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Tag Archives: chronic hepatitis B

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

Podcast Recaps: A Global Perspective on Stigma and Discrimination Against Hepatitis B

August 17, 2023 hepbtalk

B Heppy Recap: A Global Perspective on Stigma and Discrimination Against Hepatitis B

Catherine Freeland is the Associate Director of Public Health Research at the Hepatitis B Foundation. As a researcher and founder of the Foundation’s Hepatitis B Discrimination Working group, Dr. Freeland shares more about the impact of discrimination and stigma as it pertains to people living with hepatitis B.

What is the difference between stigma and discrimination?

It’s important to understand stigma and discrimination are different. Stigma is a social process that is characterized by being excluded, rejected, and devalued because of the social judgement associated with a certain condition. Although the literature on the topic is limited, it has been shown that stigma related to hepatitis B has negatively impacted the quality of life for those living with hepatitis B around the globe. Discrimination is different in that it is characterized by the laws and behaviors that limit opportunities for growth. For example, denying access to education or work because someone is living with hepatitis B is a form of discrimination. Discrimination is often a result of stigma.

What are the causes for stigma and discrimination as it pertains to hepatitis B?

Lack of knowledge and understanding about hepatitis B in the community is a root cause of stigma and discrimination. Most people are unaware of what hepatitis B is and how it can be transmitted. This often results in rumors, myths and misconceptions spreading in the community and unfortunately can alienate people living with hepatitis B.

How does stigma and discrimination against hepatitis B affect the lived experiences of people in the community?

When myths and misconceptions spread about hepatitis B in the community, people with lived experience often face discrimination. A lot of people are required to undergo health screenings prior to starting employment. If they test positive for hepatitis B, they can be denied employment and/or can be fired from their jobs in many parts of the world. It can then be difficult to find another job and support their families. For people who wish to get employment visas to work abroad, they are required to undergo health screenings. In the Philippines and the Gulf Coast (Bahrain, Kuwait, Oman, Qatar, Saudi Arabia and the United Arab Emirates countries), it is common practice to deny employment visas to people living with hepatitis B. In some countries and cultures, pre-marital screening. We have also heard cases of individuals living with hepatitis B experience more challenges in custody of their children in divorce or separation cases.

How can we address these challenges and what is the Foundation doing to support people experiencing discrimination?

It is important for people with lived experience to speak up and share their experiences of stigma and discrimination. At the Hepatitis B Foundation, we have a discrimination registry where people can fill out survey responses pertaining to any discrimination, they are facing in their home countries. The survey is free and open access. We also have a working group of experts consisting of people with lived experience and community leaders and partners. By raising awareness about discrimination, we are working towards changes in policy across the globe to reduce stigma, improve lives, and give people living with hepatitis B a voice that matters. Ultimately everyone has a role to play in addressing discrimination and it starts with education and sharing accurate information on hepatitis B and advocating against this discrimination and stigma.

Listen to the full episode here!

300 Million Reasons, About Hepatitis B, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Hepatitis B Treatment, Liver, Liver Cancer, Liver Cancer Awareness Month, Living with Hepatitis B

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

October 5, 2022 hepbtalk

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:

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.
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.
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?

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.
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.
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:

HBV, Hepatitis B Awareness, United States

CHIPO Partner Highlight: United States Coalition for African Immigrant Health

August 31, 2022 hepbtalk

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 and is comprised of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the U.S. 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 immigrant communities, and increasing rates of screening, vaccination, and linkage to care. This month, we are excited to highlight the work of one of our newer national partners, the United States Coalition for African Immigrant Health, Inc., (USCAIH) and their Executive Director, Janet Afoakwah. Please enjoy a recent interview with Janet, as she describes her work, including successes and challenges, and the positive impacts she and USCAIH have had through their annual conferences and upcoming plans for expanding their portfolio and mission.

Could you please introduce yourself and your organization?

My name is Janet Afoakwah, and I am now the Executive Director of the United States Coalition for African Immigrant Health (USCAIH), previously known as the United States Conference on African Immigrant Health. USCAIH began as the National African Immigrant Project in 2005, supported by the U.S. Office of Minority Health, which provided a platform for national and regional conferences focused on African immigrant (AI) health. These conferences continue to be held on a yearly basis and attract a broad range of attendees, including federal agencies, academicians, researchers, policy makers, public health officials, students, community organizations, and a variety of other stakeholders. We are very excited because this year, in addition to hosting our annual conferences, we are going to be broadening the scope and focus of our work to include other services.

