Hep B Blog

Category Archives: Living with Hepatitis B

Patient Perspective: Living with Chronic Hepatitis B & Fighting it On All Fronts

 

This post is by guest blogger Mariam. Mariam works at a charity cancer hospital and is interested in philosophy. She is currently learning french and enjoys spending time by herself and the mountains. 

When you are first told that you have a chronic disease that is treatable but has no cure, you are suddenly confronted with an enemy on multiple fronts—you have to fight it within your body, inside your mind, your heart and in the outside world. Chronic hepatitis B: nearly 15 million people are living with it in Pakistan. In the world, 292 million people are silently suffering from this , and most are unaware (which is 9 out of 10 people globally). It is a tragedy that 2 out of 3 liver-related deaths are caused by this infection which is preventable and treatable. There are many reasons why this disease is prevalent in a developing country like Pakistan that lacks a proper healthcare system; where there are no pregnancy screenings or an effective mechanism to ensure babies are vaccinated against this. It’s an infection that can be transferred through blood (most commonly from an infected mother to her baby during delivery)  and sexual intercourse and  so it is not difficult to understand how this disease travels from one generation to another, silently. Elimination of viral hepatitis by 2030 is one of the millennium goals of the World Health Organization, but we cannot achieve this without dedicated efforts by all the stakeholders that include health-care professionals, patients, media, and policy-makers. I am primarily interested in sharing the patient’s perspective, in hopes that it will encourage others to fight this epidemic.

A Patient’s Point of View

The fact it’s a chronic illness means you are in for the long haul and you have to be prepared to take care of yourself by regular monitoring/medications (depending on what stage you are at) for the rest of your life. One can argue that’s bad but it’s not a big deal as we have people who suffer from high blood pressure, bad eyesight, or diabetes and they also have to regularly take care of themselves. The problem is that hepatitis B is an infectious disease, a fact that contributes towards stigma surrounding its diagnosis. Suffering from flu makes me feel like a hazard to others. Having an infection that I cannot get rid-off certainly makes me feel bad and, in a way, dirty. I have to be cautious and aware that my blood is hazardous for others and I have to be constantly aware of all the possibilities I can be harmful and ways to prevent it. It’s a progressive disease which can be treated at a certain point, so when you go to follow-up appointments, you feel like a ticking bomb is inside you and you need to be able to identify the period when the bomb goes off so you can treat the damage. Because current hepatitis B medications are most effective when there are signs of liver damage, the treatment is often only given during this phase. The inherent uncertainty makes you hate hepatitis B.

Fighting Discrimination and Stigma

Living in a conservative society, if you are one of the few fortunate ones aware of your diagnosis, how do you deal with it? I kept it to myself because I did not want people to define me through my illness. I did not tell my parents or friends because I did not want them to see me as ill or worse, to pity me. I needed time to process it without having to deal with other’s opinions and judgments. Three years ago, I was diagnosed with hepatitis B during regular pre-employment screening. I did not even know anything about this disease. I had a biopsy to determine the stage of the disease. Then I went to a few follow-ups. Unfortunately, after a while, I stopped because I did not want to think about this illness. I wanted to forget about it so I tucked it away, in the farthest corner of my mind. I did not know many people with whom I felt safe talking about this. Until one day, I was at a fundraising event for a charity cancer hospital where I got the chance to sit with a doctor. He was a stranger and a doctor, so in a way I felt safe telling him why I’m so interested in trying to understand where my country stands in the fight against hepatitis B—I told him I was diagnosed with it. At one point he asked me if I’m on treatment,  and I honestly told him I am supposed to be on follow-up. He said, “What do you mean, supposed to be?” That slight hint of disappointment made me feel I failed in taking care of myself. It’s easier to sound irrational inside your head but when you share it out loud, it does not feel nice. He told me that first, I need to sort out myself before trying to make a difference in the world of hepatitis B. I am grateful for the brief discussion with him which gave me the courage to think about re-scheduling my long overdue follow-up appointment. It gave me the clarity that I wanted to share my story with others in hopes that those who are fighting hepatitis know they are not alone. Sharing my story also helps me feel that I am not alone either.

I feel it is very important to fight the stigma surrounding hepatitis. Only then we will be able to talk about it and bust the myths. Only then we will be able to discuss ways to fight it on the ground. It is common in a conservative society to put a label on you as defective and exclude you from everything. For instance, marriage is still, by large, the union in this culture after which people have sexual intercourse and have kids; both occasions that can be possible causes of transmission of this virus. If, before marriage, a person is aware of their diagnosis, they can ensure that their partner is vaccinated and safe. However, in this society, there is also a prevalent culture of arranged marriage which makes this whole discussion almost impossible because so-called “perfection” is demanded. I wonder if submitting your hepatitis status with a marriage certificate was compulsory, would it help in data collection and early detection of this disease or would it encourage stereotyping. What if it was possible to vaccinate every child who starts school to be vaccinated against hepatitis B? After all, mandatory vaccinations are common in other countries. But what about children who can’t afford to go to a school? Can we link hepatitis B vaccination confirmation mandatory with every birth certification? This works in many other countries that vaccinate every baby born – we need to able to fight hepatitis B with a strong response such as this.

