Hep B Blog

Category Archives: Living with Hepatitis B

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! 

I Have Hepatitis B; Can I Get Married?

At the Hepatitis B Foundation, we answer thousands of calls, social media messages, and emails a year from individuals affected by hepatitis B. One of the most common questions we receive is: If I have hepatitis B, can I still get married? 

To put it simply, yes, a person living with hepatitis B can get married. In fact, a healthy relationship can be a source of love and support for those who may feel alone in their diagnosis. Transmission of hepatitis B can easily be prevented if your partner is vaccinated! Any future children can also be vaccinated starting as a newborn to help prevent transmission, even if the mother is hepatitis B surface antigen positive (HBsAg+)!

If your partner is waiting for the vaccine or is unable to be vaccinated for some reason, there are other precautions that one can take to prevent transmission: practice safe sex by using a condom, properly wrap all wounds, clean up any spilled blood with gloves and a fresh solution of 1 part bleach to 9 parts water, and don’t share sharp personal items (razors, toothbrushes, nail clippers, and body jewelry). This list may seem like a lot, but they are mostly things that we do every day without thinking much about it! 

Physically, there are no barriers that prevent an individual living with hepatitis B from getting married. The question often stems from a place of fear that is fueled by the stigma and discrimination around them. Oftentimes, we give fear too much power in our lives. It can control our actions and cause us to isolate ourselves. It’s important to remember that an individual is not their diagnosis. The essence of who you are as a person has not changed! 

Many of our #justB storytellers are leading happily married lives with supportive spouses who help them maintain a healthy lifestyle. Chenda was already engaged when she first discovered that she was living with hepatitis B. She said, “ When my fiance called, I was scared to answer but I told him the truth. He said ‘I love you’ and encouraged me to see a doctor”. Chenda and her husband now have a baby who they made sure was protected from the virus! Another storyteller, Heng, shares how he felt when the woman he was in love with told him that she was living with hepatitis B. After she told him, he got tested and found out he was already protected due to the vaccine! They later married and had children. “We make better lifestyle choices because of her illness, but we don’t let it define our lives”. 

Hepatitis B is not a weakness. Each day, millions of people living with chronic hepatitis B make the choice to wake up and live life to the fullest. Like many others, Edwin – one of our new #just B storytellers – was surprised by his diagnosis. Instead of letting it hold him back, he decided to show the world how strong he was by competing in a series of rigorous athletic competitions to set an example for others like him. “I want to show that Hepatitis B is not a condition that debilitates someone,” said Edwin.  “We can triumph through adversity.” 

Our #justB storytellers are examples of hope, inspiration, and strength; they are people living their truths.They also remind us that the difficulties that we face in life can make us stronger as a person. Despite the fear that Bright felt, he persevered and took action. “Slowly I started to have days when I wasn’t hopeless, when I could face the unknown. I talked to my doctors, did my own research, and made my own decisions….Now I realize I have changed: I am more resilient than ever before.”

Protecting Yourself From Liver Cancer While Living with Hepatitis B

This Liver Cancer Awareness Month, we are connecting the dots between hepatitis B and liver cancer. Hepatitis B is responsible for up to 60% of all liver cancer cases worldwide. In fact, some of the highest rates of liver cancer are found in places with extremely high rates of hepatitis B, such as sub-Saharan Africa and Southeast Asia. Although liver cancer is the sixth most common cancer in the world, it is the second most common cause of cancer deaths. Liver cancer prevention should be a priority for all living with hepatitis B. Luckily, there are steps that you can take to prevent liver cancer – whether you are living with hepatitis B or not! 

The Importance of Regular Check-Ups

Did you know that a chronic hepatitis B infection can lead to liver cancer without signs of previous damage such as cirrhosis?  Many people do not realize that chronic hepatitis B is the primary global risk factor for developing liver cancer. Cirrhosis – or scarring or the liver – is often a risk factor for liver cancer, but it is not always the case for those living with hepatitis B. This is one of the reasons why it is so important for family members and sexual partners of infected individuals to get tested as well! Lack of symptoms does not mean that damage is not occurring. 

Visiting a doctor regularly is the best way to prevent liver cancer if you are living with hepatitis B. The standard recommendation for visiting your doctor is every six months however this can vary based upon the severity of your infection. The doctor will take a few blood tests, along with an ultrasound examination of the abdominal area to determine the health of the liver. Based upon these tests and other risk factors, the doctor will be able to determine if liver damage is occurring and can guide you on which steps you should take next. 

If damage is detected early enough, progression to liver cancer can be prevented through highly effective treatments that stop or slow the virus from reproducing in your liver. However, it is important to note that not everyone living with hepatitis B needs treatment. Current treatments have been proven to be most effective when there are signs of active liver damage. Hepatitis B can be managed through regular monitoring by a knowledgeable doctor and lifestyle changes that can go a long way in protecting your body. 

