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Category Archives: HBV

About Hepatitis B, HBV, Hepatitis B Treatment

Accessing Hepatitis B Treatment

Globally, almost 300 million people are living with hepatitis B. Of these 300 million people, the highest burden is in the WHO Western Pacific region and WHO African region with 116 million people and 81 million people living with hepatitis B. 60 million people are infected in the WHO Eastern Mediterranean Region, 18 million in the WHO South-East Asia Region, 14 million in the WHO European Region and 5 million in the WHO Region of the Americas.1

Of these estimated 300 million people living with hepatitis B, only 10% were diagnosed, and of those who were diagnosed, only 22% of individuals eligible for treatment received antiviral therapies.2 Moreover, only 2% of Africans living with chronic hepatitis B infection receive a diagnosis and of those individuals, 0.1% receive treatment.3

So why aren’t people living with hepatitis B on treatment? Cost can be a barrier.

The Hepatitis B Foundation compiled a list of hepatitis B medications and their costs for a 30-day supply in the U.S.

In the U.S., if someone does not have insurance or know how to access Medicaid or Medicare, they might not be able to afford medication. If they were to pay out of pocket, medication would total $11,484 on the low end of costs.4 One study reported that low household income and publicly funded health insurance were negatively associated with willingness to accept hepatitis B treatment.5

The high cost of hepatitis B management was found to be a barrier in a research study in Ghana. This study found that a typical cost of hepatitis B medication (Tenofovir), was Ghc 3600, or $670 USD annually.6 The average income is about Ghc 9,600 or $1,778 – this means the cost of hepatitis B medication would be about 38% of an average Ghanaian income.6

Another study in Burkina Faso found that cost was a barrier to access to treatment. For someone living with hepatitis B, the total cost for a full diagnosis is estimated to be $209 USD, when in 2020,5 33.7% of the population lived on less than $1.90 a day and the gross national income per capita in 2014 was $700.7 For the treatment itself, the study found that it cost $54 a year for tenofovir and $23 a year for lamivudine. One individual reported that they had to stop treatment because of the cost.6

What can be done to help with cost for hepatitis B treatment?

In the U.S., there are patient assistance programs that can help alleviate costs for some people. These special prices are offered by online pharmacies, co-pay assistance cards, or pharmaceutical companies. DiRx, a new online pharmacy,  has added two front-line medications for chronic hepatitis B infection – generic Viread® (Tenofovir) and generic Baraclude® (Entecavir) – and will be offering the medications at greatly discounted prices. Specifically, 30-count supplies of Entecavir will be $33, and Tenofovir $21, compared to the average retail price of $1,188. To access Tenofovir or Entecavir at discounted prices, patients should visit DiRxHealth.com and use promo code HBFSAVE. Any hepatitis B patient with a valid U.S. prescription will be able to order and benefit from free U.S. shipping, with no pre-qualifications and health insurance required. RxOutreach is another online pharmacy that provides reduced cost tenofovir and entecavir, and recently had a special offer for free medication for up to 12-months. For people in the U.S. taking Vemlidy, Gilead offers a patient assistance program for those who meet certain criteria. Patient Advocate Foundation and Prescription Hope offer co-pay assistance programs for eligible individuals with insurance who cannot afford their insurance co-pays.

Check out Medication Assistance Programs (U.S.)!

We must continue to bring awareness to hepatitis B. Through advocacy and continued discussion, we can improve political and government will which is most important for access to education, prevention, testing, and treatment of hepatitis B. Currently, hepatitis B is not included in The Global Fund To Fight HIV, Tuberculosis, and Malaria which offers countries like Burkina Faso and Ghana free treatment for these three diseases. We can advocate for hepatitis B to be included in this program or a viral hepatitis program like this which would help eliminate hepatitis B. Moreover, countries can use existing HIV infrastructure and incorporate hepatitis B into that space. Through cross organizational collaboration, advocacy, increasing education, and improving advocacy this can be accomplished.

