Hep B Blog
About Hepatitis B, HBV, Hepatitis B Advocacy

Correctional Facilities and Hepatitis B

 

People experiencing incarceration in correctional facilities face a disproportionate burden of hepatitis B. This is due to potential increased exposure to high-risk individuals, including people who inject drugs or exchange sex for money or drugs.1 This blog will discuss the prevalence of hepatitis B in individuals experiencing incarceration in the United States and globally, risk factors for infection, and recommendations for policymakers, public health professionals, and correctional facilities.

Prevalence in The United States

The Centers for Disease Control and Prevention (CDC) estimates 850,000 to 2.2 million individuals are living with hepatitis B in the United States.2 Of those individuals, an estimated 0.9% to 11.4% for HBsAg (active, infectious HBV) and 6.5% to 42.6% for HBcAb (ever infected) of people experiencing incarceration are living with hepatitis B.2

Prevalence Internationally

Researchers have conducted various studies in different countries to determine hepatitis B prevalence. For example, a study in Iran found a prevalence of HBV DNA in incarcerated individuals at 2.1%.1  Another study in Mexico City tested over 15,500 men experiencing incarceration and almost 1,800 women experiencing incarceration and found the rate of HBcAb among men was 2.8% and among women, 3.0%. The rate of HBsAg was 0.1% among men and 0.3% among women.1

Risk Factors

Hepatitis B is transmitted through blood, semen, and other bodily fluids.1  Routes of transmission among incarcerated individuals include sharing needles and cookers or other injection drug paraphernalia, sharing tattoo paraphernalia, sharing razors, and having unprotected sex with someone living with hepatitis B.3  Because of policies in the United States criminalizing injection drug use and sex work, correctional facilities are more likely to have higher concentrations of individuals engaging in these risky behaviors. Additionally, sterile equipment is sometimes inaccessible and sharing drug injection equipment is common in correctional facilities which contributes to an increased risk of individuals contracting hepatitis B while experiencing incarceration.3

Recommendations

U.S. Preventive Services Task Force (USPSTF) recommends hepatitis B screening for all high-risk adult individuals which include people experiencing incarceration. However, The Hepatitis B Foundation urges a recommendation for universal screening because it would allow for individuals experiencing incarceration to lower their risk of contracting hepatitis B in correctional settings.

Opt-out vaccine programming is another strategy that can help to prevent the spread of hepatitis B in correctional facilities. However, it is also important for individuals at correctional facilities to be screened before they are vaccinated, to identify those who are already infected. Additionally, when public health professionals implement opt-out hepatitis B vaccination and/or screening programs in correctional facilities, they must ensure clear communication so that program recipients understand what they are being screened/vaccinated for, and that testing/vaccination is voluntary.4 Being diagnosed with a chronic infectious disease can be daunting, and some would rather not know their status, which is important to recognize and respect. Public health professionals also need to recognize the challenges associated with designing vaccination programs in correctional facilities. It is important to design a sustainable program which emphasizes continuous medical care for individuals who test positive for hepatitis B throughout incarceration, even with challenging situations like transfers, and reintegration back into their communities.1

Correctional facilities should consider providing treatment options for people experiencing addiction as well as utilizing a harm reduction approach to provide sterile injection and tattoo equipment to reduce the risk of hepatitis B transmission.1

References

  1. Smith JM, Uvin AZ, Macmadu A, Rich JD. Epidemiology and Treatment of Hepatitis B in Prisoners. Curr Hepatol Rep. 2017;16(3):178-183. doi:10.1007/s11901-017-0364-8
  2. https://www.cdc.gov/hepatitis/hbv/hbvfaq.htm
  3. Gupta S, Altice FL. Hepatitis B virus infection in US correctional facilities: a review of diagnosis, management, and public health implications. J Urban Health. 2009;86(2):263-279. doi:10.1007/s11524-008-9338-z
  4. Rosen DL, Golin CE, Grodensky CA, et al. Opt-out HIV testing in prison: informed and voluntary?. AIDS Care. 2015;27(5):545-554. doi:10.1080/09540121.2014.989486

 

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

300 Million Reasons, advocacy, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, News

Hepatitis B Foundation Introduces 300 Million Reasons Movement

By Beatrice Zovich

The Hepatitis B Foundation is excited to launch a new movement called 300 Million Reasons, named for the almost 300 million people worldwide who are living with hepatitis B. The goal of this movement is to improve awareness about hepatitis B and liver cancer worldwide, to promote engagement of key stakeholders, and to empower people impacted by hepatitis B across the globe to become vocal advocates. We want to amplify the voices and stories of the millions of people directly affected by this disease, in order to make sure that hepatitis B is granted the funding, attention, and serious consideration that it deserves. The 300 Million Reasons movement will be officially launched in July of 2021, in time for World Hepatitis Day, but we wanted to begin sharing resources and information now. 