Early detection of liver cancer is extremely important. The average 5-year survival rate once diagnosed with liver cancer ranges from 10% -14%. However, with early detection and proper treatment, those numbers rise to over 50%! This significant difference is because if liver cancer is caught early, a doctor can link you to life-saving treatments including chemotherapy, surgical options, ablation techniques, intra-arterial therapies or a liver transplant. Regular monitoring by a knowledgeable doctor will hopefully identify the markers of liver cancer before it occurs, but if you are living with liver cancer, there are treatment options and resources available to you. 

Preventing Liver Cancer 

Educating oneself is the first step in prevention! If you have hepatitis B, be aware of the risk factors and behaviors that can increase your likelihood of liver damage and liver cancer, such as consuming alcohol and high amounts of junk food, and lack of exercise. Non-Alcoholic Fatty Liver Disease (NAFLD) can also increase your risk of cancer, so it is important to discuss NAFLD risk factors and prevention tips with your doctor. Groups such as the CDC Division of Viral Hepatitis and the American Association for the Study of Liver Diseases all provide free fact sheets, call lines, and literature by experts that can help you understand what may be occurring in your body and to make educated choices. You can also check out our Liver Cancer Connect resource for more information or for liver cancer support. 

The hepatitis B vaccine is also the first anti-cancer vaccine ever created! Remember that the vaccine is typically given in a set of 3 doses. It is extremely important to take all three in order to receive lifelong protection from hepatitis B-related liver cancer. In the U.S., there is also a 2-dose vaccine available, so you can be fully protected with fewer doses! If you are worried about the cost of the birth dose for your infant or the vaccine for yourself, many countries have free health clinics that can administer it or link you to an organization that can help. 

Another key to preventing liver cancer is to get tested for hepatitis B. If you have not received your vaccine and you think you fall into a high-risk group, talk to your doctor about getting tested. Because hepatitis B often has no symptoms, it is important to get screened even if you do not feel ill. An early diagnosis means that you can begin any needed treatment sooner and prevent irreversible damage from occurring. Like the vaccines, your local doctor or health clinic may be able to test you for free or reduced cost – just ask! Some local community groups also provide free hepatitis B testing, so be sure to look out for flyers and announcements about them in your community as well

Join Us For a Twitter Chat for Liver Cancer Awareness Month!

 

 

 

 

October is Liver Cancer Awareness Month. Each year in the United States, about 33,000 people get liver cancer and a large portion of liver cancer cases are caused by viral hepatitis. Viral hepatitis is preventable and when diagnosed and linked to care early, can be treated to prevent liver cancer from developing. The majority of people living with hepatitis B and hepatitis C are unaware of their status and often find out after serious damage has occurred. Liver cancer is one of the only cancers that continues to rise steadily each year. On Wednesday, October 23 at 3PM ET representatives from Hepatitis B Foundation, CDC’s Division of Viral Hepatitis, and NASTAD will co-host a twitter chat to discuss the link between liver cancer and viral hepatitis as well as the importance of engaging communities most affected, particularly patients, in our response.

A large part of our chat this year is centered upon the patient voice. The patient perspective is essential to our efforts to prevent liver cancer and improving the lives of those affected by it. Jacki Chen, one of the Hepatitis B Foundation’s #justB storytellers and Karen Hoyt, a hepatitis C patient advocate with the National Viral Hepatitis Roundtable,  will be joining this year’s twitter chat as featured guest to share their unique experiences.

Below are the questions to be discussed during the chat. How can you participate? Join the conversation that day and throughout the month with the hashtag #LiverChat19. Share any resources or strategies you have that raise awareness about the link between liver cancer and hepatitis as well as how to better engage communities most affected, particularly patients, in our work. We also encourage you to share any videos or photos you have of your work in your communities or activities during Liver Cancer Awareness Month!

· Q1: What are things everyone should know about liver cancer, and also the link between hepatitis and liver cancer?

· Q2: What can people do to prevent hepatitis, or for those living with hepatitis, what can be done to protect the liver and prevent liver cancer?

· Q3: What are the barriers that keep people from getting screened for hepatitis and liver cancer and how can they be addressed?

· Q4: Why are some communities more vulnerable to hepatitis and liver cancer, and how do we address the disparities?

· Q5: How do we engage communities most affected by hepatitis or liver cancer in our work? Why is this important?

· Q6: What resources are available to educate others about hepatitis B & C and liver cancer? What resources are needed?

· Q7: Who are your key partners in addressing liver cancer? Who would you like to engage more in your work? (Tag them here!)

