Hep B Blog

Category Archives: United States

CHIPO Partner Highlight: United States Coalition for African Immigrant Health

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 and is comprised of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the U.S. Over the past year, CHIPO has grown its membership to include over 50 community-based organizations and federal agencies, all of which are working to meet the common goals of raising awareness about hepatitis B among African immigrant communities, and increasing rates of screening, vaccination, and linkage to care. This month, we are excited to highlight the work of one of our newer national partners, the United States Coalition for African Immigrant Health, Inc., (USCAIH) and their Executive Director, Janet Afoakwah. Please enjoy a recent interview with Janet, as she describes her work, including successes and challenges, and the positive impacts she and USCAIH have had through their annual conferences and upcoming plans for expanding their portfolio and mission.

Could you please introduce yourself and your organization?

My name is Janet Afoakwah, and I am now the Executive Director of the United States Coalition for African Immigrant Health (USCAIH), previously known as the United States Conference on African Immigrant Health. USCAIH began as the National African Immigrant Project in 2005, supported by the U.S. Office of Minority Health, which provided a platform for national and regional conferences focused on African immigrant (AI) health. These conferences continue to be held on a yearly basis and attract a broad range of attendees, including federal agencies, academicians, researchers, policy makers, public health officials, students, community organizations, and a variety of other stakeholders. We are very excited because this year, in addition to hosting our annual conferences, we are going to be broadening the scope and focus of our work to include other services.

Could you tell me a little bit about what some of USCAIH’s programs are that specifically address hepatitis and other health concerns in African communities?

As we move forward into 2023 and beyond, USCAIH is going to be working toward achievement of some broader goals, including coalition-building; providing technical support to organizations working with AI communities; offering trainings and support in cultural sensitivity for direct-service organizations, especially those working in the areas of HIV and hepatitis, since this is such a crucial component of engaging with AI communities; organizing and expanding our website with important and relevant resources; collaborating and forming partnerships with like-minded organizations; inviting researchers to share their work with the community via a new podcast format; and providing a database where researchers working on AI health can consolidate their findings for direct use and application within communities. Data and research about African immigrants often are not disaggregated from that about African American and Black populations, so getting a clear picture of the health and health disparities impacting AI communities can often be difficult.

Is USCAIH focused in a specific geographic area or does it have more of a national reach?

Our conferences are both regional and national, and we also try to include researchers and organizations from many countries within Africa itself. The other services that we are hoping to expand will be focused on AI communities within the U.S., but all around the country.

Which countries are primarily represented in the African diaspora that USCAIH serves?

We work with folks from all countries and communities. We have been able to reach some communities a bit more effectively, due to existing relationships that our staff has with community members, but our hope is to eventually reach all AI communities within the U.S.

What are some of the biggest challenges in addressing hepatitis and other health concerns at the community level? How have you worked to overcome these? Are there any additional resources that would be helpful to have?

The biggest missed opportunities are in vaccination and screening for both hepatitis B and liver cancer. This gap is due to a variety of reasons, including general lack of health insurance and lack of funding for supportive programs, as well as inequities in healthcare access in general for many immigrant communities, which contribute to greater health disparities. Another large barrier is the lack of provider knowledge about the high risk of hepatitis B in AI communities.

The best ways to overcome some of these challenges are in the creation and sustainability of programs that are centered on AI communities and are culturally and linguistically competent – this is SO important. Another key element in breaking some of the barriers around cultural humility and especially provider awareness is in establishing partnerships and effective collaborations. Building awareness among trusted community and faith leaders, who in turn can pass this on to community members, is also critical. We have been able to launch and disseminate a podcast that covers health issues affecting AI communities, and we try to feature researchers and guests with lived experience of different health challenges, including hepatitis B, in order to raise awareness, dispel myths and misperceptions, and bring the severity of different health concerns into perspective. We are also working to consolidate resources on our website and to have all partners providing direct services around the country listed on there for easy navigation and connection.

Other more broad-sweeping, policy-level changes that need to happen include making hep B screening recommendations universal for all adults; and improving and centralizing linkage to care systems.

