Hep B Blog
Clinical Trials, HDV, Hepatitis D Avocacy, Hepatitis D Drug Development, Hepatitis Delta (HDV), News

2022 – The Year of Hepatitis Delta

2022 is shaping up to be a big year for hepatitis delta, the rare but serious virus that can co-infect people who are already living with hepatitis B. As a quick refresher, hepatitis delta is a virus that depends upon the hepatitis B virus in order to survive and replicate – so only those who are already living with hepatitis B can become infected with hepatitis delta. Hepatitis delta virus (HDV) is believed to infect between 5 and 10% of people living with hepatitis B virus (HBV). HDV can occur through either a superinfection or a coinfection. A superinfection occurs when someone who is already living with HBV contracts HDV, in which case there is a very high chance that the individual will develop chronic (lifelong) infections of both HBV and HDV. A coinfection occurs when both HBV and HDV are contracted at the same time – when this happens in adults, both infections tend to clear within six months and there is only a 5% chance that chronic HBV and HDV will occur. Chronic HDV is particularly dangerous because it advances progression to serious liver damage and liver failure much more quickly than HBV alone – 70% of people diagnosed with HDV and HBV will experience serious liver damage within 10 years without intervention, compared to 15-30% of people diagnosed with HBV alone.

So, What’s Happening in the World of Hepatitis Delta?

The past 18 months have been very important for hepatitis delta research and drug development. In July of 2020, the European Medicines Agency approved Hepcludex, the first-ever drug approved for treatment of hepatitis delta, for prescription in France, Austria, and Germany. Hepcludex works by stopping HDV from entering and infecting liver cells (and is known as an entry inhibitor). In 2021, MYR Pharma, the German company that originally developed Hepcludex, was bought by Gilead Sciences, Inc., which is based in the United States, and which has since filed a Biologics Licensing Agreement for approval of Hepcludex by the US Food and Drug Administration, which is expected later this year. At this time, there is not a timeline for when Hepcludex approval will be expanded to more countries and parts of the world. Prior to Hepcludex, the only drug available for hepatitis delta management, which was never officially approved, was called pegylated interferon alpha. This drug, still in use today, is only effective in controlling HDV in about 25% of people living with the virus and has challenging side effects that can negatively impact quality of life.

In addition to Hepcludex, two other promising drugs are in clinical trials, both developed by Eiger BioPharma in the United States. The first of these is called Lonafarnib, which is being evaluated for how well it works to target the protein assembly process, which keeps new viruses from being created (it is known as a prenylation inhibitor). Lonafarnib, in combination with another drug called Ritonavir, is currently in Phase III clinical trials (the phase in which the safety and effectiveness of a drug is compared to that of currently available treatments). These trials are fully enrolled, and data is expected by the end of 2022. Additionally, Eiger is currently enrolling phase III clinical trials for Pegylated Interferon Lambda, which works by stimulating the body’s own immune system to fight the virus. For a full list of drugs under investigation for hepatitis delta, including one from Janssen Research and Development and one from Antios Therapeutics, visit our Drug Watch page.

Are There Other Clinical Trials Happening for Hepatitis Delta?

 Yes! There are clinical trials happening worldwide to test many of the drugs listed above and more. You can check out our clinical trials page here. This page includes a detailed description of each clinical trial, along with information about where it is being conducted and how to contact the principal investigator (or person leading the clinical trial). This page also includes a helpful graphic describing the clinical trial process and what it takes for a drug to move from an idea into the real world. It is important to note that not all of the trials listed here are for the purpose of testing a medication – some are observational studies to monitor what are called disease biomarkers, which are physical measures used to monitor the progress of a disease and could include tests of blood or liver function, for example. Clinical trials are currently happening in Australia, Austria, Belgium, Brazil, Bulgaria, Canada, China, France, Georgia, Germany, Greece, Israel, Italy, Japan, Mongolia, New Zealand, Pakistan, Republic of Moldova, Romania, Russian Federation, Spain, Sweden, Switzerland, Taiwan, Turkey, Ukraine, the United Kingdom, the United States, and Vietnam.

When Will HDV Drugs and Clinical Trials Be More Accessible in More Parts of the World?