· Q8: What is one lesson learned or piece of advice for others who want to expand their work on the link between viral hepatitis and liver cancer?

· Q9: Centering the voices of patients and liver cancer survivors is incredibly important in improving our response and ensuring their needs are being met. How do you do this in your work? How can we as a community do this better?

Co-hosts and featured partners of the chat include:

· Hepatitis B Foundation – @hepbfoundation

· NASTAD – @NASTAD

· CDC Division of Viral Hepatitis – @cdchep

· CDCNPIN will be moderating the chat – @cdcnpin

· Jacki Chen – @jacki0362

· Karen Hoyt – @hepatitisIhelpC

· Global Liver Institute- @GlobalLiver

· American Liver Foundation- @liverUSA

Confirmed participants and their handles include:

· National Viral Hepatitis Roundtable- @NVHR1

· Hep B United – @hepbunited

· Hep B United Philadelphia – @hepbunitedphila

· Liver Cancer Connect – @LiverCancerConn

· Hepatitis Delta Connect – @HepDConnect

· Hepatitis Education Project – @HepEduProject

· Minnesota Department of Health – @MNHealth

· Hep Free Hawaii – @HepFreeHawaii

· Hawaii Health – @HIgov_Health

· Hep Free NYC – @HepFreeNYC

· MD Anderson Cancer Center – @MDAndersonNews

· AAPCHO – @HepBPolicy

. HHS Viral Hepatitis – HHS_ViralHep

· Kiiza Alexander – @KiizaAlexander

· Minnesota Health Department – @MNHealth

·HHS Division of Viral Hepatitis – @HHS_ViralHep

·HHS Division of Viral Hepatitis – @HHS_ViralHep

·Rowaye Ridwan – @otunbaridwan

·Hassan Muhammad Bature – @Hasanb1980

·Lilian Mary Nabuya – @Inabunya

·Wenyue Lu – @lu_wenyue

·Dave Nkengeh – @Davy_Tazinkeng

·Hepatitis B Initiative of Washington D.C. – @HBIDC

· Shakur Xassan – @sheykoshee

· Temple University Center for Asian Health- @KnowCancer

· Asian Health Coalition -@CAHE_AHC

·Maryland Cancer Collaborative

Just getting started with Twitter? Do you wish to join the conversation but you don’t know how? Type #LiverChat19 in the search box of the Twitter application to follow the chat, and click on “Latest”. Email michaela.jackson@hepb.org to be added to the list of confirmed participants!

RANN Foundation – Raising Hepatitis B Awareness in India

This post is written by guest blogger Surender, who founded the RANN Foundation – a non-profit organization in India dedicated to educating women and children in a variety of topics – including hepatitis! 

India has one-fifth of the world’s population and carries a large proportion of the global burden of hepatitis B. India harbors 10 to 15 percent of the entire pool of hepatitis B carriers in the world, estimated to be 40 million HBV carriers. About 15 to 25 percent of HBsAg [the hepatitis B surface antigen] carriers are likely to suffer from cirrhosis and liver cancer and may die prematurely. Infections that occur during infancy and childhood have the greatest risk of becoming chronic. Of the 26 million infants born every year in India, approximately one million run the lifetime risk of developing chronic hepatitis B.

RANN Foundation focuses on developing the potential of women and girls to drive long-lasting equitable changes deeply focusing on SDGs mainly 3.3 aims to combat Viral Hepatitis by 2030.

We believe that the best way to unlock human potential is through the power of creative collaboration. That’s why we build partnerships between businesses, NGOs, governments, and individuals everywhere to work faster, leaner, and better; to find solutions that last; and to transform lives and communities from what they are today to what they can be, tomorrow.

My Story:

I was a Human Resource Executive in leading thermal power generation company in India. It was 2010 when during a blood donation camp, I got to know that I have Hepatitis B infection. I had never heard about hepatitis b before this incident. It was a shocking moment for me because I had never gone through any blood transfusion. I discussed with family and prepared all of them for screening of hepatitis B. The results were shocking to all of us as three members had infection of Hepatitis B in my family. It was mother to child transmission. I decided to leave my job, which was the only source of earning for me/family, & started education about the diseases in most vulnerable slums & villages in India. Being a survivor, it was my duty to protect future generations. I started my organization RANN Foundation which aims for awareness and prevention of viral hepatitis in India.

