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Category Archives: About 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the military in the United States and many countries unethically prohibits individuals with hepatitis B to serve due to outdated guidelines.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, Living with Hepatitis B, Relationships

How Do I Share My Status

Valentine’s Day is February 14th! Today is a day to express your love for family, friends, and your significant other.

When you are living with chronic hepatitis B, starting a loving, romantic, relationship and initiating sex can be fraught with stress and difficult disclosures, before an intimate relationship can even begin.

To begin, living with hepatitis B only makes up a small part of who you are, it doesn’t define you. As guest blogger Lindsey says, “Having HBV is only a small facet of who you are, and not a reason to give up on a loving relationship. A partner who accepts you as you are and wants the best for you is someone who will not see HBV as a barrier to getting to know you.” Someone who genuinely cares about your wellbeing will understand how vulnerable you needed to be to tell them you are living with hepatitis B and react appropriately. And remember, your partner might also have something to disclose to you! So, you should think about how you would respond to them, as well.

Although the most common mode of transmission worldwide is from mother-to-child, hepatitis B can be spread sexually. The hepatitis B virus can be transmitted through sexual fluids like semen and vaginal fluids, in fact, it is 50x-100x more infectious than HIV. It is important to note that hepatitis B is more common than people think, affecting about 300 million people worldwide. Most of the time, people were infected at birth due to exposure to blood from their mother, or at an early age due to an unsafe injection or medical/dental procedures, or even direct contact with blood inadvertently exchanged by an infected caregiver or another child while playing. Since the most common symptoms are no symptoms, most people are completely unaware that they have hepatitis B for decades.

How Do I Tell My Partner I Have Hepatitis B?

So how do you disclose your status to a partner you’re about to get intimate with? This can be a nerve-wracking situation because you don’t know how they will react. Also, when is the right time to tell someone you are living with hepatitis B? Sharing your status is an important step to take. It establishes trust within a relationship dynamic. Disclosing should be relatively the same for people who are seriously dating or casually dating.

  • Firstly, you should know some basics about hepatitis B in case your partner has questions about it. Bring a fact sheet with you to the conversation to share with your partner. This can help them digest more information.
  • Practice the conversation with someone who already knows your status, like a family member or a close friend. Prepare for best and worst scenarios.
  • Choose a meeting place you feel safe and comfortable with. An in-person conversation would be best, but you can always do it over the phone: video calling, calling, or texting are all good options too!
  • Ask them to keep your hepatitis B status confidential! Your health is your health to tell, no one else’s!
  • Give your partner personal space and time to process what you just told them and let them ask questions for clarity.
  • Look after your mental health after you tell your partner.

You might wonder: How do I start this conversation? Here are some conversation starter ideas:

  • Start out on a positive note – “I’m really happy with our relationship…” – sharing your hepatitis B status is something that is positive because it demonstrates trust and respect.
  • You can start talking about hepatitis B to gauge to their reaction and depending on their reaction you can decide to disclose or decide it is not the time or the person to do so.
  • Use this as an opportunity to talk about sexual health in general – it is always a good idea to share sexual health history with potential partners!
  • Be honest and direct: “I am living with hepatitis B, I take medication and manage it. If you have the vaccine you are immune to hepatitis B.”

Once you find someone worthy of your time and energy you want to date, they should consider your health to be an important priority. To reiterate: your hepatitis B status does not define you. You are more than hepatitis B and any person who you should date will know that.

About Hepatitis B, Living with Hepatitis B

Should I Take Milk Thistle?

 

 

 

Silymarin or “milk thistle”, an herb and extract of milk thistle seeds, is a supplement commonly taken by people living with hepatitis across the world, yet its proven benefits remain controversial. It is not a treatment for hepatitis B or D, nor has it been shown to have any effect against fighting these viruses. This herb is believed to have possible benefits on liver health due to its antioxidant and free radical fighting properties, although no studies have found a consistent positive effect on viral load or fibrosis scores.

U.S. National Institutes of Health (NIH) has published a directory of what scientific research has discovered about common herbal supplements. Probably the most popular herbal supplement pitched as a liver remedy is milk thistle, and its extract silymarin. The NIH milk thistle report found, “Results from clinical trials of milk thistle for liver diseases have been conflicting or haven’t been clinically meaningful. Some of the studies have been of poor quality, too.” The overall finding is that scientific research has not found any benefit of taking milk thistle.

Silymarin is often taken by patients or suggested by their health care provider during or after interferon treatment ends, presumably with the hope of a protective or anti-inflammatory effect on the liver. But a 2013 study on hepatitis C patients unsuccessfully treated with interferon (the standard treatment for hepatitis B and D coinfection) found no significant difference in silymarin’s ability to lower ALT scores over placebo (a pill with no active drug ingredients)1. Another 2013 metanalysis reviewed 8 studies which tested silymarin against a placebo and looked for measurable levels of improvement in ALT scores, of which the results were mixed and inconsistent1.