Could you tell me a little bit about what some of USCAIH’s programs are that specifically address hepatitis and other health concerns in African communities?

As we move forward into 2023 and beyond, USCAIH is going to be working toward achievement of some broader goals, including coalition-building; providing technical support to organizations working with AI communities; offering trainings and support in cultural sensitivity for direct-service organizations, especially those working in the areas of HIV and hepatitis, since this is such a crucial component of engaging with AI communities; organizing and expanding our website with important and relevant resources; collaborating and forming partnerships with like-minded organizations; inviting researchers to share their work with the community via a new podcast format; and providing a database where researchers working on AI health can consolidate their findings for direct use and application within communities. Data and research about African immigrants often are not disaggregated from that about African American and Black populations, so getting a clear picture of the health and health disparities impacting AI communities can often be difficult.

Is USCAIH focused in a specific geographic area or does it have more of a national reach?

Our conferences are both regional and national, and we also try to include researchers and organizations from many countries within Africa itself. The other services that we are hoping to expand will be focused on AI communities within the U.S., but all around the country.

Which countries are primarily represented in the African diaspora that USCAIH serves?

We work with folks from all countries and communities. We have been able to reach some communities a bit more effectively, due to existing relationships that our staff has with community members, but our hope is to eventually reach all AI communities within the U.S.

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?

The biggest missed opportunities are in vaccination and screening for both hepatitis B and liver cancer. This gap is due to a variety of reasons, including general lack of health insurance and lack of funding for supportive programs, as well as inequities in healthcare access in general for many immigrant communities, which contribute to greater health disparities. Another large barrier is the lack of provider knowledge about the high risk of hepatitis B in AI communities.

The best ways to overcome some of these challenges are in the creation and sustainability of programs that are centered on AI communities and are culturally and linguistically competent – this is SO important. Another key element in breaking some of the barriers around cultural humility and especially provider awareness is in establishing partnerships and effective collaborations. Building awareness among trusted community and faith leaders, who in turn can pass this on to community members, is also critical. We have been able to launch and disseminate a podcast that covers health issues affecting AI communities, and we try to feature researchers and guests with lived experience of different health challenges, including hepatitis B, in order to raise awareness, dispel myths and misperceptions, and bring the severity of different health concerns into perspective. We are also working to consolidate resources on our website and to have all partners providing direct services around the country listed on there for easy navigation and connection.

Other more broad-sweeping, policy-level changes that need to happen include making hep B screening recommendations universal for all adults; and improving and centralizing linkage to care systems.

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?

This is a big concern and one of the steps we have recently taken to address this is hosting a roundtable discussion intended to educate healthcare providers and professionals about hepatitis B and how to care for community members who might be living with HBV. Better provider education and linkage to care needs to be the order of the day. Community-based organizations should be supplementing the services that providers are offering. One big important change that can occur is for electronic medical records to include an automatic question about hepatitis B screening for all patients. All of this can be done with additional funding and support from the federal and state levels.

Do you see this issue as being connected to other concerns facing African immigrant communities?

Yes, there are a variety of health concerns that face AI communities in the U.S, many of which require similar approaches of cultural sensitivity and community and provider awareness to address. These include diabetes, heart disease, hypertension, and various forms of cancer.

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

I am passionate about hepatitis B and that is what actually got me into public health. I came into this work having previously led an HIV project at another organization. I love every aspect of my work! My favorite moments are in organizing conferences because they move so fast, have many moving parts, and are SO rewarding! These conferences are widely recognized as the premier gathering for discussing AI health – many organizations of all types are interested in presenting and sharing their work. The conference planning is tremendously collaborative and is an all-volunteer effort. Now, as Executive Director, I can see the whole picture of the conferences and the organization as a whole and am so excited to continue to be working on our old and new endeavors. Hosting the podcast has been a great experience as well, and a wonderful tool to interview a variety of people working in AI health, to raise awareness about important health topics like hepatitis B and to amplify the mission of USCAIH.

