Hep B Blog

Category Archives: Living with Hepatitis B

Hep B and COVID-19: Resources for Individuals and Healthcare Workers

Amidst the global challenges we are facing, the Hepatitis B Foundation remains a resource for our community and our partners. COVID-19 is a rapidly developing situation, and information about it’s impact on those living with liver diseases such as hepatitis B is still emerging. During this time, it is important to be prepared for all situations, including limited access to necessities. Below, we have provided several tips and tools to help you protect yourself and stay healthy. 

Preparing for Quarantine or Self-Isolation

To prevent transmission of the virus, countries around the world are instating protocols requiring individuals to stay home and to practice social distancing as much as possible. If you are currently on hepatitis B medication, it is important to make sure that you have enough medication for an extended period of time. Call your doctor and ask them to write a 90-day prescription for your treatment if they have not done so. The American Association on the Study of Liver Diseases (AASLD) reports that many insurance companies are waiving refill limits on prescriptions, so you can request additional medication at any time. As skipping a day of treatment may cause the virus to flare and increase the risk of liver damage, it is essential to speak with your healthcare provider about long-term medication access.

If you had a doctor’s appointment scheduled during this time period, see if your doctor’s office is scheduling telehealth appointments or holding virtual meetings with their clients instead. Some services for those living with hepatitis B, such as ultrasounds or even blood work, may be delayed until further notice unless there is a cause for concern. You may want to consider scheduling a virtual meeting to discuss your situation and address any questions you may have about recent test results or concerning symptoms. Most telehealth services should be accessible directly from your phone if you do not have access to a computer. 

It is also important to continue protecting the health of your liver.  Consider stocking up on canned vegetables and fruits instead of items that may be unhealthy.  Be sure to read the nutrition labels, as some canned goods can have high sodium and sugar contents. If you have the means, you can also purchase fresh fruits and vegetables, and freeze them to use over the upcoming weeks. Physical activity – both indoor and outdoor – is encouraged during this time as well! Practice social distancing for outdoor activities, and get creative for indoor workouts. 

Protecting Yourself During the Pandemic:

Many individuals are wondering how those living with hepatitis B can protect themselves from COVID-19. Current recommendations are to practice social distancing and to wash your hands frequently with soap and water. Be sure to scrub your hands for at least 20 seconds! If soap and water are not available, a hand sanitizer that contains 60% or more alcohol will also kill the virus. 

Dr. Robert Gish, Medical Director for the Hepatitis B Foundation, says, “If you’re living with chronic hepatitis B or C without cirrhosis, you should be following the standard precautions for the coronavirus infection. The coronavirus does affect liver inflammation and liver enzymes and can also cause liver dysfunction, so individuals living with cirrhosis will be at higher risk for liver disease progression and decompensation.” Dr. Gish also recommends that individuals living with cirrhosis take special precautions, such as increased monitoring of liver enzymes. If you develop COVID-19, Dr. Gish recommends close monitoring of both liver enzymes and liver function. The Centers for Disease Control and Prevention (CDC) also recommends that those with serious chronic conditions self-isolate with or without an official stay-at-home order. 

Resources for Providers and Healthcare Workers:

Resources for Those Living with Hepatitis B

About COVID-19: 

COVID-19 is a respiratory illness caused by a new coronavirus that was discovered in 2019. While most people who become infected experience a mild reaction, COVID-19 can develop into a serious illness in individuals with underlying illnesses and chronic conditions. Precautions should be taken to prevent transmission and keep you, your family, and your community safe.

 

Stay up-to-date with the most recent information. 

I had a Liver Transplant Because of Hep B: Here’s What You Should Know

April is Donate Life Month in the United States. Donate Life Month is primarily known as a time to acknowledge those who have saved the lives of others by donating an organ, but it is also a chance to highlight the incredible journeys of those who have required organ transplants. 

Two years ago, Peter V. had a seven-hour emergency liver transplant after a chronic hepatitis B infection led to rapid liver failure. Peter sat down with us and shared an in-depth look into why he needed a liver transplant and how it changed his life. 