I also have an obsession with trying to understand this virus that is sharing my body. So my brain imagined a story to help understand how the chronic hepatitis B works. There are the good guys (liver cells) and bad guys (virus) who grew up together quite happily. Until one day, the good guys realized that these other guys are not from amongst us, let’s kill them. There is a battle and then there is collateral damage. What I want to understand is, if the bad guys aren’t harming the good guys, then why does the body start fighting them? And what is the purpose of their existence if they are not bad guys by default? Perhaps one day someone will help answer my questions. Until then, I’ll try to focus on the inevitable fight.

 

Valentine’s Day: Dating, Love, and Hepatitis B

Valentine’s Day is a day of celebration, but it can also bring about worries and stress. Some might feel pressure about buying the right gifts for their loved ones. Maybe you’re wondering if it’s too soon in your relationship to celebrate the holiday. We may not be able to help you figure out what type of candy your partner likes the most, but we can help you navigate the holiday if you or a loved one is living with hepatitis B!

Can my partner and I have sex if one of us is infected and the other is not?

One way that hepatitis B is spread is through unprotected sex. This means that certain precautions need to be taken if your partner is uninfected, has not been vaccinated, or has not completed their vaccine series yet. Precautions include using a condom correctly. Using condoms can also prevent other sexually transmitted infections, like hepatitis C and HIV, that can be harmful to everyone, but especially to those who have chronic hepatitis B. Please keep in mind that certain sexual activities carry higher risks of transmission because of tiny, often microscopic tears in the membrane that may occur and increase the chances of direct blood contact! If you believe your partner has been accidentally exposed, they should contact their doctor or a local physician to begin post-exposure prophylaxis (PEP) as soon as possible. PEP can prevent chronic hepatitis B if caught early enough, so it is very important to inform the doctor of a possible exposure soon after it occurs.

If your partner has already completed the 2 dose (where available) or 3 dose vaccine series, there is nothing to worry about! They are not at risk for transmission! The recommended schedule for the three-dose vaccine consists of a dose at 0, 1 and 6 months, and the two-dose adult vaccine is at 0 and 1 month.  Some individuals may be interested in an accelerated vaccine schedule. Please understand that an accelerated schedule entails four shots, not three. The fourth shot would be administered at one year and would provide long term protection. Those that choose a shortened schedule will not have long term protection from hepatitis B if they do not complete the fourth dose. And your partner should have their blood tested 4 weeks after their last vaccine dose to confirm that they are protected.

I’m scared to tell my partner that I have hepatitis B.

It can be intimidating to tell a person something so personal, especially if you are uncertain about how they will react. However, it is extremely important! Even if you are using condoms, it is necessary to let your partner know your status before becoming intimate. Once you tell them, it will be a huge relief!

So, how can you prepare for the conversation?

  1. Research: hepatitis B can be confusing, so it is important that you both are familiar with the infection, including how it is transmitted! Apart from HBF’s website, the Centers for Disease Control and Prevention (CDC) has great information and handouts (in multiple languages!) on the infection. Consider printing one or two fact sheets out for your partner to look over.
  2. Take a deep breath: Don’t rush into the conversation. Take a moment to think about what you want to say. This will help you to stay calm and allow the conversation to progress. Remember to let your partner talk as well!
  3. Speak confidently: Don’t let hepatitis B speak for you! Let your partner know what you’ve learned about your infection and inform them that you are regularly visiting the doctor to monitor the infection. Speaking confidently can help keep them calm as well, and assure them that there is nothing to worry about!

If they react badly to the news at first, don’t worry! Everybody processes things at different rates and many people fear what they don’t understand. Try giving them some space and let them think about the information they’ve been given. You can also show them Heng’s #justB video; it tells the story of a man who fell in love and married a woman who is living with chronic hepatitis B and how he still supports her today! Also, remind your partner that hepatitis B is vaccine preventable! Three simple shots can protect them for life and they will never have to worry about the risk of transmission again!

Some people will never react kindly to the news, and that’s okay too! It may be disappointing, but don’t let it keep you down! You deserve someone who will accept and love you for who you are! Your chronic hepatitis B infection does not define you; it is just a small part of who you are.

For Partners of Chronic Hepatitis B Patients:

Valentine’s Day is a  time of love, and what better way is there to show love than by being supportive? If your partner is living with hepatitis B, you can show them you care in small ways! Perhaps it’s skipping the alcohol once in a while when you two go out with friends so they don’t feel alone. You can also try cooking healthy meals with them or exercising together a few times a week. Small gestures can say big things!