The Hepatitis B Foundation is dedicated to accomplishing these efforts. We published Health Insurance Costs Impacting Shoppers Living with Hepatitis B – a comprehensive report that details our findings from analyzing 2019 and 2020 silver-level health insurance plans for potential discriminatory tiering of hepatitis B treatments. The report contains a list of things to consider when choosing health insurance plans, trends that may drive up the cost of treatment, and an overview of health insurance companies that displayed discriminatory practices. You can use the information on our site to help advocate for yourself, report your experience with discrimination on the Hepatitis B Foundation’s Discrimination Registry, or contact the Hepatitis B Foundation at discrimination@hepb.org.

 

References

  1. https://www.who.int/news-room/fact-sheets/detail/hepatitis-b
  2. Web Annex 1. Key data at a glance. In: Global progress report on HIV, viral hepatitis and sexually transmitted infections, 2021. Accountability for the global health sector strategies 2016–2021: actions for impact. Geneva: World Health Organization; 2021. Licence: CC BY-NC-SA 3.0 IGO.
  3. Polaris Observatory Collaborators (2018). Global prevalence, treatment, and prevention of hepatitis B virus infection in 2016: a modelling study. The lancet. Gastroenterology & hepatology, 3(6), 383–403. https://doi.org/10.1016/S2468-1253(18)30056-6
  4. https://www.nature.com/articles/d41586-022-00819-8
  5. Adjei CA, Stutterheim SE, Naab F, Ruiter RAC (2019) Barriers to chronic Hepatitis B treatment and care in Ghana: A qualitative study with people with Hepatitis B and healthcare providers. PLoS ONE 14(12): e0225830. https://doi.org/10.1371/journal.pone.0225830
  6. Mukhtar, N. A., Evon, D. M., Yim, C., Lok, A. S., Lisha, N., Lisker-Melman, M., Hassan, M., Janssen, H., & Khalili, M. (2021). Patient Knowledge, Beliefs and Barriers to Hepatitis B Care: Results of a Multicenter, Multiethnic Patient Survey. Digestive diseases and sciences, 66(2), 434–441. https://doi.org/10.1007/s10620-020-06224-3
  7. Giles-Vernick, T., Hejoaka, F., Sanou, A., Shimakawa, Y., Bamba, I., & Traoré, A. (2016). Barriers to Linkage to Care for Hepatitis B Virus Infection: A Qualitative Analysis in Burkina Faso, West Africa. The American journal of tropical medicine and hygiene, 95(6), 1368–1375. https://doi.org/10.4269/ajtmh.16-0398
  8. https://data.worldbank.org/country/burkina-faso

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

CHIPO Partner Highlight: Great Lakes Peace Centre

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Arafat: Thank you very much!

HBV

What Can We Do During National Minority Health Month?

As March wraps up and we look to April, let’s celebrate National Minority Health Month!

This month is all about building awareness around the disproportionate burden of premature death and illness in minority populations and encouraging action through health education, early detection, and control of disease complications. 

Why is There a Disproportionate Burden of Hepatitis B in African and Asian and Pacific Islander Populations?

To address this, we first must know some background information. The hepatitis B virus was discovered in 1965 by Dr. Baruch Blumberg, and the recombinant vaccine was approved in 1986. Almost 300 million individuals across the globe are living with chronic hepatitis B. Hepatitis B is a virus that affects your liver. Left untreated, it does damage to your liver and could lead to fibrosis, cirrhosis, or liver cancer.

Multiple factors influence why hepatitis B is so common in African and Asian Pacific populations. Hepatitis B is an ancient virus, and because it is transmitted through blood contact, it has been spread from generation to generation throughout Asia and Africa. Many countries have effective vaccination programs that have drastically slowed transmission over the past 15 years – but some countries, where up to 10% of the population has hepatitis B, still don’t provide universal vaccination to newborns, children or adults – so hepatitis B transmission remains high. Additionally, lack of awareness regarding hepatitis B transmission, lack of hepatitis B testing and data, stigma and hepatitis B related discrimination also play roles in the continued spread of hepatitis B in endemic regions.

In WHO Africa Region, 81 million people are living with hepatitis B, 116 million in the Western Pacific Region, and 18 million in the South East Asian Region.1 In the US, hepatitis B primarily impacts communities of color, especially 1st and 2nd generation Americans.

