases. Another barrier is just overall awareness and education, but we try to develop trust in the community to overcome this. Once this trust is built, it’s easier for the community to be receptive to our services and educational messaging.
I think the digital divide is a major challenge facing African immigrant communities, which can affect all aspects of their health and healthcare. When we started outreach efforts during the COVID-19 pandemic, we wanted to keep in touch with a lot of the clients that we had tested and helped out just to see how they were doing. One thing that we saw was that there was a lack of digital skills and knowledge. For example, these communities were asking us for assistance in obtaining unemployment. Of course, we’re there to help them and to walk them step by step through the process but this lack of knowledge in the digital space was a big issue in connecting them to public health assistance programs during this time. This technological burden relates back to issues of connecting care in the community especially as they pertain to awareness, education, and linkage to social services. I think that overall, this traces back to social determinants of health, so I think more education and more support for the community are needed to address these concerns.

What are your favorite parts about your job? What got you interested in this work?

I started in public health with HBI, and the one thing I love is the challenge. It’s every day you’re coming in and there’s something that needs to be addressed or you are making an impact in a certain community and coming up with solutions. I think those are the best parts of being an executive director, knowing the impact you have on communities. The best story I can share is about when I was a Latino outreach coordinator, and we were screening for glucose and cholesterol. This one gentleman tried to come in numerous times and finally, we got him in for a screening. He was losing a lot of weight and couldn’t sleep at night, and he didn’t know it at the time, but when we tested him, he was diabetic. He was completely unaware because he had no healthcare access, and after the event, he went to the emergency room to receive care. He told us if it wasn’t for us, he could have died, and he said HBI-DC was like an angel to him. We also connected him with a great nonprofit clinic, La Clinica del Pueblo in D.C., and they were able to get him health insurance. Today he’s on health insurance and medication and doing well.

Any other thoughts or ideas you’d like to share for improving health and closing health disparities among African immigrant communities in the U.S.?

I think some suggestions are to continue building community health worker programs. I think they make a big impact, especially regarding trust within the community and addressing the social determinants of health. I think we can reach out to more individuals in the Latino community and the African immigrant community and encourage them to take part in these programs. I believe support for these programs is important in closing health disparities. Also, I would avoid duplication of efforts to also achieve the greatest impact. So overall, utilizing our diverse partnerships to offer health services and close health disparities is the next step forward to reaching at-risk populations in the community.

Thank you so much for taking the time today, Sandra, and for sharing more about the amazing work HBI-DC has done in the community and will continue into the future!

Thank you!

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300 Million Reasons, advocacy, United States

A Quick Introduction to Public Health Funding in the United States

Written by Frank Hood- Associate Director of Policy and Partnerships at Hepatitis B Foundation!

 

The COVID-19 pandemic put a spotlight on why countries need a robustly funded public health system that can respond to the needs of its citizens quickly. In the United States, that public health system is a patchwork of federal, state, and local departments, agencies, and programs. Each has their own rules and regulations, which can be challenging to navigate. You might have a hard time seeing how it all works together without falling apart. And you might struggle to understand how resources can find their way to the local health centers and community-based organizations doing much of the important health work on the ground. This blog post provides a basic overview of how public health funding works within the United States. 

Hundreds of federal departments, agencies, and programs funnel money into the public health system of the United States. One of the more familiar organizations is the Department of Health and Human Services (HHS). Among its many health-related functions, HHS handles disease prevention and outbreak response through the Centers for Disease Control and Prevention (CDC) and provides health coverage for underserved and older Americans through the Centers for Medicare and Medicaid Services (CMS). Other departments like the Department of Agriculture (USDA) may not seem like a key source of health funding, and yet support dietary health initiatives and help states build rural medical facilities through infrastructure investment programs.

The amount of funding these departments, agencies, and programs receive varies yearly. Some funding, like for Medicare and Medicaid, doesn’t require an annual vote from Congress (known as “mandatory spending” in policy-speak) and is just paid for as expenses are incurred. Other funding, like for the Health Resources and Services Administration (HRSA), requires a yearly vote of Congress as well as sign-off by the President. This is known as discretionary spending. Most US public health programs fall in the discretionary spending category. That vote happens each year after the House and the Senate go through a formal process to determine how much money every department, agency, and program in the entire federal government receives. This process also includes specifying any special instructions or conditions associated with the funding like restrictions on how the money can be spent or requesting a status report on the impact of a specific program

If Congress can’t agree on funding levels by the start of the new fiscal year, then a government shutdown occurs. In those instances, any non-essential federal program funded by discretionary spending would be forced to suspend operations, while state and local programs would still be able to function but would not receive federal funds during that time.