What do you think are some of the biggest barriers in raising awareness and addressing rates of hepatitis screening and linkage to care at the local, state, and federal levels? Do you think more could be done in these spheres to address this problem?

This is a big concern and one of the steps we have recently taken to address this is hosting a roundtable discussion intended to educate healthcare providers and professionals about hepatitis B and how to care for community members who might be living with HBV. Better provider education and linkage to care needs to be the order of the day. Community-based organizations should be supplementing the services that providers are offering. One big important change that can occur is for electronic medical records to include an automatic question about hepatitis B screening for all patients. All of this can be done with additional funding and support from the federal and state levels.

Do you see this issue as being connected to other concerns facing African immigrant communities?

Yes, there are a variety of health concerns that face AI communities in the U.S, many of which require similar approaches of cultural sensitivity and community and provider awareness to address. These include diabetes, heart disease, hypertension, and various forms of cancer.

What are your favorite parts about your job? What got you interested in this work?

I am passionate about hepatitis B and that is what actually got me into public health. I came into this work having previously led an HIV project at another organization. I love every aspect of my work! My favorite moments are in organizing conferences because they move so fast, have many moving parts, and are SO rewarding! These conferences are widely recognized as the premier gathering for discussing AI health – many organizations of all types are interested in presenting and sharing their work. The conference planning is tremendously collaborative and is an all-volunteer effort. Now, as Executive Director, I can see the whole picture of the conferences and the organization as a whole and am so excited to continue to be working on our old and new endeavors. Hosting the podcast has been a great experience as well, and a wonderful tool to interview a variety of people working in AI health, to raise awareness about important health topics like hepatitis B and to amplify the mission of USCAIH.

Any other thoughts or ideas you’d like to share for improving health and closing health disparities among African immigrant communities in the U.S.?

I just want to emphasize the importance of practicing cultural and linguistic competency, and of working in collaboration and establishing relationships with a variety of partners (including community- and faith-based organizations, health centers, and providers) and how important this is for community work. Establishing trust (which requires time and patience) and providing appropriate resources also cannot be overstated. Continuing to host conferences in order to have a space where ideas can be shared and collaborations can happen is key, and hopefully we can all work together to develop and execute a strategic plan of sorts for improving health and eliminating disparities in African immigrant communities in the U.S.

Thank you so much for taking the time to speak with me today and for sharing more about the great work USCAIH has done and will continue into the future!

 Thank you!

Eighth Annual Hep B United Summit a Success!

Hep B United is very pleased to report that the eighth annual (and first virtual) Hep B United Summit was a great success! With over 200 attendees from around the US, the summit brought together partners – both new and familiar – to discuss and collaborate on the successes and challenges of the past year, and strategies to move forward toward the elimination of hepatitis B.  

The theme of this year’s summit was “Standing Up for Hepatitis B: Creative Collaborations to Amplify Awareness, Access, and Equity.” The event included many exciting sessions on topics such as progress toward a hepatitis B cure; strategies for providing hepatitis B services in the time of COVID-19; federal updates on hepatitis B; methods for incorporating hepatitis B into viral hepatitis elimination planning efforts at state and local levels; the path to universal adult hepatitis B vaccination; expansion of hepatitis B outreach in non-traditional settings, such as pharmacies, harm reduction centers, and correctional facilities; the pandemic of structural racism and how to bridge gaps in healthcare; and elevating the patient voice to move elimination efforts forward. The event included a poster session with over 20 submissions from presenters around the country, ranging from medical students to organizational partners, and covering a diverse and comprehensive array of topics related to hepatitis B. 

The virtual platform offered a dynamic and engaging experience, with opportunities for networking, game participation, social media involvement, and learning. The Summit concluded with an award ceremony in which nine Hepatitis B Champions and a Federal Champion were honored for their efforts and dedication to hepatitis B advocacy, awareness, prevention, and elimination efforts over the past year. 

 As in previous years, the Summit provided an opportunity for colleagues to gather and to exchange innovative and creative ideas that will help to advance hepatitis B elimination and elevate hepatitis B as an issue deserving of widespread national attention. Recordings of the Summit are available on Hep B United’s YouTube channel – check them out today!

