Hep B Blog

Category Archives: United States

Partner Highlight: Philadelphia Department of Public Health’s Viral Hepatitis Program Makes Great Strides Towards Elimination!

 

 

 

 

 

 

 

Happy Hepatitis Awareness Month! Continue reading to get to know the Viral Hepatitis Program at the Philadelphia Department of Public Health (PDPH)!  

The Viral Hepatitis Program at PDPH strives to support Philadelphia residents and service providers in several ways, including preventing viral hepatitis infection through education, screening, and vaccination; improving and providing access to affordable treatment; and supporting provider efforts to provide comprehensive viral hepatitis care/treatment. There are many tools that exist to prevent and treat viral hepatitis infections, and even cure them in the case of hepatitis C. Access to these services, however, is not readily available for everyone. The Viral Hepatitis Program aims to increase access and reduce inequities in care through collaborations and programming, in hopes of achieving the 2030 goal of hepatitis B and hepatitis C elimination.  

The Viral Hepatitis Program performs a number of exciting projects to achieve this work! 

 

 

 

Patient Engagement 

Many members of the Viral Hepatitis Program spend their days interacting with patients over the phone. Public health surveillance allows the program to work with hepatitis B and hepatitis C patients to provide individualized support. This outreach provides patients with viral hepatitis education, linkage-to-care, and care navigation along with access to harm reduction materials, support for substance use disorder care, and additional resources. 

 

 

 

 

 

Above: Viral Hepatitis team member, Cassandra Lamadieu, provides viral hepatitis educational materials to community members in attendance at the 2023 Philadelphia Block Captain Rally. 

 

Philly InSync: Provider Engagement  

Through collaborations within PDPH and with a partner organization, the Philly InSync Project provides education and technical assistance to healthcare providers and facilities to integrate harm reduction, substance use disorder care, and care for infectious diseases related to drug use. Philly InSync works with multiple sites to provide testing, care, and treatment of hepatitis B, hepatitis C and other infectious disease care while also providing technical assistance including staff trainings, data improvement strategies, and reducing barriers to care. A technical advisory committee of Philadelphia providers meets quarterly to provide enhanced technical assistance to these sites while learning how to improve the care they provide as well. The program elevates conversations among Philadelphia providers and creates a collaborative community to learn, listen, and share experiences, challenges, and solutions that involve anything from clinical experiences to insurance barriers.   

Pharmacy Project: Increasing Hepatitis A & B Vaccination 

Another project to increase viral hepatitis prevention efforts is the Pharmacy Project, which is focused on improving pharmacy-based vaccination for hepatitis A & B. Annually, the Viral Hepatitis Program conducts a survey of pharmacies in Philadelphia to collect information about hepatitis A and B vaccination services. The survey results are shared with the community on a map that allows patients and providers to find vaccinating pharmacies. The data collected is also used to identify barriers to vaccine access, to inform additional activities to support patients, providers, and pharmacists. 

 

 

 

 

 

 

 

 

Social Media 

To engage the community and to promote collaboration, the program runs several social media accounts and provides up-to-date information and resources. To access information on vaccine events, mobile health clinics, and many other health services follow along at the links below! Make sure to follow along during the month of May for some special Hepatitis Awareness Month content!  

 

 

 

 

 

 

 

Philadelphia Hepatitis B & Hepatitis C Elimination Plan 

The Viral Hepatitis Program and local partners and community members have worked together to create a plan for the elimination of hepatitis B and hepatitis C in Philadelphia. To see information on this process visit: Philadelphia Hepatitis B & Hepatitis C Elimination Plan Community Engagement Executive Summary. Striving to eliminate the impact of these infections from Philadelphia is not a new effort, as a committed community of viral hepatitis eliminators has been hard at work for quite some time. Hep B United – Philadelphia and The Hepatitis C Allies of Philadelphia (HepCAP) are the two local coalitions made up of individuals and organizations committed to viral hepatitis elimination. While much has been accomplished, PDPH and the local community of eliminators are continuing the work to provide services to educate, prevent, vaccinate, test, link-to-care, and treat these two diseases in Philadelphia. The Plan will be released in 2023. 

