Hep B Blog

Tag Archives: hepatitis b advocacy

9 in 10 People Worldwide Have Had Hepatitis B – So Why Do We Feel Alone?

 

Hepatitis B is the global pandemic no one talks about, yet nine in ten people worldwide have been infected. In 2015, the World Health Organization estimated that hepatitis B caused 887,000 deaths annually.

Today, 292 million people have chronic hepatitis B1. Despite the availability of an effective vaccine, the number of people living with hepatitis B virus is projected to remain at the current, unacceptably high level for decades and cause 20 million deaths through 2030.

How can this happen? Viral hepatitis infection and death rates far outstrip that of ebola and zika. In fact, you have to combine the death toll from HIV and tuberculosis to find human suffering on par with what viral hepatitis causes around the world each year. How has this pandemic remained so hidden and ignored for so long? There are several factors that have kept hepatitis B off public health’s global radar. It’s a complicated, silent infection, often with few or no symptoms. Those who have it have been silenced by shame and ignorance, and more than two-thirds of those infected with hepatitis B have never been tested and are unaware of their positive status.

And then there’s avoidance by the global healthcare community. The development of a hepatitis B vaccine 40 years ago was thought to signal the death knell of this disease. While new infections have plummeted in North America and Europe, in impoverished countries, the vaccine is often not available or too expensive and infected mothers continue to unknowingly infect their children at birth.

There have been successful hepatitis B immunization campaigns around the world, even in poor, remote areas, but there’s a catch. The Global Vaccine Alliance (Gavi) provides a free hepatitis B pentavalent vaccine which is effective in children starting at 6 weeks of age. To break the mother-to-child infection cycle, a different and more costly hepatitis B vaccine must be administered as-soon-as-possible, within 12 hours of birth. However, this vaccine is often unavailable and out-of-reach financially in rural Africa and Asia, which is why chronic hepatitis B rates remain stubbornly high and are projected to remain unchanged.

To successfully combat hepatitis B, communities need to launch campaigns that combat stigma and teach how to prevent the spread of the disease through education and immunization. They need the resources to test people for hepatitis B and vaccinate those who need it. They also need to teach healthcare providers how to treat patients with liver damage.

Fortunately, we have started to see change. On May 28, 2016, at the United Nations World Health Assembly, 194 countries made a historic commitment to eliminate viral hepatitis by 2030. The Global Health Sector Strategy for Viral Hepatitis pledges to reduce deaths from hepatitis B and C by 65 percent and increase treatment by 80 percent. This action is the greatest global commitment to viral hepatitis ever taken.

On July 28, 2016, a campaign called NOhep, the first global movement to eliminate viral hepatitis, launched on World Hepatitis Day by the World Hepatitis Alliance. This day was chosen to mark the birthday of Baruch S. Blumberg, MD, D.Phil, who won the Nobel Prize in Medicine for the discovery of the hepatitis B virus.

Many of our partners and other organizations around the world are raising awareness to highlight World Hepatitis Day. Here are some of the activities you can support.

WHO – The World Health Organization is celebrating World Hepatitis Day through its theme: Hepatitis-free future with a strong focus on perinatal transmission. Read more about their efforts here. You can register to join their global virtual event, WHO Commemoration of World Hepatitis Day, on July 28th 1pm-3:15pm CEST here.

Hep B United – Yesterday, in anticipation of World Hepatitis Day, Hep B United kicked off a week of action with a call where we heard about the importance of hepatitis B elimination from hepatitis B advocates and representatives Judy Chu and Grace Meng. You can advocate for hepatitis B elimination here.

Hep B United and the Hepatitis B Foundation will have a #ThrowbackWHD twitter storm all day July 28th,  World Hepatitis Day! Partners and hepatitis B advocates are encouraged to share memories from past in-person Hep B United Summits and Advocacy Days.  Share your memories, pics, and videos with the hashtags: #ThrowbackWHD #WorldHepatitisDay and #Hepbunite.

Global Liver Institute – On July 28 at 12:30pm-1pm ET, the Global Liver Institute will host GLI LIVE on the Global Liver Institute’s Facebook page. Dr Chari Cohen will discuss the progress and challenges with eliminating hepatitis B globally, and strategies for commemorating World Hepatitis Day.

DiaSorin hosts Dr. Robert Gish, renowned hepatologist and HBF medical director – July 28th, 12 pm ET. Register now for Laboratory Testing for Viral Hepatitis: What’s new and what has changed?

Hep Free Hawaii – On World Hepatitis Day, July 28th at 12pm HST, Hep Free Hawaii will unveil Hawaii’s first Hepatitis B Elimination Strategy. More information and registration here!

CEVHAP and Burnet Institute – The Coalition to Eradicate Viral Hepatitis in Asian Pacific and the Burnet Institute is hosting a webinar on July 24th at 11am (GMT+5) to discuss access to hepatitis care, the world of hepatitis amidst the COVID-19 pandemic, and literacy on COVID-19 and hepatitis. You can stream it here.

You can be part of this global social justice movement. Take action, speak out, and join the effort to eliminate viral hepatitis by 2030. In anticipation of World Hepatitis Day 2020, NOhep is asking you to urge governments worldwide to uphold their commitment to eliminate hepatitis B. Add your voice to the open letter here.

For more information, visit the NOhep website, the Hepatitis B Foundation website or Hep B United’s website to learn how to lend your voice to this fight and to help address hepatitis and save lives in your community.

