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CHIPO Partner Highlight: Great Lakes Peace Centre

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Arafat: Thank you very much!

HBV

What Can We Do During National Minority Health Month?

As March wraps up and we look to April, let’s celebrate National Minority Health Month!

This month is all about building awareness around the disproportionate burden of premature death and illness in minority populations and encouraging action through health education, early detection, and control of disease complications. 

Why is There a Disproportionate Burden of Hepatitis B in African and Asian and Pacific Islander Populations?

To address this, we first must know some background information. The hepatitis B virus was discovered in 1965 by Dr. Baruch Blumberg, and the recombinant vaccine was approved in 1986. Almost 300 million individuals across the globe are living with chronic hepatitis B. Hepatitis B is a virus that affects your liver. Left untreated, it does damage to your liver and could lead to fibrosis, cirrhosis, or liver cancer.

Multiple factors influence why hepatitis B is so common in African and Asian Pacific populations. Hepatitis B is an ancient virus, and because it is transmitted through blood contact, it has been spread from generation to generation throughout Asia and Africa. Many countries have effective vaccination programs that have drastically slowed transmission over the past 15 years – but some countries, where up to 10% of the population has hepatitis B, still don’t provide universal vaccination to newborns, children or adults – so hepatitis B transmission remains high. Additionally, lack of awareness regarding hepatitis B transmission, lack of hepatitis B testing and data, stigma and hepatitis B related discrimination also play roles in the continued spread of hepatitis B in endemic regions.

In WHO Africa Region, 81 million people are living with hepatitis B, 116 million in the Western Pacific Region, and 18 million in the South East Asian Region.1 In the US, hepatitis B primarily impacts communities of color, especially 1st and 2nd generation Americans.

So, what does this mean for you in the context of hepatitis B during National Minority Health Month?

What Can You Do National Minority Health Month? 

Those from communities that are highly impacted by hepatitis B, including Asian Americans, Pacific Islanders, and people of African origin, are at higher risk for having hepatitis B. If you do not know your hepatitis B status, go get tested and encourage your family members and close contacts to get tested as well. Testing for hepatitis B is very simple and if your test results show that you need vaccination, there is a safe and effective vaccine.

Did you know that most transmission occurs from mother to child, due to the exchange of blood during the childbirth process? If you are expecting a baby, be sure your doctor tests you for hepatitis B – this way, the doctor can be sure that your baby gets the appropriate shots at delivery to prevent them from getting infected. If you live in the United States, health insurance, including Medicare and Medicaid, should cover the cost of hepatitis B testing for pregnant women. Find out more about the birth dose here.

We know getting tested for hepatitis B can be challenging. Schedules can conflict, the associated cost can be a barrier, and sometimes we do not want to find out our status due to possible stigma and discrimination. The good news is that you can reach out to your local clinic or community center to link to testing and vaccination for a low or at no cost with a culturally sensitive provider that might be able to speak your native language. Finding out our hepatitis B status can be scary. However, it is important to know because there are effective treatments for hepatitis B.

Find a testing and vaccine provider here!

Next, you can help create and build awareness of hepatitis B in your community. Do you and your community use social media like WhatsApp, Facebook, Twitter, and Instagram? You can share hepatitis B information with them here from the Know Hepatitis B Campaign from the Centers for Disease Control and Prevention (CDC) or follow the Hepatitis B Foundation on social media to share our posts with your friends and followers.

What Can Providers Do During National Minority Health Month? 

Providers also have a responsibility during National Minority Health Month. Providers can help educate their patients about hepatitis B, especially those at higher risk, and talk about testing and vaccination. Recently, the CDC’s Advisory Committee on Immunization Practices recommended universal hepatitis B vaccination for all adults ages 19-59. Healthcare practitioners should incorporate this recommendation into their practice to help reduce the number of new cases of hepatitis B in the United States.

Working together, we can commemorate National Minority Health Month and eliminate hepatitis B-related health disparities for the future!

References

  1. https://www.who.int/news-room/fact-sheets/detail/hepatitis-b
  2. https://www.pewresearch.org/fact-tank/2020/08/20/key-findings-about-u-s-immigrants/

About Hepatitis B, HBV, Living with Hepatitis B

Feelings of Sadness and Hepatitis B? – You Are Not Alone!