What’s the Difference: Hepatitis B vs Hepatitis C?

With five different types of viral hepatitis, it can be difficult to understand the differences between them. Some forms of hepatitis get more attention than others, but it is still important to know how they are transmitted, what they do, and the steps that you can take to protect yourself and your liver!

This is part one in a three-part series.

What is Hepatitis?

Hepatitis means “inflammation of the liver”. A liver can become inflamed for many reasons, such as too much alcohol, physical injury, autoimmune response, or a reaction to bacteria or a virus. The five most common hepatitis viruses are A, B, C, D, and E. Some hepatitis viruses can lead to fibrosis, cirrhosis, liver failure, or even liver cancer. Damage to the liver reduces its ability to function and makes it harder for your body to filter out toxins.

Both hepatitis B and C are blood-borne pathogens, which means that their primary mode of transmission is through direct blood-to-blood contact with an infected person. Also, both hepatitis B and C can cause chronic, lifelong infections that can lead to serious liver disease. Hepatitis B is most commonly spread from mother-to-child during birth while hepatitis C is more commonly spread through the use of unclean needles used to inject drugs.

 

Hepatitis B vs. Hepatitis C

Despite having an effective vaccine, hepatitis B is the world’s most common liver infection; over 292 million people around the world are estimated to be living with chronic hepatitis B. While hepatitis C tends to get more attention and research funding, hepatitis B is considerably more common and causes more liver-related cancer and death worldwide than hepatitis C. Combined, chronic hepatitis B and C account for approximately 80% of the world’s liver cancer cases. However, studies show that those with chronic hepatitis B are more likely to die from liver-related complications than those who are infected with hepatitis C. With hepatitis C, most people develop cirrhosis, or scarring of the liver, before liver cancer. In certain cases of hepatitis B, liver cancer can develop without any signs of cirrhosis, which makes it extremely difficult to predict the virus’ impacts on the body, and makes screening for liver cancer more complicated.

The hepatitis B virus is also approximately 5-10 times more infectious than hepatitis C, and far more stable. It can survive – and remain highly contagious – on surfaces outside of the body for up to 7 days if it is not properly cleaned with a disinfectant or a simple bleach solution. A new study suggests that the hepatitis B virus has the ability to survive in extreme temperatures, whereas the hepatitis C virus has been known to survive outside of the body for a short period of time on room-temperature surfaces. However, more research will need to be done on the topic.

Another major difference between the two forms of hepatitis is how the virus attacks a cell. The hepatitis C virus operates like other viruses; it enters a healthy cell and produces copies of itself that

Hepatitis C Virus
Courtesy of Google Images

go on to infect other healthy cells. The hepatitis B virus reproduces in a similar fashion, but with one large difference – covalently closed circular DNA. Covalently closed circular DNA (cccDNA) is a structure that is unique to only a few viruses. Unlike a typical virus, hepatitis B’s cccDNA permanently integrates itself into a healthy cell’s DNA – a component of the cell that allows it to function properly and produce more healthy cells. The cccDNA resides within an essential area of the cell called the nucleus and can remain there even if an infected person’s hepatitis B surface antigen (HBsAg) levels are undetectable. Its presence means that a person with chronic hepatitis B may have a risk of reactivation even if the HBsAg levels have been undetectable for a long period of time. The complex nature and integration process of cccDNA contributes to the difficulties of finding a cure for hepatitis B. The cccDNA’s location inside of the nucleus is especially troublesome because it makes it difficult to isolate and destroy the cccDNA without harming the rest of the cell.

Hepatitis C, on the other hand, has a cure! Approved by the FDA in 2013, the cure is in the form of an antiviral pill that is taken once a day over the course of 8-12 weeks. For hepatitis C, a cure is defined as a sustained virologic response (SVR), which means that the virus is not detected in a person’s blood 3 months after treatment has been completed. In the United States, an affordable, generic version of the hepatitis C cure is set to be released by Gilead Sciences, Inc. in January 2019.

People living with chronic hepatitis B are susceptible to hepatitis Delta. Only people with hepatitis B can contract hepatitis D as well. Hepatitis Delta is considered to be the most severe form of hepatitis because of its potential to quickly lead to more serious liver disease than hepatitis B alone. Of the 292 million people living with chronic hepatitis B, approximately 15-20 million are also living with hepatitis D. Unlike HIV and hepatitis C coinfections, there are currently no FDA approved treatments for hepatitis Delta. However, there are ongoing clinical trials that are researching potential treatments!