The social stigma surrounding Hepatitis B

I never hide my hepatitis B positive status. In fact, on every occasion, I share my story, but anyone who is living with hepatitis B cannot reveal his/her status due to discrimination in family & society. Discrimination and marginalization of people living with the chronic infection is a major concern that majorly impacts the lives of patients in India. Misconceptions and stigma attached to the disease often leads to marginalization and discrimination against patients. My fight against the disease focuses on multiple fronts – prevention of hepatitis B through vaccination camps of dropout children, conducting education programs on viral hepatitis in schools & urban slums, and providing psychosocial support to patients. Around 1.5 lakh deaths annually and almost 60 million Indians affected, Viral Hepatitis continues to be a serious public health concern. Most of the mortality due to viral hepatitis is attributed to hepatitis B and C, which are also known as silent killers as more than 80% of the infected aren’t aware of their infection.

Project NOhepDelhi: A School Awareness Program

Under Project NOhep Delhi a school awareness program is initiated by RANN Foundation in collaboration with Delhi Commission for Protection of Child Rights (Govt of Delhi) to educate students and teachers about viral hepatitis. The role of students in creating awareness and causing behavioral changes among the general population could go a long way in preventing the spread of viral Hepatitis.

The effort aimed at increasing students’ awareness and knowledge of hepatitis transmission and prevention should, therefore, be of special interest, especially among adolescents and young adults.

At this stage, most detrimental lifelong lifestyles and behaviors are adopted like substance use, alcoholism, etc. which are also a predisposing factor for the contraction of hepatitis infection and other infections. The school is a place where viral hepatitis information can get to adolescents and the teachers are potent instruments for giving out this information. Hence, the need to assess the knowledge of teachers & students about viral hepatitis.

Training of the Students: Senior girls are in the process of taking sessions on viral hepatitis to educate their juniors and other people living nearby their home. Girls were excited while giving their names for the training and showed dedication throughout the program.

Achievements

Project HASI:- RANN in collaboration with Cognizance (IIT- Roorkee) has taken the initiative to educate and empower the rural and urban-rural women of Uttarakhand. We launched the project in October 2018. So far, we have impacted and supported over 4,000 beneficiaries directly and over 1500 indirectly through our community trainers in Haryana & Uttarakhand.

NOhep With Max India Foundation :- We have successfully conducted immunization camps with Max India Foundation catering to 800 children and have provided with hepatitis B vaccinations.

Project NOhep Delhi :- RANN in collaboration with Delhi Commission for Protection of Child Rights (Govt. of Delhi) has taken the initiative to educate and empower the urban slums women & students of govt schools of New Delhi. We have started project Nohep Delhi in 17 govt schools – appox 35 thousand children) & 3 major slums to conduct awareness program on viral hepatitis. An intensive campaign for awareness generation will be held using different methodS such as health awareness camp, meeting, events, street plays, one to one communication, big events and sensitization with various groups of the society

#Tri4ACure: Racing For Hepatitis B Awareness & Cure Research

On September 8th, 2019, Edwin Tan participated in one of the toughest and most exhausting triathlons in the world: the Ironman. The Ironman consists of a 2.4-mile swim, a 112-mile bicycle ride, and a marathon 26.22-mile run raced in that order. It was Edwin’s first time racing in an Ironman, and although it took him over 13 hours – on a cold, rainy day – to finish, he did not give up! 

The completion of the Ironman race marks the end of Edwin’s #Tri4aCure journey, which officially began in June 2019. Since the beginning of the summer, Edwin has competed in 6 races – over 336 miles – to raise money and awareness for hepatitis B research, patient outreach, and education; we are extremely proud of his accomplishments! 

Edwin Tan – a 29-year-old mechanical design engineer from Minneapolis, Minnesota – was diagnosed with hepatitis B in 2014. Like many others, Edwin’s diagnosis came as a surprise. After he learned his hepatitis B status, Edwin decided to learn all that he could about the infection. Through his research, he found that one of the best ways to keep his liver healthy was through small lifestyle changes. Edwin began to pursue healthier life choices by increasing the amount of exercise he was getting and paying closer attention to his diet. 

Edwin’s decision to compete in an Ironman was driven by his hepatitis B journey. Researching the topic made him aware of the lack of education and extreme stigma surrounding the illness. The Ironman was a testament to the strength, endurance, & determination that those living with hepatitis B display each day.  “The theme of this race for me was perseverance, which I felt was fitting for my hepatitis B story, “ said Edwin. “Completing an Ironman, which is regarded as one of the most difficult one-day athletic events, serves as a good example that we each can accomplish anything we want as long as we believe in ourselves.” 

In addition to being one of the Foundation’s supporters, Edwin is also a #justB storyteller! His video is just as inspirational and motivating as his #Tri4ACure journey. “I’m going to prove what I can achieve even while living with hepatitis B,” said Edwin in reference to competing in an Ironman. 

The Hepatitis B Foundation is thrilled to have been a part of such a positive, encouraging adventure. Although the races may be over, you can still contribute to Edwin’s efforts to raise awareness and funds for a cure for hepatitis B right here