However, studies have found improvements in patients’ self-reported quality of life after taking silymarin 2 – perhaps due to decreased stress or self-perceived control over their health. However, a 2012 study which randomly assigned patients either silymarin or placebo to measure possible declines in ALT or hepatitis B and C virus levels, in addition to self-reported quality of life, found little to no improvement in any of these outcomes3 regardless of whether they took milk thistle or a placebo.

Due to mixed scientific findings and lack of proven effectiveness, people living with hepatitis B and/or D should not rely on silymarin as a treatment for these viruses and should discuss any new prescription recommendations with their doctor. Silymarin will not counterbalance damage done by hepatitis B or D viruses. While some studies have found silymarin to be well tolerated with low side-effects3, individual reactions and side effects can vary. In the U.S., supplements including silymarin are not regulated by the Food and Drug Administration (FDA), making the true contents of supplements unknown. For these reasons, patients should be cautious about supplements.

So, what can you do instead? Take your antiviral medication as directed by a doctor, eat a liver friendly diet, and exercise. Check out our blog on healthy habits you can incorporate into your lifestyle.

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Disclaimer: Herbal products are not U.S. FDA approved, and the Hepatitis B Foundation cannot endorse the usage of such products that lack regulation and scientific evidence to deem them both effective and safe.

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  1. Fried, M. W., Navarro, V. J., Afdhal, N., Belle, S. H., Wahed, A. S., Hawke, R. L., Doo, E., Meyers, C. M., Reddy, K. R., Silymarin in NASH and C Hepatitis (SyNCH) Study Group (2012). Effect of silymarin (milk thistle) on liver disease in patients with chronic hepatitis C unsuccessfully treated with interferon therapy: a randomized controlled trial. JAMA, 308(3), 274-82.
  2. Polyak, S. J., Ferenci, P., & Pawlotsky, J. M. (2013). Hepatoprotective and antiviral functions of silymarin components in hepatitis C virus infection. Hepatology (Baltimore, Md.), 57(3), 1262-71.
  3. Rambaldi, Andrea & P Jacobs, Bradly & Gluud, Christian. (2007). Milk thistle for alcoholic and/or hepatitis B or C virus liver diseases. Cochrane database of systematic reviews (Online).

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, Hepatitis B Awareness

10 Things You Need to Know if You’re Living with Hepatitis B in 2022 

1. Get monitored every 6 months  

All people with chronic hepatitis B infection, including children and adults, should be monitored regularly since they are at increased risk for developing cirrhosis, liver failure, or liver cancer. During these check-up visits, your provider will monitor your health through a physical exam, blood tests and imaging studies (such as an ultrasound, FibroScan [Transient Elastography] or CT scan). The goal of these check-ups is to make sure that you are staying healthy and to detect any liver problems as early as possible. 

2. Take your antiviral daily  

Medication adherence can be hard, especially if you have to take a pill every day! It is important you take your medication every day.  

3. Ask your doctor to be screened for liver cancer  

Did you know the most common risk factor for liver cancer is chronic infection with the hepatitis B virus? Individuals chronically infected with hepatitis B have a 25% to 40% lifetime risk of developing liver cancer. It is important to ask your doctor to be screened for liver cancer every year!  

4. Ask your doctor to be screened for hepatitis D  

You can find out if you have hepatitis D through a simple blood test. Hepatitis delta, also known as hepatitis D or HDV, is a liver infection caused by the hepatitis delta virus that results in the most severe form of viral hepatitis known to humans. Only those already infected with hepatitis B can acquire hepatitis delta, as it is dependent on the hepatitis B virus to replicate.

5. If someone promises a new cure or treatment that sounds too good to be true….it is 

In the search to eliminate hepatitis B, we may be tempted to try a supplement that promises to cure us. But first, do your homework and practice precautions. To check out an herbal supplement, visit the National Center for Complementary and Integrative Health’s website to see what scientific evidence exists for a supplement and talk to your doctor. There is no magic bullet that will cure hepatitis B. Expert researchers hope to find one soon, but for now be patient and stay skeptical of “cures”. If you want to safeguard your health, eat healthy foods and avoid alcohol and cigarettes, and talk to your doctor about treatment with an FDA-approved antiviral medication. 

6. Stay informed about clinical trials and drug developments 

There is lots happening on the research front. To find out what drugs are in the development pipeline, visit the Hepatitis B Foundation’s Drug Watch page for the latest news. You can also find out if you qualify for a clinical trial. Expensive blood work, treatment medications, and doctor’s visits are usually free-of-charge for those accepted into a study. The Foundation features a Clinical Trial Finder that can help you find clinical trials in U.S. and around the world at its Clinical Trials page. You could become part of the cure. 