Hepatitis B/C Coinfection

It is possible to have both hepatitis B and C at the same time. The hepatitis C virus may appear more dominant and reduce hepatitis B to low or undetectable levels in the bloodstream. Prior to curative treatment for hepatitis C, it is important for people to get tested for hepatitis B using the three-part blood test (HBsAg, anti-HBc total and anti-HBs). People currently infected with hepatitis B (HBsAg positive) or those who have recovered from past infection (HBsAg negative and anti-HBc positive) should be carefully managed according to the American Association for the Study of Liver Diseases (AASLD) treatment guidelines in order to avoid dangerous elevation of liver enzymes resulting in liver damage.

How to Protect Yourself   

The hepatitis B vaccine is the best way to protect yourself and your family against hepatitis B. Although there is no vaccine for hepatitis C, you can protect yourself from both liver infections by following simple precautions! Simple steps such as not sharing personal items such as razors or toothbrushes, thoroughly washing your hands, and disinfecting surfaces that have been in contact with blood, can keep your liver healthy!

 

New Year’s Resolutions: Taking Control of Your Hepatitis B Infection

If you are living with chronic hepatitis B, you may feel as though you are not in control of your health, but that’s not true! Small changes to your daily life can go a long way towards improving your liver health and may even prevent liver damage from occurring. Here are five New Year’s resolutions to help you start 2019 off right!

  • Kick Your Old Habits to the Curb: Still smoking? Time to leave that behind! Old habits can be hard to break, but staying healthy is important. Did you know that insurance plans in the United States must cover smoking cessation programs through preventive care under the Affordable Care Act? This means that copayments and coinsurance can’t be applied to these programs. Taking the first step is better for your liver and your wallet!
  • Cook More: Cooking can be a lot of work, but it can also be fun! Regularly eating fast-food and highly processed meals are bad for your liver and can leave you feeling lethargic, so try switching things up. Consider signing up for a cooking class with your friends or family to learn some new tricks in the kitchen. You don’t have to make every meal from scratch; start by making one or two fresh meals a week and increase them as you feel more confident. Don’t know where to start? Try one of these recipes – desserts included!  There is no standard diet for chronic hepatitis B patients, but the American Cancer Societys low fat, low cholesterol, and high fiber meal ideas are a good, general diet to follow.
  • Write it Down: It can be difficult to remember all of the things
    Courtesy of Unsplash

    that you have to do and important tasks – like scheduling yourdoctor appointments – can get lost in the shuffle. Make 2019 the year that you start to write things down. Physically writing items down increases your chances of remembering them, so skip the Notes application on your phone and grab a piece of paper!

  • Make Some Time For Yourself: Stress is bad for every part of your body – including the liver – so it is important to make some time for yourself. Set a few hours aside each week to do an activity that you enjoy. If you have the resources, you may want to consider planning a vacation or taking a small weekend trip. Even if you can’t get away, set a goal to spend more time outdoors. Green spaces, such as an urban park or a forest, have been known to lower stress levels and can help manage weight, which is an important part of maintaining liver health.
  • Get Active: Exercising more might be one of the most common New Year’s resolutions, but it is also one of the most important ones! If you’re tired of going to the gym or bored with your old routine, try your hand at an exercise you hadn’t considered before. Yoga, pilates, running, and kickboxing are just a few examples of fun workouts that you can add to your exercise catalog and can be done outside of a typical gym setting. If you’re looking for affordable exercise options, be sure to check out some of the free exercise videos you can find on YouTube. You can also try hiking at your local park or joining a local community center!

New Year’s resolutions can be difficult to keep, especially if you are trying to do them all at once. The important part is to begin! If you are having trouble meeting your goals, pick one to start with and add another goal once it becomes a part of your routine.

My partner has been diagnosed with hepatitis B. Can transmission be prevented by vaccination?

Courtesy of Google Images

A hepatitis B diagnosis can be scary and confusing for both you and your loved ones, especially if you are unfamiliar with the virus. Hepatitis B is known to be sexually transmitted, and you may wonder how you can continue your relationship with someone who has been infected. The good news is that hepatitis B is vaccine preventable.This means that after you complete the vaccine series, you cannot contract hepatitis B through any modes of transmission; you are protected for life!

However, it is important to remember that the vaccine will only work if a person has not been previously infected. Therefore, it is necessary to take certain steps after your partner’s diagnosis to protect yourself from becoming infected.

The first step is to visit the doctor and get tested, even if you think that you do not have it. Since hepatitis B often has no symptoms for decades, testing is the only way to know your status. The doctor should perform the Hepatitis B Panel test – a simple blood draw that shows hepatitis B surface antigen (HBsAg), hepatitis B surface antibody (HBsAb or anti-HBs), and hepatitis B core antibody total (HBcAb or anti-HBc). Looking at these three blood test results together will show if you have a current infection, have recovered from a past infection, or if you need to be protected through vaccination. Once you receive your results, this chart can help you understand what they mean.

