Hep B Blog

Category Archives: HBV

Addressing Hepatitis B in Africa

Conference on Liver Disease in Africa

To discuss the latest advances in addressing viral hepatitis and other liver diseases in Africa,  there will be a virtual Conference on Liver Disease in Africa (COLDA) from September 10th to 12th, 2020. COLDA is organized by Virology Education on behalf of the organizing committee led by Drs. Manal Al-Sayed, Mark Nelson, and Papa Saliou Mbaye. This virtual conference will gather clinicians, patients, other healthcare professionals, and policymakers from African regions, with international experts to support and exchange innovative ideas and knowledge about liver disease. The conference will consist of lectures discussing viral hepatitis infections, hepatitis co-infections, non-viral hepatitis-related infections, non-infectious induced liver disease, hepatocellular carcinoma, and end-stage liver disease. This virtual conference is important for addressing viral hepatitis since fewer than 1 in 10 people in Africa has access to testing and treatment for viral hepatitis. The World Health Organization (WHO) states that viral hepatitis is a bigger threat to Africa than HIV/AIDS, malaria, or tuberculosis with over 1.34 million deaths a year attributed to it.1 Over 60 million people in Africa have hepatitis B which annually accounts for an estimated 68,870 deaths.1 These statistics demonstrate the need for conferences like COLDA to discuss best practices and reduce viral hepatitis in Africa.

Mother-to-Child and Early Childhood Transmission

Hepatitis B is commonly transmitted from mother-to-child and close contact with infected individuals during the first 5 years of life. These modes of infection transmission are preventable with proper birth prophylaxis. There are two types of mother-to-child and early childhood transmission of hepatitis B resulting in chronic infection: vertical and horizontal. Vertical transmission refers to the transmission of hepatitis B from an infected mother to her baby during delivery. Horizontal transmission refers to infection with hepatitis B from direct blood-to-blood contact with an infected individual. Most early childhood transmission cases in sub-Saharan Africa are from horizontal transmission especially during the first 5 years of life from contact with family members or close friends infected with hepatitis B2, though vertical transmission from a hepatitis B infected mother to her baby is also common and completely preventable with birth prophylaxis.

 The best way to prevent the transmission of hepatitis B (HBV) from mother to child is through a “birth-dose”, meaning infants are vaccinated against hepatitis B within 24 hours of birth. However, in the WHO Africa region, only 6% of infants are administered the birth-dose.1 Only three countries in Africa: Cameroon, Rwanda, and Mauritania, have national guidelines addressing mother-to-child transmission of hepatitis B.2 Additionally, healthcare providers do not routinely screen future mothers for hepatitis B which contributes to a higher burden.2 This lack of screening demonstrates the need for universal guidelines to provide information to future mothers about hepatitis B. The World Health Organization recently released updated guidelines for hepatitis B which recommends a universal birth dose for all infants, as soon as possible, preferably within 24 hours followed by an additional 2-3 doses (often fulfilled with the pentavalent vaccine). Additionally, the WHO newly recommends that pregnant women testing positive for a hepatitis B infection (HBsAg positive) with an HBV DNA ≥ 5.3 log10 IU/mL (≥ 200,000 IU/mL) receive tenofovir from the 28th week of pregnancy until at least birth, to prevent mother-to-child transmission of HBV.4 This is in addition to the three-dose hepatitis B vaccination in all infants, including the timely birth dose. The WHO also strongly recommends that in settings in which antenatal (pre-birth) HBV DNA testing is not available, HBeAg testing can be used as an alternative to HBV DNA testing to determine eligibility for tenofovir prophylaxis to prevent mother-to-child transmission of HBV.4 Testing for hepatitis B in early pregnancy, a timely birth-dose, pentavalent vaccination, and administration of antivirals in the last trimester if needed would prevent vertical transmission and in turn, prevent horizontal transmission.

