World Kindness Day is just around the corner on November 13th. On World Kindness Day, we celebrate kindness and spread it around the world. Let’s celebrate this day by treating people living with hepatitis B with kindness, compassion, and respect.
Unfortunately, hepatitis B is often highly stigmatized – and the people living with it can feel ostracized. Why is there so much stigma surrounding hepatitis B? A study found that among Asians, the majority thought hepatitis B was a genetic disease which is why the family might feel stigmatized if a family member is living with it.1 Due to cultural values, interdependence, collectivism, and family centeredness, persons of Asian descent might think that having hepatitis B is a reflection on the family.1 This attitude could lead to people not wanting to get tested for hepatitis B because they worry about bringing stigma to the family.1 Another study found that among African communities, individuals were confused about the differences between hepatitis B, HIV, malaria, and other infectious diseases.2 This misattribution and confusion could lead to a person living with hepatitis B being perceived as an outsider to society and can cause stigma or discrimination.2
The studies demonstrate that the lack of education and information surrounding hepatitis B contributes to the stigma that individuals living with hepatitis B face. There is a lot of ignorance, myths, and misconceptions about hepatitis B. Let’s debunk some of these notions!
Hepatitis B cannot be spread through casual contact, only through blood-to-blood contact or sexual transmission. This means you can hug, kiss, and share a meal with your friends and family without worrying about contracting hepatitis B. In Asian communities, it is especially important to emphasize that family members living with an individual who has hepatitis B, can share meals with each other. And there is a safe and effective vaccine to protect loved ones – so transmission can be prevented!
Sometimes people do not want to discuss their hepatitis B status because of its association with intravenous drug use. People who inject drugs experience more discrimination because of the stigma surrounding addiction. On the flip side, individuals who do not inject drugs but are living with hepatitis B, might not want to discuss their status for fear that other people will stigmatize or label them as drug users. Additionally, people might assume individuals living with hepatitis B engage in risky sexual behavior which can further stigmatize them. This stigmatization only harms people living with hepatitis B because they cannot talk about their status openly, which would help destigmatize the disease.
Even extending past World Kindness Day, we encourage you to be kind to people living with hepatitis B. And if you are living with hepatitis B, please be kind to yourself! Continue to educate yourselves on hepatitis B to help lessen the stigma and discrimination surrounding it.
Below is a brief list of resources for people living with hepatitis B or individuals living with people living with hepatitis B.
Know Your Rights – for anyone experiencing discrimination because of their hepatitis B status
References
Kim, M. J., Lee, H., Kiang, P., Watanabe, P., Torres, M. I., Halon, P., Shi, L., & Church, D. R. (2015). Debunking the myth: low knowledge levels of HBV infection among Asian American college students. Asia-Pacific journal of oncology nursing, 2(1), 8–16. https://doi.org/10.4103/2347-5625.152399
Mokaya, J., McNaughton, A. L., Burbridge, L., Maponga, T., O’Hara, G., Andersson, M., Seeley, J., & Matthews, P. C. (2018). A blind spot? Confronting the stigma of hepatitis B virus (HBV) infection – A systematic review. Wellcome open research, 3, 29. https://doi.org/10.12688/wellcomeopenres.14273.2
November is National Family Caregivers Month! There are over 40 million Americans who are unpaid caregivers to their families, friends, and neighbors1. This month we celebrate and support all the caregivers who work tirelessly to keep our family and communities strong.
Caregivers and Hepatitis B
Caregiving can be a tough, but noble job. It is often unpaid, long hours, and can cause burnout. However, caregivers selflessly work to provide their friends or family with the best care possible. Hepatitis B just does not affect the person living with the virus; it affects their family, friends, coworkers, and community members. Someone who lives with an individual who has hepatitis B might be put in a caregiver position.
Caring for an individual living with hepatitis B might be difficult if the person has advanced liver disease or is experiencing side effects from medication. While it may not always be physically demanding, caring for a person with hepatitis B can be emotionally overwhelming. Caring for an individual living with hepatitis B and other related complications can stir up heavy emotions which can take a toll on a caregiver’s mental health. Managing medications, diet, and healthy lifestyle for people living with hepatitis B during the COVID-19 pandemic can especially feel stressful. Luckily, there are resources available to help reduce feelings of stress and being overwhelmed.
Resources for Caregivers
Feeling stressed or overwhelmed with taking care of your friend or family member? It is also important to look after your own physical and mental health. Check out these resources from the How Right Now Initiative to help you manage your stress especially during COVID-19. Some suggestions include:
Go for a quick walk or stretch
Call, text, or video chat with friends or family
Take several deep breaths
Does someone in your close circle have hepatitis B? Check out the Centers For Disease Control and Prevention’s Know Hepatitis B Campaign’s fact sheet, “When Someone in the Family has Hepatitis B”. This fact sheet has basic information about hepatitis B and the importance of testing and vaccinating family members. The fact sheet is available in 13 Asian and African languages as well as three English versions focused on Asian American, Native Hawaiian and Pacific Islander, and African Immigrant communities. Download the fact sheet here.
