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Category Archives: Living with Hepatitis B

About Hepatitis B, Living with Hepatitis B

Should I Take Milk Thistle?

 

 

 

Silymarin or “milk thistle”, an herb and extract of milk thistle seeds, is a supplement commonly taken by people living with hepatitis across the world, yet its proven benefits remain controversial. It is not a treatment for hepatitis B or D, nor has it been shown to have any effect against fighting these viruses. This herb is believed to have possible benefits on liver health due to its antioxidant and free radical fighting properties, although no studies have found a consistent positive effect on viral load or fibrosis scores.

U.S. National Institutes of Health (NIH) has published a directory of what scientific research has discovered about common herbal supplements. Probably the most popular herbal supplement pitched as a liver remedy is milk thistle, and its extract silymarin. The NIH milk thistle report found, “Results from clinical trials of milk thistle for liver diseases have been conflicting or haven’t been clinically meaningful. Some of the studies have been of poor quality, too.” The overall finding is that scientific research has not found any benefit of taking milk thistle.

Silymarin is often taken by patients or suggested by their health care provider during or after interferon treatment ends, presumably with the hope of a protective or anti-inflammatory effect on the liver. But a 2013 study on hepatitis C patients unsuccessfully treated with interferon (the standard treatment for hepatitis B and D coinfection) found no significant difference in silymarin’s ability to lower ALT scores over placebo (a pill with no active drug ingredients)1. Another 2013 metanalysis reviewed 8 studies which tested silymarin against a placebo and looked for measurable levels of improvement in ALT scores, of which the results were mixed and inconsistent1.

However, studies have found improvements in patients’ self-reported quality of life after taking silymarin 2 – perhaps due to decreased stress or self-perceived control over their health. However, a 2012 study which randomly assigned patients either silymarin or placebo to measure possible declines in ALT or hepatitis B and C virus levels, in addition to self-reported quality of life, found little to no improvement in any of these outcomes3 regardless of whether they took milk thistle or a placebo.

Due to mixed scientific findings and lack of proven effectiveness, people living with hepatitis B and/or D should not rely on silymarin as a treatment for these viruses and should discuss any new prescription recommendations with their doctor. Silymarin will not counterbalance damage done by hepatitis B or D viruses. While some studies have found silymarin to be well tolerated with low side-effects3, individual reactions and side effects can vary. In the U.S., supplements including silymarin are not regulated by the Food and Drug Administration (FDA), making the true contents of supplements unknown. For these reasons, patients should be cautious about supplements.

So, what can you do instead? Take your antiviral medication as directed by a doctor, eat a liver friendly diet, and exercise. Check out our blog on healthy habits you can incorporate into your lifestyle.

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Disclaimer: Herbal products are not U.S. FDA approved, and the Hepatitis B Foundation cannot endorse the usage of such products that lack regulation and scientific evidence to deem them both effective and safe.

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  1. Fried, M. W., Navarro, V. J., Afdhal, N., Belle, S. H., Wahed, A. S., Hawke, R. L., Doo, E., Meyers, C. M., Reddy, K. R., Silymarin in NASH and C Hepatitis (SyNCH) Study Group (2012). Effect of silymarin (milk thistle) on liver disease in patients with chronic hepatitis C unsuccessfully treated with interferon therapy: a randomized controlled trial. JAMA, 308(3), 274-82.
  2. Polyak, S. J., Ferenci, P., & Pawlotsky, J. M. (2013). Hepatoprotective and antiviral functions of silymarin components in hepatitis C virus infection. Hepatology (Baltimore, Md.), 57(3), 1262-71.
  3. Rambaldi, Andrea & P Jacobs, Bradly & Gluud, Christian. (2007). Milk thistle for alcoholic and/or hepatitis B or C virus liver diseases. Cochrane database of systematic reviews (Online).

HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Hepatitis B Treatment, Living with Hepatitis B, Uncategorized

Recap of NAIRHHA Day 2020 Celebration

 

 

 

 

By Beatrice Zovich

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!

Hepatitis B Advocacy, Living with Hepatitis B

#Tri4ACure: From Hepatitis B Diagnosis to Advocating for a Cure

 

 

 

 

 

 

 

 

 

Meet Edwin Tan – a 29-year-old mechanical design engineer from Minneapolis, Minnesota! In 2014, Edwin was diagnosed with hepatitis B. Like many others living with hepatitis B, his diagnosis was a shock. Before his diagnosis, all he knew was that he was banned from giving blood to the Red Cross, but no one had explained the reason why. A routine blood test provided no explanations either, so his doctor decided to test for hepatitis B. The test revealed that Edwin was living with chronic hepatitis B.

After his diagnosis, Edwin decided to learn all that he could about the infection. Through his research, he found that one of the best ways to keep his liver healthy was through small lifestyle changes. Edwin began to pursue healthier life choices by increasing the amount of exercise he was getting and paying closer attention to his diet. Although he loved craft beer, he knew that drinking could be extremely dangerous to those with liver infections, so he willingly gave up all alcohol. Edwin’s dedication to a more active lifestyle led him to challenge himself by competing in local races and triathlons.

Edwin’s journey led him to realize that there is a lack of awareness about hepatitis B. He noticed that the stigmas facing those living with hepatitis B could take a physical and mental toll on an individual and impact how they viewed themselves. Edwin’s observations inspired him to reach out to the Hepatitis B Foundation to raise money and awareness for hepatitis B research, patient outreach, and education. Since his passion for racing was discovered due to his commitment to health after his diagnosis, it seemed appropriate for him to use his love of sports to fundraise for hepatitis B awareness and research! He hopes that his athletic achievements help others living with hepatitis B to realize that they are more than their infection.

Now, Edwin is training for a series of six races—triathlons, a marathon and an ironman – and we’ll be with him every step of the way! You can make a gift to support Edwin’s fundraising efforts here.

“I want to be a positive example against the stigma associated with Hep B and the shame that some people may feel for having it. Completing an Ironman, which is regarded as one of the most difficult one-day athletic events, serves as a good example that we each can accomplish anything we want as long as we believe in ourselves.”

To follow updates on Edwin’s journey, you can follow the Hepatitis B Foundation or Hep B United on Facebook. Be sure to use the hashtag #Tri4ACure!

Hepatitis B Advocacy, Living with Hepatitis B

Hepatitis B Discrimination in U.S. Medical Schools: What you Should Know

In 2013, an integral ruling by the United States Department of Justice (DOJ) took a major step towards ending one of the many forms of discrimination that hepatitis B patients face. The settlement made it illegal for medical schools to discriminate against students due to their hepatitis B status. Six years later, the words of

“Blind Lady Justice”

Thomas E. Perez, former Assistant Attorney General for the Civil Rights Division, still ring true: “Excluding people with disabilities from higher education based on unfounded fears or incorrect scientific information is unacceptable”. Unfortunately, many medical schools – both nationally and internationally – fail to acknowledge this.

Since the court settlement in 2013, we’ve received an increasing number of patient complaints regarding medical school discrimination. Some students completed all of their classes only to be told that they couldn’t participate in their clinical experience (which is a degree requirement) due to their hepatitis B status. Other students have had their acceptance to a school revoked because they tested positive for the infection. Both situations are considered illegal under the Americans with Disabilities Act (ADA).

What You Should Know:

  • You are protected by the law: Under Titles II and III of the ADA, it is illegal for entities, including schools, to discriminate against students based upon a disability like a chronic illness. In addition, institutions are required to make arrangements, policies, and procedures when needed in order to ensure that those titles are being followed.
  • You are not a threat: It is important to note that discriminatory policies are often outdated and should be unnecessary – in both schools and the healthcare field – as long as the appropriate procedures and precautions are followed.  
  • The Centers for Disease Control and Prevention (CDC) Recommendations are in your favor: In 2012, the CDC worked with us and a few other organizations to update their recommendations for managing healthcare students and workers with hepatitis B. Amongst those changes were no requirement of telling patients of a health-care provider’s or student’s hepatitis B status, using HBV DNA instead of hepatitis B e-antigen status to monitor infectivity; and, for those requiring oversight, a threshold value of HBV DNA considered “safe” (<1,000 IU/ml). They also state that “for most chronically  infected providers and students who conform to current standards for infection control, hepatitis B infection status alone does not require any curtailing of their practices or supervised learning experiences. “

What Discrimination Looks Like:

Sometimes, schools’ discriminatory actions are obvious but oftentimes they are not. Despite direction from the DOJ and requirements in the specified in the ADA, some institutions have not created standardized arrangements or policies for people who have hepatitis B. Other schools are not aware that turning away certain students based on a disability is illegal.