So, what does this mean for you in the context of hepatitis B during National Minority Health Month?

What Can You Do National Minority Health Month? 

Those from communities that are highly impacted by hepatitis B, including Asian Americans, Pacific Islanders, and people of African origin, are at higher risk for having hepatitis B. If you do not know your hepatitis B status, go get tested and encourage your family members and close contacts to get tested as well. Testing for hepatitis B is very simple and if your test results show that you need vaccination, there is a safe and effective vaccine.

Did you know that most transmission occurs from mother to child, due to the exchange of blood during the childbirth process? If you are expecting a baby, be sure your doctor tests you for hepatitis B – this way, the doctor can be sure that your baby gets the appropriate shots at delivery to prevent them from getting infected. If you live in the United States, health insurance, including Medicare and Medicaid, should cover the cost of hepatitis B testing for pregnant women. Find out more about the birth dose here.

We know getting tested for hepatitis B can be challenging. Schedules can conflict, the associated cost can be a barrier, and sometimes we do not want to find out our status due to possible stigma and discrimination. The good news is that you can reach out to your local clinic or community center to link to testing and vaccination for a low or at no cost with a culturally sensitive provider that might be able to speak your native language. Finding out our hepatitis B status can be scary. However, it is important to know because there are effective treatments for hepatitis B.

Find a testing and vaccine provider here!

Next, you can help create and build awareness of hepatitis B in your community. Do you and your community use social media like WhatsApp, Facebook, Twitter, and Instagram? You can share hepatitis B information with them here from the Know Hepatitis B Campaign from the Centers for Disease Control and Prevention (CDC) or follow the Hepatitis B Foundation on social media to share our posts with your friends and followers.

What Can Providers Do During National Minority Health Month? 

Providers also have a responsibility during National Minority Health Month. Providers can help educate their patients about hepatitis B, especially those at higher risk, and talk about testing and vaccination. Recently, the CDC’s Advisory Committee on Immunization Practices recommended universal hepatitis B vaccination for all adults ages 19-59. Healthcare practitioners should incorporate this recommendation into their practice to help reduce the number of new cases of hepatitis B in the United States.

Working together, we can commemorate National Minority Health Month and eliminate hepatitis B-related health disparities for the future!

References

  1. https://www.who.int/news-room/fact-sheets/detail/hepatitis-b
  2. https://www.pewresearch.org/fact-tank/2020/08/20/key-findings-about-u-s-immigrants/

About Hepatitis B, HBV, Living with Hepatitis B

Feelings of Sadness and Hepatitis B? – You Are Not Alone!

 

Why Did This Happen to Me? 

Being diagnosed with hepatitis B can be scary and maybe you feel like you can’t tell anyone, but you are not alone. Living with hepatitis B is more common than you think, about 300 million people are living with hepatitis B worldwide! You might be wondering how could this happened to me?

Did you know that hepatitis B is an ancient virus? It has been around for thousands of years, is most common in Africa, Asia, and the Western Pacific. And transmission of the virus is almost always from mother-to-child, due to the blood exchange during labor and delivery. Most people with chronic hepatitis B infection were infected at birth or during early childhood. There are other, less common ways hepatitis B can be transmitted through unsterile medical or dental equipment, unprotected sex, or unsterile needles.

Feeling Sad After Your Hepatitis B Diagnosis?

 Sometimes after our diagnosis, we might feel overwhelmed with emotions. These emotions could be anger, sadness, anxiousness, numbness, or maybe a combination of everything. It never hurts to ask someone for some help. Consider going to a therapist. Talking to a therapist, especially if you’ve always kept your hepatitis B a secret, can help you get a better handle on your hepatitis B diagnosis. It can be freeing to talk to another person and have them support you on your emotional and physical health journey. If you don’t have access to a therapist or prefer to be more anonymous, you can join online support groups. Hep B Community is a great resource if you are in need of online global support – they are dedicated to connecting people affected by hepatitis B with each other and with verified experts in the field, who provide trustworthy and accurate advice.