For more information about the Know Hepatitis B Campaign, visit the campaign website.
A new page has been created on the Hepatitis B Foundation’s website that contains a compilation of various opportunities available for people living with hepatitis B. These opportunities can be for clinical trials, other types of research, or toolkits with information and resources for those living with hepatitis B and their loved ones and community members. All of these postings are produced or organized by entities external to HBF, but all are related to improved quality of life and liver health. The first two of these opportunities are listed below.
New Tool from CME Outfitters
A new HBV Patient Education Hub has been compiled by continuing medical education company CME Outfitters. The hub includes a great deal of valuable information, such as an overview of hepatitis B, a list of questions to ask your healthcare provider, a patient guide, information about hepatitis B co-infection, doctors’ advice on what to expect from treatment, and many other resources. All information is in an engaging and accessible format. Check it out today!
New Study Opportunity Available for People Living with Itching (Cholestatic Pruritus) Due to Liver Disease or Injury
A new paid opportunity has become available for those experiencing itching caused by hepatitis B, hepatitis C, drug-induced liver injury, auto-immune hepatitis, or primary sclerosing cholangitis (PSC). If you live in Canada or the US and have this condition, you may be eligible to participate in an interview to help researchers better understand your lived experience. The new research study is seeking participants ages 12-80 living in the US and Canada who are living with this itch. This is an opportunity to be involved in research and help advance scientific understanding! Contact the research coordinator for more information and to check if you are eligible.
Please note that this study does not include treatment and pruritus must be at an intensity level of 4 on a scale of 1-10 for at least the past 8 weeks in order to participate. Patients cannot be pregnant or breastfeeding or have a diagnosis of primary biliary cholangitis.
We are very excited to unveil this new section of our website and hope it will be a useful resource for many going forward! Please check back often, as more opportunities will be posted as they arise.
Hepatitis B and Discrimination of Health Care Students
Hepatitis B virus (HBV) infection affects more than 290 million persons globally and up to 2.2 million persons in the United States. Living with hepatitis B can mean living with stigma and facing discrimination. Stigma related to hepatitis B is often caused by low awareness from the general public and health care providers. Low awareness can lead to fear and misconceptions about the disease. Discriminatory practices that affect health care students with hepatitis B infection may include unjustified denial of school admission or enrollment, restriction of clinical training, or dismissal from an academic program. Given substantial progress in hepatitis B research and treatment in recent decades, it is important to address discriminatory policies that affect health care students.
Kate Moraras, Deputy Director of Public Health at the Hepatitis B Foundation led a research project which found that 36 accredited health care programs in Pennsylvania (43%) had policies which appear to be discriminatory against students living with hepatitis B. These policies included requiring proof of hepatitis B immunity for enrollment or program completion. Failure to produce proof could result in revocation of program admission or not being allowed to enter clinical rotations. This is problematic because the Americans with Disabilities Act (ADA) protects individuals living with hepatitis B. The Department of Justice (DOJ) states that there is no lawful basis for excluding persons living with hepatitis B from health profession schools. Not only does the DOJ protect individuals living with hepatitis B, but the Centers for Disease Control and Prevention (CDC) states that health care students with hepatitis B pose no risk to patients and should not be limited in their health care education. The CDC recommends that health care students should not be arbitrarily excluded or restricted from activities that could impede practice or studies. They additionally recommend hepatitis B testing only for healthcare providers at increased risk of infection or conducting invasive, exposure-prone procedures and most health care students are not participating in these invasive procedures. If you want to know what to do if you are facing discrimination visit the Know Your Rights section of our website.
Resources
Please join Hep Free Hawai’i, ACLU Hawai’i, the National Task Force on Hepatitis B: Focus on AAPIs, Hep B United, and Hepatitis B Foundation on October 15th at 6PM ET to address hepatitis B discrimination among health care students. Dr. Chari Cohen, Senior Vice President of the Hepatitis B Foundation and Taylor Mangan, University of California President’s Public Service Law Fellow at ACLU Hawai’i will discuss hepatitis B related institutional discrimination against health care students, current protections and recommendations in place to protect health care students from discrimination. Register here.
The Hepatitis B Foundation’s website has an entire page focused on the rights of individuals living with hepatitis B. Check it out each section:
Moraras, K., Block, J., Shiroma, N., Cannizzo, A., & Cohen, C. (2020). Protecting the Rights of Health Care Students Living With Hepatitis B Under the Americans With Disabilities Act. Public Health Reports, 135(1_suppl), 13S-18S. https://doi.org/10.1177/0033354920921252
Author: Evangeline Wang, Program Coordinator, Hepatitis B Foundation
On Monday September 21st, a virtual celebration was held in honor of the sixth anniversary of National African Immigrant and Refugee HIV and Hepatitis Awareness (NAIRHHA) Day. This day, which itself is commemorated on September 9th, was created to build awareness and dismantle stigma around HIV and viral hepatitis in African immigrant and refugee communities. It takes place in September because this is the month that has been designated as National African Immigrant Month (NAIM) in the United States to celebrate the diverse and remarkable contributions African immigrants have made to enrich the United States, in spheres ranging from sports to writing to politics.
The virtual celebration that occurred last Monday included a discussion of the history of NAIRHHA Day and how it came to exist in its present form, a conversation with a hepatitis B advocate who is living with the disease, discourse about the importance of NAIRHHA Day on the national level and implications for making it a federally recognized day, and trivia questions about HIV and hepatitis B.
History of NAIRHHA Day: The Journey from 2014 to Present
Moderator: Chioma Nnaji, MPH, MEd, Program Director, Multicultural AIDS Coalition
Panelists: Augustus Woyah, Program Officer for Minority AIDS Initiative, Maryland Department of Health
Amanda Lugg, Director of Advocacy and LGBTQ Programming, African Services Committee
The idea for NAIRHHA Day was first conceived in 2006 at a convening of the Ethiopian Community Development Corporation in Washington, DC, at a session sponsored by Office of Minority Health about HIV in African immigrant communities. Conferences started to occur, primarily in the Northeast, although there was also interest in Atlanta and Seattle. It seemed that an opportunity had finally become available for advocates, researchers, and providers to all come together and focus on data collection, community mobilization, and policy work around HIV and viral hepatitis in African immigrant communities. The African National HIV/AIDS Alliance was established in 2010 and awareness days started in 2012 (Augustus played a large role in this). In 2014, Chioma Nnaji became connected to Sylvie Bello, the Executive Director of the Cameroonian Association in Washington, DC, and they, along with Amanda and Augustus, worked to get NAIRHHA Day off the ground. Chioma has largely spearheaded efforts to have NAIRHHA Day recognized nationally.
In terms of some of the challenges that have and continue to exist around NAIRHHA Day, obtaining community leadership and organizational buy-in, as well as national attention, are at the forefront. Social media and other digital platforms have been widely used in order to amplify the cause and try to obtain federal recognition. Additionally, maintaining relationships with government agencies has been quite difficult and has become a clash of visions of sorts. There is a strong belief that NAIRHHA Day should be a community-driven effort, but government agencies often have their own priorities, which can be distinct from those of the community and grassroots organizers. This is not to discount the government and organizational partners that are still involved, however, including NASTAD, the Hepatitis B Foundation, CHIPO, CHIPO-NYC, and Africans for Improved Access at the Multicultural AIDS Coalition. Another challenge has been reinforcing the distinction between African immigrant and African American communities and not treating the Black community as a monolith. Drawing this distinction in both data and policy remains difficult, thus often rendering African immigrant communities invisible.
When pondering what areas could use improvement going forward, a number of different items were considered. These included incorporating COVID-19 into the conversation, along with viral hepatitis and HIV; addressing social and environmental determinants of health that lead to the over-prevalence of both infectious and non-communicable diseases in minority, and particularly African immigrant communities; adhering to the primary goal of community mobilization and including advocates and researchers to influence policy that provides linguistically and culturally appropriate services that address the most pressing issue of stigma; securing national attention; and obtaining resources. It is critical to remember that advocacy never ends, the need to magnify work and amplify voices is always present, there is no room for complacency, and there exists intersectionality in all issues (social and health justice are all-encompassing).
#justB Storyteller Interactive Discussion
Moderator: Farma Pene, Community Projects Coordinator in Viral Hepatitis Program, New York City Department of Health & Mental Hygiene
#justB Storyteller: Bright Ansah
In this session, Bright spoke about his experience with living with hepatitis B, including his diagnosis, treatment, and communication with his family. He spoke about being able to put a face to hepatitis B, which has helped many people and also allowed him to build strong relationships with a broader community. Bright found out about his status in 2014 and initially felt very lost. The first couple of years were a big struggle, as he did not want to worry his family and it took a while for him to come to peace with his diagnosis. This peace eventually came from a lot of extensive research, after which he found out that hepatitis B is not a death sentence and can be managed very well. He then started to think about what he could do to prevent someone else from becoming “a statistic.”
When asked what message he would share with newly diagnosed people, Bright stated that stress and anxiety are normal, but you are not alone. Every day, people find out they are infected. Bright has given his contact information to many different people and he emphasized the incredible importance of having a support system in place. When asked about how he overcame stigma and barriers, Bright replied that the biggest barrier is the mental hurdle. It took him about two years to not feel overwhelmed. Bright does still struggle with feeling rejected from clinical trials and finds this very frustrating – he still feels like he is being punished for having chronic hepatitis B.
The best advice that Bright can offer is to always be your own advocate and do your own research. If the first doctor or liver specialist that you find does not take you seriously or you feel that they are not doing enough for you, you do not need to stay with them and you can absolutely find another doctor. Bright went through this process himself and eventually found a doctor he likes at Johns Hopkins, through a friend of his. This can be a challenge with language barriers, but there are organizations that can help and there is a Specialist Directory tool on the Hepatitis B Foundation website, a resource that Bright stated he found very helpful, along with the website of the National Institutes of Health (NIH). Farma reiterated that the HBF website is a great place to visit to understand lab results in plain language, and offers a good collection of resources for family and community members of people living with hepatitis B. Bright finds that the most important questions to ask are: What exactly is your status and viral load? What should reasonable expectations for your life and health be? Is treatment appropriate and if so, which one? It is crucial to establish mutual respect with your doctor, and to iterate what expectations you have for your doctor as well. The most important messages are: Reach out. Ask questions. Stand up for yourself. You are not alone.
The Important Role that NAIRHHA Day Plays from a National and Policy Prospective
Moderator: Chioma Nnaji, MPH, MEd, Program Director, Multicultural AIDS Coalition
Panelists: Boatemaa Ntiri-Reid, JD, MPH, Hepatitis Director, NASTAD
Jennease Hyatt, Community Liaison for Boston/New England, GILEAD
The final conversation focused on why NAIRHHA Day should become a nationally recognized holiday. VIral hepatitis is the seventh leading cause of death globally. Nineteen million African adults are living with hep C, and 5-8% are living with hep B. Hep B and HIV need to be considered part of the health portfolio of African immigrants, with care taken that this does not compound stigma. NAIRHHA Day is really an opportunity to focus on this community specifically. You get things done by doing them yourselves and we are who we’ve been waiting for.
There is a strong need for a multi-faceted approach to this work and for local, state, and national partnerships. African immigrants need to be at the forefront of the HIV/AIDS conversation. In Massachusetts specifically, over half of new HIV infections are in immigrant communities: These communities need to be leading the conversation. In terms of the role that government agencies play in NAIRHHA day, this needs to be more than a supportive role. We need to talk about novel approaches. We know that there are healthcare disparities. We need to consider how to use funding to build capacity and engagement, and make sure this work moves forward. This should include counting in community members and small businesses and bringing people to the table who are not usually there. The community really wants to be engaged. Promoting testing and awareness at soccer games, for example, is a great idea. We need strong partnerships and leadership from the beginning and to determine different approaches and thus different outcomes. Community members are the experts and we need to treat them as such.
Across the country, there are jurisdictions that have a prevalence of 40,000 people living with hepatitis in a state and viral hepatitis staff have teams of 1-7. Local and state health departments have more of a role to play. CDC publishes a list of viral hepatitis coordinators by state. It would be great to close the gap with them and discuss more about what they are doing generally and how to get them more involved in NAIRHHA Day specifically. In thinking about a vision for NAIRHHA Day next year, thoughts included that everyone who serves African immigrant communities (including health centers and multi-service organizations) needs to see themselves as part of the solution. Additionally, federal representation should be part of NAIRHHA Day next year.
Trivia and Conclusion
The event concluded with trivia questions about HIV and hepatitis B prevention, testing, and treatment. Amazing music was provided by DJ WhySham and Laura O (@LauraO_TV) served as an excellent moderator. Thanks to everyone who participated and we look forward to another wonderful event next year!
The Hepatitis B Foundation today announced the launch of its B the Voice Story Bank. Building upon the success of our national #justB campaign – launched in partnership with StoryCenter and AAPCHO in May 2017 – we are excited to expand our storytelling efforts internationally. Almost 300 million people worldwide live with chronic hepatitis B, but so many of their stories remain untold. Often this is due to stigma, fear of discrimination, lack of community awareness or understanding of the disease, or lack of support for those wishing to speak out publicly about hepatitis B. The new B the Voice Story Bank provides an online platform for people living with hepatitis B, their families, and community health workers and health care providers to share their first-hand knowledge and experiences with a global audience.
Documenting and sharing the impact that hepatitis B has on individuals, families, and communities around the world is essential in keeping up the momentum to find a cure for hepatitis B and to achieve the global elimination targets set by WHO to be achieved by 2030.
Why is B The Voice Story Bank Important?
“This new program provides many more people with the chance to tell their stories about living with hepatitis B around the world, and the Foundation and our partners will continue sharing this compelling content through our social media and other means” – Chari Cohen, DrPH, MPH (Senior Vice President, Hepatitis B Foundation)
“Speaking out relieves one from self-stigma and denial, but more importantly creates room for one to advocate towards changing something for the better. When you keep silent, the people in power will assume everything is okay until one comes out to challenge the status quo… I also want people to know that while Hepatitis B is a silent killer, one can live a positive and productive life as long as one knows early and follows the doctors’ advice.” -Kenneth Kabagambe, Director, Africa Hepatitis Initiative (Kampala, Uganda)
“Centering the voices of people living with hepatitis B is critical in raising awareness, combating stigma and discrimination, and encouraging more people to speak out or take action in other ways.” “That’s true whether it means getting tested for hepatitis B, talking to a doctor, educating family or community members about prevention or advocating for resources and policies to support countrywide hepatitis B elimination.” – Rhea Racho, MPAff (Public Policy and Program Manager, Hepatitis B Foundation)
Please submit your story whether it’s about diagnosis, living with hepatitis B, access to care and treatment, stigma and discrimination, education and advocacy, support and caregiving, service and programs, or other topics related to hepatitis B. Feel free to answer the questions or write your own narrative. The questions are merely there for guidance – do not feel obligated to answer all of them. We also encourage you to upload a photo of yourself if you are comfortable doing so.
How Will My Story Be Shared?
The content you submit through the online form will first be reviewed by HBF staff. You will then be contacted via email if your story is selected for the B the Voice Story Bank. We may feature your entire story or pick out a few quotes to feature on HBF’s website, blog, social media accounts, newsletters, and other channels. Your first name (there is also the option to remain anonymous) and photo (if you choose to submit one) will be published along with your story. You may also choose to share additional details about yourself such as which country you are from, your age, and if you are affiliated with an organization – but sharing these details is optional.
Amidst the global challenges we are facing, the Hepatitis B Foundation remains a resource for our community and our partners. COVID-19 is a rapidly developing situation, and information about it’s impact on those living with liver diseases such as hepatitis B is still emerging. During this time, it is important to be prepared for all situations, including limited access to necessities. Below, we have provided several tips and tools to help you protect yourself and stay healthy.
Preparing for Quarantine or Self-Isolation
To prevent transmission of the virus, countries around the world are instating protocols requiring individuals to stay home and to practice social distancing as much as possible. If you are currently on hepatitis B medication, it is important to make sure that you have enough medication for an extended period of time. Call your doctor and ask them to write a 90-day prescription for your treatment if they have not done so. The American Association on the Study of Liver Diseases (AASLD) reports that many insurance companies are waiving refill limits on prescriptions, so you can request additional medication at any time. As skipping a day of treatment may cause the virus to flare and increase the risk of liver damage, it is essential to speak with your healthcare provider about long-term medication access.
If you had a doctor’s appointment scheduled during this time period, see if your doctor’s office is scheduling telehealth appointments or holding virtual meetings with their clients instead. Some services for those living with hepatitis B, such as ultrasounds or even blood work, may be delayed until further notice unless there is a cause for concern. You may want to consider scheduling a virtual meeting to discuss your situation and address any questions you may have about recent test results or concerning symptoms. Most telehealth services should be accessible directly from your phone if you do not have access to a computer.
It is also important to continue protecting the health of your liver. Consider stocking up on canned vegetables and fruits instead of items that may be unhealthy. Be sure to read the nutrition labels, as some canned goods can have high sodium and sugar contents. If you have the means, you can also purchase fresh fruits and vegetables, and freeze them to use over the upcoming weeks. Physical activity – both indoor and outdoor – is encouraged during this time as well! Practice social distancing for outdoor activities, and get creative for indoor workouts.
Protecting Yourself During the Pandemic:
Many individuals are wondering how those living with hepatitis B can protect themselves from COVID-19. Current recommendations are to practice social distancing and to wash your hands frequently with soap and water. Be sure to scrub your hands for at least 20 seconds! If soap and water are not available, a hand sanitizer that contains 60% or more alcohol will also kill the virus.
Dr. Robert Gish, Medical Director for the Hepatitis B Foundation, says, “If you’re living with chronic hepatitis B or C without cirrhosis, you should be following the standard precautions for the coronavirus infection. The coronavirus does affect liver inflammation and liver enzymes and can also cause liver dysfunction, so individuals living with cirrhosis will be at higher risk for liver disease progression and decompensation.” Dr. Gish also recommends that individuals living with cirrhosis take special precautions, such as increased monitoring of liver enzymes. If you develop COVID-19, Dr. Gish recommends close monitoring of both liver enzymes and liver function. The Centers for Disease Control and Prevention (CDC) also recommends that those with serious chronic conditions self-isolate with or without an official stay-at-home order.
