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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!

Join Hepatitis Partners for a Twitter Chat on May 19th, #HepTestingDay!

Join HepBUnited, NASTAD, National Viral Hepatitis Roundtable (NVHR) and CDC’s Division of Viral Hepatitis for a Twitter Chat on Hepatitis Testing Day, May 19th at 2 P.M. EDT.  The chat will highlight hepatitis events and allow partner organizations to share their successes, challenges and lessons learned from their efforts, particularly during this unique time. Partners will also highlight innovative strategies for outreach during COVID-19. This twitter chat serves to keep us all informed, raise awareness and share messaging. All are encouraged to join the twitter chat conversation with the hashtag #HepChat20, and to keep partners posted throughout the month about events and messaging with the hashtag #HepAware2020.

Continue reading "Join Hepatitis Partners for a Twitter Chat on May 19th, #HepTestingDay!"

Join a Twitter Chat: National Organizations Share Highlights From Hepatitis Awareness Month and Strategies for Successful Events

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Join Hep B United, the National Viral Hepatitis Roundtable, NASTAD and CDC’s Division of Viral Hepatitis for a Twitter #HepChat at 2 p.m. (EST) Thursday, June 8. The chat will highlight Hepatitis Awareness Month outreach events and allow hepatitis B and C partner organizations to share their successes, challenges and lessons learned from their efforts.

Continue reading "Join a Twitter Chat: National Organizations Share Highlights From Hepatitis Awareness Month and Strategies for Successful Events"

The Annual Hepatitis B Check-up: Facing Mortality and a Missing History

Image by worradmu, courtesy of FreeDigitalPhotos.net.
Image by worradmu, courtesy of FreeDigitalPhotos.net.

For more than 20 years, I have accompanied my daughter to her annual hepatitis B check-up with her liver specialist. She is 22 and does not need me to come, but I always go out of habit and love.

After the appointment, we sit eating lunch and I talk about how lucky she is that her liver has been healthy and her viral load undetectable for many years. Recently, she started testing negative for the hepatitis B surface antigen (HBsAg). However, she has never developed hepatitis B surface antibodies. Her immune system has cleaned house, but has lacked the power to produce enough surface antibodies to show up on lab tests and declare her free of infection.

For the second year in a row, her doctor gave her a hepatitis B vaccine shot, an experiment to see if the injection of HBsAg would spur her immune system to generate enough surface antibodies to register in a lab test. Continue reading "The Annual Hepatitis B Check-up: Facing Mortality and a Missing History"

Growing Older with Hepatitis B: Prevention and Precautions Still Matter

Image courtesy of Ambro at FreeDigitalPhotos.net
Image courtesy of Ambro at FreeDigitalPhotos.net

Most people living with chronic hepatitis B today are over age 50, and like their younger counterparts, they need to prevent spreading hepatitis B to their sexual partners, housemates, and neighbors in assisted living facilities.

You’re never too old for safe sex: You may not have to worry about pregnancy any more, but you still need to protect yourself and your partner against sexually transmitted diseases such as hepatitis B. Using a condom (and keeping a barrier between you and potentially infectious body fluids) is essential because many seniors have not been immunized against hepatitis B.

The widespread marketing of erectile dysfunction drugs allows for sex by older men, and thinning and dryness of vaginal tissue in older women may raise their risk of infection during intercourse. Continue reading "Growing Older with Hepatitis B: Prevention and Precautions Still Matter"

Preparing for College, Dating and Disclosing Hepatitis B

Image courtesy of jesadaphorn at FreeDigitalPhotos.net
Image courtesy of jesadaphorn at FreeDigitalPhotos.net

When my daughter, who has chronic hepatitis B, packed for her freshman year of college, I peppered her with warnings about the need for standard precautions and condoms. I suggested wording for a future conversation where she would disclose her infection and negotiate safe sex with a potential partner.

I hoped these verbal dress rehearsals would empower and protect her, especially if that potential boyfriend turned her down. I wanted her to know that any rejection would not be about her or her hepatitis B, it would be about his fears. Continue reading "Preparing for College, Dating and Disclosing Hepatitis B"

Join Hep B United and Watch the Hep B Summit Online!

hepb-united-btnThe Hep B United Summit in Washington D.C., starting Sunday afternoon and running through Monday, July 26 and 27, can be viewed LIVE and in real time on Periscope. Plus, you can follow the conversation on Twitter with #HepBSummit! Continue reading "Join Hep B United and Watch the Hep B Summit Online!"

Webinar on Treatment Options for Liver Cancer: What You Need to Know

 

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Please join the Hepatitis B Foundation’s Liver Cancer Connect program and world-renowned liver disease specialist, Dr. Robert Gish for a webinar on Monday, April 27th 12 noon EDT to learn about liver cancer treatment. How does the stage of the cancer affect treatment? Why are screening and surveillance so important? What are the available treatments and what are the therapies in development? Continue reading "Webinar on Treatment Options for Liver Cancer: What You Need to Know"

Viral Hepatitis Action Alert!

red-phoneRepresentatives Mike Honda, Hank Johnson, and Judy Chu are asking all House Representatives to sign an important letter supporting increased funding for viral hepatitis programs in the Fiscal Year 2015 appropriations bill (see text of letter below)

Please take a few minutes before March 25th to call your House Representative’s office in Washington, DC and ask/him to sign this letter.