Discriminatory policies by schools may include:

  • Asking students to show proof of hepatitis B surface antibodies (HBsAb)
  • Revoking acceptance to the school based upon positive hepatitis B status (HbsAg)
  • Requiring undetectable viral load or e-antigen negativity for completion of clinical rotations

As an example of a discriminatory policy, Lehigh Carbon Community College states that: “The health care agencies for clinical experiences have specific health requirements that must be met by each student. The program requires proof of personal health insurance during enrollment in the nursing program. Admission to the program may be revoked upon review of these results. (1) Positive Hepatitis B Surface Antigen (2) Titer Levels for Hep B antibody level.”

This policy does not comply with the CDC’s current recommendations and seems to be a violation of the protections afforded by the ADA. You can view this policy on page 15 of their student handbook.

A good, non-discriminatory policy should be transparent and specific. One example of this is Rutgers University. The policy is in line with, and clearly references, the CDC’s most recent guidelines and provides a clear path on how to proceed based upon each student’s infections:

“Individuals who are found to be infected with HBV shall be counseled by the Student Health Service director or Occupational Medicine/Employee Health Service director in accordance with current guidelines from the CDC.”

You can view these guidelines under section H, category 40.3.5 of their policy website.

What To Do If You Face Discrimination:

If you believe that a school is discriminating against you based on your hepatitis B status, there are a few important steps you can take. First, try to schedule a meeting with the person who is in charge of the program, such as a director. This will help to quicken the response to your message and help facilitate change. Be sure to bring these formal guideline documents with you to help build your case: the CDC’s updated guidelines and the official DOJ/ADA letter to schools regarding hepatitis B discrimination. You can even highlight the sections that apply to your case. Hopefully, the school will realize their mistake and make the necessary changes to their policy!

If the school refuses to acknowledge your lawful protections, you can reach out to us at info@hepb.org and we will assist you. You can also file a formal complaint with the DOJ.

Hepatitis B Advocacy, Living with Hepatitis B, Relationships

Patient Perspective: Living with Chronic Hepatitis B & Fighting it On All Fronts

 

This post is by guest blogger Mariam. Mariam works at a charity cancer hospital and is interested in philosophy. She is currently learning french and enjoys spending time by herself and the mountains. 

When you are first told that you have a chronic disease that is treatable but has no cure, you are suddenly confronted with an enemy on multiple fronts—you have to fight it within your body, inside your mind, your heart and in the outside world. Chronic hepatitis B: nearly 15 million people are living with it in Pakistan. In the world, 292 million people are silently suffering from this , and most are unaware (which is 9 out of 10 people globally). It is a tragedy that 2 out of 3 liver-related deaths are caused by this infection which is preventable and treatable. There are many reasons why this disease is prevalent in a developing country like Pakistan that lacks a proper healthcare system; where there are no pregnancy screenings or an effective mechanism to ensure babies are vaccinated against this. It’s an infection that can be transferred through blood (most commonly from an infected mother to her baby during delivery)  and sexual intercourse and  so it is not difficult to understand how this disease travels from one generation to another, silently. Elimination of viral hepatitis by 2030 is one of the millennium goals of the World Health Organization, but we cannot achieve this without dedicated efforts by all the stakeholders that include health-care professionals, patients, media, and policy-makers. I am primarily interested in sharing the patient’s perspective, in hopes that it will encourage others to fight this epidemic.

A Patient’s Point of View

The fact it’s a chronic illness means you are in for the long haul and you have to be prepared to take care of yourself by regular monitoring/medications (depending on what stage you are at) for the rest of your life. One can argue that’s bad but it’s not a big deal as we have people who suffer from high blood pressure, bad eyesight, or diabetes and they also have to regularly take care of themselves. The problem is that hepatitis B is an infectious disease, a fact that contributes towards stigma surrounding its diagnosis. Suffering from flu makes me feel like a hazard to others. Having an infection that I cannot get rid-off certainly makes me feel bad and, in a way, dirty. I have to be cautious and aware that my blood is hazardous for others and I have to be constantly aware of all the possibilities I can be harmful and ways to prevent it. It’s a progressive disease which can be treated at a certain point, so when you go to follow-up appointments, you feel like a ticking bomb is inside you and you need to be able to identify the period when the bomb goes off so you can treat the damage. Because current hepatitis B medications are most effective when there are signs of liver damage, the treatment is often only given during this phase. The inherent uncertainty makes you hate hepatitis B.