You can also incorporate healthy habits into your lifestyle like taking daily walks, mediation, or incorporating any exercise you enjoy. Eating healthy, with lots of fruits and vegetables can make you feel better inside as well!

Can I Take Anti-Depressants with Medication for Hepatitis B?

 Sometimes, if we have persistent sadness for a long time it can be diagnosed as depression. Luckily, depression can be treated with medication called antidepressants. Antidepressants generally do not harm the liver, unless you have severe, pre-existing liver damage (such as cirrhosis), are older, or are taking several medications at once.

According to research, about 0.5 percent to 3 percent of those taking antidepressants may develop very mild elevation in their liver enzymes (called ALT or SGPT), which indicate mild liver damage. It is a good idea to talk to your doctor about this. If you already have liver damage, or you/your doctor are concerned, your doctor can monitor your ALT/SGPT levels more frequently than usual during your first weeks of antidepressant treatment, especially if your ALT/SGPT level is already elevated.

The antidepressants that may cause the highest risk of moderate liver damage,  include monoamine oxidase (MAO) inhibitors, tricyclic/tetracyclic antidepressants, nefazodone, bupropion (Wellbutrin, also used for ADD and smoking cessation), duloxetine and agomelatine.Drugs with lower risk of causing liver damage include citalopram, escitalopram, paroxetine (Paxil) and fluvoxamine.

Among the most common antidepressants used today is fluoxetine (Prozac).  According to the National Institutes of Health LiverTox report,  in people with no pre-existing liver infections or damage, “Liver test abnormalities have been reported to occur rarely in patients on fluoxetine (less than 1 percent), and elevations (in ALT/SGPT) are usually modest and usually do not require dose modification or discontinuation.”

Feeling sad and depressed is normal reaction to receiving news that you have hepatitis B. However,  hepatitis B does NOT define you and a gentle reminder is that you can live a long and healthy life with hepatitis B.

About Hepatitis B, HBV, Living with Hepatitis B

Zero Discrimination Day

Every year, UNAIDS marks March 1st as Zero Discrimination Day. This year, Zero Discrimination Day highlights “the urgent need to take action to end the inequalities surrounding income, sex, age, health status, occupation, disability, sexual orientation, drug use, gender identity, race, class, ethnicity and religion that continue to persist around the world”.

Although hepatitis B affects about 300 million people worldwide, hepatitis B related discrimination still is pervasive. In fact, the Hepatitis B Foundation has been documenting these inequalities through our Discrimination Registry. Since May of 2021, we have documented over 250 cases of hepatitis B related discrimination from all over the globe. Of these cases, 213 individuals experienced discrimination personally and 151 knew of people who were discriminated against. Within these reports, people have described instances where they have been denied employment or lost employment due to their hepatitis B status or had been denied educational opportunities or immigration to another country. The top 10 countries where people have reported hepatitis B related discrimination are the Philippines, Nigeria, India, Pakistan, United States, Ghana, Uganda, Ethiopia, Bangladesh, and Sierra Leone. The Hepatitis B Foundation is aware that discrimination is happening around the world and encourages people to report any discrimination on the registry here.

Notably, the United States is in the top 10 countries where people have reported hepatitis B discrimination. Most of the reporting within the United States comes from individuals in the military living with hepatitis B. Currently, the military in the United States and many countries unethically prohibits individuals with hepatitis B to serve due to outdated guidelines. Now, since most individuals within the military setting should be vaccinated against hepatitis B and with the accessibility of hepatitis B antiviral therapy which can control the virus, the risk of transmission is extremely low. These guidelines should be updated to reflect national policies in the United States that prohibit discrimination. In the broader setting of the U.S. outside of the military, it is illegal to discriminate against people living with hepatitis B. The Americans with Disabilities Act (ADA) prevents employers, institutions, and other organizations from discriminating against an individual based on their hepatitis B status. The Hepatitis B Foundation hopes to one day end hepatitis B related discrimination not only in the United States, but also globally.