HIV/HBV Co-infection

There is a high burden of HIV/HBV co-infection in African countries because both diseases share similar transmission routes such as mother-to-child, unsafe medical and injection practices, and unscreened blood transfusions.2 Chronic HIV/HBV infection is reported in up to 36% of people who are HIV positive, with the highest prevalence reported in west Africa and southern Africa. The co-infection of HIV and HBV is especially dangerous because it accelerates liver disease such as fibrosis and cirrhosis. In fact, liver-related mortality is twice as high among people with an HIV/ HBV co-infection.2

Nosocomial Transmission

Another common way hepatitis B is transmitted in Africa is through nosocomial transmission or transmission from a hospital setting.3 The World Health Organization estimates 24% of blood donations in lower-income countries are not systematically screened for hepatitis B or hepatitis C. Additionally, countries have inconsistent screening procedures and use non-WHO prequalified test kits. Implementation of screening guidelines would significantly assist in reducing the risk of transmitting hepatitis B.

Barriers

 There are numerous barriers to eliminating hepatitis B in African countries. Screening is costly and often inaccessible, especially in rural areas. Moreover, there is an irregular supply of test kits for screening for healthcare providers.2,3 Lack of public awareness and often provider knowledge also contributes to the higher hepatitis B burden. Research has found that less than 1% of Gambian adults previously knew their status when tested positive for HBsAg.3 Additionally, there are financial constraints when it comes to hepatitis B treatment and care. The World Hepatitis Alliance and the WHO found that 41% of the world’s population live in countries where there is no public funding for hepatitis B treatments.3 This financial barrier prevents people from accessing important screening and vaccination prevention services. A collaborative effort among governments, local health officials, and community members is needed to manage hepatitis B in African countries.

Importance of Conference

Hepatitis B disproportionately affects the WHO Africa Region where 6.1% of the adult population is infected.1 The Conference on Liver Disease in Africa will address problems and discuss potential solutions for this neglected preventable disease. COLDA will help to make eliminating hepatitis B in Africa a reality by engaging the global community to collaborate on public health efforts, develop innovative ideas, and discuss best practices to reduce barriers. We hope to see you there!

Learn more and register for the conference.

 

References:

  1. https://www.who.int/news-room/fact-sheets/detail/hepatitis-b
  2. Spearman, C. W., Afihene, M., Ally, R., Apica, B., Awuku, Y., Cunha, L., Dusheiko, G., Gogela, N., Kassianides, C., Kew, M., Lam, P., Lesi, O., Lohouès-Kouacou, M. J., Mbaye, P. S., Musabeyezu, E., Musau, B., Ojo, O., Rwegasha, J., Scholz, B., Shewaye, A. B., … Gastroenterology and Hepatology Association of sub-Saharan Africa (GHASSA) (2017). Hepatitis B in sub-Saharan Africa: strategies to achieve the 2030 elimination targets. The lancet. Gastroenterology & hepatology, 2(12), 900–909. https://doi.org/10.1016/S2468-1253(17)30295-9
  3. Maud Lemoine, Serge Eholié, Karine Lacombe, Reducing the neglected burden of viral hepatitis in Africa: Strategies for a global approach, Journal of Hepatology, Volume 62, Issue 2, 2015, Pages 469-476, ISSN 0168-8278, https://doi.org/10.1016/j.jhep.2014.10.008
  4. Prevention of mother-to-child transmission of hepatitis B virus: guidelines on antiviral prophylaxis in pregnancy. Geneva: World Health Organization; 2020. Licence: CC BY-NC-SA 3.0 IGO.

Get Vaccinated for Hepatitis B!

 

August marks the start of National Immunization Awareness Month! This month highlights the importance of vaccines for people of all ages. Let’s talk about why you should get vaccinated for hepatitis B.