Once Congress approves funding levels, federal funds and agencies begin the process of distributing money to their various internal programs and to states and other localities. In the simplest terms, many agencies will send money to states in the form of grants that the states apply for by listing how they would use the money and what positive impact it will have on the state. The amount of funding that passes down to states depends on the function of the agency. State health departments receive the largest percentage of their funding from federal sources, so the grant-making process can lead to states competing for limited federal funds. Federal funds make up anywhere between half and two-thirds of states’ total health funding.

Much of the remaining funding for state health departments comes from their state legislatures. Each state has their own specific process, but most states mirror the federal approach of having their legislatures determine how much state funding should be given to various departments, agencies, and programs in the state and any restrictions on the use of that funding. Other sources of public health dollars include fines, fees, charitable donations, and public-private partnerships.

 

 

 

 

 

 

 

 

 

 

 

Generally, state health departments send their dollars to local health departments, which deliver direct care or education on the ground. The funding the state keeps  is often used to pay for state-wide health systems like health surveillance, emergency response, and prevention education. How states determine where money goes varies, but there are usually similarities to how federal departments and agencies determine which states should receive what funding with grant applications.  

Once local health departments and community-based organizations have funding in-hand, they then must spend it according to the rules and regulations set by the source (Congressional instructions, federal agency requirements, state requirements, etc.).  

At this point, you see the complex tapestry of public health funding in action in your community: the health screenings at the local fair, the vaccine drives at your local place of worship, and even when your child brings home a pamphlet from a health educational program held at school. It’s all public health funding in action. 

In addition to public funds, some programs are funded in part directly through donations from people like you. If a public health program means a lot to you, see if you can help the organization who put it together by volunteering, spreading the word or donating. 

 

References:

https://www.cdc.gov/about/organization/mission.htm 

https://www.cms.gov/ 

https://www.usda.gov/our-agency/about-usda/mission-areas 

https://crsreports.congress.gov/product/pdf/R/R47106 

https://www.crfb.org/papers/qa-everything-you-should-know-about-government-shutdowns 

https://www.astho.org/topic/public-health-infrastructure/profile/#activities 

https://www.norc.org/PDFs/PH%20Financing%20Report%20-%20Final.pdf 

https://www.norc.org/PDFs/PH%20Financing%20Report%20-%20Final.pdf 

https://www.publichealthlawcenter.org/resources/state-local-public-health-overview-regulatory-authority 

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatitis B Prevention, Liver, Liver Health

Team Helpatitis: Students and Teachers Come Together to Raise Awareness of Hepatitis B in India! 

 

Hepatitis B is a critical public health crisis in India.  With over 40 million HBV carriers, it is estimated that over 115,000 people die each year from hepatitis B related causes and one million newborn babies are at risk of developing hepatitis B in India. 1 

In an effort to raise awareness for hepatitis B and contribute to the World Health Organization’s (WHO) viral hepatitis elimination plan, teachers and students at Amity International School in New Delhi, India launched Team Helpatitis to promote hepatitis B education.. Science teachers have integrated hepatitis B education in their extra-curricular activities to teach students about chronic hepatitis and liver health. School events and festivals have provided unique opportunities for students, teachers, and parents to come together and learn about the importance of prevention strategies like hepatitis B screenings in making India hepatitis free!  

Diwali Lamps Bring Hope and Awareness to the hepatitis B Cause in India 

During the month of Diwali, a religious festival of lights, Team Helpatitis students designed liver shaped oil lamps to promote awareness. These lamps are made from clay pots and are lit every year on Diwali to represent the transition from darkness into light in the coming new year. Students and teachers hope to combat the stigma and misconceptions associated with hepatitis B though these lamps. The lamps were distributed to school students and teachers to bring home and share the important message of hope and resilience with their friends and families. 

 

 

 

 

 

The liver shaped lamps were sculpted, packaged, and distributed by the students and teachers to raise awareness of hepatitis B during the Diwali festivities at their school.