Fighting Discrimination and Stigma

Living in a conservative society, if you are one of the few fortunate ones aware of your diagnosis, how do you deal with it? I kept it to myself because I did not want people to define me through my illness. I did not tell my parents or friends because I did not want them to see me as ill or worse, to pity me. I needed time to process it without having to deal with other’s opinions and judgments. Three years ago, I was diagnosed with hepatitis B during regular pre-employment screening. I did not even know anything about this disease. I had a biopsy to determine the stage of the disease. Then I went to a few follow-ups. Unfortunately, after a while, I stopped because I did not want to think about this illness. I wanted to forget about it so I tucked it away, in the farthest corner of my mind. I did not know many people with whom I felt safe talking about this. Until one day, I was at a fundraising event for a charity cancer hospital where I got the chance to sit with a doctor. He was a stranger and a doctor, so in a way I felt safe telling him why I’m so interested in trying to understand where my country stands in the fight against hepatitis B—I told him I was diagnosed with it. At one point he asked me if I’m on treatment,  and I honestly told him I am supposed to be on follow-up. He said, “What do you mean, supposed to be?” That slight hint of disappointment made me feel I failed in taking care of myself. It’s easier to sound irrational inside your head but when you share it out loud, it does not feel nice. He told me that first, I need to sort out myself before trying to make a difference in the world of hepatitis B. I am grateful for the brief discussion with him which gave me the courage to think about re-scheduling my long overdue follow-up appointment. It gave me the clarity that I wanted to share my story with others in hopes that those who are fighting hepatitis know they are not alone. Sharing my story also helps me feel that I am not alone either.

I feel it is very important to fight the stigma surrounding hepatitis. Only then we will be able to talk about it and bust the myths. Only then we will be able to discuss ways to fight it on the ground. It is common in a conservative society to put a label on you as defective and exclude you from everything. For instance, marriage is still, by large, the union in this culture after which people have sexual intercourse and have kids; both occasions that can be possible causes of transmission of this virus. If, before marriage, a person is aware of their diagnosis, they can ensure that their partner is vaccinated and safe. However, in this society, there is also a prevalent culture of arranged marriage which makes this whole discussion almost impossible because so-called “perfection” is demanded. I wonder if submitting your hepatitis status with a marriage certificate was compulsory, would it help in data collection and early detection of this disease or would it encourage stereotyping. What if it was possible to vaccinate every child who starts school to be vaccinated against hepatitis B? After all, mandatory vaccinations are common in other countries. But what about children who can’t afford to go to a school? Can we link hepatitis B vaccination confirmation mandatory with every birth certification? This works in many other countries that vaccinate every baby born – we need to able to fight hepatitis B with a strong response such as this.

I also have an obsession with trying to understand this virus that is sharing my body. So my brain imagined a story to help understand how the chronic hepatitis B works. There are the good guys (liver cells) and bad guys (virus) who grew up together quite happily. Until one day, the good guys realized that these other guys are not from amongst us, let’s kill them. There is a battle and then there is collateral damage. What I want to understand is, if the bad guys aren’t harming the good guys, then why does the body start fighting them? And what is the purpose of their existence if they are not bad guys by default? Perhaps one day someone will help answer my questions. Until then, I’ll try to focus on the inevitable fight.

 

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, Living with Hepatitis B

What’s the Difference: Hepatitis B vs Hepatitis C?

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 one 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.

Both hepatitis B and C are blood-borne pathogens, which means that their primary mode of transmission is through direct blood-to-blood contact with an infected person. Also, both hepatitis B and C can cause chronic, lifelong infections that can lead to serious liver disease. Hepatitis B is most commonly spread from mother-to-child during birth while hepatitis C is more commonly spread through the use of unclean needles used to inject drugs.

 

Hepatitis B vs. Hepatitis C

Despite having an effective vaccine, hepatitis B is the world’s most common liver infection; over 292 million people around the world are estimated to be living with chronic hepatitis B. While hepatitis C tends to get more attention and research funding, hepatitis B is considerably more common and causes more liver-related cancer and death worldwide than hepatitis C. Combined, chronic hepatitis B and C account for approximately 80% of the world’s liver cancer cases. However, studies show that those with chronic hepatitis B are more likely to die from liver-related complications than those who are infected with hepatitis C. With hepatitis C, most people develop cirrhosis, or scarring of the liver, before liver cancer. In certain cases of hepatitis B, liver cancer can develop without any signs of cirrhosis, which makes it extremely difficult to predict the virus’ impacts on the body, and makes screening for liver cancer more complicated.