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 just want to emphasize the importance of practicing cultural and linguistic competency, and of working in collaboration and establishing relationships with a variety of partners (including community- and faith-based organizations, health centers, and providers) and how important this is for community work. Establishing trust (which requires time and patience) and providing appropriate resources also cannot be overstated. Continuing to host conferences in order to have a space where ideas can be shared and collaborations can happen is key, and hopefully we can all work together to develop and execute a strategic plan of sorts for improving health and eliminating disparities in African immigrant communities in the U.S.

Thank you so much for taking the time to speak with me today and for sharing more about the great work USCAIH has done and will continue into the future!

Thank you!

About Hepatitis B, Hepatitis B Awareness, Liver, Liver Health

What is the Difference Between hepatitis B and Fatty Liver Disease?

August 24, 2022 hepbtalk

Many people have trouble understanding the relationship between chronic hepatitis B (HBV) infection and Non-Alcoholic Fatty Liver Disease (NAFLD). While research studies are ongoing and the association between hepatitis B and NAFLD is indeed complex, a chronic hepatitis B infection does not cause NAFLD. It is important to understand both diseases independently of one another before studying the correlation between the two.

Hepatitis B and fatty liver disease both can damage the liver. This is why it is important to understand the role of the liver in maintaining overall health and well-being. The liver is an essential organ in your body and is responsible for supporting digestion and regulating nutrients. It plays a crucial role in removing toxic substances from your body.

Worldwide, almost 300 million people are living with hepatitis B. Hepatitis B is transmitted through direct contact with infected blood, unprotected sex with an infected individual, use of contaminated medical or injection equipment, and most commonly, from an infected mother to her newborn during childbirth. A chronic (lasting longer than six months) hepatitis B infection can damage the liver and may progress to more serious conditions like cirrhosis, fibrosis, and even liver cancer. While hepatitis B is a major public health problem, it can be prevented through a safe and effective vaccine. And even though hepatitis B is a serious disease, most people live healthy and productive lives with effective management and treatment.

NAFLD is caused by the excess accumulation of fat in the liver not related to alcohol use. Over time, this may lead to inflammation or swelling and liver damage. There are two types of NAFLD: 1). Non-Alcoholic Fatty Liver (NAFL) or Simple Fatty Liver and 2) Non-Alcoholic Steatohepatitis (NASH). Someone who has NAFL has fat buildup in their liver. Someone who has NASH also has liver damage and liver inflammation, which can lead to cirrhosis, liver cancer, and may even result in the need for a liver transplant. Type II Diabetes and obesity puts an individual at a higher risk for contracting NAFLD. In the United States, around 20% to 40% of individuals are living with NAFLD. The good news is that NAFLD can be reversed with changes in diet, physical activity patterns, and seeing a doctor regularly.

It is possible to have both NAFLD and hepatitis B. If you are living with both, the impact of the virus on an already inflamed and compromised liver can lead to liver damage. With excess fat stored in liver cells, the virus can easily replicate without the protection from healthy liver cells and progress to a more severe form of liver disease like cirrhosis, fibrosis, or cancer at a much faster rate.

Like hepatitis B, NAFLD should not be taken lightly as it can lead to serious health problems. It is important to consult with your doctor to find any concerns with your liver.

For more information, please visit the National Institute of Digestive Disease and Kidney Diseases (NIDDK) or the Fatty Liver Foundation.

References:

https://www.health.harvard.edu/blog/fatty-liver-disease-what-it-is-and-what-to-do-about-it-2019011015746

https://www.medicalnewstoday.com/articles/nash-fibrosis#causes

About Hepatitis B, HBV, Hepatitis B Research, Liver, Liver Health, Living with Hepatitis B, United States

Announcing the New Current Patient Opportunities Page on the HBF Website

October 28, 2020 hepbtalk

A new page has been created on the Hepatitis B Foundation’s website that contains a compilation of various opportunities available for people living with hepatitis B. These opportunities can be for clinical trials, other types of research, or toolkits with information and resources for those living with hepatitis B and their loved ones and community members. All of these postings are produced or organized by entities external to HBF, but all are related to improved quality of life and liver health. The first two of these opportunities are listed below.

New Tool from CME Outfitters

A new HBV Patient Education Hub has been compiled by continuing medical education company CME Outfitters. The hub includes a great deal of valuable information, such as an overview of hepatitis B, a list of questions to ask your healthcare provider, a patient guide, information about hepatitis B co-infection, doctors’ advice on what to expect from treatment, and many other resources. All information is in an engaging and accessible format. Check it out today!