 

Why Did This Happen to Me? 

Being diagnosed with hepatitis B can be scary and maybe you feel like you can’t tell anyone, but you are not alone. Living with hepatitis B is more common than you think, about 300 million people are living with hepatitis B worldwide! You might be wondering how could this happened to me?

Did you know that hepatitis B is an ancient virus? It has been around for thousands of years, is most common in Africa, Asia, and the Western Pacific. And transmission of the virus is almost always from mother-to-child, due to the blood exchange during labor and delivery. Most people with chronic hepatitis B infection were infected at birth or during early childhood. There are other, less common ways hepatitis B can be transmitted through unsterile medical or dental equipment, unprotected sex, or unsterile needles.

Feeling Sad After Your Hepatitis B Diagnosis?

 Sometimes after our diagnosis, we might feel overwhelmed with emotions. These emotions could be anger, sadness, anxiousness, numbness, or maybe a combination of everything. It never hurts to ask someone for some help. Consider going to a therapist. Talking to a therapist, especially if you’ve always kept your hepatitis B a secret, can help you get a better handle on your hepatitis B diagnosis. It can be freeing to talk to another person and have them support you on your emotional and physical health journey. If you don’t have access to a therapist or prefer to be more anonymous, you can join online support groups. Hep B Community is a great resource if you are in need of online global support – they are dedicated to connecting people affected by hepatitis B with each other and with verified experts in the field, who provide trustworthy and accurate advice.

You can also incorporate healthy habits into your lifestyle like taking daily walks, mediation, or incorporating any exercise you enjoy. Eating healthy, with lots of fruits and vegetables can make you feel better inside as well!

Can I Take Anti-Depressants with Medication for Hepatitis B?

 Sometimes, if we have persistent sadness for a long time it can be diagnosed as depression. Luckily, depression can be treated with medication called antidepressants. Antidepressants generally do not harm the liver, unless you have severe, pre-existing liver damage (such as cirrhosis), are older, or are taking several medications at once.

According to research, about 0.5 percent to 3 percent of those taking antidepressants may develop very mild elevation in their liver enzymes (called ALT or SGPT), which indicate mild liver damage. It is a good idea to talk to your doctor about this. If you already have liver damage, or you/your doctor are concerned, your doctor can monitor your ALT/SGPT levels more frequently than usual during your first weeks of antidepressant treatment, especially if your ALT/SGPT level is already elevated.

The antidepressants that may cause the highest risk of moderate liver damage,  include monoamine oxidase (MAO) inhibitors, tricyclic/tetracyclic antidepressants, nefazodone, bupropion (Wellbutrin, also used for ADD and smoking cessation), duloxetine and agomelatine.Drugs with lower risk of causing liver damage include citalopram, escitalopram, paroxetine (Paxil) and fluvoxamine.

Among the most common antidepressants used today is fluoxetine (Prozac).  According to the National Institutes of Health LiverTox report,  in people with no pre-existing liver infections or damage, “Liver test abnormalities have been reported to occur rarely in patients on fluoxetine (less than 1 percent), and elevations (in ALT/SGPT) are usually modest and usually do not require dose modification or discontinuation.”

Feeling sad and depressed is normal reaction to receiving news that you have hepatitis B. However,  hepatitis B does NOT define you and a gentle reminder is that you can live a long and healthy life with hepatitis B.

About Hepatitis B, HBV, Living with Hepatitis B

Zero Discrimination Day

Every year, UNAIDS marks March 1st as Zero Discrimination Day. This year, Zero Discrimination Day highlights “the urgent need to take action to end the inequalities surrounding income, sex, age, health status, occupation, disability, sexual orientation, drug use, gender identity, race, class, ethnicity and religion that continue to persist around the world”.

Although hepatitis B affects about 300 million people worldwide, hepatitis B related discrimination still is pervasive. In fact, the Hepatitis B Foundation has been documenting these inequalities through our Discrimination Registry. Since May of 2021, we have documented over 250 cases of hepatitis B related discrimination from all over the globe. Of these cases, 213 individuals experienced discrimination personally and 151 knew of people who were discriminated against. Within these reports, people have described instances where they have been denied employment or lost employment due to their hepatitis B status or had been denied educational opportunities or immigration to another country. The top 10 countries where people have reported hepatitis B related discrimination are the Philippines, Nigeria, India, Pakistan, United States, Ghana, Uganda, Ethiopia, Bangladesh, and Sierra Leone. The Hepatitis B Foundation is aware that discrimination is happening around the world and encourages people to report any discrimination on the registry here.