  1. Why did you need a liver transplant? 

I had acute liver failure.  About 1 and ½ years before my liver failure, I was taken off the hepatitis B medication (Viread) by my gastroenterologist and to maintain blood work monitoring about every 6 months.  From the span of June of 2017 to January of 2018 immediately before my liver failed, my hepatitis B DNA went from 1,000 IU/L to 169 million IU/L and my ALT went from 24 IU/L to 4,419 IU/L.  By this time, my liver had completely been destroyed through cirrhosis. Without the hepatitis B medication, the virus can flare up at any time and reaction to it once this happens could be too late as in my case.

2. What did a liver transplant mean to you previously? Did you realize how serious the procedure was? 

I never thought about a liver transplant, or any transplant for that matter. I never thought I would need one. Before, life with hepatitis B was normal and routine. Hepatitis B was simply part of my life; I took my medications and had no side effects from them, so the liver transplant was a surprise to me. 

I didn’t understand how serious a transplant was. My condition deteriorated rapidly when my liver began to fail. I couldn’t even do basic functions like unlocking my phone. It got to the point where my situation was so severe that I was in and out of consciousness; I didn’t even know that they were taking me into surgery. Upon recovery, when my cognitive function came back, my wife informed me that my situation had been extremely critical. 

3. What kind of treatment and follow-up did the transplant involve? 

I was bed-ridden and unconscious for over two weeks after the transplant. I needed physical therapy to regain my strength –  to sit up or to get out of bed. For two weeks, I had therapy three or four times a day to regain my ability to speak and cognitive thinking. 

Blood work is also a big part of follow-up. In the beginning, I had to have my blood taken daily before it lessened to once a week, then once every two weeks, and eventually to once a month. All of the blood tests are to make sure that your body does not reject the new organ. I’m on anti-rejection medications, but there is always the risk that your body can reject it. About a year ago, my ALT number rose to high levels, which raised immediate concern. My post-transplant team took a sample of my liver and found that my body was rejecting the new liver. They increased my anti-rejection medications and my body was able to adapt. 

I also developed diabetes after my transplant and had to be placed on insulin, however, I was able to stop taking it by changing my diet and monitoring my blood sugar through my eating habits. 

4. How has the liver transplant changed your life? Are you still able to carry out daily activities the same way you did previously?

I don’t drink alcohol at all anymore and I take much better care of my body. Before my transplant, I didn’t take hepatitis B seriously. I was still drinking alcohol and wasn’t eating a healthy diet. The transplant made me realize how serious hepatitis B could be if you don’t take care of your liver. 

The anti-rejection pills suppress my immune system, which means I have to be very careful about what I eat and how it is prepared. Eating out at restaurants is a risk because you have to trust that the restaurants are properly cleaning their food and that it is cooked properly.  Because of the immunosuppressants, improperly cleaned food can be dangerous. One time I developed a fever and had to be hospitalized because of cross-contamination between foods at a restaurant. You really have to be aware of what you are eating. 

The reminders for COVID-19 to wash your hands thoroughly and not touch your face have been my life since the transplant. Eventually, these actions become a habit. I am still able to work and do physical activities like yard work and exercise, but it is not as vigorous as before. I still get fatigued throughout the day, but it doesn’t stop me from living my day-to-day life. 

I don’t know how I would do this without support. I don’t know how I would do this by myself. I still do physical therapy to regain my strength and my family helps while I go through this journey. Family support is key. I also have a post-transplant team that will help monitor my health for at least 3 years after my transplant.

Most importantly, my family support has been abundant and going through an experience like this makes me much more appreciative of the love and care from having family support that should not be taken for granted. Now, the time spent together regardless of the activities are much more precious.

5. Is there anything that you wish you could have changed about your experience? 

I wish I didn’t have to go through the transplant. I wish I knew more about how serious hepatitis B was. I still drank alcohol and ate the same foods that I ate before my diagnosis. I neglected my liver health. I wasn’t serious about it before the transplant; hepatitis B was invisible to me. It shouldn’t have taken a liver transplant for me to become aware of it. 

6. What have you learned since your journey? Do you have any advice for those living with hepatitis B who think that a liver transplant is the best, or only, option for them?