All of Us Research Program

Medicine is not one size fits all. Changing that idea takes All of Us. 

Why is it that an African American woman in her thirties living in a large city tends to receive the same medical care as a man in his sixties of European descent who lives on a farm in rural America, who in turn receives the same treatment as a Korean American mother of two in her forties living in a midwestern suburb? Each of these people has different ancestry, lifestyle, environment, socioeconomic status, and genetics, all of which have a major impact on health. Why should these factors not impact healthcare as well?

The All of Us Research Program, an initiative of the National Institutes of Health, is working to change that. The goal of the program is to diversify the pool of available biomedical data, so that researchers can study many different people and groups, and doctors in turn can then make much more informed decisions about prevention, diagnosis, and treatment of various conditions, that are much more tailored to individual people and to specific groups of people, a practice known as precision medicine. For far too long, doctors have been using data from and information about “the average person” (typically a white man) to make decisions and provide care to everyone in the extraordinarily diverse population of the United States. Now there is a great opportunity for all of us to come together to help them change that! 

The overall objective of the project is to recruit one million or more participants and to follow them over ten years.The Hepatitis B Foundation, in partnership with Hep Free Haw aii and the Asian Engagement and Recruitment Core (ARC), is working to spread the word about the All of Us Research Program to everyone, but particularly among Asian American, Native Hawaiian, and Pacific Islander communities, who are under-represented in this area, historically and currently. 

Why should I participate?

This is an important chance to learn about your own health, including risk factors and exposures.  This is also a great opportunity to help fight diseases, start to close the gaps in a healthcare system that currently does not provide all Americans with the same high quality of healthcare, and more quickly find solutions to serious healthcare problems. Examples of some questions you could help answer are: “How can we prevent the chronic pain that affects more than 100 million people across the US each year? How can we develop cancer treatments that will work the first time, so that we can skip painful trial-and-error chemotherapy? Why does the heart medication Plavix have a much lower success rate among Asian Americans than those of European descent? What would be a more appropriate treatment?” The answers to these questions can be found by gathering more data and more insights from more people. People like you! You have the power to change the course of healthcare for yourself, your community, and future generations.

How Can I Get Involved?

Getting involved is quick and easy! The steps to follow are:

  • Visit www.joinallofus.org to learn more, enroll, and provide consent for the sharing of your electronic health record, where all of your medical information is digitally stored. 
  • Complete a series of surveys that will ask for information about your lifestyle, environment, family history, and background.
  • Provide health measurements like height, weight, waist circumference, and heart rate, among others. 
  • Provide biosamples of blood, urine, and saliva. 
  • Start using apps and technology to track your behaviors and routine activities, starting with a FitBit and including others down the road that are still under development. 

You will receive help and guidance at each stage in the process. 

What about my privacy?

Glad you asked! Any data that you provide will be highly secure and protected. Data security for this project has been built by experts with input from the public. All data is encrypted with identifying information removed, and guaranteed by a Certificate of Confidentiality. Researchers must also agree to a Code of Conduct before accessing the data. You will have access to any and all of your data at any time throughout the program and the highest standard of transparency is practiced. 

What if I don’t want to continue?

You are in control. You can stop your participation at any time. If you have already provided data and no longer want it to be used, you can simply let All of Us know and your data will be destroyed. 

Partners in the Process

All of Us is not a project where researchers know all of the answers and are just mining participants for data. Choosing to participate in All of Us means that you are a partner in the research process. Your thoughts and insights are valuable and you will play a direct role in shaping healthcare for yourself and your community both now and in the future – not just with your data, but as an active participant in the research process, including in the proposal and guidance of future research. 

The All of Us Research Program aims to serve people better, to be more inclusive in biomedical research, to find healthcare solutions that are realistic for and meaningful to more people, and to work toward research and medical breakthroughs that are more reflective of the diversity of the United States. Take the next step to make sure we are Invisible No Longer. Visit www.joinallofus.org to get started today!

 

Announcing the New Current Patient Opportunities Page on the HBF Website

A new page has been created on the Hepatitis B Foundation’s website that contains a compilation of various opportunities available for people living with hepatitis B. These opportunities can be for clinical trials, other types of research, or toolkits with information and resources for those living with hepatitis B and their loved ones and community members. All of these postings are produced or organized by entities external to HBF, but all are related to improved quality of life and liver health. The first two of these opportunities are listed below.