Ending hepatitis B related discrimination globally will require incredible effort from multiple partners like governments, organizations, community advocates, and people living with hepatitis B. The first step is demonstrating that discrimination is a serious issue around the world that impacts one’s life in a variety of ways, both economically and psychologically. The discrimination registry that we launched in 2021 will help us document discrimination around the world and help us determine areas of focus. We want to publish and share what we find from this registry so academic partners, policy leaders, advocates and health professionals can be made aware of the current situation and challenges people living with hepatitis B face. We hope to maintain this registry so we can assist people experiencing hepatitis B related discrimination. And we want to create a global movement to enact change, advocating for ending policy and practice that allows for discrimination, and instituting policies that protect people with hepatitis B worldwide. But we need your help – people living with hepatitis B, and people who have faced discrimination, are the most important partners in this effort! We need you as partners, to maintain the registry and fight hepatitis B related discrimination, and ensure the fight for equality continues. We are currently fundraising to keep the Discrimination Registry going and expand on these plans to help fight discrimination globally.

This fight against discrimination will take some time! Change does not happen overnight. Improving awareness, growing an advocacy movement, engaging leaders and decision makers, and especially changing policy, can take years – but we must continue our work together. The Hepatitis B Foundation has long been dedicated to assisting in discrimination related causes. In fact, the Hepatitis B Foundation played a key role in a landmark settlement by the U.S. Department of Justice that established protection for people with hepatitis B under the Americans with Disabilities Act (ADA). That effort took three years to see policy change once we took up the fight, but it was worth it to have protections in place for people with hepatitis B. Learn more in our Know Your Rights section.

On Zero Discrimination Day, March 1st, and moving forward, please continue to use your voice to speak out against discrimination. If you need assistance please fill out the Discrimination Registry to document your experience and the Hepatitis B Foundation will try its best to assist you and navigate you through it.

About Hepatitis B, HBV

Progress on the Cure: Update From Timothy Block

A primary goal of the Hepatitis B Foundation has always been to find a cure for the disease. When we ask Dr. Timothy Block, The Hepatitis B Foundation’s president and co-founder, about progress towards a cure by the many scientists worldwide working on that challenge, he considers many different angles.

The clinical definition of a cure Dr. Block favors is for someone who has hepatitis B to regain the liver health and low liver cancer risk enjoyed by someone without hepatitis B. That goal is considered too ambitious by most clinicians. A more realistic goal is sustained, drug-free, virological response for people living with hepatitis B. This means that a person for whom treatment has stopped has the same low (undetectable) viral load as when they were actively being treated on drug therapy. This already happens in a small percentage of patients and is associated with an improved clinical outcome: much less likelihood of developing serious liver disease, including liver cancer.

There is a new wave of drugs being evaluated now that Dr. Block believes may provide a sustained virological response, possibly when used in combinations with the current “standard of care”. Promising examples are what’s known as capsid inhibitors, siRNAs, NAPs/STOPs and entry inhibitors.  There are even modifications of the polymerase inhibitors that have potential. As you can see in our Drug Watch page, at least 40 new treatments are now in clinical trial.

The reason it has been so difficult to find a cure for hepatitis B, Dr. Block explained, is that the virus has been around for hundreds of thousands of years and has established a mechanism to coexist with its host in a way that avoids a person’s immune system. It burrows its DNA into the nucleus of cells and is incredibly difficult to attack in ways that don’t harm the patient.

Another reason progress toward a cure has been slow, Dr. Block says, is that people with hepatitis B are simply too polite. Without a grassroots movement, hepatitis B will never get the attention and funding that other similar diseases have received.

“The hepatitis B community of scientists and stakeholders is incredibly innovative and collaborative, but we are small and underfunded,” he says. “We have made great progress in the 30 years since we started the Foundation, but that’s with a fraction of what has been spent on other diseases.”

With development of the effective COVID-19 vaccines, over the past year, we have all seen what can be done when the scientific community and governments rally around a public health crisis. “This shows that, with the right amount of money and focus, we can find a cure faster,” Dr. Block said.

“So, please, don’t be ashamed or scared of your hepatitis B diagnosis,” he added. “Seek treatment, take good care of yourself, and spread the word. Hepatitis B can be eliminated in our lifetime – we just need the support.”