I don’t think that a liver transplant is an “option”. For me, it was life-or-death. Because I was in critical condition, I was able to get it immediately. For others, getting a transplant is a long and difficult journey. 

A liver transplant is not going to get rid of chronic hepatitis B. You will still live with it. Hepatitis B is still a part of my life every day. The difference is that I now have an understanding of what it can do to my liver. 

Having chronic hepatitis B is not life-ending. It’s not even life-changing as long as you take your medication and take care of your liver. I put my friends and family through a scary experience. If you have chronic hepatitis B, take your medications and keep your liver healthy. Take your diagnosis seriously. 

About Liver Transplants for Those Living with Hepatitis B:

A liver transplant is a very serious surgery that removes a diseased or injured liver and replaces it with a healthy one. People living with hepatitis B can need a liver transplant if their liver begins to fail. This typically occurs if the infection is not being monitored properly, or if significant liver damage has been occurring. Regular monitoring by a knowledgeable provider, a healthy lifestyle, and taking medications, if needed, as prescribed, can help prevent the need for a liver transplant.

 Thank you, Peter, for providing a look into your experience! 

Copay Accumulators – What They Are and What They Mean For Your Prescriptions

In January of 2020, the Centers for Medicare and Medicaid Services (CMS)  proposed a new rule that could increase the out-of-pocket costs for people who take prescription medication for hepatitis B in the U.S. The proposed rule states that health insurance companies would be able to collect patient coinsurance through pharmaceutical manufacturer financial assistance. However, the insurance companies will be allowed to disregard any coinsurance paid with copay assistance when calculating how much the patient has paid toward their deductible and annual out-of-pocket (OOP) limit

This proposal – titled 2021 Notice of Benefit and Payment Parameters – reverses a recent ruling that would have required health insurance companies to count the value of manufacturer copay assistance toward an enrollee’s annual deductible and OOP limit in most circumstances1.  This rule acknowledged that manufacturer copay assistance helps lessen the financial burden of medications for patients. In the US, prescription drugs can be extremely costly, making manufacturer’s copay assistance programs necessary for many patients.  For example, brand name treatments are often expensive in order to help pharmaceutical companies earn back the costs of the research and time spent making the medication. Sometimes, the brand name treatments are the only ones that are available, like Vemlidy, or the only version that a person can take. A reversal of the rule would mean that hepatitis B patients and those living with other chronic illnesses may have to pay a larger amount of out-of-pocket costs for their medications. 

To understand the significance of this change, we first need to understand what a copay accumulator is. 

What is a Copay Accumulator Program and How Does It Work?  

A copay accumulator – or accumulator adjustment program – is a strategy used by insurance companies and Pharmacy Benefits Managers (PBMs) that stop manufacturer copay assistance coupons from counting towards two things: 1) the deductible and 2) the maximum out-of-pocket spending. What does this mean? 

Previously, a person could receive financial assistance from companies that make a drug, and that would count towards their deductible and/or out-of-pocket costs, depending upon the insurance plan. Pharmaceutical companies often provide financial assistance (such as a co-pay card) to help underinsured individuals afford expensive medications. This means that the person paying for the drug would end up saving money, often thousands of dollars. 

Why Is This an Issue? 

As the AIDS Institute explains it, “ … the trend in health insurance benefit design is to shift more of the cost of health care to patients through high deductibles and coinsurance rates …In order to afford the medicine they need, patients increasingly rely on manufacturer copay assistance.” With copay accumulators, the individuals who need assistance the most will be unable to receive it, and will end up paying more for their treatments. 

Below is an example of a copay accumulator program from the Patient Access Network (PAN)  Foundation: 

 

 

 

 

As shown in the above image, with a copay accumulator program – meaning her manufacturer’s assistance is no longer counted toward her out-of-pocket limit- the consumer ends up paying more, while the insurance company is able to reduce the amount they are paying. 

Copay accumulator programs are making life-saving treatments increasingly inaccessible. Research shows that the more out-of-pocket costs a person has to pay, the more likely they are to abandon their medication. Once on a hepatitis B medication, stopping suddenly or only taking it once in a while can cause flares and lead to an even higher risk of liver damage. 