Understanding Your Status

Before becoming vaccinated for hepatitis B, it is important to understand your status. You can test through a simple triple panel blood test for HBsAg, HBcAb total and HBsAb. This will tell you if you have a current infection, have recovered from a past infection and if you need to be vaccinated. More details about the blood tests can be found here. Many people with hepatitis B do not look or feel sick so it is important to get tested. Learning your status early can help manage your hepatitis B and identify at-risk close contacts (household/family members or sexual partners) who can then be vaccinated and protected against hepatitis B.

 Why You Should Be Vaccinated

The hepatitis B vaccine is the first anti-cancer vaccine because it successfully prevents a hepatitis B infection which is the leading cause of liver cancer worldwide. It’s important for people to receive the vaccine since most people with hepatitis B are not aware they are infected. Hepatitis B is known as a silent infection as many people can live with hepatitis B for years without knowing they are infected. With chronic hepatitis B, when symptoms do finally present, often the infection may have already caused severe liver damage. The hepatitis B vaccine can prevent hepatitis B and also the health consequences that can come from hepatitis B, including the increased risk for cirrhosis, liver failure and liver cancer

It is especially important for future mothers to be tested for hepatitis B and vaccinated if needed. Mothers can easily pass hepatitis B to their infant during childbirth through either vaginal delivery or c-section. The most common mode of transmission of hepatitis B is from mother to child, so administering the vaccine to infants at birth is one of the most effective ways to reduce the number of hepatitis B cases worldwide. Read more about preventing perinatal transmission both in the U.S. and internationally.

In fact, it is very important to vaccinate children, starting with a birth dose, because greater than 90% of acute (short-term infection lasting less than 6 months) cases in infants and up to 50% of infected young children of hepatitis B will progress to chronic (lasting a lifetime) infections while only 5%-10% of adult cases will become chronic. That said, vaccination rates in adults are low and due to the nature of hep B, even those who recover from infection are at risk of reactivation. Left untreated, chronic infections can harm your liver and cause poor health outcomes. That is why the Hepatitis B Foundation calls for universal testing for hepatitis B. Luckily, you can expect to live a long and healthy life when you manage chronic infections of hepatitis B. Learn more about hepatitis B management here.

In the United States, you can get the vaccine through your healthcare provider or health clinics. Ask your doctor if you can get vaccinated today!

Hepatitis B is a preventable virus so why not take steps to become a healthier you!

About the Hepatitis B Vaccine

Hepatitis B can cause long-term serious damage to the liver like cirrhosis, fibrosis, and liver cancer. Fortunately, a safe and effective vaccine exists which can prevent a hepatitis B infection in all persons.

The World Health Organization recommends the vaccine for infants at birth and children up to age 18. Additionally, the WHO recommends high-risk groups become vaccinated for hepatitis B such as:

  • Pregnant women
  • People who frequently require blood to blood products
  • People who inject drugs
  • People in prison
  • Household and sexual contact of people with chronic HBV
  • Healthcare workers with blood to blood contact
  • People with multiple sexual partners
  • Travellers without completion of their vaccine series to endemic areas.

The WHO recommends that infants receive the vaccine within 24 hours of birth followed up with two additional doses. Children up to the age of 18 can also receive this series if they either were not vaccinated for hepatitis B at birth or did not complete the series. The series should be as followed:

  • 1st Dose: Anytime, but for infants, it should be administered at birth
  • 2nd Dose: One month (28 days) after the first dose
  • 3rd Dose: 4 months (16 weeks) after the 1st shot (and at least 2 months after the 2nd shot). Infants should be a minimum of 24 weeks old at the time of the 3rd shot.

Find out more about the vaccine schedule here!

You do not need to restart the hepatitis B vaccine series if you miss any of the shots.

In November 2017, a vaccine was approved by the FDA for use in the U.S. Heplisav-B (Dynavax) is a two-dose vaccine approved for use in adults aged 18 and older. The vaccine is administered as two doses given one month apart.