New Tool from CME Outfitters

A new HBV Patient Education Hub has been compiled by continuing medical education company CME Outfitters. The hub includes a great deal of valuable information, such as an overview of hepatitis B, a list of questions to ask your healthcare provider, a patient guide, information about hepatitis B co-infection, doctors’ advice on what to expect from treatment, and many other resources. All information is in an engaging and accessible format. Check it out today!

New Study Opportunity Available for People Living with Itching (Cholestatic Pruritus) Due to Liver Disease or Injury

A new paid opportunity has become available for those experiencing itching caused by hepatitis B, hepatitis C, drug-induced liver injury, auto-immune hepatitis, or primary sclerosing cholangitis (PSC). If you live in Canada or the US and have this condition, you may be eligible to participate in an interview to help researchers better understand your lived experience. The new research study is seeking participants ages 12-80 living in the US and Canada who are living with this itch. This is an opportunity to be involved in research and help advance scientific understanding! Contact the research coordinator for more information and to check if you are eligible. 

Please note that this study does not include treatment and pruritus must be at an intensity level of 4 on a scale of 1-10 for at least the past 8 weeks in order to participate. Patients cannot be pregnant or breastfeeding or have a diagnosis of primary biliary cholangitis. 

We are very excited to unveil this new section of our website and hope it will be a useful resource for many going forward! Please check back often, as more opportunities will be posted as they arise.

The Need for a National Adult Hep B Vaccine Awareness Day

 

In 2019, the hepatitis B community successfully advocated for the introduction of  U.S. House and Senate resolutions to designate April 30th as National Adult Hepatitis B Vaccination Awareness Day for the first time!

Why is Awareness about Adult Hep B Vaccination Needed? 

Adults in the United States have extremely low rates of vaccination, primarily because many were born before the vaccine became a healthcare standard and mandated for school. Just 25% of all U.S. adults have completed their vaccine series. Without completing the series, individuals are still vulnerable to potential exposures; one dose of the vaccine is not enough. Coupled with the recent increase in injection drug use, low vaccination rates among adults have been driving a rise in acute hepatitis B cases across the nation. The new cases that are linked to injection drug use are particularly prevalent among adults aged 30 to 49. Unfortunately, newly infected women may be unaware of their status and may pass the virus on to their infants during birth, putting them at significantly higher risk of chronic infection and liver cancer.

Image Courtesy of National Foundation for Infectious Diseases

Immunization rates remain low among vulnerable populations including those living with other chronic conditions such as hepatitis C, HIV, kidney disease, or diabetes. In fact, just 12% of diabetic adults 60 years old or older are fully vaccinated, and 26% of diabetic adults ages 19-59 have received the complete vaccine series. Healthcare workers are an under-vaccinated vulnerable population as well. According to the Centers for Disease Control and Prevention, just 60% of healthcare personnel have completed their vaccine series. 

National Adult Hepatitis B Vaccine Awareness Day Resolution

The National Adult Hepatitis B Vaccine Awareness Day Resolution (H.Res. 331) was introduced in the U.S. House of Representatives by Representatives Hank Johnson (GA-4) and Grace Meng (NY-6) – the Congressional Hepatitis Caucus’ co-chairs. A similar resolution (S. Res. 177)  was also introduced in the U.S. Senate by Senators Maize Hirono (HI) and Angus King (ME). 

This resolution is an opportunity to raise awareness about the importance of the hepatitis B vaccine for providers and community members, as well as providing support for testing, vaccination, and linkage to care for individuals. In addition, the resolution helps encourage a commitment to increasing hepatitis B vaccination rates for adults while maintaining high childhood vaccination rates. 

Hepatitis B Vaccine

The modern hepatitis B vaccine has been widely used – with over 1 billion doses given – since it was created in 1985, and has been proven to be one of the safest and most effective vaccines in the world! The 3-dose vaccine is given over the span of 6 months, and provides lifelong protection once completed. Adults can also be fully vaccinated with a new 2-dose vaccine called Heplisav-B! Heplisav-B can be completed in just one month and has been proven to be highly effective in populations that may be hard to vaccinate, such as older adults and people living with diabetes. 