New Study Opportunity Available for People Living with Itching (Cholestatic Pruritus) Due to Liver Disease or Injury

A new paid opportunity has become available for those experiencing itching caused by hepatitis B, hepatitis C, drug-induced liver injury, auto-immune hepatitis, or primary sclerosing cholangitis (PSC). If you live in Canada or the US and have this condition, you may be eligible to participate in an interview to help researchers better understand your lived experience. The new research study is seeking participants ages 12-80 living in the US and Canada who are living with this itch. This is an opportunity to be involved in research and help advance scientific understanding! Contact the research coordinator for more information and to check if you are eligible.

Please note that this study does not include treatment and pruritus must be at an intensity level of 4 on a scale of 1-10 for at least the past 8 weeks in order to participate. Patients cannot be pregnant or breastfeeding or have a diagnosis of primary biliary cholangitis.

We are very excited to unveil this new section of our website and hope it will be a useful resource for many going forward! Please check back often, as more opportunities will be posted as they arise.

Hepatitis B Advocacy, Living with Hepatitis B

#Tri4ACure: From Hepatitis B Diagnosis to Advocating for a Cure

May 15, 2019 hepbtalk

Meet Edwin Tan – a 29-year-old mechanical design engineer from Minneapolis, Minnesota! In 2014, Edwin was diagnosed with hepatitis B. Like many others living with hepatitis B, his diagnosis was a shock. Before his diagnosis, all he knew was that he was banned from giving blood to the Red Cross, but no one had explained the reason why. A routine blood test provided no explanations either, so his doctor decided to test for hepatitis B. The test revealed that Edwin was living with chronic hepatitis B.

After his diagnosis, Edwin decided to learn all that he could about the infection. Through his research, he found that one of the best ways to keep his liver healthy was through small lifestyle changes. Edwin began to pursue healthier life choices by increasing the amount of exercise he was getting and paying closer attention to his diet. Although he loved craft beer, he knew that drinking could be extremely dangerous to those with liver infections, so he willingly gave up all alcohol. Edwin’s dedication to a more active lifestyle led him to challenge himself by competing in local races and triathlons.

Edwin’s journey led him to realize that there is a lack of awareness about hepatitis B. He noticed that the stigmas facing those living with hepatitis B could take a physical and mental toll on an individual and impact how they viewed themselves. Edwin’s observations inspired him to reach out to the Hepatitis B Foundation to raise money and awareness for hepatitis B research, patient outreach, and education. Since his passion for racing was discovered due to his commitment to health after his diagnosis, it seemed appropriate for him to use his love of sports to fundraise for hepatitis B awareness and research! He hopes that his athletic achievements help others living with hepatitis B to realize that they are more than their infection.

Now, Edwin is training for a series of six races—triathlons, a marathon and an ironman – and we’ll be with him every step of the way! You can make a gift to support Edwin’s fundraising efforts here.

“I want to be a positive example against the stigma associated with Hep B and the shame that some people may feel for having it. Completing an Ironman, which is regarded as one of the most difficult one-day athletic events, serves as a good example that we each can accomplish anything we want as long as we believe in ourselves.”

To follow updates on Edwin’s journey, you can follow the Hepatitis B Foundation or Hep B United on Facebook. Be sure to use the hashtag #Tri4ACure!

Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B

Recently Diagnosed with Hepatitis B? Getting Through the Next Months Waiting to Confirm if Your Infection is Acute or Chronic

June 22, 2018 hepbtalk 255 Comments

Have you recently been told you have hepatitis B? Dealing with the diagnosis and waiting out the next six months to determine if your infection will resolve itself or learning that it is a chronic infection can be nerve-wracking.

Fortunately, greater than 90 percent of healthy adults who are newly infected will clear or resolve an acute hepatitis B infection. On the hand, greater than 90% of babies and up to 50% of children infected with hepatitis B will have lifelong, chronic infection. Sometimes people are surprised to learn they have a chronic infection. It can be confusing since there are typically few or no symptoms for decades. If a person continues to test hepatitis B positive for longer than 6 months, then it is considered a chronic infection. Repeat testing is the only way to know for sure.