You can hear more from Dr. Block about the cure on our podcast, B Heppy, at https://bheppy.buzzsprout.com/1729790/8998405

About Hepatitis B, HBV

Happy NAIRHHA Day!

Today is NAIRHHA Day! Every September 9th, the Hepatitis B Foundation brings awareness to National African Immigrant and Refugee HIV/AIDS and Hepatitis Awareness Day. Founded by advocates in Massachusetts, Washington D.C., and New York, NAIRHHA Day has been observed annually on September 9th by healthcare professionals, awareness campaigns, and other organizations since 2014. The Multicultural AIDS Coalition (MAC), Hepatitis B Foundation and the Coalition Against Hepatitis for People of African Origin (CHIPO) are working to establish NAIRHHA day as their own federally designated awareness day.

Hepatitis B and HIV in African Immigrant Communities

 People of African origin are disproportionately affected by hepatitis B infection. Worldwide an estimated 292 million people are infected with chronic hepatitis B. Over 60 million people in Africa have hepatitis B which annually accounts for an estimated 68,870 deaths.1

In fact, in some African communities in the United States, between 5%-15% of people have chronic HBV infection. Unfortunately, due to the silent nature of the disease, lack of disease awareness, and limited health care access, most African community members who have hepatitis B DO NOT KNOW that they are infected. This puts them at much greater risk for premature death from cirrhosis or liver cancer.

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

 With approximately 54,000 people with HBV who immigrate to the United States annually it is important to bring awareness to hepatitis B in African Immigrant communities on this day!

Get Involved

Viral hepatitis and HIV heavily impact African immigrant communities in the U.S. Let’s raise awareness and advocate for resources and funding to support elimination efforts & healthier communities.

Action Items:

  1. There are African community organizations all over the U.S., from Boston to Seattle. Connect with one in your area to learn more about & contribute to the health of these vibrant communities. Start by visiting https://www.hepb.org/research-and-programs/chipo/member-organizations/
  2. Data drives policy change & it can be difficult to find data about African immigrant communities because it is often not separated from data about African American communities. Advocate for this data to be separated by contacting your local Department of Health today!
  3. Education & awareness matter! Many elected officials do not know about these issues, but they should! Contact your state & federal reps today to ask what they’re doing to address viral hepatitis & HIV in African immigrant communities. Visit https://www.usa.gov/elected-officials
  4. Change needs resources! Help grow the capacity of African organizations in your area by contributing your time, money, or other resources to eliminating viral hepatitis & HIV in African immigrant communities. Find an org in your state or city & ask how you can plug into their work!
  5. Funding is critical for progress to occur & advocacy is needed to make sure African immigrant communities receive enough money to combat viral hepatitis & HIV. Contact your federal, state, & local elected officials & local department of health to ask what they’re doing to support this. Start with members of @NASTAD found at https://www.nastad.org/membership-directory
  6. Good health & healthcare can’t happen without communication. Learn more about the need for language access programs to include African dialects at https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=1&lvlid=6.
  7. Federal recognition means greater awareness, education, & resources. Continue to support the establishment of NAIRHHA Day as a federally recognized awareness day by contacting @HHS’s sitehiv.gov to advocate for this!
  8. Spread the word! A big part of NAIRHHA Day is raising awareness & you can help with that! Share this toolkit far and wide on social media & also check out some great resources on hepatitis in African immigrant communities at https://www.hepb.org/research-and-programs/chipo/resources/resources-for-educators/

 

 

  1. https://www.who.int/news-room/fact-sheets/detail/hepatitis-b
  2. Spearman, C. W., Afihene, M., Ally, R., Apica, B., Awuku, Y., Cunha, L., Dusheiko, G., Gogela, N., Kassianides, C., Kew, M., Lam, P., Lesi, O., Lohouès-Kouacou, M. J., Mbaye, P. S., Musabeyezu, E., Musau, B., Ojo, O., Rwegasha, J., Scholz, B., Shewaye, A. B., … Gastroenterology and Hepatology Association of sub-Saharan Africa (GHASSA) (2017). Hepatitis B in sub-Saharan Africa: strategies to achieve the 2030 elimination targets. The lancet. Gastroenterology & hepatology, 2(12), 900–909. https://doi.org/10.1016/S2468-1253(17)30295-9

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

CHIPO Is Looking for New Members!