Raising awareness about adult hepatitis B vaccination is a small, but essential step in the journey towards the elimination of hepatitis B. With national support and resources, the U.S. can protect vulnerable communities from serious liver damage and even liver cancer. 

You can show your support for National Adult Hepatitis B Vaccine Day by using the hashtag #AdultHepBVaxDay on April 30th and when discussing the hepatitis B vaccine on social media! Graphics are also available to share throughout your networks.

Please see the below links to access additional resources on adult hepatitis B vaccination:

The History of National African Immigrant and Refugee HIV & Hepatitis Awareness Day 2019

 

Each year in September, the Hepatitis B Foundation recognizes National African Immigrant and Refugee HIV and Hepatitis Awareness Day (NAIRHHA). 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. Although not yet nationally recognized, the multicultural AIDS Coalition (MAC) and the Coalition Against Hepatitis B for People of African Origin (CHIPO) are working to establish NAIRHHA day as its own federally designated awareness day. As explained by Chioma Nnaji, Director at the Multicultural AIDS Coalition’s Africans For Improved Access (AFIA) program, there is a great need to establish NAIRHHA day as its own day.  “Several of the current awareness days are inclusive of African immigrant communities, but do not comprehensively address their unique social factors, cultural diversity as well as divergent histories and experiences in the US.”

Why NAIRHHA Day? 

People born outside of the U.S. often face different health challenges than those born in the country and face various barriers to accessing important healthcare services. African immigrants (AI) are disproportionately burdened by HIV and viral hepatitis. Advocates for NAIRHHA Day recognized the need to address these health issues in the community and thought that a combined awareness day would be the most effective way to reach the largest number of people impacted. 

Hepatitis B presents a significant public health burden for many African countries, and subsequent immigrant populations living in the United States. Although data is limited on hepatitis B infection among African immigrant (AI) and refugee communities in the U.S., studies have shown infection rates are high – between 5 and 18%1,2,3,4,5. One community study in Minnesota even found AIs accounting for 30% of chronic hepatitis B infections 6. AI communities are also known to be disproportionately affected by HIV/AIDS, with diagnosis rates six times higher than the general U.S. population7. Despite this alarming disparity, HIV and hepatitis B awareness, prioritization, and funding has remained limited for this population.

Two of the largest barriers to testing for HIV and viral hepatitis among African immigrants are lack of awareness and stigma. Cultural and religious values shape the way people view illness, and there can be fears around testing and diagnosis of illness, and moral implications for why someone may feel they are at risk. While stigma about HIV/AIDS and hepatitis B often come from within one’s own community and culture, it is primarily driven by lack of awareness. Oftentimes, awareness is low in an individual’s home country because of limited hepatitis education, resources, and healthcare infrastructure.  When they arrive in the U.S., awareness remains low for similar reasons. Community health workers and physicians are vital stakeholders to raise community awareness in a culturally sensitive way to help identify current infections and prevent future ones through vaccination.

Recognizing NAIRHHA Day is important in order to address the numerous barriers to prevention and treatment that African immigrants face. It was also founded to acknowledge the cultural and ethnic differences that influence how African-born individuals interact with their medical community and the concept of illness. The specific goals of the day of recognition include:  

  • Raising awareness about HIV/AIDS and viral hepatitis to eliminate stigma;
  • Learning about ways to protect against HIV, viral hepatitis and other related diseases;
  • Taking control by encouraging screenings and treatment, including viral hepatitis vaccination;
  • Advocating for policies and practices that promote healthy African immigrant communities, families, and individuals. 

What has been done so far? 