Ask your doctor about the 2-dose vaccine. You can now find Heplisav-B at more than 1,700 Albertsons Companies’ store pharmacies across the US. For assistance accessing this vaccine, you can contact Heplisav-B’s Access Navigator at 1-844-375-4728. 

For more information on the hepatitis B vaccine, read here.

#ThrowbackWHD: Hep B United Summits, Advocacy Days and World Hepatitis Days Through The Years

 

While we were not able to gather together for our annual Hep B United Summit this World Hepatitis Day to discuss best practices, advocate on Capitol Hill, and innovate ideas together to improve testing,  hep B vaccination and linkage to care and treatment for hep B in our communities, we did have our Virtual Week of Advocacy. Hep B advocates emailed their Congress members to ensure policy priorities include provisions for hepatitis B elimination -specifically supporting funding for a hep B cure and CDC viral hepatitis programs.  You too can advocate for hepatitis B elimination here! The templates make it so easy!

To learn more about past  Hep B United Summits, check out previous summit agendas and presentations here.

Join us today, World Hepatitis Day, for a Twitter Storm all day long sharing  memories, pics and videos  from past Hep B United Summits,  Advocacy Days and  World Hepatitis Day events.  Tag your posts and pics with #ThrowbackWHD, #WorldHepatitisDay, and #HepBUnite. Be sure to tag @HepBUnited and @HepBFoundation on Instagram, Twitter, or Facebook!

Know Your ABCs

What is Hepatitis?

Hepatitis simply means inflammation of the liver which can be caused by infectious diseases, toxins (drugs and alcohol), and autoimmune diseases. The most common forms of viral hepatitis are A, B, C, D, and E. With 5 different types of hepatitis, it can be confusing to know the differences among them all.

The Differences

While all 5 hepatitis viruses can cause liver damage, they vary in modes of transmission, type of infection, prevention, and treatment.

Hepatitis A (HAV) is highly contagious and spread through fecal-oral transmission or consuming contaminated food or water1. This means that if someone is infected with hepatitis A they can transmit it through preparing and serving food and using the same utensils without first thoroughly washing their hands. Symptoms of HAV include jaundice (yellowing of skin and eyes), loss of appetite, nausea, fever, abnormally colored stool and urine, fever, joint pain, and fatigue1. Sometimes these symptoms do not present themselves in an infected person which can be harmful because they can unknowingly spread the virus to other people. Most people who get HAV will feel sick for a short period of time and will recover without any lasting liver damage2. A lot of hepatitis A cases are mild, but in some instances, hepatitis A can cause severe liver damage. Hepatitis A is vaccine preventable and the vaccine is recommended for people living with hepatitis B and C. Read this blog post for a detailed comparison of hepatitis B and hepatitis A!

Hepatitis B (HBV) is transmitted through bodily fluids like blood and semen, by unsterile needles and medical/dental equipment and procedures, or from mother-to-child during delivery1. HBV is considered a “silent epidemic” because most people do not present with symptoms when first infected. This can be harmful to individuals because HBV can cause severe liver damage, including cirrhosis and liver cancer if not properly managed over time3. Hepatitis B can either be an acute or chronic infection meaning some cases last about 6 months while other cases last for a lifetime. In some instances, mostly among people who are infected as babies and young children, acute HBV cases can progress to a chronic infection3. Greater than 90% of babies and up to 50% of young children will develop lifelong infection with hepatitis B if they are infected at a young age.

Hepatitis C (HCV) is similarly transmitted like HBV through bodily fluids, like blood and semen, and by unsterile needles and medical/dental equipment and procedures. Symptoms of HCV are generally similar to HAV’s symptoms of fever, fatigue, jaundice, and abnormal coloring of stool and urine1, though symptoms of HCV usually do not appear until an infected individual has advanced liver disease. Acute infections of hepatitis C can lead to chronic infections which can lead to health complications like cirrhosis and liver cancer1. Read this blog for a detailed comparison of hepatitis B and hepatitis C!