The hepatitis B virus is also approximately 5-10 times more infectious than hepatitis C, and far more stable. It can survive – and remain highly contagious – on surfaces outside of the body for at least seven days if it is not properly cleaned with a disinfectant or a simple bleach solution. A new study suggests that the hepatitis B virus has the ability to survive in extreme temperatures, whereas the hepatitis C virus has been known to survive outside of the body for a short period of time on room-temperature surfaces. However, more research will need to be done on the topic.

Another major difference between the two forms of hepatitis is how the virus attacks a cell. The hepatitis C virus operates like other viruses; it enters a healthy cell and produces copies of itself that

Hepatitis C Virus
Courtesy of Google Images

go on to infect other healthy cells. The hepatitis B virus reproduces in a similar fashion, but with one large difference – covalently closed circular DNA. Covalently closed circular DNA (cccDNA) is a structure that is unique to only a few viruses. Unlike a typical virus, hepatitis B’s cccDNA permanently integrates itself into a healthy cell’s DNA – a component of the cell that allows it to function properly and produce more healthy cells. The cccDNA resides within an essential area of the cell called the nucleus and can remain there even if an infected person’s hepatitis B surface antigen (HBsAg) levels are undetectable. Its presence means that a person with chronic hepatitis B may have a risk of reactivation even if the HBsAg levels have been undetectable for a long period of time. The complex nature and integration process of cccDNA contributes to the difficulties of finding a cure for hepatitis B. The cccDNA’s location inside of the nucleus is especially troublesome because it makes it difficult to isolate and destroy the cccDNA without harming the rest of the cell.

Hepatitis C, on the other hand, has a cure! Approved by the FDA in 2013, the cure is in the form of an antiviral pill that is taken once a day over the course of 8-12 weeks. For hepatitis C, a cure is defined as a sustained virologic response (SVR), which means that the virus is not detected in a person’s blood 3 months after treatment has been completed. In the United States, an affordable, generic version of the hepatitis C cure is set to be released by Gilead Sciences, Inc. in January 2019.

People living with chronic hepatitis B are susceptible to hepatitis Delta. Only people with hepatitis B can contract hepatitis D as well. Hepatitis Delta is considered to be the most severe form of hepatitis because of its potential to quickly lead to more serious liver disease than hepatitis B alone. Of the 292 million people living with chronic hepatitis B, approximately 15-20 million are also living with hepatitis D. Unlike HIV and hepatitis C coinfections, there are currently no FDA approved treatments for hepatitis Delta. However, there are ongoing clinical trials that are researching potential treatments!

Hepatitis B/C Coinfection

It is possible to have both hepatitis B and C at the same time. The hepatitis C virus may appear more dominant and reduce hepatitis B to low or undetectable levels in the bloodstream. Prior to curative treatment for hepatitis C, it is important for people to get tested for hepatitis B using the three-part blood test (HBsAg, anti-HBc total and anti-HBs). People currently infected with hepatitis B (HBsAg positive) or those who have recovered from past infection (HBsAg negative and anti-HBc positive) should be carefully managed according to the American Association for the Study of Liver Diseases (AASLD) treatment guidelines in order to avoid dangerous elevation of liver enzymes resulting in liver damage.

How to Protect Yourself   

The hepatitis B vaccine is the best way to protect yourself and your family against hepatitis B. Although there is no vaccine for hepatitis C, you can protect yourself from both liver infections by following simple precautions! Simple steps such as not sharing personal items such as razors or toothbrushes, thoroughly washing your hands, and disinfecting surfaces that have been in contact with blood, can keep your liver healthy!

 

Living with Hepatitis B

New Year’s Resolutions: Taking Control of Your Hepatitis B Infection

If you are living with chronic hepatitis B, you may feel as though you are not in control of your health, but that’s not true! Small changes to your daily life can go a long way towards improving your liver health and may even prevent liver damage from occurring. Here are five New Year’s resolutions to help you start 2019 off right!