 

To learn more about viral hepatitis or for any questions… 

Websites: Phillyhepatitis.org & Hepcap.org 

Email: hep-ddc@phila.gov 

To order educational materials: bit.ly/hepeducationalmaterials  

Hepatitis B and Injection Drug Use: Risks, Barriers to Care, and Prevention Strategies

 

 

 

 

 

 

 

 

 

Hepatitis B is a liver infection which is caused by the hepatitis B Virus (HBV). Hepatitis B is transmitted from person to person through blood, semen, or other bodily fluids. You can learn more about the ways hepatitis B is spread here. People who inject drugs (PWID) are at high risk for contracting the virus due to the sharing of needles and low  awareness and education about hepatitis B.

HBV Prevalence among PWID Communities

People who inject drugs (PWID) are at high risk for hepatitis B virus infection due to various factors, including sharing injection equipment and lack of awareness about hepatitis B transmission. Using unclean needles to inject drugs can result in the exchange of blood. This increases a person’s risk of being exposed to the virus. Hepatitis B prevalence among PWID is much higher than in the general population. Chronic HBV infection has been identified in 3.5% to 20.0% of PWID in a variety of settings, and 22.6% of PWID have evidence of past infection (Haber & Schillie, 2021). Drug injection is the most common risk for persons ages 18-40 years old with hepatitis B virus. 

Barriers to Care for PWID Communities

Access to treatment can be a significant barrier for PWID, who may face stigma and discrimination in healthcare settings. To find out if someone has hepatitis B it is recommended that a triple panel hepatitis B test be run (which includes HBsAg, HBcAb and HBsAb). These tests will help identify people with hepatitis B, a previous exposure to hepatitis B and those who have protection against hepatitis B infection (through vaccination). For those with hepatitis B, treatment options for hepatitis B consist of antiviral medications that can help to control the virus and reduce the risk of serious liver damage, cirrhosis, and liver cancer. Treatment is taken daily for life generally. PWID lack access to these treatments due to the stigma attached with substance use and addiction. Some of these stigmas include being associated with dangerous, unpredictable, and lacking self-control (NIH, 2019). In a recent study, 88% of individuals from PWID have experienced some type of stigma from the healthcare system (NIH, 2019).  Some of these stigmas included being poorly treated in healthcare facilities while interacting with nurses, security guards, and other medical providers. Due to these biases, people often refuse to seek health care services to avoid mistreatment. Stigma is the top barrier for PWID communities worldwide (Biancarelli et al, 2019). Even though the cost of treatment may be a barrier for some people, there are resources to find affordable options. Learn more about accessing medication here

Prevention Strategies

One effective prevention strategy to combat the spread of hepatitis B among PWID is to use clean injection equipment, like needles, works, and syringes. This will reduce the likelihood of transmission. New services have been introduced in cities like Philadelphia to decrease the rate of sharing needles. Prevention Point Philadelphia for example is a nonprofit public health organization that works to provide comprehensive harm reduction services to Philadelphia and surrounding areas. The syringe service program specifically allows used syringes to be exchanged for clean ones. With these services, the need to share needles can decline, which then can help decrease the risk of hepatitis B and other infectious diseases being spread in the community. Needle and syringe programs also provide other social and health services, such as counseling,  hepatitis testing, and referral to drug treatment for example.

Another way to prevent hepatitis B in PWID is through education and outreach efforts to help raise awareness about the risks of transmission and how to reduce those risks. This will also encourage safer injection practices to reduce the risk of transmission through blood contact. Other recommendations for prevention of hepatitis B among people who inject drugs is to offer vaccinations for PWID communities. The hepatitis B vaccine is safe and effective and recommended for all adults in the US between the ages of 18-59 and above 59 with risk factors. Testing is another great way to help the community- to identify infection and encourage prevention through vaccination ultimately preventing liver cancer in the long run. Offering people who inject drugs incentives to increase uptake and complete the vaccination schedule is also a way to prevent hepatitis B in PWID (WHO, 2023).  The United States has set a goal to decrease the number of cases of hepatitis B in the PWID community. The National Progress Report goal is to reduce the rate of new hepatitis B virus infections among people who inject drugs by more than 25% by 2025 (CDC, 2020). 

 

To learn more about the resources provided by Prevention Point, click here.