Notably, the United States is in the top 10 countries where people have reported hepatitis B discrimination. Most of the reporting within the United States comes from individuals in the military living with hepatitis B. Currently, the military in the United States and many countries unethically prohibits individuals with hepatitis B to serve due to outdated guidelines. Now, since most individuals within the military setting should be vaccinated against hepatitis B and with the accessibility of hepatitis B antiviral therapy which can control the virus, the risk of transmission is extremely low. These guidelines should be updated to reflect national policies in the United States that prohibit discrimination. In the broader setting of the U.S. outside of the military, it is illegal to discriminate against people living with hepatitis B. The Americans with Disabilities Act (ADA) prevents employers, institutions, and other organizations from discriminating against an individual based on their hepatitis B status. The Hepatitis B Foundation hopes to one day end hepatitis B related discrimination not only in the United States, but also globally.

Ending hepatitis B related discrimination globally will require incredible effort from multiple partners like governments, organizations, community advocates, and people living with hepatitis B. The first step is demonstrating that discrimination is a serious issue around the world that impacts one’s life in a variety of ways, both economically and psychologically. The discrimination registry that we launched in 2021 will help us document discrimination around the world and help us determine areas of focus. We want to publish and share what we find from this registry so academic partners, policy leaders, advocates and health professionals can be made aware of the current situation and challenges people living with hepatitis B face. We hope to maintain this registry so we can assist people experiencing hepatitis B related discrimination. And we want to create a global movement to enact change, advocating for ending policy and practice that allows for discrimination, and instituting policies that protect people with hepatitis B worldwide. But we need your help – people living with hepatitis B, and people who have faced discrimination, are the most important partners in this effort! We need you as partners, to maintain the registry and fight hepatitis B related discrimination, and ensure the fight for equality continues. We are currently fundraising to keep the Discrimination Registry going and expand on these plans to help fight discrimination globally.

This fight against discrimination will take some time! Change does not happen overnight. Improving awareness, growing an advocacy movement, engaging leaders and decision makers, and especially changing policy, can take years – but we must continue our work together. The Hepatitis B Foundation has long been dedicated to assisting in discrimination related causes. In fact, the Hepatitis B Foundation played a key role in a landmark settlement by the U.S. Department of Justice that established protection for people with hepatitis B under the Americans with Disabilities Act (ADA). That effort took three years to see policy change once we took up the fight, but it was worth it to have protections in place for people with hepatitis B. Learn more in our Know Your Rights section.

On Zero Discrimination Day, March 1st, and moving forward, please continue to use your voice to speak out against discrimination. If you need assistance please fill out the Discrimination Registry to document your experience and the Hepatitis B Foundation will try its best to assist you and navigate you through it.

About Hepatitis B, HBV

Progress on the Cure: Update From Timothy Block

A primary goal of the Hepatitis B Foundation has always been to find a cure for the disease. When we ask Dr. Timothy Block, The Hepatitis B Foundation’s president and co-founder, about progress towards a cure by the many scientists worldwide working on that challenge, he considers many different angles.

The clinical definition of a cure Dr. Block favors is for someone who has hepatitis B to regain the liver health and low liver cancer risk enjoyed by someone without hepatitis B. That goal is considered too ambitious by most clinicians. A more realistic goal is sustained, drug-free, virological response for people living with hepatitis B. This means that a person for whom treatment has stopped has the same low (undetectable) viral load as when they were actively being treated on drug therapy. This already happens in a small percentage of patients and is associated with an improved clinical outcome: much less likelihood of developing serious liver disease, including liver cancer.

There is a new wave of drugs being evaluated now that Dr. Block believes may provide a sustained virological response, possibly when used in combinations with the current “standard of care”. Promising examples are what’s known as capsid inhibitors, siRNAs, NAPs/STOPs and entry inhibitors.  There are even modifications of the polymerase inhibitors that have potential. As you can see in our Drug Watch page, at least 40 new treatments are now in clinical trial.

The reason it has been so difficult to find a cure for hepatitis B, Dr. Block explained, is that the virus has been around for hundreds of thousands of years and has established a mechanism to coexist with its host in a way that avoids a person’s immune system. It burrows its DNA into the nucleus of cells and is incredibly difficult to attack in ways that don’t harm the patient.

Another reason progress toward a cure has been slow, Dr. Block says, is that people with hepatitis B are simply too polite. Without a grassroots movement, hepatitis B will never get the attention and funding that other similar diseases have received.

“The hepatitis B community of scientists and stakeholders is incredibly innovative and collaborative, but we are small and underfunded,” he says. “We have made great progress in the 30 years since we started the Foundation, but that’s with a fraction of what has been spent on other diseases.”

With development of the effective COVID-19 vaccines, over the past year, we have all seen what can be done when the scientific community and governments rally around a public health crisis. “This shows that, with the right amount of money and focus, we can find a cure faster,” Dr. Block said.

“So, please, don’t be ashamed or scared of your hepatitis B diagnosis,” he added. “Seek treatment, take good care of yourself, and spread the word. Hepatitis B can be eliminated in our lifetime – we just need the support.”

You can hear more from Dr. Block about the cure on our podcast, B Heppy, at https://bheppy.buzzsprout.com/1729790/8998405

About Hepatitis B, HBV, Hepatitis B Awareness

Happy National Family History Day!

It’s National Family History Day on November 25th! Today is the perfect time to sit down and talk to your family about health; it gives your loved ones an opportunity to provide the gift of a healthy future! As hepatitis B rarely has any symptoms, many people do not discover that they are infected until a family member is diagnosed or they develop liver damage or liver cancer.  

Approaching the topic and starting the conversation can help to break this cycle of transmission within families and allow your loved ones to protect themselves. If you need some tips on how to start the discussion on family health, you can check out our blog post here! 

Your family’s health history tells a powerful story. It guides us on what behaviors to avoid and actions that we can take to prevent developing certain illnesses or diseases. It can also help inform us on how to best navigate the health system. Do I need to be tested for liver cancer? Is the medication that I’m taking actually dangerous to my health?  

When a family member is living with or has lived with hepatitis B, family health history can become even more critical to creating a healthy future. Hepatitis B is one of the world’s leading causes of liver cancer, so it is extremely important to be aware of your risk! Although hepatitis B is not genetic or hereditary – it is only spread through direct contact with infected blood or through sexual contact – multiple family members can be infected without knowing. This is because hepatitis B often does not have any symptoms and can be spread from mother to child during childbirth or by sharing sharp objects such as razors, toothbrushes, or body jewelry that may contain small amounts of infected blood. Knowing about a family members’ current or past infection is a signal to get tested for hepatitis B using the 3-panel hepatitis B blood test (HBsAg, HBsAb, HBcAb). Testing is the only way to be sure of your hepatitis B status. The test will let you know if you have a current infection, have recovered for a past infection, or need to be vaccinated.  

Why does this matter if myself or a family member has recovered from a past infection?  

If someone has recovered from a past infection (either acute or chronic), this is great news! Loss of the hepatitis B surface antigen may be exciting, but it does not mean that you don’t need to proceed with caution! Recovery from a past infection means that while the virus is no longer in your blood, it is still living in the liver in an inactive state. You cannot infect anyone else at this stage, but family members, and sexual partners should still get tested for the 3-panel hepatitis B blood test (HBsAg, anti-HBc, anti-HBs) because they may have been exposed in the past. Check out this helpful fact sheet on what it means to have recovered from an acute or chronic infection! 

A past infection should be a part of all medical records as well. Various medications and treatments for other conditions, such as cancer or Rheumatoid arthritis have the potential to reactivate the virus that is sleeping in your liver.  Some medications can suppress the immune system, which gives hepatitis B a chance to reawaken and attack the liver. Healthcare providers need to be aware if you had a past infection so that they can monitor you and potentially prescribe medications to prevent the virus from reactivating in your body.  

Not every treatment will cause hepatitis B to reactivate, so it is important to be aware of the ones that carry a risk! Any treatment that suppresses the immune system such as chemotherapy and other cancer therapies, and certain arthritis, Crohn’s disease, Ulcerative colitis, asthma, and psoriasis drugs may pose a risk of hepatitis B reactivation. You can find a list of specific drug names and their risk levels on our website, but you should always consult your doctor or provider for the most accurate information.  

Every medication also comes with a warning label that you should read carefully. This section will let you know if there is a risk of reactivation. You can also use the National Institute of Health’s LiverTox website to search the name of the treatment and see if there is a risk! 

Talking to Your Family  

Hepatitis B may increase a person’s risk of liver disease and liver cancer but with knowledge of an infection, you can take measures to help manage it. For family members who have not been infected, they can take action to prevent future infection by getting vaccinated! Many people assume that they have already been vaccinated, but this is not always the case. Globally, adult completion rates of all 3 doses of the vaccine are low, meaning that most adults are vulnerable to infection. The vaccine is highly effective and is the best form of protection against the virus. Don’t assume you have been vaccinated; check your immunization records or ask your doctor!  

Spending your holiday talking about health may not sound like fun, but it is extremely important – it may even change your life! Set 30 minutes aside to sit down with your loved ones and talk about any diseases or disease risk factors, that are in your family. Awareness is the key to prevention! 

 

About Hepatitis B, HBV

Caregivers and Hepatitis B

November is National Family Caregivers Month. This month we celebrate and recognize the caregivers who take care of and support their family members 24/7. People living with hepatitis B or advanced liver disease might need a caregiver. Oftentimes, family members step in and fulfill this role. Being a caregiver is a tough, but noble job. Caregivers to someone living with hepatitis B might have to manage medications, doctors’ appointments, and oversee their overall health. This blog will highlight the challenges associated with caregiving and provide supportive resources.

Hepatitis B disproportionately affects Asian, Pacific Islander, and African populations. In fact, around 59% of those U.S. residents with chronic hepatitis B in the U.S. in 2018 emigrated from Asia, 19% from the Americas and 15% from Africa. It can be hard for people living with chronic hepatitis B to receive culturally appropriate care in the U.S., where English is the primary language. Caregivers of individuals living with hepatitis B might have to provide these translation services at doctors’ appointments, which can be difficult to juggle for caregivers who also work and/or take care of families – and some may find it difficult to discuss sensitive health information on behalf of their loved ones.

Taking time to be with a family member at the doctors’ office can sometimes be difficult, especially if the caregiver is working a full-time job. Often companies can be understanding of family obligations, but sometimes caregivers’ occupations do not allow them to be at appointments, making them take time off, which can become a financial burden.

Additionally, a study in China1 “suggested that the annual direct cost for patients with chronic hepatitis B infection, compensated cirrhosis, decompensated cirrhosis or primary liver cancer were $4,552, $7,400.28, $6,936 and $10,63, respectively, which were catastrophic expenditures for the households of the patients”. This financial burden can take a considerable toll on a caregiver’s mental health. Caregivers often worry about the health of their family members living with hepatitis B, but and can have financial concerns regarding the cost of managing a chronic illness, and potentially lost wages.

It is normal for caregivers to experience burnout. Providing around-the-clock care can be difficult. Below are some resources for caregivers experiencing burnout.

Resources for Caregivers

  1. Join – Join a support group. Hep B Community is a global peer-led, volunteer-driven forum to support those living with and affected by hepatitis B. They are dedicated to connecting people affected by hepatitis B with each other and with verified experts in the field, who provide trustworthy and accurate advice.
  2. Listen – In our newest B Heppy podcast episode, Caregiving and Hepatitis B, we chat with Kim, who was a caregiver for her father living with hepatitis B. She talks about her caregiving experience and gives advice to other caregivers of people living with hepatitis B. You can listen to the episode here.
  3. Take Time – It is important for caregivers to take time for themselves. You need to stay healthy yourself to be an effective caregiver for your family member living with hepatitis B. This can mean taking walks, meditating, setting boundaries, and practicing stress management.
  4. Read – Does someone in your close circle have hepatitis B? Check out the CDC and Hep B United Know Hepatitis B campaign’s fact sheet, “When Someone in the Family has Hepatitis B”. This fact sheet has basic information about hepatitis B and the importance of testing and vaccinating family members. The fact sheet is available in 13 Asian and African languages as well as three English versions focused on Asian American, Native Hawaiian, and Pacific Islander, and African immigrants –  Download the fact sheet here.