In the United States, many of those who are living with hepatitis B come from underserved populations with limited access to healthcare. Oftentimes, cultural differences and language barriers can make it difficult to access and utilize the services they need. Now, copay accumulators are making the navigation process even more complex and placing a higher cost burden on patients. 


 1 The rule required insurance companies to count manufacturer copay assistance toward a patient’s deductible and OOP limit for all brand name drugs for which there is no generic alternative and in cases where the patient gained access to the brand name drug through an insurance plan’s appeals or exceptions process.

Love Your Liver This Valentine’s Day

For most people, Valentine’s Day is a day full of love, but for those living with hepatitis B, it can be filled with dread and anticipation. Perhaps you haven’t told your significant other that you have been diagnosed with hepatitis B, or maybe you are spending this year alone because you are scared to begin a relationship. This year, instead of focusing on others, take Valentine’s Day to love yourself – and your liver! 

Taking Care of Your Liver 

Find a Knowledgeable Provider (and be sure to see them regularly!): 

Most people who are diagnosed with hepatitis B lead long, healthy lives. The key is proper care and monitoring by a trained healthcare provider. If you do not yet have a healthcare provider who is regularly monitoring your diagnosis, you can search our physician directory to find one near you. You can also search the World Hepatitis Alliance’s member list to find local resources and organizations who can help you identify a provider in your area.  

It is always a good idea to conduct your own research as well! Look into what your provider specializes in, as some may be more knowledgeable about the infection than others. Ideally, it would be best to regularly see a hepatologist – someone who specializes directly in diseases of the liver. However, due to finances and other constraints, this may not be an option for everyone. Seeing any doctor is extremely important, but if you only have access to a provider who is not as experienced in hepatitis B, make sure that they are performing the correct tests to monitor the health of your liver. At each follow-up appointment, your doctor should: check your liver enzymes (ALT, AST), perform a physical exam of the liver, and any other blood tests they might feel is needed to determine the stage of the infection and the health of the liver. Sometimes, the doctor will also perform an ultrasound of the liver to get a better picture of what is going on. You can find some questions that are important to ask your doctor here. 

Watch What You Consume: 

When people are first diagnosed with hepatitis B, they may feel fine and may not consider making small changes in their daily lives. The truth is that your diet plays a large role in the health of your liver! Everything that enters your body is filtered through your liver. This makes adopting healthy habits essential to keeping the liver in good shape. A standard rule of liver disease is to avoid alcohol – even small amounts – and maintain a steady diet of fruits and vegetables. Foods that are high in fat, salt, and sugar content can lead to weight gain, which puts a strain on your liver. Beware of what you are drinking as well! Drinks like juices and sodas might seem like healthier options, but often contain high amounts of sugar. Diet sodas may lack sugar but have other additives which may have other health implications. Opt for flavored water or seltzer to satisfy a sweet craving instead! If healthier beverage options are not readily available, see if any coffee is available. Studies have shown that drinking coffee can lower one’s risk of developing liver damage and liver cancer – just be sure to watch how much sugar and creamer you put in it! Other diseases of the liver, such as fatty liver, can also increase your risk of liver damage and liver cancer, so it is extremely important to be aware of the risks and what you are consuming. 

Those living with hepatitis B should also be aware of aflatoxins. Aflatoxins – which can cause liver cancer – are natural toxins that are produced by a mold that grows on crops like corn, peanuts, and tree nuts. Aflatoxins are more common in warm, humid parts of the world, such as African countries and areas with tropical climates. Before eating any grains and nuts, check for any signs of mold. If the food appears to be moldy, do not consume it. The World Health Organization also recommends buying grains and nuts as fresh as possible to minimize the risk of aflatoxin exposure. The fresher the food is, the less time it has been in storage, which is where aflatoxins commonly grow. 

Be Mindful of Your Stress Levels: 

Living with hepatitis B can be a big stressor, especially for those who may face stigma and discrimination. Research shows that stress can negatively impact liver health. Take some time to find ways that might relieve your stress, such as meditation, listening to music. Being social can also be a stress reliever for some, so try spending more time with your trusted friends and family members. Exercise is also a great stress reliever and it has the benefit of helping you maintain a healthy weight! 

If you are celebrating Valentine’s Day with your partner or if you are in a new relationship, remember that hepatitis B is preventable and cannot be transmitted casually! Holding hands, kissing, or sharing utensils or food made by someone who is living with hepatitis B will not spread the infection. Hepatitis B is a vaccine-preventable disease so make sure that they have completed their hep B vaccine series. If they are not protected from hepatitis B, be sure to practice safe sex (use a condom) to prevent transmission.

Hep B Patient Engagement Survey: Help Guide The Future of Hepatitis B Therapies

If you’ve ever wanted to help guide the future of hepatitis B treatments, now is your chance! The Hepatitis B Foundation has created a short survey that is designed to capture a comprehensive view of the patient experience. The survey, which takes approximately 20-25 minutes to complete, will be made available for use by the US Food and Drug Administration (FDA) and drug development researchers to help clinical trial development for future hepatitis B therapies. All survey responses are anonymous.  

All individuals living with chronic hepatitis B are welcome to take this survey! After answering a few standard questions, participants will be asked whether or not they are currently on treatment for hepatitis B. If they are on treatment, the survey will prompt the participant to answer a few questions about their experience with the medication, such as how it makes you feel to take it, 

and what challenges you may face while taking your medication. All participants, regardless of their current treatment status, will have an opportunity to provide feedback on what they hope future medications will look like! 

The patient perspective is essential to creating a treatment that is not only effective but something that those living with hepatitis B would be willing to take. Oftentimes, researchers do not have the opportunity to gather insight into what patients are looking for or how a therapy would impact their lives. This can result in missed dosages of a medication, or avoiding a therapy altogether, rendering the treatment ineffective. This survey is also unique because it seeks to capture the diverse experiences of global patients living with hepatitis B. As we want to ensure that new treatments are as universal as possible, gathering the thoughts of both international and national individuals will ensure that different voices and opinions are captured! 

The survey is the first part of a multistep process to collect information on the patient experience. In the upcoming months, we will carry out focus groups and interviews to have a better understanding of what it is like to live with hepatitis B, its impact on a person’s daily life, and more. The information collected will help to direct our patient-focused drug development meeting – a chance for stakeholders and those living with hepatitis B to meet and discuss the patient perspective –  in June 2020.

The work being done will result in a broader understanding of how individuals are affected by the disease and more informed decisions regarding future hepatitis B therapies. Help guide the future of hepatitis B clinical trials and drug development by taking the survey today! 

Help Eliminate Hepatitis in the New year

With a new year right around the corner, now is a great time to reflect upon the past year and plan for the one ahead! 2020 is the start of a new era, but it also means that we have just 10 more years left to reach the World Health Organization’s 2030 goal of eliminating viral hepatitis. Many strides have been made over the years. In order to truly work towards elimination, we need everyone’s help – including yours!

 

  • Take Care of Your Health: The hepatitis B virus and your liver health can change over time, making regular doctors’ appointments essential to staying healthy and preventing liver disease and possibly liver cancer. Take a few hours this January to sit down and schedule your healthcare appointments for the year. Following up with your healthcare provider will allow them to monitor the infection, identify any signs of liver damage, and prescribe treatment early, if needed, to prevent further damage.

 

If you were diagnosed with acute hepatitis B and recovered, there are steps you can take to take care of your health too! You – and your healthcare providers – should be aware of the risk of reactivation, and how to prevent it. Always read the warning labels on over-the-counter medications, and make sure that anyone prescribing medication to you is aware of your past infection.

    • Get involved: Researchers are working hard each day to find a cure for hepatitis B and while they do so, there are many other issues in the hepatitis B community that can be addressed with the help of people like you! If you are in the United States, you can join our advocacy network to be notified of opportunities to take action. If you are located in another country, get involved with the #NOhep campaign, or search for World Hepatitis Alliance members near you to see what activities you can take part in. It’s essential for us to work both within our own country and globally. When we work together, our voices will be heard! 

 

  • Get tested – or encourage others to: Despite being the most common liver disease in the world, just 10% of those infected are aware that they are living with hepatitis B. It is very important that people with hepatitis B are tested – especially because hepatitis B does not have any symptoms. Start small by encouraging your family members and loved ones to get tested or offering to go with a friend to their doctor’s appointment. If you want to help on a larger scale, you can volunteer with local health organizations who are active in the hepatitis community. 

        Perhaps your friends and family have already been tested and      found out that they are not – and have never been – infected. That’s great! Now, it’s time to make sure that they get vaccinated to protect themselves. Remind them to schedule an appointment to receive their vaccine, and check in on them to make sure that they receive all necessary doses. Increasing global vaccination rates – especially in high-risk communities – is essential to meeting the 2030 elimination goals.

  • Put Your Social Media to Good Use: Technology is one of the best and most powerful communication tools that we have. Consider spreading positive, accurate messaging about hepatitis B in the new year to help destigmatize the disease, raise awareness, and combat false information. Start simple by liking, retweeting, and sharing posts by groups that are working hard to educate others!  Be sure to follow reputable organizations so that the information you are receiving and passing on is correct! Join the Hepatitis B Foundation community on Facebook, Twitter, and Instagram for international updates and Hep B United on Facebook, Twitter, and Instagram for hepatitis B information in the United States! 

 

For those of you who may be struggling to cope with your diagnosis or are dealing with stigma and discrimination around your diagnosis, the suggestions above may not be for you. Instead, consider taking 2020 to empower yourself by learning more about hepatitis B and sharing your experiences, even if you are only comfortable sharing anonymously. Remember, you are not alone! Over 292 million individuals are living with hepatitis B and each person has a story to tell. 

The only way to fight stigma and discrimination is to make it known that it is unacceptable. Many of our #justB storytellers have faced the same obstacles that others are currently going through. Take some time in 2020 to watch some of our #justB storytelling videos that share the journeys of brave men and women who have found the strength to speak about their diagnosis and how hepatitis B has impacted their lives or family. Other global storytelling campaigns, such as the World Hepatitis Alliance’s #StigmaStops Campaign, or online support groups can provide support, too. However you decide to contribute to eliminating hepatitis B, your efforts will be appreciated!

Liver Health & The Holidays: How to Stay Healthy with Hep B

The holiday season is here once again! It’s often a time filled with love and happiness, but for those living with chronic illnesses like hepatitis B, this time of year can be uncomfortable and stressful. The most important thing to remember is that your health – physical and mental – should come first. 

Alcohol is usually present at holiday gatherings and can be difficult to avoid. However, it is also extremely damaging to the liver – especially if you are living with a liver disease like hepatitis B. It may be tempting, but avoiding all alcohol, including small amounts, is best for the health of your liver. Focus on the conversation and catching up with your coworkers or friends instead of the drinks!  If you feel pressured, you can carry around a cup of another beverage, such as sparkling water or juice, to bypass any questions about why you are choosing not to drink. 

The holidays are also filled with sugary treats and foods that are high in unhealthy fats. Too many sugary, processed, and fatty foods (and drinks) are harmful and can contribute to liver diseases such as Non-Alcoholic Fatty Liver. When combined with hepatitis B, liver diseases can make your risk of liver damage and liver cancer even greater, so it is extremely important to maintain a balance of healthy foods and exercise. A few treats here and there will not harm you, but moderation is key! Try eating smaller portions of dessert and keep holiday sweets out of your house to avoid temptation. If you were gifted a delicious, but unhealthy snack, share it with friends and family!  

If you are preparing a meal or a dish for your celebrations, make it a healthy one! The American Liver Foundation has a great fact sheet on how to read the nutrition label on food packing. This will help you make better choices while you are food shopping. Try using healthier alternatives to ingredients, such as butter, that may be high in cholesterol or fats, and experiment with using more spices instead of salt to add flavor to the meal. 

Be sure to stay active during the holidays! Exercise is one of the best ways to maintain a healthy weight and reduce the risk of liver cancer. Grab a friend and take a walk or head to the gym. This is a great way to keep your fitness routine, encourage your friends to stay healthy, and catch up with those you haven’t seen in a while! If you don’t want to leave the comfort of your home or if you prefer to work out alone, you can also stay active by following along to exercise videos on Youtube. 

Remember that everything that you consume is filtered through your liver; your liver never gets a break! The lifestyle tips listed above may seem simple, but they have a large, positive impact on your health. Sticking to a regular healthy routine even during the holiday season will make it easier to continue those habits all year long! You can also check out our healthy liver tips to see what other actions can be taken to protect your liver.

Hep B & HIV CoInfection: Get Tested Today!

Each year, World AIDS Day is held on December 1st to raise awareness about HIV and AIDS.  HIV/AIDS still remains a large problem, with nearly 40 million people living with the infection. Hepatitis B (HBV) remains a large issue as well, with 292 million people living with the chronic infection. Despite the inadequate amount of resources or attention that hepatitis B receives, it is important to talk about it whenever we discuss HIV/AIDS.  Why? Any individual already living with hepatitis B or HIV can also contract the other infection. This is called a coinfection, and it can have serious consequences if not addressed. Let’s look at HIV/HBV coinfection by the numbers: 

  • Globally, 10% of those living with HIV are also living hepatitis B 

    Courtesy of New England Journal of Medicine’s article titled: HIV–HBV Coinfection — A Global Challenge
  • Coinfection rates can be as high as 25% in countries where both infections are common
  • Up to 50% of injection drug users have an HBV/HIV coinfection 
  • Chronic hepatitis B progression can be up to 5 times faster in coinfected individuals compared to those living with just hepatitis B 

HIV vs Hep B: What’s the Difference? 

Hepatitis B is a viral infection of the liver that can increase one’s chances of liver disease and liver cancer.  HIV is a virus that attacks the immune system and kills the cells that are needed to fight off disease and infection. Though they are two different viruses, they can be spread in similar fashions: direct contact with infected blood, via sexual transmission, injection drug use, and through mother to child transmission during childbirth. Hepatitis B is primarily spread through mother-to-child transmission, HIV is most commonly spread by unprotected sex. Among those living with a coinfection, sexual transmission and injection drug use are the most common modes of transmission. Because of the similar transmission routes, it is recommended that people living with HIV be tested for hepatitis B and hepatitis C and those living with hepatitis B should be tested for HIV. 

Hepatitis B may be up to 100 times more infectious than HIV, but it also has a highly effective vaccine! Family members and sexual partners of people living with hepatitis B who have not been infected can protect themselves in just 2 or 3 doses. HIV does not have a vaccine, but people can take precautions to prevent transmission –  like not sharing sharp personal items – such as razors, needles, or toothbrushes – and practicing safe sex (use a condom), or through HIV pre-exposure prophylaxis (PRep). Those precautions can also prevent the spread of hepatitis B. While HIV and hepatitis B do not have cures, they both have highly effective treatments. You can learn more about HIV and hepatitis B treatments by clicking the links. 

HIV/HBV Coinfection 

If you are living with hepatitis B, it is important to get tested for HIV as well. Coinfections are very serious, and can sometimes complicate treatment. Worldwide, HIV/HBV coinfection has become an increased priority because research has shown that conditions associated with hepatitis B and C are now among the leading causes of hospital admission and death in people living with HIV. 

Left untreated and unmanaged, HIV/HBV coinfections can cause rapid progression of liver disease and liver damage, leading to serious complications at younger ages. There is also a higher risk of liver damage from anti-retroviral therapy (HIV treatment) in individuals living with hepatitis B than in those living with just HIV. Though some HIV treatments may also help treat hepatitis B, treatment options can vary based upon the person and the progression of the infections, so it is very important to discuss your options with your healthcare provider. Those living with hepatitis B, HIV, or HIV/HBV coinfection should always be closely monitored by a knowledgeable doctor.

Living with a coinfection can be scary, but with proper management and care, you can lead a healthy life! Check out this video from Jason –  one of our #justB storytellers – on successfully living with an HIV/HBV coinfection, and how he has learned to overcome challenges.  

Why Your Family Health History Matters with Acute and Chronic Hep B

National Family Health History Day is November 28th, and it 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 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! 

How To Talk To Your Doctor About Hep B in 5 Minutes

 

Going to the doctor can be an intimidating experience for anyone, but perhaps even more so when you’re living with hepatitis B. You have plenty of questions to ask and not enough time! This guide can help you focus on the important questions and become more comfortable discussing your infection with your doctor. 

  • Be Prepared: With only a limited amount of time to discuss concerns, it is essential to ask what matters most. Write down questions that you have been wondering about in order from most urgent to least. This will ensure that you get the answers that you need the most before you run out of time. We have a list of helpful questions that you can take, or they can help you create your own! You can also take a second person along to take notes and help ask follow-up questions. It may be helpful to organize your questions, previous test results, and any notes that you may have in a single folder to take along with you.

 

  • Do Your Research: Hepatitis B is a complex virus and its lack of symptoms can make it tricky to grasp what is going on inside of your body.  Familiarizing yourself with hepatitis B blood test results, liver enzyme tests, or liver function tests and being aware of test results out of normal ranges can go a long way in helping you understand your own body, and to figure out what questions you should ask. Remember to always get copies of all of your test results so you can monitor how they change over time. If something is abnormal, you can address it immediately. 

 

Be sure you are doing your research on trustworthy websites! Misinformation can be damaging, so it is extremely important to find information that is based upon scientific evidence. How do you know if the information is trustworthy? Some common tips are to look for information from trusted institutions, such as a government health department like the Centers for Disease Control and Prevention (CDC) or established organizations like the American Association for the Study of Liver Diseases (AASLD). You should avoid articles that have anonymous authors, and avoid getting information directly from a website from a company that is trying to sell you something. Academic institutions are a great place to look for information, like a local university or peer-reviewed journal articles. 

  • Review the Guidelines: There are several hepatitis B guidelines on how to prevent, treat, and manage hepatitis B. These are designed by medical experts to help doctors around the world make informed decisions about an individual’s status, and are a great source of information. While some individuals may not qualify for treatment, you can take the guidelines to your appointment and ask the doctor to explain why or why not you are a candidate for treatment at the moment. Just be sure to highlight the parts you wish to review beforehand! View the guidelines here. 

 

  • The doctor is the expert – but so are you!: Doctors can be extremely knowledgeable, but you are the one living in your own body! While hepatitis B often does not have symptoms, other factors can have an impact on your infection. One example is medication. Some medications may interact negatively with your liver, which can have an impact on the virus and result in serious consequences. If you notice any changes in your body after taking a new medication, you should alert your doctor to prevent potential liver damage. Your doctor and pharmacist should always be aware if you are living with (or have recovered from) hepatitis B so they can prescribe proper medications, but if an error occurs, it is important to speak up! 

Ensure you inform your doctor of any vitamins, supplements or herbal remedies you may be taking. Companies making these alternative therapies are not regulated so there may be no testing for quality and purity. You do not know what you’re getting from bottle to bottle or even dose to dose! Some alternative medicines can do more harm than good to your liver. 

You should always be aware of what type of doctor you are talking to as well. Some primary care doctors may be more experienced in chronic hepatitis B management than others. Gastroenterologists and hepatologists are the experts in the liver. It is recommended that individuals living with hepatitis B see a hepatologist but if this is not possible, a knowledgeable primary care doctor should be able to monitor you. If you feel that the doctor you are seeing is not experienced in managing hepatitis B, do not hesitate to ask them to review the official management guidelines with you, or to switch doctors. Your health is valuable and should be treated as such! 

When To See the Doctor Immediately

In some cases, those living with chronic hepatitis B can experience symptoms such as jaundice (yellowing of the skin or eyes), ascites (fluid in the abdomen that gives it a hard, round appearance), or severe vomiting and diarrhea. If any of these symptoms occur, it is extremely important to get to a doctor or healthcare professional as soon as possible. Severe symptoms indicate that immediate blood work is needed to prevent severe liver damage or liver failure. Remember that liver disease and liver cancer are both manageable if diagnosed early and monitored regularly, so it is important to attend regular doctor appointments, keep a clear record of your medical history, and become your own health advocate by empowering yourself with knowledge and getting involved in your care!