 

References:

World Health Organization. (2022, June 24). Hepatitis B. World Health Organization. Retrieved March 15, 2023, from https://www.who.int/news-room/fact-sheets/detail/hepatitis-b

World Health Organization. (2015, March). Guidelines for the prevention, care and treatment of persons with chronic hepatitis B infection. World Health Organization. Retrieved March 15, 2023, from https://www.who.int/publications/i/item/9789241549059

Centers for Disease Control and Prevention. (2020, August 11). NP report 2025 goal: Reduced HBV rate among PWID. Centers for Disease Control and Prevention. Retrieved March 15, 2023, from https://www.cdc.gov/hepatitis/policy/NPR/2020/NationalProgressReport-HepB-ReduceInfectionsPWID.htm

Biancarelli DL, Biello KB, Childs E, Drainoni M, Salhaney P, Edeza A, Mimiaga MJ, Saitz R, Bazzi AR. Strategies used by people who inject drugs to avoid stigma in healthcare settings. Drug Alcohol Depend. 2019 May 1;198:80-86. doi: 10.1016/j.drugalcdep.2019.01.037. Epub 2019 Mar 8. PMID: 30884432; PMCID: PMC6521691.

Haber, P., & Schillie, S. (2021, August 18). Pinkbook: Hepatitis B. Centers for Disease Control and Prevention. Retrieved March 24, 2023, from https://www.cdc.gov/vaccines/pubs/pinkbook/hepb.html 

Centers for Disease Control and Prevention. (2023, March 17). QuickStats: Age-adjusted drug overdose death rates, by state – National Vital Statistics System, United States, 2021. Centers for Disease Control and Prevention. Retrieved March 19, 2023, from https://www.cdc.gov/mmwr/volumes/72/wr/mm7211a7.htm?s_cid=mm7211a7_e&ACSTrackingID=USCDC_921-DM101471&ACSTrackingLabel=This+Week+in+MMWR+-+Vol.+72%2C+March+17%2C+2023&deliveryName=USCDC_921-DM101471

Board of Health, Department of Public Health. (2022, October 26). Health Department releases data on 2021 overdose deaths in Philadelphia: Department of Public Health. City of Philadelphia. Retrieved March 20, 2023, from https://www.phila.gov/2022-10-26-health-department-releases-data-on-2021-overdose-deaths-in-philadelphia/

A Quick Introduction to Public Health Funding in the United States

Written by Frank Hood- Associate Director of Policy and Partnerships at Hepatitis B Foundation!

 

The COVID-19 pandemic put a spotlight on why countries need a robustly funded public health system that can respond to the needs of its citizens quickly. In the United States, that public health system is a patchwork of federal, state, and local departments, agencies, and programs. Each has their own rules and regulations, which can be challenging to navigate. You might have a hard time seeing how it all works together without falling apart. And you might struggle to understand how resources can find their way to the local health centers and community-based organizations doing much of the important health work on the ground. This blog post provides a basic overview of how public health funding works within the United States. 

Hundreds of federal departments, agencies, and programs funnel money into the public health system of the United States. One of the more familiar organizations is the Department of Health and Human Services (HHS). Among its many health-related functions, HHS handles disease prevention and outbreak response through the Centers for Disease Control and Prevention (CDC) and provides health coverage for underserved and older Americans through the Centers for Medicare and Medicaid Services (CMS). Other departments like the Department of Agriculture (USDA) may not seem like a key source of health funding, and yet support dietary health initiatives and help states build rural medical facilities through infrastructure investment programs.

The amount of funding these departments, agencies, and programs receive varies yearly. Some funding, like for Medicare and Medicaid, doesn’t require an annual vote from Congress (known as “mandatory spending” in policy-speak) and is just paid for as expenses are incurred. Other funding, like for the Health Resources and Services Administration (HRSA), requires a yearly vote of Congress as well as sign-off by the President. This is known as discretionary spending. Most US public health programs fall in the discretionary spending category. That vote happens each year after the House and the Senate go through a formal process to determine how much money every department, agency, and program in the entire federal government receives. This process also includes specifying any special instructions or conditions associated with the funding like restrictions on how the money can be spent or requesting a status report on the impact of a specific program

If Congress can’t agree on funding levels by the start of the new fiscal year, then a government shutdown occurs. In those instances, any non-essential federal program funded by discretionary spending would be forced to suspend operations, while state and local programs would still be able to function but would not receive federal funds during that time.