Acute hepatitis B patients rarely require hospitalization, or even medication. If you are symptomatic, (some symptoms include jaundice, dark urine, abdominal pain, fever, general malaise) you may be anxiously conferring with your doctor, but if you are asymptomatic, you might not feel compelled to take the diagnosis seriously. Ignoring your diagnosis can be very serious. If you have concerning symptoms like jaundice (yellow eyes and skin), a bloated abdomen or severe nausea and vomiting, please see your doctor immediately. Your doctor will be monitoring your blood work over the next few months to see if you clear the virus, or monitoring your liver if there are concerning symptoms.

Your job is to start loving your liver …today. STOP drinking alcoholic beverages. Refrain from smoking cigarettes. Your liver is a non-complaining organ, but you cannot live without it. Make your diet liver-friendly and healthy filled with a rainbow of vegetables and fruits, whole grains, fish and lean meats. Minimize processed foods, saturated fats and sugar. Drink plenty of water.

Talk to your doctor before taking prescription medications, herbal remedies, supplements or over-the-counter drugs. Some can be dangerous to a liver that is battling hepatitis B. Get plenty of rest, and exercise if you are able.

Don’t forget that you are infectious during this time, and that loved ones, sexual partners and household contacts should be tested to see if they need to be vaccinated to protect against hepatitis B. Sometimes family members or close household contacts may find that they have a current infection or have recovered from a past HBV infection. If anyone fears exposure, ensure them that hepatitis B is not transmitted casually. They should get tested, and vaccinated if needed, and take simple precautions. Remind them that 1/3 of the world’s population will be infected with the hepatitis B virus during their lifetime.

On the flip-side… Do not let this new hepatitis B diagnosis consume you. As the weeks and months pass, you might find that the infection is not resolving, and you might worry that you have a chronic infection. The associated stress and anxiety can be challenging, even overwhelming. It can contribute to physical symptoms you may be experiencing. Find a family member, friend, or health care professional with whom you can share your concerns.

If you are told you have recovered from an acute HBV infection (you are now HBsAg negative, HBcAb positive and HBsAb positive) be sure to get copies of your lab reports to ensure there are no mistakes. Compare them with our easy to use blood tests chart. If something looks wrong, or if you’re confused, speak up and ask your doctor. Once confirmed, be sure to include hepatitis B as part of your personal health history. This is important in case you have conditions requiring treatment later in life that might once again warrant monitoring of your hepatitis B. It is possible for a past HBV infection to reactivate if a person requires longterm immune suppressing drugs .

No one wants to learn they have chronic hepatitis B but it is a manageable disease. You’ll want to see a doctor with experience treating chronic HBV so they can run additional tests. There are very effective treatments available, though not everyone with chronic HBV needs treatment. All people living with chronic HBV benefit from regular monitoring since things can change with time. Please do not panic or ignore a chronic hepatitis B diagnosis. Take a deep breath and get started today learning more about your HBV infection and the health of your liver. Things are going to be okay!

If you are confused about your diagnosis, please feel free to contact the Hepatitis B Foundation at info@hepb.org.

Hepatitis B Advocacy, Living with Hepatitis B

Who is Ted Slavin? #virusappreciationday

October 3, 2017 hepbtalk

“We will long remember Ted Slavin as a gallant man who loved life and who contributed greatly to our research efforts”

-Baruch S. Blumberg, Irving Millman, W. Thomas London, and other members of the Division of Clinical Research Fox Chase Cancer Center, 1985¹

“Who is Ted Slavin? Why haven’t I heard about him before?” crept into my mind as I was reading The Immortal Life of Henrietta Lacks. Rebecca Skloot wrote a short snippet about Ted Slavin, detailing the story of a hemophiliac who sold his antibodies and aided Dr. Baruch Blumberg in the discovery of the link between the hepatitis B virus and liver cancer, which eventually led to the first hepatitis B vaccine.² I was surprised that I had never heard of him, and that his name was not enshrined on the walls of the Hepatitis B Foundation. I see the smiling and jovial face of Dr. Blumberg nearly every time I walk into the office, but never the image of a man who contributed so much to his efforts.