 

Reference

  1. Ren, Hong & Yu, Yan & Hu, Jia-Yu & Shi, Yang & Lu, Yihan & Meng, Wei. (2014). Caregiver burden and its determinants among family members of patients with chronic viral hepatitis in Shanghai, China: A community-based survey. BMC infectious diseases. 14. 82. 10.1186/1471-2334-14-82.

 

 

Author: Evangeline Wang

Contact Information: info@hepb.org

HBV, Liver, Liver Health

Your Environment and Your Liver

October is Liver Cancer Awareness Month! This month let’s celebrate your liver for all it does for your body! This blog post will talk about how your environment, where you live, work, and play, affect your liver.

A healthy functioning liver (no advanced fibrosis/cirrhosis) is busy and effectively manages toxins daily. If your body was an automobile, your liver would be considered the engine. It does hundreds of vital things to make sure everything runs smoothly. Some of the most important functions of the liver include:

  • Stores vitamins, sugar, and iron to help give your body energy.
  • Controls the production and removal of cholesterol.
  • Clears your blood of waste products, drugs, and other poisonous substances.
  • Makes clotting factors to stop excessive bleeding after cuts or injuries.
  • Makes immune factors and removes bacteria from the blood to fight infection.
  • Releases a substance called “bile” to help digest food and absorb nutrients

How Does Lifestyle Affect My Liver?

Eating healthy for your liver is so important! The Hepatitis B Foundation encourages all people living with hepatitis B to eat a healthy diet, get regular exercise, and incorporate healthy habits in their day-to-day life. Some suggestions include:

Diet Changes

  • Avoid drinking alcohol and smoking since both will hurt your liver, which is already being injured by the hepatitis B virus.
  • Eat a healthy diet of fruit, whole grains, fish and lean meats, and a lot of vegetables. “Cruciferous vegetables” in particular — cabbage, broccoli, cauliflower — have been shown to help protect the liver against environmental chemicals.
  • Limit foods and drinks with added sugars including sodas, fruit juices, desserts, packaged snacks, and other foods that contain added sugar. Limit foods containing saturated fats including fatty cuts of meat and foods fried in oil.
  • Avoid eating raw or undercooked shellfish (e.g. clams, mussels, oysters, scallops) because they could be contaminated with a bacteria called Vibrio vulnificus, which is very toxic to the liver and could cause a lot of damage.
  • Check for signs of mold on nuts, maize, corn, groundnut, sorghum, and millet before using these foods. Mold is more likely to be a problem if food is stored in damp conditions and not properly sealed. If there is mold, then the food could be contaminated by “aflatoxins,” which are a known risk factor for liver cancer.

Household Changes

  • Avoid inhaling fumes from paint, paint thinners, glue, household cleaning products, nail polish removers, and other potentially toxic chemicals that could damage your liver.

Personal Care Changes

  • Wearing makeup is sometimes part of our everyday life or used on occasion. We can absorb products through our skin and into the liver. Sometimes makeup products that are applied to the facial area (high absorption area) contain harmful chemicals to your liver. People living with hepatitis B should look on labels for these 4 ingredients which are toxic to your liver.
  1. Phthalates including di-n-butyl phthalate (DBP) and di(2-ehtylhexyl) phthalate (DEHP)
  2. Lauryl sulfate (SLS) and sodium laureth sulfate (SLES)
  3. Diethanolamine (DEA), triethanolamine (TEA), amonoethanolamine (MEA)
  4. Propylene / butylene glycol (PG)

Ultimately, making healthy decisions about your liver is up to you. There will always be risks associated with different things you put in or on your body; it is your choice to outweigh these risks vs. benefits for yourself.

References:

 

Author: Evangeline Wang

Contact Information: info@hepb.org

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

The Importance of Liver Surveillance

October is Liver Cancer Awareness Month! This blog will discuss the importance of liver surveillance if you are living with hepatitis B.

Hepatitis B as a Major Risk Factor for Liver Cancer

Although liver cancer is the sixth most common cancer in the world, it is the second most common cause of cancer deaths. Many people do not realize that chronic hepatitis B is the primary global risk factor for developing liver cancer. Certain viruses, including hepatitis B, can cause hepatitis, which translates to “inflammation of liver.” The virus attacks the liver and weakens its ability to perform important tasks like filtering toxins from your blood and maintaining the level of sugar in your blood. Chronic (long-term) infection with hepatitis B or hepatitis C viruses can lead to liver cancer. Worldwide, hepatitis B is very widespread, making it a priority when it comes to the prevention of liver cancer. Approximately 292 million people around the world are living with hepatitis B.

Why Should I be Screened?

 Early detection of liver cancer can save lives! Regular screening for liver cancer and early detection are the most effective ways to improve treatment success and survival rates. Early detection of liver cancer results in more treatment options, which greatly improves the chances of survival after initial diagnosis. For patients in whom liver cancer is detected at an early stage and before symptoms occur – while the tumor is small and can be surgically removed – the 5-year survival rate can sometimes be more than 50%. This is why regular liver cancer screening is so important.

If you have cirrhosis or other known risk factors for liver cancer, make sure your health care provider screens you for liver cancer during your medical visits. Finding the cancer early may increase the chance of successful treatment. Your health care provider may refer you to a hepatologist, a doctor who specializes in liver diseases. Hepatologists have the most experience in managing chronic hepatitis B and C infections, including regular screening for liver cancer.

How Often Should I be Screened?

Liver cancer screening can be done as part of your regular visit to the health care provider who manages your hepatitis B. The American Association for the Study of Liver Diseases (AASLD) recommends that liver cancer screening include ultrasound of the liver every 6 months. If you are living with hepatitis B and are not getting screened every 6 months for liver cancer, you should ask your healthcare provider to start!

Listen and Learn!

The Hepatitis B Foundation’s podcast B Heppy has an episode out: Liver Cancer and Hepatitis B. In this episode, they chat with Dr. Kenneth Rothstein of University of Pennsylvania about the relationship between liver cancer and hepatitis B. He gives insight into herbal medicines, treatment options, liver surveillance, and important questions patients should ask their healthcare provider. Listen for more: https://bheppy.buzzsprout.com

 

 

Author: Evangeline Wang

Contact Information: info@hepb.org

About Hepatitis B, HBV, Liver, Liver Cancer

October is Liver Cancer Awareness Month!

Aside

October marks the start of Liver Cancer Awareness Month! This month let’s celebrate your liver for all it does for your body!

Action Alert: Urge ACIP to Recommend Universal Hepatitis B Vaccination for Adults in the US

A universal hepatitis B recommendation for adults is critical in addressing the consistently low adult hepatitis B vaccination rates and eliminating viral hepatitis in the United States. Tell the CDC’s Advisory Committee on Immunization Practices (ACIP) that universal adult hepatitis is essential to preventing liver cancer.  Take action here.

What Does Your Liver Do?

The liver is such an important organ – it’s like the engine of your body. It does hundreds of vital things to make sure everything runs smoothly:

  • Stores vitamins, sugar, and iron to help give your body energy
  • Controls the production and removal of cholesterol
  • Clears your blood of waste products, drugs, and other poisonous substances
  • Makes clotting factors to stop excessive bleeding after cuts or injuries
  • Produces immune factors and removes bacteria from the bloodstream to combat infection
  • Releases a substance called “bile” to help digest food and absorb important nutrients

The Link Between Liver Cancer and Hepatitis B  

The most common type of liver cancer is “primary liver cancer” or hepatocellular carcinoma (HCC). Worldwide, the most common risk factor for primary liver cancer is chronic infection with the hepatitis B virus. Chronic viral hepatitis infections (hepatitis B and hepatitis C) cause about 80% of all liver cancers. Obesity, heavy alcohol use, fatty liver disease (NAFLD or NASH), and some metabolic disorders also increase the risk for primary liver cancer. People chronically infected with hepatitis B are more likely to develop liver cancer than uninfected people because the virus directly and repeatedly attacks the liver. These attacks over time can lead to increased liver damage, cirrhosis (scarring of the liver), and ultimately, liver cancer. People who have chronic hepatitis B can reduce their risk of liver cancer through regular medical monitoring, taking antiviral treatment if necessary, and making healthy lifestyle changes.