The path to federal recognition has been a slow process, but progress has been made! Check out the timeline below for a brief overview of what has been accomplished since the day was created: 

2014:

    • Inaugural city-wide events in Houston, Texas; Boston, Massachusetts; Washington D.C.; Maryland; Seattle, Washington; New York; Ohio and Philadelphia.
    • A national petition was created and 40% of the petitioners are from or live in Massachusetts; 60% of signers are from 33 other states across the US

2015:

2016:

    • Senator Elizabeth Warren gave a proclamation in Massachusetts
    • Created an informational blog post for the National Viral Hepatitis Roundtable 
    • Joined the African immigrant Hepatitis/HIV Twitter chat (#AIHHchat)

2017:

    • Hosted a national webinar focused on barriers and strategies  addressing HIV and hepatitis B among African immigrants
    • Official request to HIV.gov to officially recognize NAIRHHA Day

2018:

    • Hosted an online panel discussion addressing HIV and HBV stigma among African immigrant 
    • New social media campaign
    • National Webinar with HBF and CHIPO focused on stigma

September marks the unofficial beginning of National African Immigrant Heritage Month (NAIHM) – state and federal officials in over thirty states recognize September as NAIHM despite it not being federally declared –  which is why NAIRHHA Day is held on September 9th. Federal recognition would significantly boost awareness within the community and allow for the creation of much-needed resources like culturally sensitive education tools. It would also help to disseminate the important health messages on a larger, national scale. 

This year, the Hepatitis B Foundation and CHIPO are excited to be sponsoring four community events with partners throughout the U.S. to commemorate NAIRHHA day and promote hepatitis B and HIV education and testing in AI communities.

For more information about NAIRHHA Day: 

  • Follow NAIRHHA Day on Twitter @NAIRHHA
  • Check out our blog posts on NAIRHHA Day
  • Visit the CHIPO website and click here for downloadable badges and infographics
  • Contact Chioma, Director of the Multicultural AIDS Coalition, at cnnaji@mac-boston.org to get involved in advocacy for NAIRHHA Day

References:

  1. Kowdley KV, Wang CC, Welch S, Roberts H, Brosgart CL. (2012). Prevalence of chronic hepatitis B among foreign-born persons living in the United States by country of origin. Hepatology, 56(2), 422-433. And Painter. 2011. The increasing burden of imported chronic hepatitis B—United States, 1974-2008. PLoS ONE 6(12): e27717.
  2. Chandrasekar, E., Song, S., Johnson, M., Harris, A. M., Kaufman, G. I., Freedman, D., et al. (2016). A novel strategy to increase identification of African-born people with chronic hepatitis B virus infection in the Chicago metropolitan area, 2012-2014. Preventing Chronic Disease, 13, E118.
  3.  Edberg, M., Cleary, S., & Vyas, A. (2011). A trajectory model for understanding and assessing health disparities in Immigrant/Refugee communities. Journal of Immigrant and Minority Health, 13(3), 576-584.
  4.  Kowdley, K. V., Wang, C. C., Welch, S., Roberts, H., & Brosgart, C. L. (2012). Prevalence of chronic hepatitis B among foreign‐born persons living in the united states by country of origin. Hepatology, 56(2), 422-433.
  5.  Ugwu, C., Varkey, P., Bagniewski, S., & Lesnick, T. (2008). Sero-epidemiology of hepatitis B among new refugees to Minnesota. Journal of Immigrant and Minority Health, 10(5), 469-474.
  6.  Kim WR, Benson JT, Therneau TM, Torgerson HA, Yawn BP, Melton LJ 3d. Changing epidemiology of hepatitis B in a U.S. community. Hepatology 2004;39(3):811–6.
  7.  Blanas, D. A., Nichols, K., Bekele, M., Lugg, A., Kerani, R. P., & Horowitz, C. R. (2013). HIV/AIDS among African-born residents in the United States. Journal of immigrant and minority health, 15(4), 718–724.

Behind the Scenes of A Viral Hepatitis Elimination Plan in Pennsylvania

In Pennsylvania, the Hepatitis B Foundation is collaborating with various stakeholders to launch a State Viral Hepatitis Elimination Plan! Join us as we document our process from start to finish!

In this video, Michaela Jackson, MS recounts the Hepatitis B Foundation’s attendance to the first ever State Viral Hepatitis Elimination Stakeholder Planning Meeting! The meeting, which was hosted by the Pennsylvania Department of Health, brought awareness and education to the state’s lawmakers!