Preventing Transmission through Vaccines:

If you test negative for HBsAg, HBsAb, and HBcAb, you are not protected from hepatitis B and are considered to have a high risk of contracting the virus from your partner or other means. To prevent transmission, you will need to begin your vaccination series as soon as possible.

The hepatitis B vaccine is a 3-shot series taken over the span of 6 months. The first shot can be given at any time. The second dose should be given at least one month after the first shot, and the third and final dose should be separated from dose 2 by at least two months and dose 1 by at least 4 months.  While there is a minimum amount of time required between doses, there is no maximum amount of time. If you miss your second or third shot, you do not have to start the series over again; you can pick up where you left off! If your partner is pregnant and was diagnosed with hepatitis B, extra precautions need to be taken to prevent transmission to the child. Two shots will need to be given to the child in the delivery room: the first dose of the hepatitis B vaccine and Hepatitis B Immune Globulin (HBIG), if recommended and available in your country.  You can learn more about pregnancy and hepatitis B here.

After completing the series, a quick blood test called the “antibody titer” (anti-HBs titer) test can confirm that you have responded to the vaccine. This test, which should be given at least one month after you receive the third dose, will be greater than 10 mIU/mL if you are protected from hepatitis B. Like the vaccine, your doctor can administer the titer test.

Hepatitis B is spread through direct contact with blood. HBV  is also a sexually transmitted disease, so it is important to practice safe sex by using condoms throughout the duration of the vaccine series until the antibody titer test confirms that you are protected. While you wait for your body to create its defense, there are other steps that you can take to avoid transmission such as not sharing toothbrushes or sharp objects like razors.

The hepatitis B vaccine is the only way to fully protect yourself from the virus. Preventive measures such as using condoms can help prevent hepatitis B transmission, but without vaccination, there can still be some risk.

If you do not have a doctor or are worried about the cost of testing or vaccination, you can still get tested and vaccinated! In the United States, Federally Qualified Health Centers provide the hepatitis B vaccine at low- or no cost to individuals without insurance or with limited plans. You can search for a health center near you here. Internationally, you can search our Physicians Directory and the World Hepatitis Alliance member map to identify member organizations in your country that may have advice on doctors in your area. In addition, keep a lookout out for local health fairs and screenings; they may provide free vaccinations or testing for hepatitis B!

Ask An Expert: Managing Hepatitis Delta During Pregnancy

 

  What is the standard treatment for hepatitis delta and how long is it taken?

 

Although there are no standard guidelines for the treatment of hepatitis delta, pegylated interferon has been shown to be effective for some patients. It is usually administered via weekly injections for 1 year or more and is able to cure roughly 15-40% depending on the length of time that treatment is administered. Although many patients see declines in their hepatitis delta virus levels, most do not maintain long-term control following the conclusion of treatment.

Can pregnant hepatitis delta patients be treated with interferon?

 

Interferon has not been proven to be safe for administration during pregnancy and should not be administered. It may be harmful to the baby.

 

What is the best way to manage a hepatitis delta infection during pregnancy, if interferon cannot be used?

 

A liver specialist may continue to manage the hepatitis B infection during pregnancy through antiviral treatment. The American Association for the Study of Liver Diseases (AASLD) recommends antiviral treatment during the third trimester of pregnancy for women with high hepatitis B viral loads.

How can hepatitis B and delta transmission be prevented to the baby?

 

Because a hepatitis B infection is required for someone to become infected with hepatitis delta, transmission from mother to child can be prevented with the hepatitis B vaccine. Centers for Disease Control and Prevention (CDC) guidelines recommend the first dose within 12 hours of birth, along with and a dose of HBIG (hepatitis B immunoglobulin), followed by the additional 2 vaccine shots; one at 1 month and the final one at 6 months old. The vaccine, along with HBIG and hepatitis B antiviral treatment (if necessary) greatly reduce the risk of transmission to the baby. In resource-limited countries, the World Health Organization (WHO) recommends the first dose of the hepatitis B vaccine within 24 hours of birth, followed by the additional shots on the recommended schedule. Once the vaccination series is completed, the baby should be protected for life against hepatitis B and delta.

If hepatitis delta cannot be treated during pregnancy, do most women have progression of their liver disease during pregnancy?

 

 While some women may see progression of their liver disease, due to the relative short length of pregnancy, most women do not show clinical signs of advancing liver disease.

 

What treatment should follow delivery? 

 

 

Following delivery, the mother may resume interferon treatment as long as she is not breastfeeding. Interferon treatment while breastfeeding could be harmful to the baby. As for all patients, keeping up-to-date on the latest hepatitis delta clinical trials could provide access to new, experimental treatments that may be more effective. For a global list of clinical trials for hepatitis D, visit the clinicaltrials.gov web page.

It is very important for all pregnant women who are hepatitis B and delta positive to be managed by a liver specialist who is familiar with managing coinfected patients. For assistance in locating a specialist near you, please visit our Physician Directory page. For additional questions, please visit www.hepdconnect.org or email connect@hepdconnect.org.

Talk with Dr. Block: An Expert’s Insight into a Hepatitis B Cure- Part 1

 

 

This November, the Hepatitis B Foundation attended The Liver Meeting – an annual conference hosted by the American Association for the Study of Liver Disease (AASLD). Inspired by the enlightening presentations and conversations at the conference, hepatitis B expert Timothy Block, Ph.D, co-founder and President of the Hepatitis B Foundation, took a moment to talk to us about the complexities of the hepatitis B virus and the status of a hepatitis B cure!  

This is part one of a two-part series.

  Why is finding a cure for chronic hepatitis B so challenging?    

       

That’s the big question. A cure is only complicated until we  are able to figure it out. Once we understand it, it will be simple! Hepatitis B is curable, but finding a cure for it is complex for two reasons. The first is that it is not a simple matter of virology. The virus establishes itself in a stable nest inside of the liver – called the covalently closed circular DNA (cccDNA) – and successfully invades the immune system. To do this, the virus enters a healthy cell and plants itself inside of the cell’s DNA – a component of the cell that allows it to function properly and produce more healthy cells. This makes it difficult – but not impossible – to create a treatment that will attack the hepatitis B virus while not damaging the rest of the healthy cell.

Another reason that finding a cure is so difficult is because of the body’s immune response. Typically, your body can recognize a virus as a potentially harmful invader, or something that is not supposed to be within your body. This triggers something called an “immune response”, which is when your body sends fighter cells to destroy the virus. With hepatitis B, the proper immune response often does not occur. Your body does not completely recognize the virus as a threat. Instead of eliminating the virus as it is supposed to, your body responds by creating an inflammatory reaction in the liver, which is called hepatitis. The incomplete attack on the virus allows it to replicate inside of healthy cells and kill them. Together, the cccDNA and the body’s incomplete immune response create a challenge for scientists and researchers.

    What will a hepatitis B cure look like?

As a patient advocate, I believe that the term “cure” should be reserved for when a person is no longer at risk for illness or death due to the infection. Having said that, I also realize the need for more practical definitions. You don’t know how effective a drug is until it’s been used for a long time, so it is important to use a definition that can encompass a wide range of possibilities.

A functional, practical cure would ideally be a drug that a person can take for a short amount of time. Once they have completed their prescribed dosage, they will stop taking the medication and still have the same benefits of the drug without having to take it. It would be great to eliminate the viral markers of the disease, such as the hepatitis B surface antigen (HbsAg), along with the reversal of liver disease and the return of normal liver function. 

 

 What is the Hepatitis B Foundation’s contribution to the cure?

 

When we started the Hepatitis B Foundation in 1991, there was very little interest in hepatitis B. Our goal was to help people with chronic hepatitis B and the diseases with which it was associated, like liver cancer and cirrhosis. We wanted to help people by finding a cure and by linking them to care. The Hepatitis B Foundation aims to help find a cure in two ways: through our own research institute – the Baruch S. Blumberg Institute – or by providing assistance to other researchers who are working towards a cure. Through the ups and downs of governmental and pharmaceutical interest, the Hepatitis B Foundation has remained committed and focused on solely addressing hepatitis B.

We created the Pennsylvania Biotechnology Center, which became a home for other hepatitis B companies, and we kept the interest strong. The Pennsylvania Biotechnology Center has now grown into a place for hepatitis B education and collaboration for professionals and students alike. We host regular seminars that provide updates on current research in the field and provide a welcoming environment for other hepatitis B experts to share their knowledge through presentations, guest lectures, and interactive discussions.

Nowadays, we have entered a clinical renaissance; people have a renewed interest in hepatitis B. Our job is to keep the attention focused on the infection and the people who are affected by it. We remain committed, resolved and steady. The Hepatitis B Foundation is the organization that is there for the patients.

Disclaimer: The information provided in this article is based upon recent research and updates in the field. Please note that timelines and specific information regarding hepatitis B drugs are estimations and are subject to change as new research emerges.

Holidays with Hepatitis B: How to Tell Your Family

Image courtesy of Unsplash

As the holidays approach, families are planning parties and dinners and preparing to spend time with their loved ones. In such a merry atmosphere, the idea of discussing hepatitis B – whether its a recent diagnosis or the first time that you are ready to disclose your status – may be intimidating. However, it doesn’t have to be! In honor of  National Family Health History Day – which falls on Thanksgiving – we put together some tips to help you start the conversation.

 

  • Start Small – Facing your entire family at once can be frightening in any situation. Consider pulling one or two family members that you trust aside and speak with them first. They might offer advice on how to tell the rest of the family.
  • Come PreparedAlthough chronic hepatitis B is the world’s most common risk factor for liver cancer, there is a universal lack of education and awareness about the infection. Use our fact sheets to help your loved ones understand what hepatitis B is, how it impacts your liver, and what it means to live with it.  For more fact sheets and to view them in different languages, click here. Be sure to let your family know that hepatitis B is spread by direct blood contact, not through casual interactions. They cannot be infected by sharing the same utensils as you, eating food prepared by you, or casual touches such as hugging.
  • Be EncouragingMost people who are diagnosed with hepatitis B live long, healthy lives! Let your family know that you are monitoring the infection and taking the necessary precautions to prevent liver damage. Your family will be happy to know that you are in control of your health!
  • Let them know how to helpAlthough you may be able to
    Image courtesy of Canva

    manage hepatitis B by yourself, creating a support network is always a good idea! Do you have any active family members?  Exercise is great for the liver, so ask them to come along next time you go for a bike ride or hit the gym! Maybe you know someone who is great at cooking. Try cooking some healthy meals together!

  • Give them timeHearing about a medical diagnosis can be difficult for everyone involved and may also be a sensitive topic for some. Don’t let this discourage you! Try showing them a few of our #justB campaign videos, which feature real people who have been impacted by hepatitis B. Some stories, like Alan’s, discuss how people often do not realize that hepatitis B and liver cancer are related. Other stories, like Alice’s, showcase the importance of being honest with your loved ones and explain how to turn a diagnosis into an educational opportunity. Viewing  #justB stories might help your family members feel more comfortable talking about the infection and encourage them to learn their own hepatitis B status.

National Family Health History Day

Image courtesy of Canva

In 2004, the Surgeon General declared Thanksgiving Day to be National Family Health History Day. It’s meant as a time for families to discuss health issues that appear to run in the family. While hepatitis B cannot be passed from generation to generation like genetic diseases, it is commonly spread within families due to how the virus is transmitted. The most common mode of transmission is from mother-to-child during childbirth, often because the mother was unaware that she was infected and that certain precautions needed to be taken to prevent transmission to the baby. 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.  Approaching the topic and starting the conversation can help to break this cycle of transmission within families.

The good news is that hepatitis B is preventable and, if detected early, liver damage can be prevented! Offer to help your loved ones make an appointment with their doctor or to accompany them when they go to get tested or vaccinated; they’ll appreciate the extra support!  

Also, consider making some time this Thanksgiving to fill out My Family Health Portrait – a free tool that maps out your family’s history of health conditions and identifies what you may be at risk for.

The topic of health is important all year round; you don’t have to wait for the holiday season to bring it up! Start the conversation today and help your family find the information they need to protect themselves and stay healthy!

 

Karen and Dave’s Story

One Couple’s Journey through Hepatitis B, Hepatitis D and Liver Cancer

“Dave knew he had hepatitis B for decades, but honestly, no one ever seemed concerned. His liver
enzymes were slightly elevated, so the doctor told him to just watch what he ate and drank. He didn’t
even insist on bi-yearly blood tests!

In 2016, Dave was scheduled for a routine colonoscopy. Because he’d been looking pale and sickly
around that time, I suggested they do a blood test first at his family doctor. His numbers were off the
chart. They sent us back for the colonoscopy and added an endoscopy too. They found four varices
(enlarged veins in the esophagus that can indicate serious liver disease). How did this happen?

This was when I started to get angry. The gastroenterologist called us in to discuss the results. He asked
if Dave knew he had hepatitis B. Dave said yes, knowing his drug use in his teens and early twenties was
likely the source. Dave never felt shame about it at all, and just accepted it as a path he took, and
thankfully came out of. After that conversation, the doctor slammed his chart shut and pushed it across
the desk. He said that Dave’s liver was so badly damaged that there was nothing he could do and to
‘come back in a year’. When we asked about his options for treatment for the varices and his hepatitis B,
he actually told me that no one would treat the varices unless they were bleeding! He also told us that
hepatitis B antivirals would “make things worse”. That didn’t make sense. We asked about a transplant.
He said there was ‘no way’ anyone would give him a new liver. He didn’t even let us know that there
were actual liver clinics for this very purpose. He sent Dave away to die, really.

Many months later, with much perseverance, we made it to Stanford, where he was immediately put on
entecavir to treat his hepatitis B and to hopefully relieve some of his liver damage. That doctor alerted
us that he should also be tested for hepatitis D, a coinfection of hepatitis B. “It won’t be good if you have
it.” He did.

Due to changes in our health insurance, we were sent to continue at the University of California San
Francisco Liver Center…they were our saving grace. They treated the varices right away and put him on
other medications to help his failing systems. His hepatitis B viral load was now undetectable, with
hepatitis D being the biggest concern. Dave tried interferon to treat the hepatitis D, but with no luck. His
only chance was a transplant, but even though he was doing poorly, his test results didn’t qualify him to
get on the transplant list right away. He had lots of ER visits – 210 office visits in 2017 alone. It was a
whirlwind. Dave hadn’t even driven in 2 ½ years. It was an enormous stress on me, too.