 

Reference

  1. Razavi H. (2020). Global Epidemiology of Viral Hepatitis. Gastroenterology clinics of North America, 49(2), 179–189. https://doi.org/10.1016/j.gtc.2020.01.001

Know Your Rights: Legal Protections for Those Living With Hepatitis B

Despite being the world’s most common liver infection, hepatitis B remains stigmatized and those living with it can still face discrimination from various sources. Each year, the Hepatitis B Foundation answers numerous calls from around the world from people who have faced school, workplace, and travel challenges due to their hepatitis B status. These challenges are typically rooted in misinformation, outdated laws or guidelines, stigma, and an overall lack of awareness. However, there are laws and organizations who will work to protect you from such discrimination!

The Hepatitis B Foundation has added a new section to our website that focuses on the rights of people living with hepatitis B. We’ve compiled information on common barriers that those living with hepatitis B may face while applying to schools, jobs, or accessing affordable medicine. Each of the below sections provides information on discriminatory practices, what you can do if you experience discrimination, and how the Hepatitis B Foundation is working to fight discrimination.

In the United States, all forms of hepatitis B related discrimination are illegal under the Americans with Disabilities Act (ADA) and the Affordable Care Act (ACA). Both laws include provisions that protect people living with chronic conditions. Unfortunately, some forms of discrimination are still legal in certain countries, but steps can sometimes be taken to appeal to immigration policies in these areas. Local organizations can also help those living in foreign countries to navigate complex laws or policies regarding those living with hepatitis B. Many of these organizations can be found through the World Hepatitis Alliance’s member list. Join them and add your voice to eliminate hepatitis B discrimination in your country.

Specific protections, resources, and ways to combat legal discrimination can be found in the Know Your Rights section of our website! If you are faced with discrimination due to hepatitis B, it is important to know your rights and to have information to support your case. Use the information on our site to help advocate for yourself, join with others, or contact the Hepatitis B Foundation at info@hepb.org if you need additional assistance.

Hepatitis B Foundation Mini-Grantees 2016

At the Hepatitis B Foundation, we have many research and programs throughout the year. With the Association of Asian Pacific Community Health Organizations (AAPCHO), we co-founded and co-chair Hep B United, a national coalition dedicated to reducing the health disparities associated with hepatitis B by increasing awareness, screening, vaccination, and linkage to care for high-risk communities across the United States. The coalition works to reduce the impact of hepatitis B through prevention and education efforts, addressing perinatal transmission, improving screening and linkage to care, contributing to national surveillance data, and advocating on a national level.

Last year, the Hepatitis B Foundation offered mini-grants for one year to Hep B United coalition partners working on hepatitis B education, screening and linkage to care activities. These grants ranged between $5,000 to $10,000 each. The mini-grants were offered to enhance the capacity of Hep B United coalition partners to conduct HBV education, testing and linkage to care in their local Asian American, Native Hawaiian and Pacific Islander (AA & NHPI) communities to advance the hepatitis B priority areas of the U.S. Department of Health and Human Services’ National Viral Hepatitis Action Plan (VHAP).

Courtesy of CPACS

The 2016-17 project year offered grants to 9 coalition partners, which included Center for Pan Asian Community Services, Inc (CPACS), Hepatitis B Initiative-Minnesota (HBI-MN), Midwest Asian Health Association (MAHA), Hepatitis B Initiative-DC (HBI-DC), Asian Services in Action (ASIA), Asian American Community Services (AACS), Asian Pacific Health Foundation (APHF), and HOPE Clinic. Together, Hep B United coalition partners screened 4,649 people, educated and reached out to 11,884 people, and distributed 13,112 handouts. Some coalition partners were featured in  newspapers, on TV with 496,189 views, and in a social media video. Mini-grantees also participated in activities such as developing key partnerships in local communities, providing linkage to care, and conducting provider training. One coalition partner also screened the “Be About It” documentary.

For 2017-2018 mini-grants, six Hep B United coalition partners (listed below) were recently awarded mini-grants. We are excited to kick off these projects and look forward to their future endeavors and results.

·     Asian American Community Services (Columbus, OH) -AACS’ Live Healthy – Hep Free project will use the H+EAL model to increase HBV education and awareness and encourage testing by targeting high school students and their parents.

·       Asian Pacific Community in Action (Phoenix, AZ) – APCA will be organizing community town hall events in collaboration with the #justB campaign across Maricopa County to collect and share stories that promote increased awareness and proactive approaches to treatment for hepatitis B.

·       Asian Pacific Health Foundation (San Diego, CA) – APHF will be working to increase community knowledge and awareness of hepatitis B, determine gaps in knowledge, develop in-language education materials, and provide hepatitis B screening within high-risk communities throughout San Diego.

·       Asian Services in Action (Cleveland, OH) – ASIA will be using community health outreach workers to increase HBV education and screening, including outreach to AAPI businesses in Akron and Cleveland, OH.

·       Center for Pan Asian Community Services (Atlanta, GA) – CPACS’ project focuses on expanding their Atlanta-based hepatitis B coalition, increasing the number of Georgia AAPI community members who know their HBV status through community and provider education, and improving testing and linkage to care services throughout the city.

·       Philadelphia Department of Public Health (Philadelphia, PA) -The Perinatal Hepatitis B Prevention Program auxiliary project will create new education modules for prenatal and pediatric care and conduct on-site provider education sessions to improve knowledge and care for infected mothers.

The 2017-18 project period expanded its priorities to address perinatal transmission and education through storytelling efforts with the #JustB Storytelling Campaign in addition to screenings and linkage to care.   The overall success of the Hep B United mini-grants has been proven through the significant number of high-risk populations educated, screened and linked into appropriate care for hepatitis B.   We look forward to updating you further in the coming months as we continue to highlight the national work of the Hepatitis B Foundation and Hep B United partners around the U.S.