Pin-O-Liv: Dart Throwing Competition to Understand the Difference between Good and Bad Liver Habits! 

The Winter Carnival at Amity International provided a platform for students to showcase their learning outside of the classroom and educate attendees about healthy and unhealthy habits for their liver. The students chose an interactive sport to keep the players informed and entertained. They created a dartboard with pictures representing good and bad lifestyle habits and their impact on the liver. Before the game, players were briefed on liver health and ways to keep the liver healthy and safe. Players were given five darts and challenged to hit the images with unhealthy habits.

 

 

 

 

 

 

 

 

 

Students participate in the dart-throwing competition to “kill” the bad habits that destroy our liver

Livbola: Students reinvent tambola to promote hepatitis B education among children and adults 

Tambola is a slightly different version of Bingo and is a beloved pastime of south Asian communities. The students were given a short presentation on hepatitis B and liver cancer. They were then introduced to the rules of the game and were quizzed on questions related to hepatitis and liver health. Prizes were distributed to players to encourage participation. The players included students, school staff, and community members.

 

 

 

 

 

 

School staff, students, and parents play the Livbola game during their annual winter carnival

The Hepatitis B Foundation was recently approached by the teachers at Team Helpatitis for a live session on hepatitis B. The Foundation met with the students and teachers via zoom a few weeks ago and discussed the physical, social, and financial impact of hepatitis B.  We also discussed the importance of preventative strategies like vaccines in promoting positive health outcomes for all communities.  

 

 

 

 

 

The students and teachers of Amity International School met with the Foundation for an introductory session on hepatitis B on zoom.

 

By participating in these activities, projects, and festivities with the help of their school’s leadership and administration, Team Helpatitis has expanded their reach beyond the classroom and amplified the voices of public health workers, advocates, and people living with hepatitis B! Check out Team Helpatitis’ social media channels to stay updated! 

Team Helpatitis’ Instagram:  https://www.instagram.com/helpatitis_aisv1_yppteam/ 

 

References: 

chrome extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.who.int/docs/default-source/searo/india/health-topic-pdf/factsheet-b-hepatitisday2016.pdf?sfvrsn=da61ef0_2#:~:text=In%20India%2C%20the%20prevalence%20of,D%2C%20followed%20by%20Aand%20C. 

Premkumar, M., & Kumar Chawla, Y. (2021). Chronic Hepatitis B: Challenges and Successes in India. Clinical liver disease, 18(3), 111–116. https://doi.org/10.1002/cld.1125 

 

300 Million Reasons, advocacy, HBV, Hepatitis B Advocacy

2022 Advocacy Year in Review

As we wrap up 2022, we hope you’ll take some time to look back and celebrate the exciting and important hepatitis B policy and advocacy achievements of the past year! Community partners and grassroots advocates around the world came together to advance our shared advocacy goals and working toward the elimination of hepatitis B.  

  

 

 

 

 

 

 

 

 

 

 

 

This year we celebrated big wins in the U.S. including:  

Congressional Funding for Pennsylvania Center of Public Health Excellence  

With the passage of the Fiscal Year (FY) 2022 Omnibus Appropriations Act in March, the Hepatitis B Foundation received $475,000 to create a Center of Public Health Excellence focused on hepatitis B elimination by providing expert resources, advice, training, capacity building and technical assistance for state and local partners on how to best prevent, treat and control hepatitis B, and to increase the rate of adult vaccination and testing for hepatitis B. The Center of Public Health Excellence was one of nine community projects that Congressman Brian Fitzpatrick secured funding for in the FY 2022 Omnibus. 

 

Implementing Universal Hepatitis B Recommendations   

In April, universal hepatitis B vaccination for adults aged 19-59 became official recommendation. HBF immediately embarked on a dissemination campaign to raise awareness of the new guidelines amongst various stakeholder groups. HBF also launched the Hepatitis B Vaccination and Screening Advisory Council, which is comprised of key stakeholders from the provider and patient advocate communities and hepatitis B experts. The Council held a two-day meeting in June to develop implementation strategies for universal hepatitis B vaccination and screening (expected in 2023) and will publish its findings in a white paper. 