Once Congress approves funding levels, federal funds and agencies begin the process of distributing money to their various internal programs and to states and other localities. In the simplest terms, many agencies will send money to states in the form of grants that the states apply for by listing how they would use the money and what positive impact it will have on the state. The amount of funding that passes down to states depends on the function of the agency. State health departments receive the largest percentage of their funding from federal sources, so the grant-making process can lead to states competing for limited federal funds. Federal funds make up anywhere between half and two-thirds of states’ total health funding.

Much of the remaining funding for state health departments comes from their state legislatures. Each state has their own specific process, but most states mirror the federal approach of having their legislatures determine how much state funding should be given to various departments, agencies, and programs in the state and any restrictions on the use of that funding. Other sources of public health dollars include fines, fees, charitable donations, and public-private partnerships.

 

 

 

 

 

 

 

 

 

 

 

Generally, state health departments send their dollars to local health departments, which deliver direct care or education on the ground. The funding the state keeps  is often used to pay for state-wide health systems like health surveillance, emergency response, and prevention education. How states determine where money goes varies, but there are usually similarities to how federal departments and agencies determine which states should receive what funding with grant applications.  

Once local health departments and community-based organizations have funding in-hand, they then must spend it according to the rules and regulations set by the source (Congressional instructions, federal agency requirements, state requirements, etc.).  

At this point, you see the complex tapestry of public health funding in action in your community: the health screenings at the local fair, the vaccine drives at your local place of worship, and even when your child brings home a pamphlet from a health educational program held at school. It’s all public health funding in action. 

In addition to public funds, some programs are funded in part directly through donations from people like you. If a public health program means a lot to you, see if you can help the organization who put it together by volunteering, spreading the word or donating. 

 

References:

https://www.cdc.gov/about/organization/mission.htm 

https://www.cms.gov/ 

https://www.usda.gov/our-agency/about-usda/mission-areas 

https://crsreports.congress.gov/product/pdf/R/R47106 

https://www.crfb.org/papers/qa-everything-you-should-know-about-government-shutdowns 

https://www.astho.org/topic/public-health-infrastructure/profile/#activities 

https://www.norc.org/PDFs/PH%20Financing%20Report%20-%20Final.pdf 

https://www.norc.org/PDFs/PH%20Financing%20Report%20-%20Final.pdf 

https://www.publichealthlawcenter.org/resources/state-local-public-health-overview-regulatory-authority 

If You Have Hepatitis B, Donating Your Blood May Change the Face of Hepatitis B Testing.

The Hepatitis B Foundation has partnered with Plasma Services Group to educate people living with Hepatitis B about the critical need for blood donation. This is not like the local blood drives you always hear about. Instead, Plasma Services Group focuses on specialty plasma collection which supports the making of diagnostic tests used in labs around the world. The demand for HBV testing grows every year, but access to those tests is not assured. As you know, only 25% of people in the U.S. and 10% of people worldwide with Hepatitis B have been diagnosed. With your help, we can reduce those real-life barriers to Hepatitis B testing and improve lives. Follow the link.

How do I donate?

Donating your blood to Plasma Services Group is easy. After you complete this form, they will reach out to you if you are a good candidate for blood donation. If chosen, they will send a phlebotomist to your home to complete the blood-draw.  PSG compensates participants financially as a thank you for the trust, time and efforts associated with donation. This program is only available to U.S. residents who are preferably in the Northeast. You must be 18 years of age or older and weight 110 pounds or more. You must be living with chronic Hepatitis B, which means you have had Hepatitis B for over 6 months.

Why this is important to the future of Hepatitis B?

As you may know, access to good healthcare isn’t always easy. By creating new blood tests, we can help diagnose Hepatitis B more reliably which helps more people get into care and manage their hepatitis B. Your blood donation could directly impact the detection, care and quality of life for millions of people living with hepatitis B who have not been diagnosed yet, as well as those who are managing their care on a daily basis.

Despite the large population of people living with hepatitis B, it is hard for companies that source biological raw materials to recruit donors. Most people are unaware of the large amount of blood plasmas that are essential to manufacture test kits. Rarer subtypes that are prevalent in Africa and Asia, where the need for detection is the highest and growing the fastest, are even harder to find in N. America. By becoming a regular donor to Plasma Services Group, you are filling a vital role for the medical diagnostic industry and helping to close the gap between patient and care.

Get started today!

Fill out this form and Plasma Services Group will fill you in on next steps.

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: