Hep B Blog

Tag Archives: hepatitis B

advocacy, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Liver

CHIPO Partner Highlight: Great Lakes Peace Centre

 The Coalition Against Hepatitis for People of African Origin (CHIPO) is a national community coalition that is co-founded and led by the Hepatitis B Foundation, comprised of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the US. Recently, CHIPO has started to expand its reach to communities in Africa and has welcomed new partners from the Continent. This month, in honor of Minority Health Month, we highlight a partnership between CHIPO and Great Lakes Peace Centre (GLPC) in Kasese, Uganda. CHIPO has recently provided GLPC with educational resources that are tailored for African communities, which GLPC is translating into local dialects and will use in a strategy to raise awareness and provide education about hepatitis B, primarily to rural women and youth in Kasese District. A recent interview with Bwambale Arafat, Head of Health and Policy Officer at GLPC, sheds light on some of the significant barriers that impede hepatitis B screening, prevention, and care in Uganda (and much of the African continent) and showcases some of the extraordinary work of GLPC on a host of issues, of which viral hepatitis is just one.

 CHIPO: Can you share a little bit about yourself? What is your connection to hepatitis?

Arafat: I work with the Great Lakes Peace Centre, which is a grassroots, youth-led organization, here in Kasese District, a rural area in Rwenzori region, western Uganda (near the border of the Democratic Republic of Congo, about 400 kilometers from the capital city of Kampala). Most of our work with hepatitis B is focused on raising awareness and providing education about the virus to women and youth in the area, who are the most important people to reach. We also engage in a lot of advocacy initiatives, as well as efforts to lower stigma and discrimination.

My personal connection to hepatitis B is the diagnosis of my uncle with hepatitis B and liver cancer and his death shortly thereafter. There was widespread misconception that he had been bewitched and poisoned by relatives. I have been working to try to dispel some of these myths and provide accurate information ever since. In 2021, I was honored as a World Hepatitis Alliance champion for hepatitis outreach work during COVID-19. I and GLPC are deeply committed to the cause of hepatitis B elimination by the year 2030.

CHIPO: Congratulations on the well-deserved honor! Can you share a bit about the work and goals of your organization?

Arafat: Due to its proximity to the Democratic Republic of Congo, Kasese feels the effects of war and conflict acutely, and the area is quite fragile. Peace and Conflict Resolution is the first of three priority areas for GLPC and is driven forward by the efforts and demographic dividends of young people. Health Promotion and Public Policy is the second priority area, which encompasses awareness and education about hepatitis, HIV/AIDS, malaria, and tuberculosis prevention, screening, and treatment, as well as nutrition assessments, counseling, and support, especially for mothers of children under five years of age. Water, Sanitation, and Hygiene is another topic of top concern, and initiatives in this sector included a hand-washing campaign for COVID-19. The last focus area under the Health Promotion umbrella is adolescent sexual and reproductive health, and especially promotion of education equity for menstruating young women and ending of stigma and discrimination around this, thus keeping young women in school for longer. Social empowerment happens through education, and people can donate to keep girls in school with financial support. The third organizational priority is to focus on climate change – GLPC distributes solar panels through public and private partnerships, as a great step toward sustainability and protecting the planet we share.

 CHIPO: What are some of the biggest barriers to hepatitis screening, prevention, and care in your community?

Arafat: As I mentioned above, the widespread presence of myths and misconceptions about hepatitis B, especially about transmission, is one of the biggest culprits in perpetuating the stigma and discrimination that still dominate the hepatitis B conversation and presents one of the biggest challenges to increasing screening and vaccination. Some ways that we are working to dispel some of these misconceptions are through our social media platforms, which all have huge followings by younger people. However, attitudes are very slow to change, and this is why the involvement of religious and community leaders in spreading accurate information and shifting the narrative around viral hepatitis is so important, and why personal testimonials and connections with people who are living with hepatitis B hold such power.

Other challenges to screening, prevention, management, and treatment of hepatitis B in Kasese include the enormous out-of-pocket costs of diagnosis and testing; the persistent lack of awareness among the general population – primarily lack of information, education, and communication; the lack of logistics and supplies for things like test kits and cold chain storage for vaccines; and the long distances and mountainous topography that make access to health facilities in larger cities difficult. Additionally, funding and resources from the government and other stakeholders remain inadequate, making it difficult to ensure that services will be available when they are needed. The Minister of Health and government of Uganda have created infrastructure to help with vaccination (they have provided 1 million USD for this reason), have recommended universal adult vaccination, and have also waived fees for viral load investigation. However, things like ultrasound scans, complete blood count panels, and other tests to determine when someone would need treatment for hepatitis are not subsidized. The government could also do a great deal more in terms of increasing awareness, investing money into management and care, prioritizing the birth dose of the vaccine to prevent mother-to-child transmission of hepatitis B, and addressing the stigma and discrimination so many living with hepatitis B routinely face.

Many infants also continue to be delivered by traditional birth attendants, who are not trained in preventing mother-to-child transmission of hepatitis B, and knowledge among community health workers in general is very low. There is also inadequate data and surveillance of the disease, and no records of screening, vaccination, or care are kept in the Health Management and Information System. There is a lack of clear guidelines around testing for the medical community and a lack of materials that can help to raise awareness and combat stigma.

We also really need to integrate hepatitis services into those that exist for HIV/AIDS. Machines that are used to test for HIV/AIDS can be recalibrated to also test for hepatitis. Electronic Health Records can be upgraded to include hepatitis B status. As awareness grows, patients can also hold health workers accountable for hepatitis testing, as they do now for HIV and syphilis. This conversation needs to start with the people themselves.

 CHIPO: How are you planning to use CHIPO’s materials and resources over the next year?

Arafat: We have a saying in Kasese: “When you talk in a foreign language, you talk to people’s heads. When you speak in their language, you speak to their hearts.” Our first priority is to translate CHIPO’s flip charts, takeaway cards, and guides for health educators into our local dialects of Lhukonzo and Runyakitara, in order to reach as many community members and stakeholders as possible. We will host four community educational events using the materials and in these events, will focus on hepatitis B overview, causes and prevention, common myths and misconceptions, and unmet needs in this area. These sessions will be moderated by NoHep Champions and Hepatitis Ambassadors, so that the community can hear from people with direct experiences of the disease and their voices can be amplified.

Additionally, we will host NoHep Champion Table Talks, which are informal discussions that will consist of young people living with HBV and pregnant women, who will share stories and build community. These talks will touch upon how people are doing physically, as well as with handling stigma, and will identify needed services, insights which can help to determine future programming and practices. These talks will also emphasize that no one is alone, and that hepatitis B is not a death sentence, but that people with HBV can live long and healthy lives. We will also convene community barazas (gatherings) with local leaders, including social workers, health workers, village health teams, hepatitis ambassadors, local council, and cultural, community, and religious leaders to conduct trainings on delivery of the educational materials. These will provide an opportunity to educate and invite open discussion. We will also hold continuing education courses on hepatitis B for healthcare professionals at health facilities, including community health workers, village health teams, and para-social workers. Finally, we are planning to compose a radio jingle related to hepatitis B that will be heard around the district.

Only 1 in 10 people in Kasese know their hepatitis B status. These materials can go a long way in changing that.

CHIPO: Thank you so much for your valuable insights and for all of the work you are doing! Do you have any final thoughts or messages that you would like to share?

Arafat: I would just like to mention our No Hep Mamas campaign, which we are also implementing for the prevention of mother-to-child transmission of hepatitis B. We are working to bring this campaign to more health facilities, and share this information in prenatal care settings, as stopping the cycle of transmission is truly the best way to eliminate hepatitis B.

CHIPO: Thank you so much again for your time today, Arafat, and we look forward to more inspiring work from you in the future!

Arafat: Thank you very much!

Liver Health

Hemochromatosis: Treatment, the Liver, and Hepatitis B

Genetic conditions can be an unfortunate part of life, but with information and support, some can be managed. By sharing your family health history and learning about genetic disorders that run in the family, measures can be taken to prevent damage and help your loved ones stay healthy!

Hereditary hemochromatosis is one of the most common genetic disorders. The Centers for Disease Control and Prevention (CDC) reports that approximately 80-90% of hemochromatosis cases are from the hereditary form of the condition1. Due to a mutation in the HFE gene, the body begins to produce too much iron – a process

Northern European Countries

called iron overload. Iron overload can cause complications in the liver, heart, and pancreas2. According to the National Organization for Rare Disorders (NORD), hereditary hemochromatosis has several names that all refer to the same disorder: bronze diabetes, classic hemochromatosis, hemochromatosis type I, hemosiderosis, HFE-related hemochromatosis, HH, and primary hemochromatosis. The two non-hereditary forms of hemochromatosis are secondary hemochromatosis and neonatal hemochromatosis. Both are considered to be rare. Although the hereditary form is common, the exact number of patients worldwide is unknown. Globally, it is estimated that 1 in 227 individuals of Northern European descent is living with hemochromatosis. In the U.S, an estimated 1 million individuals are impacted as well 2. 

Not everyone who has the mutant gene develops hemochromatosis. These individuals are known as “carriers”; they can pass the gene on without suffering from the symptoms. Symptoms include joint pain, fatigue, abdominal pain, unexplained weight loss, and a bronze or grey skin color. For most patients, symptoms do not appear until middle age (40-60) because it takes time for the iron to build up in the body. Males tend to be affected more often than women and experience symptoms at a younger age as well 3,2. Some carriers for the mutant gene may develop a more severe version of the disorder called juvenile hemochromatosis. With juvenile hemochromatosis, patients experience an excessive amount of iron overload that can lead to liver and heart damage between the ages of 15 and 30.

Hemochromatosis, the Liver, and Hepatitis B

While the body needs a certain amount of iron to function, iron overload can be dangerous.  Hemochromatosis can lead to two major liver issues: hepatomegaly and cirrhosis. Hepatomegaly is the enlargement of the liver and cirrhosis is the scarring of the liver. Both issues can impair the liver’s ability to function and filter out toxins that enter the body. They can also increase a person’s risk of developing liver cancer. Recently, two major studies by the University of Exeter and the U.K. University of Connecticut, and the U.S. National Institute on Aging have found that a person living with hemochromatosis has four times the risk of developing a liver disease than a person who is living with the disorder.

For individuals living with hepatitis B, it is extremely important to understand any behaviors or conditions that may have a negative impact on your liver. Since one liver disease can increase your risk of another liver disease, it is important to identify the disorder as early as possible, especially if you have any of the following risk factors:

Risk Factors for Hereditary Hemochromatosis:

  • Men or postmenopausal women
  • Of Northern European descent
  • Having a relative with hemochromatosis

Risk Factors for Secondary Hemochromatosis:

  • Alcoholism
  • Family history of diabetes, heart disease, or liver disease
  • Taking iron or vitamin C supplements

Hepatitis B patients do not have an increased risk of developing hemochromatosis4. However, if you have any of the above risk factors, it is important to get tested. Hemochromatosis can easily be identified by a comprehensive look at a person’s family health history, a physical exam, and a simple blood sample. Your doctor will then use the blood sample to run a series of tests that may include transferrin saturation (TS), serum ferritin, or liver function tests. In certain cases, the doctor may also perform genetic testing to see if the mutant HFE gene is present.

Treatment

Treatment for hemochromatosis is available! Based up tests results, family history, medical history, and the appearance of symptoms, the doctor may suggest a few different treatment methods. In therapeutic phlebotomy – the most common treatment method – a patient undergoes regular blood draw to lower the amount of iron in the body. This method is effective, affordable, and typically lasts for an extended period of time. Through iron chelation therapy, patients can either receive an injection or orally consume a medication that will lower the amount of iron in your blood. Finally, some doctors may suggest changes to your diet, such as eating less vitamin C, avoiding alcohol and shellfish, and not taking iron supplements. Dietary changes are mainly used to prevent liver damage.

For more information on HH, you can visit the National Heart, Lung, and Blood Institute.

References:

  1. Grosse, S. (2017). A New Public Health Assessment of the Disease Burden of Hereditary Hemochromatosis: How Clinically Actionable is C282Y Homozygosity? [Blog]. Retrieved from https://blogs-origin.cdc.gov/genomics/2017/08/16/a-new-public-health-assessment/
  2. National Organization for Rare Disorders. (2019). Classic Hereditary Hemochromatosis. Retrieved from https://rarediseases.org/rare-diseases/classic-hereditary-hemochromatosis/#general-discussion
  3. National Institute of Diabetes and Digestive and Kidney Diseases. (2019). Hemochromatosis. Retrieved from https://www.niddk.nih.gov/health-information/liver-disease/hemochromatosis
  4. Beaton, M., & Adams, P. (2007). The Myths and Realities of Hemochromatosis. Canadian Journal Of Gastroenterology, 21(2), 101-104. doi: 10.1155/2007/619401

Living with Hepatitis B, Relationships

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

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

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

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

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

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

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

So, how can you prepare for the conversation?

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

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

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

For Partners of Chronic Hepatitis B Patients:

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

About Hepatitis B, Hepatitis B Prevention

What’s the Difference: Hepatitis A vs Hepatitis B

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

This is part two in a three-part series.

What is Hepatitis?

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

Hepatitis A vs. Hepatitis B

While hepatitis A and B both impact the liver, the two viruses differ greatly from one another. Hepatitis B is a blood-borne pathogen; its primary mode of transmission is through direct blood-to-blood contact with an infected person. In contrast, hepatitis A can be spread by fecal-oral transmission or by consuming food or water that has been contaminated. It is important to note that a person cannot contract hepatitis B through casual interactions such as holding hands, sharing a meal with, or eating foods prepared by someone who is infected. There is no need to keep plates and utensils separate. However, hepatitis A can be spread through food that is prepared by an infected person. Hepatitis A is primarily caused by poor sanitation and personal hygiene. Poor sanitation and hygiene can be the result of a lack of essential infrastructure like waste management or clean water systems. It can also result from a lack of education.

Hepatitis A is an acute infection; the virus typically stays in the body for a short amount of time and most people make a full recovery after several weeks. Recently, the United States has seen a rise in hepatitis A infections. The rise is partially attributed to a growing homeless population and increases in injection drug use. You can track hepatitis A outbreaks in the United States by using this map.

Unlike hepatitis B, which rarely has symptoms, people infected with hepatitis A generally develop symptoms four weeks after exposure. However, children under the age of 6 often do not show any symptoms. Oftentimes, an infected adult will experience nausea, vomiting, fever, dark urine, or abdominal pain. Older children and adults with hepatitis A will typically experience jaundice, according to the Centers for Disease Control and Prevention (CDC). Once a person makes a recovery, they cannot be reinfected. Their body develops protective antibodies that will recognize the virus and fight it off if it enters their system again. Hepatitis A rarely causes lasting liver damage, but in a small percentage of individuals, it can cause acute liver failure called fulminant hepatitis. Some people with hepatitis A feel ill enough that they need to be hospitalized to receive fluids and supportive care.

On the other hand, hepatitis B begins as a short-term infection, but in some cases, it can progress into a chronic, or life-long, infection. Chronic hepatitis B is the world’s leading cause of liver cancer and can lead to serious liver diseases such as cirrhosis or liver cancer. Most adults who become infected with hepatitis B develop an acute infection and will make a full recovery in approximately six months. However, about 90% of infected newborns and up to 50% of young children will develop a life-long infection. This is because hepatitis B can be transmitted from an infected mother to her baby due to exposure to her blood. Many infected mothers do not know they are infected and therefore cannot work with their physicians to take the necessary precautions to prevent transmission. It is extremely important for all pregnant women to get tested for the hepatitis B – if they are infected, transmission to their baby can be prevented!

There are vaccines to protect people against both hepatitis A and hepatitis B. If you are unvaccinated and believe that you have been exposed to hepatitis A, you should contact your doctor or local health department to get tested. If you were exposed by consuming contaminated food, the health department can work with you to identify the source of exposure and prevent a potential outbreak. Depending on the situation and when you were exposed, your doctor may administer postexposure prophylaxis (PEP) to help prevent the infection or lessen its impact. For hepatitis A, PEP is given in the form of one dose of the vaccine or immune goblin.

For unvaccinated individuals, PEP is also recommended after a possible exposure to hepatitis B and is usually given as a dose of the vaccine. In certain cases, a physician will recommend that a patient receive both the vaccine and a dose of hepatitis B immune globulin (HBIG) for additional protection. As recommended by the CDC, all infants born to hepatitis B surface antigen positive mothers (HBsAg positive) should receive both a dose of the hepatitis B vaccine and a dose of HBIG within 12 hours of birth in order to prevent transmission. As timing is crucial in the prevention of disease, a healthcare provider should be notified as quickly as possible after a potential exposure.

Prevention

Hepatitis A and B vaccines can protect you for life! The hepatitis A vaccine is given in 2-doses over the span of six months and the hepatitis B vaccine is given in 3-doses over the course of six months; there is even a 2-dose hepatitis B vaccine now available in the U.S.! You can also ask your doctor about getting the combination vaccine for hepatitis A and B together, which will reduce the number of shots you need.

The CDC recommends that people living with chronic hepatitis B also get vaccinated for hepatitis A to protect themselves against another liver infection and potential liver damage. While the hepatitis A vaccine is routinely given to children in the United States, other countries have different vaccine recommendations, so check with your doctor to see if you have been vaccinated. Hepatitis A can also be prevented by good hygiene practices like washing your hands with soap and hot water after using the bathroom or before preparing food, but the best form of prevention is always vaccination!

Hepatitis B Advocacy, Hepatitis B Prevention

Vlog: Lunch & Learn Session with Jefferson APAMSA

Join Michaela Jackson for A Day in the Life of a Public Health Coordinator as she takes you behind the scenes of Hep B United Philadelphia.

In this episode, the Hepatitis B Foundation joins Hep B United Philadelphia in the City for a Lunch & Learn session with Jefferson University APAMSA students.

Liver Cancer

Join us for a Twitter Chat for Liver Cancer Awareness Month!

October is Liver Cancer Awareness Month. Often we neglect to think about the link between hepatitis and liver cancer. Tuesday, Oct. 16, representatives from Hepatitis B Foundation, CDC’s Division of Viral Hepatitis, and NASTAD will co-host a twitter chat at 3 p.m. EST to discuss this important link.

Featured guests include Prevent Cancer Foundation, Hep B United Philadelphia (HBUP) and Iowa Harm Reduction Coalition. Prevent Cancer Foundation is a national nonprofit dedicated to cancer prevention and early detection. HBUP is a Hep B United partner committed to testing and vaccination to fight hepatitis B and liver cancer in Philadelphia. Iowa Harm Reduction Coalition is a non-profit organization providing non-judgmental and compassionate services that empower people to care for themselves and one another.

Below are the questions to be discussed during the chat. How can you contribute?  Join the conversation that day and throughout the month with the hashtag #Liverchat. Share any resources or strategies you have that raise awareness about the link between liver cancer and hepatitis.

  • 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 populations more vulnerable to hepatitis and liver cancer, and how do we address the disparities?
  • Q5: What resources are available to educate others about hepatitis B & C and liver cancer? What resources are needed?
  • Q6: Who are your key partners in addressing liver cancer? Who would you like to engage more in your work? (Tag them here!)
  • Q7: 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?

Co-hosts and featured partners of the chat include:

  • Hepatitis B Foundation – @hepbfoundation
  • NASTAD – @NASTAD
  • CDC Division of Viral Hepatitis – @cdchep
  • Prevent Cancer Foundation – @preventcancer
  • Hep B United Philadelphia – @hepbunitedphila
  • Iowa Harm Reduction Coalition – @IAHarmReduction
  • CDCNPIN will be moderating the chat – @cdcnpin

Confirmed participants and their handles include:

  • Hep B United  – @hepbunited
  • Coalition Against Hepatitis For People of African Origin – @CHIPO_HBV
  • Liver Cancer Connect – @livercancerconn
  • CDC’s Division of Cancer Prevention and Control – @CDC_Cancer
  • Hep Free Hawaii – @HepFreeHawaii
  • HBI-DC – @HBIDC
  • HepFreeNYC – @hepfreenyc
  • NAIRHHA Day – @NAIRHHADAY
  • Minnesota Department of Health – @mnhealth
  • Philly Hep C Coalition – @hep_CAP

Just getting started with Twitter? Do you wish to join the conversation but you don’t know how?  Type #Liverchat in the search box of the Twitter application to follow the chat, and click on “Latest”.

 

You can prepare your tweets in response to the topics listed above in advance, or you can also tweet on the fly, re-tweet, or Like a tweet during the chat.

The questions are labeled Q1, Q2, etc. so please respond/answer specific question by using A1, A2, etc. in front of your tweets. Remember to include the #Liverchat hashtag, which is not case sensitive, in all of your tweets.

If you plan to participate, please contact us at info@hepb.org and we’ll add you to the list of confirmed participants. Let us know if you have any other questions about joining the chat. We’re here to help!

 

 

 

Hepatitis B Prevention, Hepatitis B Treatment

Be Your Own Advocate in the Medical Room

The hepatitis B virus (HBV) can be transmitted two ways: 1) through direct contact with blood and 2) infected body fluids. Some risks for direct blood contact are obvious, such as touching an open wound to another open wound or cleaning up someone’s blood without any protective gear. However, other methods of blood transmission are harder to catch. Common activities like sharing razors, earrings, or toothbrushes are simple, innocent actions, yet they all have the potential for blood exchange.

Medical and dental procedures are aspects of our lives that we might not think twice about. While beneficial to our health, they also carry the risk of exposure to another person’s blood. Surgeries, shots, and dental activities all use sharp objects that pierce the skin and draw blood.  If the tools are not properly sterilized, or cleaned, before they are used on a new patient, the blood that was on the equipment can be transferred to the next patient.

Image courtesy of Cook Services

How do I know if medical tools are sterile? Ask! It is your right to know if the equipment that will touch your body has been thoroughly cleaned. In a dentist office, the assistant might unwrap a package of tools in front of you; this typically means that the tools are either new or have been properly cleansed. In a medical setting, needles and surgical equipment might come in packaging as well. If you still are not certain, feel free to ask what the standard cleaning procedures are for the tools being used. The staff will be happy that you are taking your health into your hands!

Why is it important to have sterile tools?   Hepatitis B earned the nickname “silent infection” because there are often no symptoms. Those who have been infected may not take the necessary precautions simply because they do not know that they should. They may not even know they are infected! In many cases, medical and dental professionals are unaware when a patient has hepatitis B. Therefore, it is important to make sure that all equipment that is being reused has been sterilized. Although there are no global sterilization standards, many countries and medical facilities around the world – like hospitals, dental offices, and doctor offices – have disinfection guidelines and practices for their equipment.

Tips to Protect Yourself:

  1. Be your own advocate: Ask the dental hygienist, nurse, doctor, acupuncturist or person in charge of your procedure if the tools have been sterilized.
  2. Know where you go: Try to visit medical or dental facilities that you trust and that provide clean, safe environments for any procedures involving blood or body fluids.
  3. Get vaccinated: Hepatitis B is a vaccine preventable disease. After receiving all three doses, most people are protected for life! Check your immunization records to make sure that you have been vaccinated or ask your doctor or local clinic about the vaccine.
  4. Share with caution: Sharing or eating food prepared by someone with hepatitis B is safe, but any activities that may involve direct contact with blood carry a risk. A good guideline is to keep all personal hygiene items personal.

If you think you have been exposed to hepatitis B, it is important to get tested. Visit your doctor or local health clinic to get screened.

If you have been diagnosed with chronic hepatitis B, our Physicians Directory*  can help you locate a liver specialist near you. The World Hepatitis Alliance can also help you find health care services and hepatitis B education in your country.

*Disclaimer

The Hepatitis B Foundation Liver Specialist Directory is intended for use by the public to assist in locating a liver specialist within a specific state or country. All data is self-reported and is not intended for use by organizations requiring credentialing verification. The HBF does not warrant the accuracy, completeness, timeliness, or appropriateness for a particular purpose of the information contained in the Liver Specialist Directory. The HBF does not endorse the individuals listed in the service, nor does HBF verify medical qualifications, licenses, practice areas or suitability of those listed. In no event shall the HBF be liable to you or anyone else for any decision made or action taken by you based upon the information provided in the service. Note: This is not a physician referral service. The HBF cannot provide referrals to specific physicians nor advice on individual medical problems.

Hepatitis Delta (HDV), Living with Hepatitis B

Karen and Dave’s Story

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

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

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

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

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

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

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

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

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

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

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

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

– Karen

Hepatitis B Advocacy

Vlog: Why is the Hep B United Summit Important?

Join Michaela Jackson for A Day in the Life of a Public Health Coordinator to learn about why the annual Hep B United Summit is important!

In this episode, some of the Hep B United coalition partners explain why some of the leaders in the hepatitis B world gather in Washington D.C. each year. The Summit took place from July 24th – July 26th, 2018.

Hepatitis B Diagnosis & Monitoring

Newly Diagnosed with Hepatitis B? How Did I Get this? Learning the HBV Transmission Basics

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If you have just been diagnosed with hepatitis B virus (HBV) then you need to understand how HBV is transmitted. This is important whether you have an acute or chronic infection.  You must understand you are infectious and can transmit the virus to others.

How is hepatitis B transmitted?

Hepatitis B is transmitted through direct contact with infected blood or certain bodily fluids. The virus is most commonly transmitted from an infected pregnant person to their baby during childbirth, due to the blood exchange that happens between mother and baby. It is also transmitted through unsterile medical or dental equipment, unprotected sex, or unsterile needles. For kids, pediatric experts report that the fluid that oozes from cuts and open sores is also highly infectious, so keep those open cuts covered. Hepatitis B 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, the virus is not contracted during most of life’s daily activities. You don’t need to keep cups, bowls, plates or utensils separate. Hugging, or even kissing won’t cause infection unless there are bleeding gums or open sores during the exchange. It’s really all about trace amounts of infected blood, though the virus is in other bodily fluids in lower concentrations. For example, it’s not the saliva on the toothbrush that is a big concern, but rather the potential for trace amounts of blood that could be exchanged with a shared toothbrush.

How did I get this? If you have been diagnosed with hepatitis B virus you are likely racking your brain trying to figure out how you could have gotten HBV.  Some can immediately track their likely exposure to a recent event, or perhaps a time period in their life where they were more likely to have been exposed. They may fit into an at-risk category for hepatitis B due to lifestyle choices, country of origin, frequent travel and exposure in endemic areas of the world, or an unsafe blood transfusion, or medical or dental procedures performed without proper infection control. Some may never know how they were infected. What is important is that you are now aware.

Since HBV is a silent infection there can be years before it is detected.  Many individuals born in endemic parts of the globe find out later in life that they are hepatitis B positive, even though they have likely had HBV since birth or early-childhood. Children are especially vulnerable to chronic HBV. Greater than 90% of babies and up to 50% of young children infected with HBV will remain chronically infected, and most will have no symptoms.  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. In Asia, vertical transmission from mother to child is particularly common; whereas in Africa, horizontal transmission at a young age may be more likely.

Although not casually transmitted, there are inadvertent opportunities for exposure to hepatitis B. If you are from an area where HBV is very common, then the odds of exposure, transmission, and infection will be higher. Many are surprised when family is tested, and they learn hepatitis B appears to “run in their family”.  Hepatitis B is NOT genetic! It is not carried on the sperm of a man or the egg of a woman, but it is very easily passed from an HBsAg positive mom to her baby at birth. Hep B is a vaccine preventable disease, but not all moms living with the virus have access to the birth dose for their baby or able to complete the vaccine series, or they have a high viral load resulting in failure of HBV birth prophylaxis. The good news is that today we can prevent the transmission of hepatitis B to the next generation.

If you do, or have participated in high-risk activities at some point in your life, you are also at greater risk. This is not a time to judge or be judged.

Time to move forward. Unless your infection is acute and you can definitively identify your exposure, I would advise that you let it go and move forward. I spent a number of years wondering about the details of my daughter’s infection, but ultimately, it really didn’t matter. What is important is seeing a doctor to learn more about your infection, getting treatment if you need it, preventing transmission to others, and moving forward with your life.

Baruch S. Blumberg Institute