Hepatitis Delta (HDV) infections only occur in persons who are also infected with hepatitis B1,3. Hepatitis Delta is spread through the transfer of bodily fluids from an infected person to a non-infected person. Similar to some other hepatitis viruses, hepatitis Delta can start as an acute infection that can progress to a chronic one. HDV is dependent on the hepatitis B virus to reproduce3. This coinfection is more dangerous than a single infection because it causes rapid damage to the liver which can result in fatal liver failure. Find out more about hepatitis B and hepatitis Delta coinfection here!

Hepatitis E (HEV) is similar to hepatitis A as it is spread by fecal-oral transmission and consumption of contaminated food and water1. It can be transmitted in undercooked pork, game meat and shellfish. HEV is common in developing countries where people don’t always have access to clean water. Symptoms of hepatitis E include fatigue, loss of appetite, stomach pain, jaundice, and nausea. Talk to your doctor if you are a pregnant woman with symptoms as a more severe HEV infection can occur. Many individuals do not show symptoms of hepatitis E infection1. Additionally, most individuals recover from HEV, and it rarely progresses to chronic infection. Read this blog for a detailed comparison of hepatitis B and hepatitis E!

Here is a simple table to further help you understand the differences among hepatitis A, B, C, D, and E.

Prevention

Fortunately, hepatitis viruses are preventable.

Hepatitis A is preventable through a safe and effective vaccine. The Centers for Disease Control and Prevention (CDC) recommend that children be vaccinated for HAV at 12-23 months or at 2-18 years of age for those who have not previously been vaccinated. The vaccine is given as two doses over a 6-month span1. This vaccine is recommended for all people living with hepatitis B & C infections

Hepatitis B is also preventable through a safe and effective vaccine. The vaccine includes 3 doses over a period of 6 months, and in the U.S. there is a 2-dose vaccine that can be completed in 1-month1,3. Read more here, if you would like to know more about the vaccine series schedule.

Hepatitis C does not have a vaccine, however, the best way to prevent HCV is by avoiding risky behaviors like injecting drugs and promoting harm reduction practices. While there is no vaccine, curative treatments are available for HCV1.

Hepatitis Delta does not have a vaccine, but you can prevent it through vaccination for hepatitis B1,3.

Hepatitis E does not have a vaccine available in the United States. However, there has been a vaccine developed and licensed in China1,2.

 

References

  1. https://www.cdc.gov/hepatitis/index.htm
  2. https://www.who.int/news-room/q-a-detail/what-is-hepatitis
  3. https://www.hepb.org/what-is-hepatitis-b/the-abcs-of-viral-hepatitis/

 

Are You At Risk For Hepatitis B

 

An estimated 292 million people worldwide are living with chronic hepatitis B and most are unaware of their status. Many at-risk groups are Asian and African descended. This month, we join our global community to observe World Hepatitis Day on July 28th – a day chosen to commemorate the birthday of Dr. Baruch Blumberg, who won the Nobel Prize for the discovery of the hepatitis B virus  Let’s take action and raise awareness to find the “missing millions”!

Not knowing your hepatitis B status can cause long term damage to your liver, so it is important for you to understand risk factors besides ethnicity. The CDC’s Know Hepatitis B Campaign’s fact sheet, “Hepatitis B – Are You At Risk?” is a great resource for sharing basic information on getting tested for hepatitis B. The fact sheet is available in 14 languages including Burmese, Khmer, French, Somali, Amharic, Hmong, and Swahili, among many others!

 For more information about the Know Hepatitis B Campaign, which is co-branded with Hep B United, visit the campaign website.

So if you think you are at risk –  what are the next steps? The first thing you can do is visit your healthcare provider to see if you should be tested for hepatitis B. 