 This is unfortunately a difficult question to answer. Even though up to 10% of people who are living with hepatitis B are also living with hepatitis delta, there are not good systems in place to make sure that everyone who is living with HBV or who is at increased risk for HDV is tested and diagnosed, so there are not very accurate numbers about how many people in the world are living with HDV. Indeed, of the nearly 300 million people around the world who are living with hepatitis B alone, only 10% are aware of their diagnosis, so this number is undoubtedly far lower than even 10% for hepatitis delta. Without accurate information about how many people are living with the virus, it is difficult for drug and clinical trial developers to invest resources into studying or pursuing drug development or clinical trials for HDV.

Another problem is the many resources of time, money, and labor that are necessary for developing drugs, and preparing and running clinical trials. The development process for a single drug can take anywhere from 5-15 years and a much larger number of drugs fail to complete this process than succeed. Additionally, there needs to be some degree of existing infrastructure in a particular country in order to both support a clinical trial and ultimately to get a drug approved. Unfortunately, this kind of infrastructure is generally already established and easier to navigate in wealthier countries, so these are the countries in which clinical trials are generally held and in which drug approvals tend to happen first. Public health and clinical infrastructure is slowly developing and becoming more prioritized in different parts of the world and hopefully this trend will continue, but for the time being, the locations of clinical trials and approvals for important treatments point to the much larger issues of lack of access to health and healthcare in much of the world, that in turn stem from deep-seated poverty and inequity. Again, as health equity continues to be a focus of the public eye, these trends will hopefully begin to change, paving the way for greater access to healthcare for hepatitis delta, hepatitis B, and countless other health conditions.

What Is Hep Delta Connect’s Role?

 This year, Hep Delta Connect will continue its work to raise the profile of hepatitis delta, both in the United States and around the world. We are committed to building awareness through partnerships with community-based organizations, healthcare providers, and governmental agencies around the world and through dissemination of educational materials and programming. We hope to foster greater engagement of those living with and affected by hepatitis delta globally, more focused advocacy efforts to bring HDV into the spotlight, and increased screening, diagnosis, and management of HDV. We keep our website and social media channels updated regularly with program news and events – make sure to follow us on Facebook, Twitter, and Instagram and check out our website frequently! You are always welcome to connect with us anytime at connect@hepdconnect.org. We look forward to an exciting year of work on HDV!

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.

Uncategorized

Year of the Tiger – Strength During a New Hepatitis B Diagnosis

Happy Lunar New Year! This year is the Year of the Tiger. The Tiger is a symbol of strength and bravery. Let’s go into this Lunar New Year with strength and bravery. When we are first diagnosed with a health condition, it just does not affect us physically, but mentally and emotionally. Many of us experience fear, anger, sadness, depression, anxiety, and powerlessness. Being diagnosed with hepatitis B can be scary – you might not feel strong or brave, and that is okay! The great news is that you can live a long and healthy life with hepatitis B.

Anger is a natural emotion we might experience when we are first diagnosis with hepatitis B. You might ask yourself: how did this happen to me, and why did this happen to me? It is normal to feel this way, you just got unexpected news. You might feel anger or hostility to our parents or lovers who also did not know they had the virus and passed it on to us. Talk about your anger and frustrations with a close friend or a professional counselor. You can also use healthy coping mechanisms like exercising or meditation. After we process our anger, it is important to inform close contacts (sexual partners, people who live in the same household) of your hepatitis B status so they can get tested, and vaccinated if necessary.

Sometimes this anger can turn into sadness. Prolonged sadness is also a natural emotion you can experience when you find out you are newly with hepatitis B. If you feel this prolonged sadness, anxiety, or fear, or sleeplessness, it is time to talk to someone who can help. Our fears and anxieties can sometimes overwhelm us because we do not know what is going to happen next, but know you have a support system. If you need support, you can join Hep B Community. This online group is a global peer-led, volunteer-driven forum to support to 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.

Your doctor may recommend treatment after interpreting your hepatitis B test results. The great news is that hepatitis B can be successfully managed through treatment and living a healthy lifestyle by exercising and eating foods that nourish our body. When you manage your hepatitis B, you can live your life to the fullest. As you process our initial reactions and emotions, know that you are strong and brave. Living with hepatitis B is part of us, but it does not define us.

If you are newly diagnosed, you can check out our pages about hepatitis B, testing, prevention, and treatment.

Direct questions to info@hepb.org

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

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

Baruch S. Blumberg Institute