 As our network of grassroots advocates and storytellers continues to grow, we have also expanded our involvement in state/local advocacy and global advocacy. Our ongoing advocacy efforts in the U. S. include calling on Optum to restore the hepatitis B treatment Vemlidy back to their health insurance formulary. Globally we continue to put pressure on Gavi to move forward with implementation of hepatitis B birth dose in member countries, urging members of Congress and President Biden to help end hepatitis B discrimination in the U.S. military, recognizing National African Immigrant and Refugee HIV and Hepatitis Awareness (NAIRHHA) Day in the U.S., advocating for universal adult hepatitis B screening, and increasing funding for hepatitis B and liver cancer. 

 

Updated U.S. Public Health Service Corps Medical Standards  

The U.S. Public Health Service (USPHS) Commissioned Corps announced in December that it is updating its medical standards to accept future applicants living with chronic hepatitis B and HIV. Previously, HIV and hepatitis B infection were both considered disqualifying medical conditions. The Hepatitis B Foundation became aware of this issue in late 2020, when an individual with hepatitis B applied to serve but was denied due to their hepatitis B infection. Working alongside partners, we successfully advocated for a change in this policy by meeting with senior administration official and Congressional champions, and getting language included in the FY 2022 House Labor-HHS Appropriations report urging the USPHS to allow officers with hepatitis B to serve in the Commissioned Corps.  

  

Check out the report to learn more!  

https://www.hepbunited.org/assets/Advocacy/5d40b3bcc9/2022-HBU-Year-in-Review-Final.pdf 

  

From all of us at the Hepatitis B Foundation and Hep B United, THANK YOU for your continued support and dedication to advocating for hepatitis B awareness, prevention, treatment, and research and combatting stigma and discrimination. We are so proud of what the hepatitis B advocacy community achieved this year, and we look forward to continuing to work together to build on the momentum of these accomplishments in 2023! 

HDV, Hepatitis D Drug Development, Hepatitis Delta (HDV), Research

What You Need to Know About the 2022 Liver Meeting and How It Relates to Hepatitis Delta

 

 

 

 

This year, the annual Liver Meeting, hosted by the American Association for the Study of Liver Diseases (AASLD), was held in Washington, D.C. The featured presentations included new innovations in liver transplant surgery, disease modeling (which is a process that uses cells to show how a disease develops and to test possible treatment approaches), and drug development. While an effective, functional cure for hepatitis B virus (HBV) is still 5-10 years away, researchers, scientists, healthcare providers, and people with lived experience all came together and agreed that more needs to be done to reduce the burden of liver diseases and improve health outcomes now. One highlight of the meeting was Dr. Francis Collins, former director of the U.S. National Institutes of Health and special advisor to President Biden, hosting a special session to introduce a national hepatitis C elimination plan for the U.S. Unfortunately, this plan is focused on hepatitis C. As a response, the Hepatitis B Foundation will soon send an advocacy letter pushing for the inclusion of hepatitis B and hepatitis delta in this plan. Make sure you are signed up for our Action Center alerts to stay engaged with hepatitis B advocacy efforts.

Of particular note at this year’s meeting were the presence of many patient advocates and people with lived experience, and an increased focus on hepatitis delta. One important hepatitis delta poster presentation was delivered by Dr. Tatyana Kushner of Mount Sinai Hospital in New York City, entitled “HDV Patient Perspective: The Impact of Disease and Current Unmet Needs.” By including the perspectives of people living with hepatitis delta virus (HDV), this study aimed to empower the patient community. Dr. Kushner and her colleagues collected data on people’s quality of life to identify unmet needs, barriers and gaps in HDV care (including disease management and access-to-care inequities).

The researchers found that a person’s care is affected in two ways: In the care they receive for their clinical diagnosis and their emotional journey after diagnosis. The participants’ experience of care was often negatively impacted by having a delayed HDV diagnosis, and limited access to specialized care and tolerable treatment options. Findings describe that the lack of specific and acceptable treatment options for hepatitis delta left people with little hope, which put an emotional burden on their life post-diagnosis. Due to the gaps in providers’ knowledge of HDV, participants held little trust in their healthcare providers. The study participants also shared that they suffered emotionally due to the stigma attached to their diagnosis.