A simple blood test can check to see if you are infected or at risk for hepatitis B. The hepatitis B panel blood test includes the following tests: 

  1. HBsAg (Hepatitis B surface antigen) – A “positive” or “reactive” HBsAg test result means that the person is infected with hepatitis B. If a person tests “positive,” then further testing is needed to determine if this is a new “acute” infection or a “chronic” hepatitis B infection. A positive HBsAg test result means that you are infected and can spread the hepatitis B virus to others through your blood.
  2. anti-HBs or HBsAb (Hepatitis B surface antibody) – A “positive” or “reactive” anti-HBs (or HBsAb) test result indicates that a person is protected against the hepatitis B virus. This protection can be the result of receiving the hepatitis B vaccine or successfully recovering from a past hepatitis B infection. A positive anti-HBs (or HBsAb) test result means you are “immune” and protected against the hepatitis B virus and cannot be infected. You are not infected and cannot spread hepatitis B to others.
  3. anti-HBc or HBcAb (Hepatitis B core antibody) – A “positive” or “reactive” anti-HBc (or HBcAb) test result indicates a past or current hepatitis B infection. The core antibody does not provide any protection against the hepatitis B virus (unlike the surface antibody described above). This test can only be fully understood by knowing the results of the first two tests (HBsAg and anti-HBs). A positive anti-HBc (or HBcAb) test result requires talking to your health care provider for a complete explanation of your hepatitis B status.

You can see what each test result means in this table!

Ask your doctor if you should be tested today! 

Hepatitis B Transmission for Those Newly Diagnosed

Being diagnosed with hepatitis B can be a confusing experience and may leave you with many questions. Understanding your diagnosis is essential for your health, and understanding how hepatitis B is transmitted can help prevent transmission to others. 

How is it Spread? 

Hepatitis B is transmitted through direct contact with infected blood. This can happen through direct blood-to-blood contact, unprotected sex, unsterile needles, and unsterile medical or dental equipment. Globally, hepatitis B is most commonly spread from an infected mother to her baby due to the blood exchange during childbirth. It can also be transmitted inadvertently by the sharing of personal items such as razors, toothbrushes, nail clippers, body jewelry, and other personal items that have small amounts of blood on them.

Hepatitis B is not transmitted casually by sneezing or coughing, shaking hands, hugging or sharing or preparing a meal.  In fact, hepatitis B is not contracted during most of life’s daily activities. You don’t need to separate cups, utensils, or dishes. You can eat a meal with or prepared by someone with hep B. Hugging, or even kissing won’t cause infection unless there are bleeding gums or open sores during the exchange. As an infection that is spread through the blood, standard precautions such as covering all wounds tightly, practicing safe sex (using a condom), and cleaning up all blood spills with gloves and a solution of one part bleach to nine parts water will protect against transmission. The best tool we have to prevent transmission is the hepatitis B vaccine!

Most of those who are newly infected have no notable symptoms. This is why it is important to encourage family members and sexual partners to get tested if you test positive. Often, it remains undetected until it is caught in routine blood work, blood donation, or later in life after there is liver inflammation or disease progression. 

Dealing with a Possible Exposure:

One important factor for those that may have been exposed is the timing. There is a 4-6 week window period between an exposure to hepatitis B and when the virus shows up in the blood (positive HBsAg test result).  If you go for immediate testing, please understand that you will need to be re-tested 9 weeks later to confirm whether or not you have been infected. It is essential to practice safe sex and follow general precautions until everyone is sure of their status –both the known and potentially infected.

You may still be in a waiting period trying to determine if you are acutely or chronically infected. It is possible that you have not had symptoms with your hepatitis B. It’s also very likely you are unsure  as to when you were infected. Not knowing the details of your infection can be stressful and confusing, but the most important thing to do now is to educate yourself so that you can take the proper steps to protect your liver and prevent transmission. 