  • Kick Your Old Habits to the Curb: Still smoking? Time to leave that behind! Old habits can be hard to break, but staying healthy is important. Did you know that insurance plans in the United States must cover smoking cessation programs through preventive care under the Affordable Care Act? This means that copayments and coinsurance can’t be applied to these programs. Taking the first step is better for your liver and your wallet!
  • Cook More: Cooking can be a lot of work, but it can also be fun! Regularly eating fast-food and highly processed meals are bad for your liver and can leave you feeling lethargic, so try switching things up. Consider signing up for a cooking class with your friends or family to learn some new tricks in the kitchen. You don’t have to make every meal from scratch; start by making one or two fresh meals a week and increase them as you feel more confident. Don’t know where to start? Try one of these recipes – desserts included!  There is no standard diet for chronic hepatitis B patients, but the American Cancer Society’s low fat, low cholesterol, and high fiber meal ideas are a good, general diet to follow.
  • Write it Down: It can be difficult to remember all of the things
    Courtesy of Unsplash

    that you have to do and important tasks – like scheduling your doctor appointments – can get lost in the shuffle. Make 2019 the year that you start to write things down. Physically writing items down increases your chances of remembering them, so skip the Notes application on your phone and grab a piece of paper!

  • Make Some Time For Yourself: Stress is bad for every part of your body – including the liver – so it is important to make some time for yourself. Set a few hours aside each week to do an activity that you enjoy. If you have the resources, you may want to consider planning a vacation or taking a small weekend trip. Even if you can’t get away, set a goal to spend more time outdoors. Green spaces, such as an urban park or a forest, have been known to lower stress levels and can help manage weight, which is an important part of maintaining liver health.
  • Get Active: Exercising more might be one of the most common New Year’s resolutions, but it is also one of the most important ones! If you’re tired of going to the gym or bored with your old routine, try your hand at an exercise you hadn’t considered before. Yoga, pilates, running, and kickboxing are just a few
    Courtesy of Emma Simmons on Unsplash https://unsplash.com/photos/mNGaaLeWEp0 

    examples of fun workouts that you can add to your exercise catalog and can be done outside of a typical gym setting. If you’re looking for affordable exercise options, be sure to check out some of the free exercise videos you can find on YouTube. You can also try hiking at your local park or joining a local community center!

New Year’s resolutions can be difficult to keep, especially if you are trying to do them all at once. The important part is to begin! If you are having trouble meeting your goals, pick one to start with and add another goal once it becomes a part of your routine.

Hepatitis B Prevention, Relationships

My partner has been diagnosed with hepatitis B. Can transmission be prevented by vaccination?

Courtesy of Google Images

A hepatitis B diagnosis can be scary and confusing for both you and your loved ones, especially if you are unfamiliar with the virus. Hepatitis B is known to be sexually transmitted, and you may wonder how you can continue your relationship with someone who has been infected. The good news is that hepatitis B is vaccine preventable. This means that after you complete the vaccine series, you cannot contract hepatitis B through any modes of transmission; you are protected for life!

However, it is important to remember that the vaccine will only work if a person has not been previously infected. Therefore, it is necessary to take certain steps after your partner’s diagnosis to protect yourself from becoming infected.

The first step is to visit the doctor and get tested, even if you think that you do not have it. Since hepatitis B often has no symptoms for decades, testing is the only way to know your status. The doctor should perform the Hepatitis B Panel test – a simple blood draw that shows hepatitis B surface antigen (HBsAg), hepatitis B surface antibody (HBsAb or anti-HBs), and hepatitis B core antibody total (HBcAb or anti-HBc). Looking at these three blood test results together will show if you have a current infection, have recovered from a past infection, or if you need to be protected through vaccination. Once you receive your results, this chart can help you understand what they mean.

Preventing Transmission through Vaccines:

If you test negative for HBsAg, HBsAb, and HBcAb, you are not protected from hepatitis B and are considered to have a high risk of contracting the virus from your partner or other means. To prevent transmission, you will need to begin your vaccination series as soon as possible.

The hepatitis B vaccine is a 3-shot series taken over the span of 6 months. The first shot can be given at any time. The second dose should be given at least one month after the first shot, and the third and final dose should be separated from dose 2 by at least two months and dose 1 by at least 4 months.  While there is a minimum amount of time required between doses, there is no maximum amount of time. If you miss your second or third shot, you do not have to start the series over again; you can pick up where you left off! If your partner is pregnant and was diagnosed with hepatitis B, extra precautions need to be taken to prevent transmission to the child. Two shots will need to be given to the child in the delivery room: the first dose of the hepatitis B vaccine and Hepatitis B Immune Globulin (HBIG), if recommended and available in your country.  You can learn more about pregnancy and hepatitis B here.