Ted Slavin developed antibodies against hepatitis B after receiving infected blood transfusions to treat his hemophilia. The blood he received back in the 1950s was not screened for any diseases. His doctor helped him realize that his blood was valuable because of the copious amounts of antibodies for hepatitis B. At the time, those antibodies were a hot commodity as scientists were conducting research to learn more about hepatitis B prevention and treatment. Slavin decided to the sell his antibody-rich blood and even donated his blood to Dr. Blumberg’s research team at Fox Chase Cancer Center. He later formed Essential Biologicals, a company that collected blood from others like him. They were everyday patients who could turn their rare or unique blood into money making products, while at the same time advancing important research into diseases that were not well understood.²

As I read the brief overview of Slavin’s life, I initially perceived him as someone who was both lucky and smart: Slavin was lucky because his doctor gave him information on the value of his antibodies²; and smart because he knew how to make the best of something once considered a burden in his life.³ As I did a little more detective work, I realized Ted Slavin was not just a guy who made money off his cells, but someone who contributed to the fight against the hepatitis B virus, which I am passionate about!

My detective work led me to a deeper understanding of Mr. Slavin and his contribution to important milestones on the road to hepatitis B elimination.^3,4,5,6,7 I found discussions and case studies on the ethics associated with his circumstance. Through my research journey, I learned more about him and my perception of Slavin started to change. He was, like many, struggling to make ends meet. He didn’t entirely profit off his antibodies because he donated a majority of the money he made to advance scientific research.⁴ At the same time, Slavin was “hopeful for a cure,” and he trusted Dr. Blumberg, his favorite researcher among the many studying hepatitis B, with his antibodies.¹ To Dr. Blumberg and the researchers working with him, Ted Slavin was a brave, courageous man who helped save millions of lives.¹

The story of Ted Slavin, like that of Henrietta Lacks, is not only a reminder of the importance of bioethics and the need for public health and scientific research; his story reminds us there is an invisible face behind every success. Because of Ted Slavin, there are tests to diagnose hepatitis B, ways to detect liver cancer linked to hepatitis B, and the first cancer preventative vaccine!

For more information about the hepatitis B vaccine, please visit our website here.

For helping looking for the hepatitis B vaccine, you can go here or to the HealthMap Vaccine Finder.

References:

Lavin, EFS. (2013). Exploring Life and Death at the Cellular Level: An Examination of How Our Cells Can Live Without Us. Quadrivium: A Journal of Multidisciplinary Scholarship, 5(1),
Skloot, R. (2010). The Immortal Life of Henrietta Lacks. Crown Publishing Group.
Ted Slavin’s Story and more. Retrieved from: http://tissuerights.weebly.com/ted-slavin.html
Skloot, R. (2006, Apr 16). Taking the Least of You. The New York Times Magazine. Retrieved from: http://www.nytimes.com/2006/04/16/magazine/taking-the-least-of-you.html
Angsana T. (2010, Nov 9). Second Story from Ted Slavin. Retrieved from: http://angsanat.blogspot.com/2010/11/second-story-from-ted-slavin.html
C, Anna. (2012, Jul 26). World Hepatitis Day: The History of the Hepatitis B Vaccine. Retrieved from: http://advocatesaz.org/2012/07/26/world-hepatitis-day-the-history-of-the-hepatitis-b-vaccine/

Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B

The Medical Community Wakes Up to a Dangerous Threat to People with Hepatitis B – Coinfection with Hepatitis D

June 7, 2017 hepbtalk 2 Comments

By Christine Kukka

In the U.S. and around the world, the medical community is finally acknowledging a hidden threat to people with hepatitis B – a virulent liver coinfection that requires the presence of the hepatitis B surface antigen (HBsAg) to survive.

Hepatitis D (Delta), which causes the most severe liver infection known to humans, infects between 15 to 20 million people worldwide and an estimated 20,000 people living with chronic hepatitis B in the U.S.

For years, health officials assumed hepatitis D did not threaten Americans and occurred primarily in Central Asia and Sub-Saharan Africa. However, recent U.S. Centers for Disease Control and Prevention (CDC) studies found 4 to 5 percent of Americans with chronic hepatitis B are also infected with hepatitis D.

As a result of these findings, researchers including Hepatitis B Foundation‘s Medical Director Dr. Robert Gish, are now pushing medical organizations to establish hepatitis D testing and monitoring guidelines so doctors will start testing patients for this dangerous liver disease.

Recently, the foundation sponsored a webinar, attended by dozens of healthcare providers, patients and officials from around the world, in which Dr. Gish outlined whom should be tested for hepatitis D, and how it should be treated. A new webinar that examines hepatitis D prevalence in the U.S. is scheduled for 3 p.m. (EST), Wednesday, June 28. To register for the webinar click here.