Preventing Future Transmission: 

  1. Always cover open wounds. Keep cuts, bug bites – anything that bleeds or oozes – covered with a bandage. It’s also a good idea to carry a spare bandage.  
  2. Be sure to practice safe sex (use a condom) until you are sure your partner has completed their hepatitis B vaccine series. Be aware that multiple sex partners and non-monogamous relationships can expose you to the potential of more health risks and even the possibility of a co-infection, so it is best to use a condom. Co-infections are when someone has more than one serious chronic condition (like HBV and HCV , HBV and HIV or HBV and HDV).  Co-infections are complicated health conditions that you want to avoid. Therefore, practice safe sex by using a latex or polyurethane condom if you have multiple partners.
  3. Keep personal items personal.  Everyday items that are sharp may contain small amounts of blood. This includes things like razors, nail clippers, files, toothbrushes and other personal items where microscopic droplets of blood are possible. This is good practice for everyone in the house. Simple changes in daily habits keep everyone safe!

If a person has been tested and their results show that they are not already vaccinated or have not recovered from a past infection, then they should start the series as soon as possible. This includes sexual partners and close household contacts and family members. The HBV vaccine is a safe and effective 2 or 3-shot series.  

If you wish to confirm protection, the timing of the antibody titre test should be 4-8 weeks following the last shot of the series. If titers are equal to or above 10 mIU/mL, then there is protection for life.  If someone has been previously vaccinated a titer test may show that their titers have waned and dipped below the desired reading. There is no reason to panic, as a booster shot can be administered and then a repeated titer test 1-2 months later can ensure adequate immunity. Once you know you have generated adequate titers, there is no need for concern of transmission!

When recovering from an acute infection, if your follow up blood test results read: HBsAg negative, HBcAb positive and HBsAb positive then you have resolved your HBV infection and are no longer infectious to others and you are no longer at risk for infection by the HBV virus again.

However if your follow up blood tests show that you are chronically infected or your infection status is not clear, you will want to take the precautionary steps to prevent transmitting your HBV infection to others. You will also need to talk to your doctor to be sure you have the appropriate blood work to determine your HBV status and whether or not you are chronically infected.

Please be sure to talk to your doctor if you are unsure, and don’t forget to get copies of all of your lab results!

 

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! 

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.  

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! 

CVS Caremark : Re-Add Vemlidy To Your Formulary

UPDATE: The Hepatitis B Foundation and Hep B United, along with our network of patients, providers and partners, has successfully advocated for improved access to the hepatitis B medication Vemlidy in the US.! In July 2019 CVS Caremark – a subsidiary of CVS Health and one of the nation’s leading pharmacy benefit managers  stopped providing coverage for Vemlidy. This decision impacted thousands of Americans who rely on this life-saving drug to manage their hepatitis B.

Our members took swift action. Together, we sent over 20 letters from partner organizations and gathered over 250 individual signatures for a petition encouraging CVS Caremark to provide coverage for this essential medication. 
The company announced last week that they will resume coverage of Vemlidy for their plan members as early as October 2019! Thank you to everyone who helped us to advocate for this important change. We firmly believe that all FDA-approved medications should be available for doctors to prescribe to their patients, and this change will ensure that those on CVS Caremark plans have access to this life-saving drug.
What’s Next:
On October 1, 2019, Vemlidy will be processed for those under the Advanced Control Specialty Formulary. For those with a Value Formulary, Vemlidy will be covered beginning on January 1, 2020.
Until January 1st, Gilead Sciences – the creators of Vemlidy – will provide $1,000 a month (for up to $5,000) to offset the costs of treatment. Those interested can go to Gilead’s website and apply for a co-pay card; insurance is not needed.
Thank you to everyone who signed the petition, wrote a letter, or simply shared the information. Because of you, those who rely on Vemlidy now have one less barrier to accessing their needed treatment!

A few months ago, CVS Caremark – a subsidiary of CVS Health – announced their intentions to remove Vemlidy from their list of covered medications, or formulary. With over 2.2 million individuals in the United States living with chronic hepatitis B, this decision impacts thousands of Americans who rely on this life-saving drug to prevent cirrhosis and liver cancer.