You can reach your Representative through the Congressional Switchboard at (202) 224-3121. Ask to be connected to your Representative. Once you are connected to the office, ask to speak to the staff person who handles health care issues. Whether you speak to that person live or leave a voicemail, tell them (1) your name, (2) where you live and that you are a constituent, (3) that you would like the Representative to sign the “Dear Colleague” letter from Representatives Honda, Johnson, and Chu supporting increased funding for viral hepatitis and (4) a brief message why this issue is important to you. Tell them they can sign the letter by contacting Kelly Honda in Representative Honda’s office, Scott Goldstein in Representative Johnson’s office, or Linda Shim in Representative Chu’s office. The deadline for Representatives to sign is March 25th.

Text of “Dear Colleague” letter from Representatives Honda, Johnson, and Chu:

Support Funding for Viral Hepatitis

March XX, 2014

The Honorable Jack Kingston
Chairman
Subcommittee on Labor, Health and Human Services
United States House
Washington, D.C., 20515

The Honorable Rosa DeLauro
Ranking Member
Subcommittee on Labor, Health and Human Services
United States House
Washington, D.C., 20515

Dear Chairman Kingston and Ranking Member DeLauro:

As you begin deliberations on the Fiscal Year 2015 Labor, Health and Human Services, Education, and Related Agencies Appropriations bill, we would like to respectfully request that you allocate $47.8 million for the Division of Viral Hepatitis (DVH) at the Centers for Disease Control and Prevention (CDC), an increase of $16.4 million over the FY2014 level.

The CDC’s 2010 professional judgment (PJ) budget recommended $90.8 million each year from FY2011-FY2013, $170.3 million annually from FY2014-FY2017, and $306.3 million annually from FY2018-FY2020 for DVH in order to comprehensively address the viral hepatitis epidemic. While past increases have been helpful, these have only been small steps toward building a more comprehensive response to viral hepatitis. Our recommendation of $47.8 million is in line with the needs determined by the PJ and the goals of the Viral Hepatitis Action Plan, but pales in comparison to the CDC’s PJ.

The need to enhance and expand these prevention efforts is growing more urgent. Viral hepatitis is the leading cause of liver cancer – one of the most lethal, expensive and fastest growing cancers in America. More than 5.3 million people in the U.S. are living with hepatitis B (HBV) and/or hepatitis C (HCV) and 65-75% of them are undiagnosed. Without an adequate, comprehensive surveillance system, these estimates are only the tip of the iceberg. Viral hepatitis kills 15,000 people each year and is the leading non-AIDS cause of death in people living with HIV – nearly 25 percent of HIV-positive persons are also infected with HCV and nearly 10 percent with HBV.

The epidemic is particularly alarming because of the rising rates of new infections and high rates of chronic infection among disproportionately impacted racial and ethnic populations, and presents a dramatic public health inequity. For example, HCV is twice as prevalent among African Americans as among Caucasians. Asian Americans comprise more than half of the known hepatitis B population in the United States and, consequently, maintain the highest rate of liver cancer among all ethnic groups. Additionally, African American and Latino patients are less likely to be tested for HCV in the presence of a known risk factor, less likely to be referred to treatment for subspecialty care and treatment, and less likely to receive antiviral treatment. Recent alarming epidemiologic reports indicate a rise in HCV infection among young people throughout the country. Some jurisdictions have noted that the number of people ages 15 to 29 being diagnosed with HCV infection now exceeds the number of people diagnosed in all other age groups combined.

Further, the baby boomer population (those born 1945-1965) currently accounts for two out of every three cases of chronic HCV. As these Americans continue to age, they are likely to develop complications from HCV and require costly medical interventions that can be avoided if they are tested earlier and provided with treatment options. It is estimated that this epidemic will increase costs to private insurers and public systems of health such as Medicare and Medicaid from $30 billion in 2009 to over $85 billion in 2024, and also account for additional billions lost due to decreased productivity from the millions of workers suffering from chronic HBV and HCV.Over the last two years, CDC and the U.S. Preventive Services Task Force (USPSTF) have begun to align their recommendations for hepatitis screening, recommending one-time testing of baby boomers and screening vulnerable groups for HCV.

We appreciate the Committee’s support for viral hepatitis prevention, in particular the increased support to prioritize the identification of HBV and HCV-positive individuals who are unaware of their status. We strongly encourage you to sustain your commitment this year. We have the tools to prevent the major causes of viral hepatitis and liver cancer – a hepatitis B vaccine and effective treatments that reduce disease progression, new diagnostics for HCV and treatments that increase cure rates over 90%, and even more medical advances in the research pipeline. Making this relatively modest investment in the prevention and detection of viral hepatitis represents a key component in addressing a vital public health inequity and will get more Americans into care, strengthen our public health infrastructure and combat the devastating and expensive complications caused by viral hepatitis.

Sincerely,

XXX

The World’s Second Deadliest Cancer Is …Preventable

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Liver cancer is the world’s second leading cause of cancer deaths, according to the latest World Cancer Report 2014 released by the International Agency for Research on Cancer (IARC), which is the specialized cancer agency of the World Health Organization (WHO). About 800,000 deaths per year are related to liver cancer. Continue reading "The World’s Second Deadliest Cancer Is …Preventable"