How do people get infected with hepatitis D? Infection occurs when people are exposed to blood and body fluids from someone with an active hepatitis D infection. Basically, they get both hepatitis B and D in one exposure. This is called an acute coinfection. Some healthy adults are able to clear both infections, but they often experience serious liver damage during the clearance or recovery phase.

Another way to become infected is if someone infected with chronic hepatitis B is exposed to someone with hepatitis D. This is called a superinfection, and in 90 percent of cases, people with chronic hepatitis B will also develop chronic hepatitis D.

Who is at risk of hepatitis D? Anyone with chronic hepatitis B who themselves or their family comes from Sub-Saharan Africa, China, Russia, Middle East, Mongolia, Romania, Georgia, Turkey, Pakistan and the Amazonian River Basin should be tested. Hepatitis D rates in some of these countries can reach up to 30 percent in people infected with chronic hepatitis B.

What medical conditions suggest hepatitis D? Anyone with chronic hepatitis B who is not responding to antiviral treatment, or who has signs of liver damage even though they have a low viral load (HBV DNA below 2,000 IU/mL) should be tested. Fatty liver disease (caused by obesity) and liver damage from alcohol or environmental toxins should be ruled out before testing for hepatitis D.
Often, people with hepatitis D have low viral loads (even if they are hepatitis B “e” antigen HBeAg-positive), but they have signs of liver damage, including elevated liver enzyme (ALT/SGPT) levels.

Do hepatitis B antivirals work against hepatitis D? No. The hepatitis D virus (HDV) is structurally different from the hepatitis B virus (HBV) and does not respond to tenofovir and entecavir used to treat hepatitis B. Hepatitis B antivirals will lower HBV DNA, but they don’t reduce HBsAg, which HDV need to thrive and reproduce.

How is hepatitis D treated? The only proven hepatitis D treatment is pegylated interferon. Interferon cures hepatitis D 15 to 25 percent of the time after one year of treatment. Once interferon clears hepatitis D, doctors treat patients who continue to be infected with HBV with antivirals. There are dozens of research companies now looking into hepatitis D treatment, and if researchers can find a cure for hepatitis B that eradicates HBsAg, it will also be effective against hepatitis D.

How should people with hepatitis D be monitored? According to Dr. Gish, doctors should:

Monitor patients’ ALT/SGPT and liver function at least every six months
Perform an ultrasound of the liver and conduct a liver cancer biomarker panel (including AFP, AFPL3% and DCP) every six months;
And, perform viral load (HBV DNA) and HDV RNA testing every six months.

How is hepatitis D prevented? The hepatitis B vaccine prevents hepatitis D infection, as does use of safe sex and safe injection practices. According to Dr. Gish, all hepatitis B-positive pregnant women should be tested for hepatitis D if they or their families are from a country with high rates of hepatitis D, or if they have signs of liver damage — even if they do not come from a region with high hepatitis D rates.

If a pregnant woman is infected with either hepatitis B and/or hepatitis D, immunizing her newborn with the first dose of the hepatitis B vaccine within 12 hours of birth and giving the baby a dose of HBIG (hepatitis B antibodies) will prevent both infections.

Bottom line, if you are infected with chronic hepatitis B, you should be tested for hepatitis D if:

You or your family comes from a region with high rates of hepatitis D; and/or
You have a low viral load, but you continue to have signs of liver damage, indicated by elevated ALT/SGPT or an ultrasound exam of your liver, if your doctor has ruled out fatty liver, NASH or alcohol-related liver damage.

Talk to your doctor about getting tested. Click here for a hepatitis D fact sheet to give to your doctor and click here for a patient-oriented fact sheet. An affordable hepatitis D test has recently become available in the U.S. For more information, click here.

Find answers to frequently-asked-questions about hepatitis D here.
To watch the webinar featuring Dr. Gish discussing the hidden, hepatitis D epidemic, click here.

Hepatitis B Diagnosis & Monitoring, Hepatitis B Treatment

Doctors Get a New Tool to Improve Hepatitis B Treatment and Monitoring

February 22, 2017 hepbtalk 22 Comments

By Christine Kukka

A recently-approved test now allows doctors to measure exactly how much hepatitis B surface antigen (HBsAg) people with chronic hepatitis B have in their blood; so why should patients get this test and how will it help the millions of people around the world infected with hepatitis B?