CVS Caremark is the second-largest Pharmacy Benefits Manager (PBM) in the United States. As a PBM, Caremark manages prescription drug benefit plans for payers including health insurers and large employers. One of their main tasks is to negotiate drug prices with manufacturers and develop and maintain formularies on behalf of health insurers, which influence which drugs are available to patients on their prescription drug plan and determine out-of-pocket costs. Negotiations between PBMs and drug companies are common. However, they create a dangerous, unstable health and financial situation for those suffering from chronic illnesses.

When it comes to the treatment of chronic illnesses like hepatitis B, medical decisions are best made based upon knowledgeable and informed discussions between the doctor and the patient. After all, doctors have been tracking and monitoring how the virus impacts an individual for many months, if not years, and a patient is aware of how their body reacts to certain medications. CVS Caremark’s decision to remove Vemlidy from their formularies limits the ability of providers to make the best treatment choice for their individual hepatitis B patients.

Vemlidy is one of just three first-line hepatitis B treatments. First-line treatments are medications that have been proven to be highly effective with the least amount of side effects. For some individuals, this drug is the best option, as other FDA treatments can increase their risk of kidney disease and bone density loss. Hepatitis B expert and Medical Director of the Hepatitis B Foundation Robert G Gish, MD, notes two separate studies where tenofovir alafenamide (TAF) (Vemlidy) had lower amounts of bone density loss and kidney impairment than tenofovir disoproxil fumarate (entecavir), another first-line treatment. In order to properly help their patients, doctors need to have a full range of tools at their disposal. All FDA approved medications should be available for doctors to choose from.

The Hepatitis B Foundation’s Medical and Scientific Advisory Board is also concerned about the negative health impacts of Caremark’s decision. “TAF is less likely to cause adverse bone mineral density and renal dysfunctions than Tenofovir disoproxil fumarate (TDF). This is true not only for patients at risk of these complications but the overall hepatitis B patient population as demonstrated in clinical studies comparing TAF and TDF. By removing Vemlidy from the formulary plan, CVS Caremark is implementing a significant barrier to thousands of Americans who may need and/or rely on this drug to manage their hepatitis B….We are not advocating that all hepatitis B patients have to be treated with TAF. We believe that this decision should be made by the patient’s doctor with the patient.”

What Does This Mean: 

Now that Vemlidy has been removed from Caremark’s list of covered treatments, those living with chronic hepatitis B will either have to pay the full price or switch to another medication. To put this into perspective, the average retail price of Vemlidy is $1,350 USD a month. The average cash price reached $1,650 USD in July. There is no generic version of the drug. Like other hepatitis B treatments, Vemlidy must be taken daily over the course of several years to be effective; an individual paying the average retail price would have to pay approximately $16,200 a year to access their medication.

Others will be forced to change from Vemlidy to a similar treatment that is cheaper, but may be less effective with safety issues. This practice is known as non-medical switching: when insurers or PBMs make changes to a formulary primarily due to financial negotiations with manufacturers, in exchange for greater market share.

According to the Alliance for Patient Access, non-medical switching is associated with poor health outcomes. One of their recent studies found that patients who had been switched off their preferred medication experienced complications from the new medication. One in 10 reported being hospitalized for complications after the switch, approximately 40% stopped taking their medication completely, and 60% reported side effects from the new medication. These complications are extremely dangerous for individuals taking hepatitis B medication, as stopping suddenly and without consulting an expert can cause the virus to flare and increase the risk of liver disease, and liver cancer.

Taking Action

Hep B United (HBU) – a program of the Hepatitis B Foundation and a national coalition of over 40 organizations – has started a petition and will be sending a letter to CVS Caremark.

Individuals can ask CVS Caremark to reinstate Vemlidy by signing this petition! Organizations can add their names to HBU’s official letter commenting on Caremark’s decision. We hope that CVS Caremark will honor their commitment to the health of Americans and add Vemlidy back on their formularies!