COVID-19 is a respiratory illness caused by a new coronavirus that was discovered in 2019. While most people who become infected experience a mild reaction, COVID-19 can develop into a serious illness in individuals with underlying illnesses and chronic conditions. Precautions should be taken to prevent transmission and keep you, your family, and your community safe.
April is Donate Life Month in the United States. Donate Life Month is primarily known as a time to acknowledge those who have saved the lives of others by donating an organ, but it is also a chance to highlight the incredible journeys of those who have required organ transplants.
Two years ago, Peter V. had a seven-hour emergency liver transplant after a chronic hepatitis B infection led to rapid liver failure. Peter sat down with us and shared an in-depth look into why he needed a liver transplant and how it changed his life.
Why did you need a liver transplant?
I had acute liver failure. About 1 and ½ years before my liver failure, I was taken off the hepatitis B medication (Viread) by my gastroenterologist and to maintain blood work monitoring about every 6 months. From the span of June of 2017 to January of 2018 immediately before my liver failed, my hepatitis B DNA went from 1,000 IU/L to 169 million IU/L and my ALT went from 24 IU/L to 4,419 IU/L. By this time, my liver had completely been destroyed through cirrhosis. Without the hepatitis B medication, the virus can flare up at any time and reaction to it once this happens could be too late as in my case.
2. What did a liver transplant mean to you previously? Did you realize how serious the procedure was?
I never thought about a liver transplant, or any transplant for that matter. I never thought I would need one. Before, life with hepatitis B was normal and routine. Hepatitis B was simply part of my life; I took my medications and had no side effects from them, so the liver transplant was a surprise to me.
I didn’t understand how serious a transplant was. My condition deteriorated rapidly when my liver began to fail. I couldn’t even do basic functions like unlocking my phone. It got to the point where my situation was so severe that I was in and out of consciousness; I didn’t even know that they were taking me into surgery. Upon recovery, when my cognitive function came back, my wife informed me that my situation had been extremely critical.
3. What kind of treatment and follow-up did the transplant involve?
I was bed-ridden and unconscious for over two weeks after the transplant. I needed physical therapy to regain my strength – to sit up or to get out of bed. For two weeks, I had therapy three or four times a day to regain my ability to speak and cognitive thinking.
Blood work is also a big part of follow-up. In the beginning, I had to have my blood taken daily before it lessened to once a week, then once every two weeks, and eventually to once a month. All of the blood tests are to make sure that your body does not reject the new organ. I’m on anti-rejection medications, but there is always the risk that your body can reject it. About a year ago, my ALT number rose to high levels, which raised immediate concern. My post-transplant team took a sample of my liver and found that my body was rejecting the new liver. They increased my anti-rejection medications and my body was able to adapt.
I also developed diabetes after my transplant and had to be placed on insulin, however, I was able to stop taking it by changing my diet and monitoring my blood sugar through my eating habits.
4. How has the liver transplant changed your life? Are you still able to carry out daily activities the same way you did previously?
I don’t drink alcohol at all anymore and I take much better care of my body. Before my transplant, I didn’t take hepatitis B seriously. I was still drinking alcohol and wasn’t eating a healthy diet. The transplant made me realize how serious hepatitis B could be if you don’t take care of your liver.
The anti-rejection pills suppress my immune system, which means I have to be very careful about what I eat and how it is prepared. Eating out at restaurants is a risk because you have to trust that the restaurants are properly cleaning their food and that it is cooked properly. Because of the immunosuppressants, improperly cleaned food can be dangerous. One time I developed a fever and had to be hospitalized because of cross-contamination between foods at a restaurant. You really have to be aware of what you are eating.
The reminders for COVID-19 to wash your hands thoroughly and not touch your face have been my life since the transplant. Eventually, these actions become a habit. I am still able to work and do physical activities like yard work and exercise, but it is not as vigorous as before. I still get fatigued throughout the day, but it doesn’t stop me from living my day-to-day life.
I don’t know how I would do this without support. I don’t know how I would do this by myself. I still do physical therapy to regain my strength and my family helps while I go through this journey. Family support is key. I also have a post-transplant team that will help monitor my health for at least 3 years after my transplant.
Most importantly, my family support has been abundant and going through an experience like this makes me much more appreciative of the love and care from having family support that should not be taken for granted. Now, the time spent together regardless of the activities are much more precious.