Dr. Kushner and her colleagues call for an increased effort to educate healthcare providers on hepatitis delta, as their lack of HDV-specific knowledge drives health disparities or differences between groups, where one group is more burdened by a disease than the other. These are driven by unequal opportunities to achieve good health (CDC, 2020). Health disparities are preventable, and educating providers is the first step to overcoming these inequalities. Educating providers on HDV will lead to more rapid identification of the disease, as they will have a better understanding of the signs, symptoms and risk factors for hepatitis delta. Increasing advocacy efforts for point-of-care testing for both HBV and HDV in the U.S. will increase levels of testing and earlier identification of people at risk for the diseases. Timely diagnosis allows for people to be linked to specialty care earlier, ultimately improving health outcomes. Improving community awareness of HDV will combat stigma and likely reduce testing hesitancy, which can improve health outcomes. The researchers call for drug developers to meet the needs of the patient community by developing tolerable and hepatitis delta-specific treatments.

In terms of drug development, researchers presented on antiviral treatments for people living with HDV and discussed preferred outcomes of treatment, based on what they believed to be most helpful to each individual’s physical health. To understand these treatment considerations, it is important to review how HDV functions. Hepatitis delta virus (HDV) uses a person’s RNA (ribonucleic acid) to produce and replicate the virus, so high HDV RNA levels in the blood indicate severe infection, and low or undetectable HDV RNA levels indicate that the virus is not rapidly reproducing (Stephenson-Tsoris & Casey, 2022). A virological response is defined as a long-term period of low-level replication that leads to undetectable HDV RNA levels in the blood six months after stopping treatment, and this indicates viral suppression (Yamashiro et al., 2004). A biochemical response is defined as normalization of alanine aminotransferase (ALT) levels after antiviral treatment (Kim et al., 2022). When liver cells are damaged, they release ALT into the bloodstream, so high levels of ALT indicate that one’s liver is diseased or damaged (MedlinePlus, n.d.). ALT normalization is considered a good indicator that antiviral therapy is working because it means that there is less liver damage, liver disease is less severe, and people living with HBV/HDV are at less risk of harm (Kim et al., 2022).

One study of interest from the meeting was the D-LIVR study by Eiger BioPharmaceuticals, Inc.: Lonafarnib Global Study in Chronic Hepatitis Delta. This study consisted of 400 participants, who were all on treatment for 48 weeks, then followed up with researchers 24 weeks after treatment. In total, 50 participants received pegylated interferon (Peg IFN) treatment for 48 weeks; 125 participants received a combination of Lonafarnib, Ritonavir and Peg IFN; and 175 participants received the oral antiviral therapy Lonafarnib and Ritonavir. There were also 50 people on a placebo treatment. A placebo is a harmless pill that has no effect on a person, and is often used in clinical trials to test the effectiveness of a specific treatment being studied, in this case, Peg IFN, Lonafarnib and Ritonavir (Harvard Health Publishing, 2021). The researchers decided that they wanted to see a decline in HDV RNA (virologic response) and normalization of ALT (biochemical response) at week 48 as their study’s main outcome or proof that the treatment could work. In this study, an acceptable virologic response was defined as a “2log decline of HDV RNA levels,” which means they wanted to see HDV RNA levels decrease by 99% from the original levels that were measured before starting treatment (Wikipedia, n.d.).

Pegylated interferon (Peg IFN) is a protein-based medication that prompts the body to activate its natural immune system (induce innate antiviral response) (Zhang & Urban, 2021; Drugbank, n.d.). For Peg IFN-based treatments, researchers determine that undetectable HDV RNA six months after stopping treatment is desirable. However, researchers emphasize the importance of yearly HDV RNA post-treatment screening to monitor for viral relapses after treatment. For long-term treatment (over 48 weeks), a 99% reduction of HDV RNA concentration levels is an appropriate virologic response for non-interferon-based treatments, but more studies must be done to establish whether a person living with hepatitis delta is actually benefiting from the treatment (this is called clinical benefit). When establishing the clinical benefits for non-interferon-based treatments (or any new treatment), researchers can measure delays in disease progression or improvement of signs and symptoms of the disease, which includes symptom relief, improved functioning and improved survival rates (Lee, n.d).