Dave developed liver cancer but wasn’t in good enough shape to go through treatment. As he got sicker,
he eventually qualified for two different                  
liver transplant waiting lists. Finally, on
Thanksgiving night 2017, we got the call
that a healthy liver was available, and we
took it.
Caregiving is a very tough road. Especially
when your person also has encephalopathy,
caused by years of liver damage – and Dave
had it really bad. The encephalopathy
caused mood swings, short-term memory
loss, hand tremors, low appetite. He could
be down-right nasty. At that time, we were
doing the 4 ½ hour drive to San Francisco
once or twice a week. It was stressful for
both of us – and he was really unaware of
the stress that was put on me. Between
driving, taking out the garbage, bills, our
construction business…you name it, I did it
all.

The first 3-4 months out of the transplant, people were telling him all that had gone on. Much to my
frustration, he didn’t believe any of it! Now, over 6 months post-transplant, little things are coming back
to him. I showed him about 2 dozen pictures of him during his journey, and he was shocked! He said he
thought he was fooling everyone into thinking he was well.

The hardest part of this journey was seeing Dave so sick at times. I spent a lot of time in my closet
crying. It was hard on our adult girls too, to see their dad so weak and disoriented. I had a lot of support
through our girls though, and my family, which made a world of a difference. My sister is also a retired
nurse, and she accompanied us to most of our visits. She was a helpful adviser, since his medications
always needed tweaking, and we were often on long calls with our care team, health insurance
company, and pharmacies.

The good we took away is his health! He still doesn’t feel it’s real. We went through so much, and are so
grateful to be on the other side.

Things I’ve learned:
• Get on a Facebook forum for liver transplant patients…they are a great resource and a wealth of
information from other patients.
• Take a third person with you to doctor visits and procedures. At times, I was so consumed with
my concern for Dave, it was easy for me to forget some of the things we discussed. My sister
would take notes, and we would review them after.
• Always get a second opinion if you don’t have a good feeling about your doctor. You will all
become a team, and it’s important to have a team you can trust.
• Get on the transplant list at multiple hospitals, their criteria for transplant varies!
• Have willing family members and friends get tested to see if they are donor matches. Usually the
recipient’s insurance will pay for the testing and survey if they are a match. My sister-in-law and
I were both tested but were not a match.
• Ask about organ swap programs. Apparently, my kidneys were in perfect health. My
hepatologist had me apply to the kidney donor program, in hopes that I may be able to donate
my kidney in exchange for a piece of someone’s liver for Dave.
• Dave was put on depression and anxiety medication early in the process. He was initially very
resistant, mostly because of the stigma. His doctors finally convinced him it would be very
helpful for his general mood…it was!
• I had to make several phone calls to his team without his knowing. Encephalopathy really makes
you confused, and in Dave’s case, grumpy. I asked the doctor to push for the depression and
anxiety medications, which she did. Also, he wouldn’t exercise or take short walks before
surgery, which she had asked him to, to better prepare for surgery. I made the phone call, and
at the next visit, she set him up with a Fitbit! It helped that the ‘suggestions’ came from his
doctor and not me!
• After the transplant, I was so surprised he wasn’t more ‘thankful’ …that he wasn’t in awe of
what we had all gone through for HIM! I got angry with him. I made a private call to our new
post-transplant team. She said depression right after is very common. The patient feels
overwhelmed, and sometimes not very thankful. It’s kind of a way to deny they were in trouble,
to deny that they needed help. That fits my man to a tee!
• I would strongly suggest lots of patience after the transplant. I wish our team would have told
me the possible mental-state Dave might be in. Don’t force them to be thankful. Don’t play the
‘remember when’ game, “remember when I drove you to the ER in the middle of the night?
Remember when they told us you had cancer? Remember when I tried to be your donor?”
Because a lot of it he doesn’t remember.
• Take pictures along the way, but don’t show them until at least 6 months out. I showed Dave
pictures right away, and they didn’t resonate. I just showed him them the other night…and he
was floored! He really ‘got it’. He’s been looking at things differently lately: he’s calmer and
more loving.
• I wish I had kept a journal. The ups and downs of this journey were sometimes excruciating, and
Dave wasn’t ‘present’ to understand it. Hire cleaning help if needed. Get family and friends to
take the patient to lesser important appointments. Don’t let household things pile up on you. Fix
the gutter. Repair the screen. Hire a gardener for a few hours. Ask family to set things up for
you. It’s amazing how in two years without Dave to physically help around the house, things
started to go south pretty quickly! Luckily, I dug in and kept up.

Quite the journey for sure. I feel blessed to be on this side of health!”

– Karen

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

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

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

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

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

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

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

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

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

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

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