5. Is there anything that you wish you could have changed about your experience?
I wish I didn’t have to go through the transplant. I wish I knew more about how serious hepatitis B was. I still drank alcohol and ate the same foods that I ate before my diagnosis. I neglected my liver health. I wasn’t serious about it before the transplant; hepatitis B was invisible to me. It shouldn’t have taken a liver transplant for me to become aware of it.
6. What have you learned since your journey? Do you have any advice for those living with hepatitis B who think that a liver transplant is the best, or only, option for them?
I don’t think that a liver transplant is an “option”. For me, it was life-or-death. Because I was in critical condition, I was able to get it immediately. For others, getting a transplant is a long and difficult journey.
A liver transplant is not going to get rid of chronic hepatitis B. You will still live with it. Hepatitis B is still a part of my life every day. The difference is that I now have an understanding of what it can do to my liver.
Having chronic hepatitis B is not life-ending. It’s not even life-changing as long as you take your medication and take care of your liver. I put my friends and family through a scary experience. If you have chronic hepatitis B, take your medications and keep your liver healthy. Take your diagnosis seriously.
About Liver Transplants for Those Living with Hepatitis B:
A liver transplant is a very serious surgery that removes a diseased or injured liver and replaces it with a healthy one. People living with hepatitis B can need a liver transplant if their liver begins to fail. This typically occurs if the infection is not being monitored properly, or if significant liver damage has been occurring. Regular monitoring by a knowledgeable provider, ahealthy lifestyle, and taking medications, if needed, as prescribed, can help prevent the need for a liver transplant.
Thank you, Peter, for providing a look into your experience!
In January of 2020, the Centers for Medicare and Medicaid Services (CMS) proposed a new rule that could increase the out-of-pocket costs for people who take prescription medication for hepatitis B in the U.S. The proposed rule states that health insurance companies would be able to collect patient coinsurance through pharmaceutical manufacturer financial assistance. However, the insurance companies will be allowed to disregard any coinsurance paid with copay assistance when calculating how much the patient has paid toward their deductible and annual out-of-pocket (OOP) limit.
This proposal – titled 2021 Notice of Benefit and Payment Parameters – reverses a recent ruling that would have required health insurance companies to count the value of manufacturer copay assistance toward an enrollee’s annual deductible and OOP limit in most circumstances1. This rule acknowledged that manufacturer copay assistance helps lessen the financial burden of medications for patients. In the US, prescription drugs can be extremely costly, making manufacturer’s copay assistance programs necessary for many patients. For example, brand name treatments are often expensive in order to help pharmaceutical companies earn back the costs of the research and time spent making the medication. Sometimes, the brand name treatments are the only ones that are available, like Vemlidy, or the only version that a person can take. A reversal of the rule would mean that hepatitis B patients and those living with other chronic illnesses may have to pay a larger amount of out-of-pocket costs for their medications.
To understand the significance of this change, we first need to understand what a copay accumulator is.
What is a Copay Accumulator Program and How Does It Work?
A copay accumulator – or accumulator adjustment program – is a strategy used by insurance companies and Pharmacy BenefitsManagers (PBMs) that stop manufacturer copay assistance coupons from counting towards two things: 1) the deductible and 2) the maximum out-of-pocket spending. What does this mean?
Previously, a person could receive financial assistance from companies that make a drug, and that would count towards their deductible and/or out-of-pocket costs, depending upon the insurance plan. Pharmaceutical companies often provide financial assistance (such as a co-pay card) to help underinsured individuals afford expensive medications. This means that the person paying for the drug would end up saving money, often thousands of dollars.
Why Is This an Issue?
As the AIDS Institute explains it, “ … the trend in health insurance benefit design is to shift more of the cost of health care to patients through high deductibles and coinsurance rates …In order to afford the medicine they need, patients increasingly rely on manufacturer copay assistance.” With copay accumulators, the individuals who need assistance the most will be unable to receive it, and will end up paying more for their treatments.
As shown in the above image, with a copay accumulator program – meaning her manufacturer’s assistance is no longer counted toward her out-of-pocket limit- the consumer ends up paying more, while the insurance company is able to reduce the amount they are paying.
Copay accumulator programs are making life-saving treatments increasingly inaccessible. Research shows that the more out-of-pocket costs a person has to pay, the more likely they are to abandon their medication. Once on a hepatitis B medication, stopping suddenly or only taking it once in a while can cause flares and lead to an even higher risk of liver damage.
In the United States, many of those who are living with hepatitis B come from underserved populations with limited access to healthcare. Oftentimes, cultural differences and language barriers can make it difficult to access and utilize the services they need. Now, copay accumulators are making the navigation process even more complex and placing a higher cost burden on patients.
1The rule required insurance companies to count manufacturer copay assistance toward a patient’s deductible and OOP limit for all brand name drugs for which there is no generic alternative and in cases where the patient gained access to the brand name drug through an insurance plan’s appeals or exceptions process.
For most people, Valentine’s Day is a day full of love, but for those living with hepatitis B, it can be filled with dread and anticipation. Perhaps you haven’t told your significant other that you have been diagnosed with hepatitis B, or maybe you are spending this year alone because you are scared to begin a relationship. This year, instead of focusing on others, take Valentine’s Day to love yourself – and your liver!
Taking Care of Your Liver
Find a Knowledgeable Provider (and be sure to see them regularly!):
Most people who are diagnosed with hepatitis B lead long, healthy lives. The key is proper care and monitoring by a trained healthcare provider. If you do not yet have a healthcare provider who is regularly monitoring your diagnosis, you can search our physician directoryto find one near you. You can also search the World Hepatitis Alliance’s member list to find local resources and organizations who can help you identify a provider in your area.
It is always a good idea to conduct your own research as well! Look into what your provider specializes in, as some may be more knowledgeable about the infection than others. Ideally, it would be best to regularly see a hepatologist – someone who specializes directly in diseases of the liver. However, due to finances and other constraints, this may not be an option for everyone. Seeing any doctor is extremely important, but if you only have access to a provider who is not as experienced in hepatitis B, make sure that they are performing the correct tests to monitor the health of your liver. At each follow-up appointment, your doctor should: check your liver enzymes (ALT, AST), perform a physical exam of the liver, and any other blood tests they might feel is needed to determine the stage of the infection and the health of the liver. Sometimes, the doctor will also perform an ultrasound of the liver to get a better picture of what is going on. You can find some questions that are important to ask your doctor here.
Watch What You Consume:
When people are first diagnosed with hepatitis B, they may feel fine and may not consider making small changes in their daily lives. The truth is that your diet plays a large role in the health of your liver! Everything that enters your body is filtered through your liver. This makes adopting healthy habits essential to keeping the liver in good shape. A standard rule of liver disease is to avoid alcohol – even small amounts – and maintain a steady diet of fruits and vegetables. Foods that are high in fat, salt, and sugar content can lead to weight gain, which puts a strain on your liver. Beware of what you are drinking as well! Drinks like juices and sodas might seem like healthier options, but often contain high amounts of sugar. Diet sodas may lack sugar but have other additives which may have other health implications. Opt for flavored water or seltzer to satisfy a sweet craving instead! If healthier beverage options are not readily available, see if any coffee is available. Studies have shown that drinking coffee can lower one’s riskof developing liver damage and liver cancer – just be sure to watch how much sugar and creamer you put in it! Other diseases of the liver, such as fatty liver, can also increase your risk of liver damage and liver cancer, so it is extremely important to be aware of the risks and what you are consuming.
Those living with hepatitis B should also be aware of aflatoxins. Aflatoxins – which can cause liver cancer – are natural toxins that are produced by a mold that grows on crops like corn, peanuts, and tree nuts. Aflatoxins are more common in warm, humid parts of the world, such as African countries and areas with tropical climates. Before eating any grains and nuts, check for any signs of mold. If the food appears to be moldy, do not consume it. The World Health Organization also recommends buying grains and nuts as fresh as possible to minimize the risk of aflatoxin exposure. The fresher the food is, the less time it has been in storage, which is where aflatoxins commonly grow.
Be Mindful of Your Stress Levels:
Living with hepatitis B can be a big stressor, especially for those who may face stigma and discrimination. Research shows that stress can negatively impact liver health. Take some time to find ways that might relieve your stress, such as meditation, listening to music. Being social can also be a stress reliever for some, so try spending more time with your trusted friends and family members. Exercise is also a great stress reliever and it has the benefit of helping you maintain a healthy weight!
If you are celebrating Valentine’s Day with your partner or if you are in a new relationship, remember that hepatitis B is preventable and cannot be transmitted casually! Holding hands, kissing, or sharing utensils or food made by someone who is living with hepatitis B will not spread the infection. Hepatitis B is a vaccine-preventable disease so make sure that they have completed their hep B vaccine series. If they are not protected from hepatitis B, be sure to practice safe sex (use a condom) to prevent transmission.
Hepatitis B and Stigma 
diagnosed with hepatitis B, or maybe you are spending this year alone because you are scared to begin a relationship. This year, instead of focusing on others, take Valentine’s Day to love yourself – and your liver! 
produced by a mold that grows on crops like corn, peanuts, and tree nuts. Aflatoxins are more common in warm, humid parts of the world, such as African countries and areas with tropical climates. Before eating any grains and nuts, check for any signs of mold. If the food appears to be moldy, do not consume it. The World Health Organization also