7. Fight hepatitis B-related discrimination 

Hepatitis B should never be a barrier to the education or job you want. Sadly, ignorance and stigma remain in the U.S. and abroad. It depends on us, our friends, and our family, to stand up and fight for our civil rights. The Hepatitis B Foundation has made much progress, but discrimination is still active and affecting people’s quality of life. If we don’t advocate for ourselves, who will? The Hepatitis B Foundation is working to document discrimination related to hepatitis B through its Hepatitis B Discrimination Registry. If you experienced hepatitis B discrimination, please report it through the Registry Survey 

8. Practice safe sex and harm reduction strategies 

Today, in some areas of the U.S., hepatitis B is increasing—even though a safe and effective vaccine exists. Unfortunately, not everyone is immunized, and the infection is still being transmitted sexually. Amid America’s opioid epidemic, it’s also spreading when syringes are re-used and shared. Make sure your friends and family members know how to prevent sexually transmitted infections (even if those conversations are challenging, their lives may depend on it), encourage them to get vaccinated for hepatitis B, and support needle exchange programs in your region and state. Countless studies show that when needle exchange programs are available, HIV, hepatitis B and C rates decline! It saves lives and healthcare dollars! 

9. Pregnant? Ask your doctor about the vaccine  

Infants born to women with hepatitis B must receive accurate doses of hepatitis B vaccine and hepatitis B immune globulin (if recommended and available) to ensure complete protection. In order to protect these infants, medications should be given immediately after birth in the delivery room or within the first 12-24 hours of life. Some women also benefit from treatment during their third trimester to prevent mother-to-child transmission, so talk to your doctor. 

10. Join a support group 

There are several good Internet Support Group Listservs dedicated to hepatitis B. These Lists provide emotional support and practical help for those living with hepatitis B. There are also organizations that can refer individuals to traditional (“land-based”) support groups.   

Hep B Community 

HepBCommunity.org is a global peer-led, volunteer-driven forum to support those living with and affected by hepatitis B supported by Westmead Hospital Foundation (AU) and the Hepatitis B Foundation and . 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. 

HBV Adoption Support List 

Adoptive or biological parents of children living with hepatitis B are invited to participate. This is a restricted list to protect the privacy of parents and children and requires pre-approval by the list owners to join. Update: This group has moved to Facebook and is currently set to private. Please email info@hepb.org for more information.  

PKIDs Email Support List 

Adoptive and biological parents of children living with chronic hepatitis B or C, and HIV are invited to participate. This is an unsupervised list sponsored by the national non-profit organization PKIDs. 

Hep B Online Support Group 

San Francisco Hep B Free – Bay Area hosts this group for those living with acute or chronic hepatitis B, and their family and friends. The site is moderated by the organization, and is currently only available for those living in the United States. 

Author: Evangeline Wang 

Contact Information: info@hepb.org 

About Hepatitis B, Hepatitis B Awareness, Hepatitis B Prevention

Happy Human Rights Day: Hepatitis B and Human Rights

Human Rights and Hepatitis B  

Every year on December 10th, we celebrate Human Rights Day! This year’s theme is “Equality – Reducing inequalities, advancing human rights.” This theme emphasizes equality, inclusion, and non-discrimination to further the Sustainable Development Goals by 2030.   

So how does this year’s theme relate to hepatitis B? 

Hepatitis B is the most common liver infection in the world. Almost 300 million people worldwide are living with chronic hepatitis B, yet there are a lot of misconceptions and myths surrounding the disease which perpetuates stigma, discrimination, inequality, and exclusion.  

More commonly, misconceptions surround the transmission of hepatitis B. Sometimes people think that hepatitis B can be spread through casual contact, through sharing food, through dirty environments – others feel that people with hepatitis B must have done something “bad” to get the virus. These perceptions can be damaging to an individual who is living with hepatitis B because it can create not only social stigma but self-stigma.  

A person living with hepatitis B might feel like they cannot disclose their status or live freely because of the way people or institutions will treat them. This fear of exclusivity also might create hesitation for people to get tested which could potentially delay treatment for people who might need it to prevent hepatitis B from progressing to something more serious like cirrhosis, fibrosis, or liver cancer.  

In some cultures, hepatitis B is viewed as a punishment from a supernatural force. People living with hepatitis B who believe this might feel a burden and shame and will not share their status. This belief also perpetuates hesitation for people to access testing and treatment. 

However, hepatitis B is NOT transmitted casually, no one is to blame for hepatitis B, and people who have hepatitis B deserve the same opportunities to live fulfilling lives – at work, at home, and in the community.  

Are You Feeling Isolated? 

If you are feeling isolated from your community, family, other individuals, etc., there are support groups you can join! Hep B Community is a global online support group dedicated to connecting people affected by hepatitis B with one another and with verified experts in the field, who provide trustworthy and accurate advice. 

On this day let’s celebrate Human Rights Day and take action to improve equality, inclusivity, and non-discrimination. Here are some resources: 

Did you know the Hepatitis B Foundation has a Discrimination Registry? 

The Hepatitis B Foundation is working to document discrimination related to hepatitis B through its Hepatitis B Discrimination Registry. If you experienced hepatitis B discrimination, you can take action and report it through the Registry Survey.  

The Hepatitis B Foundation also has a page dedicated for people experiencing discrimination in the United States. Check out what to do if you are experiencing discrimination in the workplace, military, and schools and institutions 

If you are experiencing discrimination and would like some advice email discrimination@hepb.org  

 

Author: Evangeline Wang

Questions: info@hepb.org

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

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