The best way to prevent liver cancer is to prevent hepatitis B infection! This is why hepatitis B vaccination is so important. When someone gets vaccinated to protect them from getting hepatitis B, they are also preventing liver cancer!

How Would I Know if I Have Liver Cancer?

If you have chronic hepatitis B, make sure you are getting routine surveillance for liver cancer every 6 months with your healthcare provider. This surveillance, which includes a combination of blood tests and liver imaging (ultrasound) is so important because early detection of liver cancer greatly improves the chances of survival with treatment. For patients in whom liver cancer is detected at an early stage and before symptoms occur – while the tumor is small and can be removed – the 5-year survival is greatly improved.  Learn more about who should be screened for liver cancer here.

Unfortunately, liver cancer is on the rise in the United States. The 2020 Annual Report to the Nation on the Status of Cancer found that the incidence of primary liver cancer in the United States increased by 2.5% overall and by 3.7% amongst women – the largest increase in incidence of any cancer between 2012-2016. Liver cancer was also stated as the second most common cause of death for Asian American and Pacific Islander males, who are disproportionately impacted by HBV, and the fifth most common cause of cancer deaths for men overall.

Making sure that people are protected from getting hepatitis B is so important in the U.S. – and establishing universal vaccination recommendations is essential to reducing liver cancer incidence and mortality. 

The Role of Universal Screening Guidelines for Hepatitis B

In the U.S., current childhood immunization recommendations by the Advisory Committee on Immunization Practices (ACIP) were established in the 1990s, and have significantly helped reduce rates of hepatitis B transmission over the past two decades, as more and more children have been vaccinated against hepatitis B. Individuals born prior to these recommendations, however, may be vulnerable to HBV, and span three generations: Baby Boomers, Generation X, and Millennials. Together, these groups account for approximately 63% of the U.S. population. Within this vulnerable population, the recent rise in incidence of hepatitis B cases has increased the most within 30- 49 year olds, attributed to the opioid epidemic. Of the 2.4 million Americans estimated to be living with hepatitis B, approximately 75% remain undiagnosed and may display no symptoms. This increases the risk of transmission to unvaccinated household members or sexual partners who are unaware that precautions should be taken to prevent transmission. Lack of awareness and low vaccination rates in this community leave millions of Baby Boomers, Generation X, and Millenials vulnerable to HBV.

Take Action: Sign the Petition to Support a Recommendation for  Hepatitis B Vaccination for All Adults!

The CDC’s Advisory Committee on Immunization Practices (ACIP) is currently reviewing evidence to determine if they should recommend universal adult hepatitis B vaccination. If the committee votes in favor of the proposal, this would mean that all adults in the United States would officially be recommended to receive the hepatitis B vaccine by the federal government. 

A universal adult hepatitis B recommendation is critical in addressing the consistently low adult hepatitis B vaccination rates and eliminating viral hepatitis in the United States. Please add your name to support universal adult hepatitis B vaccination by Friday, October 15th here. For questions or more information, please reach out to Michaela.Jackson@hepb.org. 

 Other Resources

  1. Listen and Learn – Listen to B Heppy’s newest podcast episode “Liver Cancer and Hepatitis B”! We chat with Dr. Rothstein from the University of Pennsylvania about the relationship between hepatitis B and liver cancer. He offers provider insight and recommendations to individuals listening.
  2. Check Out Liver Cancer Connect – This program was created to provide individuals and families with the information and support they need when facing the challenge of primary liver cancer.
  3. Seek Community Support – Hep B Community a global peer-led, volunteer-driven forum to support those living with and affected by hep B. They are dedicated to connecting people affected by hepatitis B with each other and verified experts in the field, who provide trustworthy and accurate advice.
  4. Learn More From Experts – Dr. Robert Gish talks about treatment options for liver cancer. How does the stage of cancer affect treatment? Why are screening and surveillance so important? What are the available treatments and what are the therapies in development? Find out by listening to the webinar.

Baruch S. Blumberg Institute