After completing the series, a quick blood test called the “antibody titer” (anti-HBs titer) test can confirm that you have responded to the vaccine. This test, which should be given at least one month after you receive the third dose, will be greater than 10 mIU/mL if you are protected from hepatitis B. Like the vaccine, your doctor can administer the titer test.

Hepatitis B is spread through direct contact with blood. HBV  is also a sexually transmitted disease, so it is important to practice safe sex by using condoms throughout the duration of the vaccine series until the antibody titer test confirms that you are protected. While you wait for your body to create its defense, there are other steps that you can take to avoid transmission such as not sharing toothbrushes or sharp objects like razors.

The hepatitis B vaccine is the only way to fully protect yourself from the virus. Preventive measures such as using condoms can help prevent hepatitis B transmission, but without vaccination, there can still be some risk.

If you do not have a doctor or are worried about the cost of testing or vaccination, you can still get tested and vaccinated! In the United States, Federally Qualified Health Centers provide the hepatitis B vaccine at low- or no cost to individuals without insurance or with limited plans. You can search for a health center near you here. Internationally, you can search our Physicians Directory and the World Hepatitis Alliance member map to identify member organizations in your country that may have advice on doctors in your area. In addition, keep a lookout out for local health fairs and screenings; they may provide free vaccinations or testing for hepatitis B!

Hepatitis Delta (HDV), Living with Hepatitis B

Ask An Expert: Managing Hepatitis Delta During Pregnancy

 

  What is the standard treatment for hepatitis delta and how long is it taken?

 

Although there are no standard guidelines for the treatment of hepatitis delta, pegylated interferon has been shown to be effective for some patients. It is usually administered via weekly injections for 1 year or more and is able to cure roughly 15-40% depending on the length of time that treatment is administered. Although many patients see declines in their hepatitis delta virus levels, most do not maintain long-term control following the conclusion of treatment.

Can pregnant hepatitis delta patients be treated with interferon?

 

Interferon has not been proven to be safe for administration during pregnancy and should not be administered. It may be harmful to the baby.

 

What is the best way to manage a hepatitis delta infection during pregnancy, if interferon cannot be used?

 

A liver specialist may continue to manage the hepatitis B infection during pregnancy through antiviral treatment. The American Association for the Study of Liver Diseases (AASLD) recommends antiviral treatment during the third trimester of pregnancy for women with high hepatitis B viral loads.

How can hepatitis B and delta transmission be prevented to the baby?

 

Because a hepatitis B infection is required for someone to become infected with hepatitis delta, transmission from mother to child can be prevented with the hepatitis B vaccine. Centers for Disease Control and Prevention (CDC) guidelines recommend the first dose within 12 hours of birth, along with and a dose of HBIG (hepatitis B immunoglobulin), followed by the additional 2 vaccine shots; one at 1 month and the final one at 6 months old. The vaccine, along with HBIG and hepatitis B antiviral treatment (if necessary) greatly reduce the risk of transmission to the baby. In resource-limited countries, the World Health Organization (WHO) recommends the first dose of the hepatitis B vaccine within 24 hours of birth, followed by the additional shots on the recommended schedule. Once the vaccination series is completed, the baby should be protected for life against hepatitis B and delta.

If hepatitis delta cannot be treated during pregnancy, do most women have progression of their liver disease during pregnancy?

 

 While some women may see progression of their liver disease, due to the relative short length of pregnancy, most women do not show clinical signs of advancing liver disease.

 

What treatment should follow delivery? 

 

 

Following delivery, the mother may resume interferon treatment as long as she is not breastfeeding. Interferon treatment while breastfeeding could be harmful to the baby. As for all patients, keeping up-to-date on the latest hepatitis delta clinical trials could provide access to new, experimental treatments that may be more effective. For a global list of clinical trials for hepatitis delta, visit the clinicaltrials.gov web page.

It is very important for all pregnant women who are hepatitis B and delta positive to be managed by a liver specialist who is familiar with managing coinfected patients. For assistance in locating a specialist near you, please visit our Physician Directory page. For additional questions, please visit www.hepdconnect.org or email connect@hepdconnect.org.

Baruch S. Blumberg Institute