Based on a variety of extensive studies (not just D-LIVR), the researchers decided to combine virologic and biochemical responses to try to demonstrate the clinical benefit of using ongoing antiviral treatment as a functional cure for hepatitis delta. They concluded that acceptable endpoints for HDV treatment studies include undetectable HDV RNA six months after stopping treatment, the loss of the hepatitis B surface antigen (HBsAg), and ALT normalization in people living with chronic hepatitis delta. This can also be considered a functional cure since there are undetectable levels of HBsAg and HDV RNA in the blood for a sustained period of time, even after finishing treatment (Wong et al., 2022).

While there is still time before we overcome the burden of hepatitis delta, the presentations from The Liver Meeting show us that researchers and scientists are constantly working to improve the lives of people living with hepatitis delta. Development toward a functional cure is progressing, and advocates are incorporating peoples’ lived experiences and perspectives into drug development and education. Collaboration between all these groups is the best way to move forward in the fight against hepatitis delta.

For more information on hepatitis delta, you can visit the Hepatitis Delta Connect website or review this hepatitis delta fact sheet.

References

Centers for Disease Control and Prevention. (2020). Health disparities. Centers for Disease Control and Prevention, Division of Adolescent and School Health, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. https://www.cdc.gov/healthyyouth/disparities/index.htm 

Drugbank. (n.d.). Peginterferon alfa-2a. Drugbank. https://go.drugbank.com/drugs/DB00008

Harvard Health Publishing. (2021, December 13). The power of the placebo effect. Harvard Health Publishing, Harvard Medical School. https://www.health.harvard.edu/mental-health/the-power-of-the-placebo-effect 

Kau, A., Vermehren, J., & Sarrazin, C. (2008). Treatment predictors of a sustained virologic response in hepatitis B and C. Journal of Hepatology, 49(4), 634-651. https://doi.org/10.1016/j.jhep.2008.07.013

Kim, S. H., Cho, E. J., Jang, B. O., Lee, K., Choi, J. K., Choi, G. H., Lee, J. H., Yu, S. J., Kim, Y. J., Lee, Y. B., Yoon, J. H., Kim, J. W., Jeong, S. H., & Jang, E. S. (2022). Comparison of biochemical response during antiviral treatment in patients with chronic hepatitis B infection. Liver International: Official Journal of the International Association for the Study of the Liver, 42(2), 320–329. https://doi.org/10.1111/liv.15086 

Lee, J. (n.d.). Defining Clinical Benefit in Clinical Trials: FDA Perspective [Presentation]. U.S. Food and Drug Administration, Center for Drug Evaluation and Research. https://celiac.org/main/wp-content/uploads/2015/04/great3-07.pdf 

MedlinePlus. (n.d.). ALT blood test. National Library of Medicine (U.S.). [updated August 3, 2022]. https://medlineplus.gov/lab-tests/alt-blood-test/ 

Raman, S. (2022 October 25). Administration eyes national hepatitis C treatment plan. Roll Call: Policy. https://rollcall.com/2022/10/25/administration-eyes-national-hepatitis-c-treatment-plan/ 

Stephenson-Tsoris, S., & Casey, J. L. (2022). Hepatitis delta virus genome RNA synthesis initiates at position 1646 with a nontemplated guanosine. Journal of Virology, 96(4), e0201721. https://doi.org/10.1128/JVI.02017-21 

Wikipedia. (n.d). Log reduction. https://en.wikipedia.org/wiki/Log_reduction

Wong, G. L. H., Gane, E., & Lok, A. S. F. (2022). How to achieve functional cure of HBV: Stopping NUCs, adding interferon or new drug development?. Journal of Hepatology, 76(6), 1249–1262. https://doi.org/10.1016/j.jhep.2021.11.024

Yamashiro, T., Nagayama, K., Enomoto, N., Watanabe, H., Miyagi, T., Nakasone, H., Sakugawa, H., & Watanabe, M. (2004). Quantitation of the level of hepatitis Delta virus RNA in serum, by real-time polymerase chain reaction—and its possible correlation with the clinical stage of liver disease. The Journal of Infectious Diseases, 189(7), 1151–1157. https://doi.org/10.1086/382133

Zhang, Z., & Urban, S. (2021). New insights into HDV persistence: The role of interferon response and implications for upcoming novel therapies. Journal of Hepatology, 74(3), P686-699. https://doi.org/10.1016/j.jhep.2020.11.032

Baruch S. Blumberg Institute