By Beatrice Zovich

 

 

 

 

 

Are you a member of the African diaspora in the United States? Do you work for an organization that serves these communities? We would love for you to join CHIPO – the Coalition Against Hepatitis for People of African Origin! CHIPO is a national community coalition, co-founded and led by the Hepatitis B Foundation. Our members include a variety of individuals and organizations from all over the country, who are interested in and focused on addressing the high rates of hepatitis B among African communities in the US., which are disproportionately affected by hepatitis B and liver cancer. In some parts of the country, rates of chronic hepatitis B infection in African communities are estimated to range between 5 and 15% of people. 

The purpose of CHIPO is to provide a space for an open exchange of ideas, best practices, and  information about how to dismantle some of the many barriers that stand in the way of preventing, diagnosing, and treating chronic hepatitis B infection, and preventing liver cancer, in African immigrant communities. These barriers include a lack of disease awareness, high rates of stigma, limited access to healthcare and services, and the silent nature of the disease, which often does not present any symptoms until significant liver damage has occurred – a process which could take years or even decades. As a result, most African community members who have hepatitis B DO NOT KNOW that they are infected. This puts them at much greater risk for premature death from cirrhosis or liver cancer.

CHIPO, meaning “gift” in the Shona language, aims to disseminate accurate information about hepatitis B transmission, prevention, and treatment among community members, healthcare providers, and organizational leaders, and to improve the national capacity to raise hepatitis B awareness, testing, vaccination, and linkage to care among highly affected African communities. CHIPO also works to ensure that African immigrant communities are represented in HBV discussions and programs regionally and nationally. This is achieved through advocacy and the development of national and local partnerships. We currently have over 35 coalition partners around the U.S., dedicated to addressing viral hepatitis in African communities.

The activities of CHIPO are many and diverse. They include bimonthly virtual meetings, which often center around a presentation by a coalition member about measures or interventions that have been undertaken or research that has been done to achieve one of CHIPO’s objectives – namely improving awareness about and access to hepatitis B information, screening, vaccination, and linkage to follow-up care. Other activities include educational community events and presentations; supporting the design and implementation of initiatives to help accomplish CHIPO’s goals, such as the CDC Know Hepatitis B campaign (discussed below) and a recent grant from Bristol Myers Squibb to raise awareness about liver cancer and understanding about the link between hepatitis B and liver cancer in African immigrant communities; and promoting the work of coalition members locally and nationwide. 

An example of a project for which CHIPO provided great support and guidance was the production of the first nationally available hepatitis B educational resources, specifically for African populations. Created in collaboration with the Centers for Disease Control and Prevention (CDC), these materials are part of a train-the-trainer-based model, and include a suite of materials, including a downloadable presentation on hepatitis B for community health workers, a printable flip chart for direct community education, and supporting fact sheets and resources. The presentation and flip chart have also been translated into Amharic, Arabic, French, and Swahili. 

To read more about CHIPO, including previous blog posts, articles, and meeting minutes, and to access a full list of our members and the work they are doing around the country, visit our website. 

Does this work sound interesting to you? Would you like to work with us to achieve lower rates of hepatitis B and liver cancer in African immigrant communities through increasing awareness, screening, vaccination, and linkage to care? Join us! Anyone is welcome to join CHIPO – contact the coordinator to get involved. We hope to see you on our next call!

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!

HBV, News

Join us for a Hepatitis Awareness Month Twitter Chat!

Join Hepatitis B Foundation, NASTAD and CDC’s Division of Viral Hepatitis for a Twitter HepChat at 2 p.m. (ET) Thursday, June 13th. The chat will highlight Hepatitis Awareness Month outreach events and allow partner organizations to share their successes, challenges and lessons learned from their efforts. Keep us posted with your events throughout the month with the hashtag #Hepaware19 and remember to join the Twitter Chat conversation with the hashtag #HepChat19.

Continue reading "Join us for a Hepatitis Awareness Month Twitter Chat!" →

Baruch S. Blumberg Institute