According to experts, including the Hepatitis B Foundation’s Medical Director Robert Gish, knowing a patient’s HBsAg levels gives doctors:

A better understanding of what stage of hepatitis B a patient is in;
A more accurate assessment of a patient’s liver cancer risk; and
Essential information to judge if it’s time to start or stop treatment.

And in the future, this test may be critical to finding a cure.

Don’t labs already test for HBsAg? HBsAg, the protein that makes up the surface of the virus, is what labs look for in a blood sample to determine if a person is currently infected with hepatitis B.

Historically, labs determined only if HBsAg was present or not, which is why patients either tested positive or negative for HBsAg. Recently, countries outside the U.S. began measuring HBsAg quantities in blood samples and late last year became available in the U.S. as a federally-approved (CLIA) lab test from Quest Diagnostics.

Hepatitis B Foundation President Timothy Block

“The strange thing about HBsAg, is that each hepatitis B virus requires only about 100 HBsAg molecules to provide its envelope protein, but the virus produces about 100- to 1 million-times more HBsAg than is needed, leaving millions of HBsAg circulating in the bloodstream,” explained Timothy Block, president of the Hepatitis B Foundation and the Baruch S. Blumberg Institute, the foundation’s research arm.

That over-abundance of HBsAg is why people continue to test positive for HBsAg even if they have an undetectable viral load (HBV DNA).

Why is there so much HBsAg? Researchers, including Block, suspect that in addition to covering the virus’ surface, HBsAg also serves as a decoy to “exhaust” or deflect our immune system’s:

T-cells, so they can’t attach to and attack the virus,
And B-cells, so they don’t generate the antibodies needed to destroy the viral antigens that make up the virus.

So when HBsAg levels decline–either due to treatment or a strong immune response to the infection–researchers know a patient is on the road to clearing the infection. Bottom line: A low or undetectable HBsAg level means patients are winning the war against hepatitis B and their risk of liver damage is greatly reduced.

When should doctors measure HBsAg? According to Quest Diagnostics, which created the test, measuring HBsAg levels better identifies which patients are at risk of hepatitis B reactivation.

For example, a patient may be HBeAg-negative and have normal liver enzymes (ALT/SGPT) that indicate a liver is “healthy,” but if HBsAg remain high, doctors know a patient remains at risk of reactivation and hasn’t really entered the safer, “inactive” stage.

Quest maintains that measuring HBsAg and viral load (HBV DNA) together, “…improves the ability to differentiate the phases in HBeAg-negative patients and HBeAg-positive disease and results in a diagnostic accuracy of 70 to 94 percent.”

According to Quest, patients with HBV genotype B or C who have low HBV DNA levels (less than 2,000 IU/mL) and HBsAg levels below 1,000 IU/mL have lower risk of liver damage and cancer. In fact, if HBsAg is under 100 IU/mL, patients may be on their way to clearing HBsAg from their blood.

Knowing for sure when treatment is working: HBsAg levels also reflect the amount of virus protein produced by infected liver cells and if treatment is effectively stopping the virus from producing these proteins. If a patient is treated with pegylated interferon, a decline in HBsAg during the first 12 weeks indicates a successful response to the drug. No change in HBsAg levels indicates interferon will not be effective.

HBsAg changes may also determine if antivirals are working. “In HBeAg-negative patients, low (HBsAg) levels at the end of treatment are associated with sustained virologic response,” Quest officials noted.

If patients have been treated with antivirals for many months or years and achieve undetectable viral load and low HBsAg levels, doctors may consider taking them off the drug.

Dr. Gish considers this new test an essential tool that providers should employ and patients should ask for to get an accurate picture of their infection state and liver cancer risk.

“I use it today to determine when to start treatment, assess a patient’s prognosis while on treatment, enhance patient compliance and determine when treatment can be stopped or should be continued,” he explained. “And this will also be an extremely helpful tool for drug developers in the future to identify promising treatments.”

Because lowering or eradicating HBsAg appears essential to stopping chronic infection and empowering the immune system to fight this complex infection, researchers around the world are working to develop treatments that inhibit HBsAg.

“I am a big believer in finding drugs that suppress HBsAg,” Dr. Block noted. Two of these surface antigen eradicator products are currently in Phase II trials.