This movement is divided into four branches: B Informed, B Connected, B the Voice, and B the Change. Each of these arms is described below. 

B Informed

Hepatitis B can be prevented, treated, and managed. The B Informed branch of the 300 Million Reasons movement involves raising awareness about hepatitis B and liver cancer, providing accurate information, dispelling myths and misconceptions, decreasing stigma and discrimination, and providing simple hepatitis B educational tools, which will focus on transmission, prevention, liver cancer screening, and living with chronic hepatitis B. We have created a free and downloadable social media toolkit that can help spread the word about statistics, vaccines, testing, monitoring and care, symptoms, blood tests, acute vs. chronic hepatitis B and more. Check it out today! 

B Connected

You are not alone! The B Connected arm of 300 Million Reasons works to increase access to clinical trials, expand global connections to support people living with hepatitis B and their loved ones around the world, establish international peer mentoring programs, and create a social network and further community engagement opportunities for people impacted by hepatitis B. This branch of the movement will be modeled after current coalition work that has been done with Hep B United and the Coalition Against Hepatitis in People of African Origin. 

B the Voice

Your voice matters! The B the Voice component of the 300 Million Reasons movement is focused primarily on international storytelling and elevating the voices of those living with and affected by hepatitis B around the world. Stories of discrimination, stigma, screening, diagnosis, treatment, supporting community and family members, personal and larger-scale successes, setbacks and victories – all are important to share and learn about in order to raise awareness, inspire change, and eventually find a cure. Do you have a story to share? We would love to read it! Share your story today using this link. 

B the Change

Stand up, speak out! B the Change aims to increase activism among those living with hepatitis B and their loved ones and to use this as a tool to advance the cause of increasing knowledge about and support for hepatitis B among legislators and policy-makers. It will include national and international community ambassadors, strong relationships with the World Hepatitis Alliance and other key partners, outreach to people living with hepatitis B who have not had prior involvement in this effort, and advocacy training and opportunities. With knowledge can come action – let’s build a strong communication network to spread the word and B the Change to create a world that is Hep B-free! Become a hep B advocate today by joining our Action Center. 

The 300 Million Reasons movement will continue to grow and expand over the coming months and years, as more materials and resources are developed and disseminated. We hope you will continue to stay tuned on our website for updates and that you will join us in taking steps toward shining a light upon, and eventually eliminating, hepatitis B! Join the movement today!

HBV

Pharmacies and Hepatitis B

Yesterday was National Pharmacy Day! Every year, January 12th honors pharmacists and their role in healthcare. While we do not typically think of pharmacists as traditional healthcare practitioners, they play a highly important role in patients’ lives.

Pharmacies and Hepatitis B

Pharmacies have a direct impact on our health. Pharmacists interact with patients and medical professionals on a daily basis to provide important drug management services and play an important role in vaccination uptake. Community pharmacies are ubiquitous in urban and suburban areas which increases individuals’ access to vaccination services. Unlike traditional primary care settings, community pharmacies do not require appointments for vaccinations which increases someone’s likelihood of receiving a vaccine.1 Not only are they more accessible, but also cost-effective. One study found that of the 6 million vaccines administered at one national pharmacy chain, one third or around 1.98 million individuals received their vaccines outside of typical work hours, like the weekend, holidays, and evenings.1 This convenience allows for more prevention which reduces long-term future costs of treatment and management.

According to the American Pharmacist Association, the hepatitis B vaccine is available in less than 50% of community pharmacies.2 However, we can work to increase this number! Pharmacies can incorporate best practices and successful models to provide and administer multi-dose vaccines. An example strategy includes text message or email reminders for follow-up doses.2 Utilizing community pharmacies to increase hepatitis B vaccine uptake is essential to making progress toward hepatitis B elimination. Pharmacists have access to important patient information which allows them to identify patients for vaccine-preventable diseases like hepatitis B. Expanding hepatitis B care into non-traditional settings like pharmacies will allow for greater vaccination coverage. This week, let’s appreciate our pharmacies and pharmacists for what they do for our communities and encourage them to expand their immunization services.

References

  1. https://www.ajmc.com/view/essential-role-community-pharmacies-expanding-access-vaccines
  2. https://www.cdc.gov/pcd/issues/2020/20_0062.htm

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

 

HDV, Hepatitis Delta (HDV), News, Research

Eiger Presents Clinical Trial Results at The Liver Meeting Digital Experience™ 2020

By Beatrice Zovich

The 2020 meeting of the American Association for the Study of Liver Diseases (AASLD) in November offered the opportunity for scientists from industry and academia to present their findings from clinical trials, studying new medications for hepatitis B and D. Two such presentations were given by Eiger BioPharmaceuticals, Inc. who presented their findings about how well their medications peginterferon lambda and lonafarnib work, both independently and in combination, to treat hepatitis delta virus (HDV) and halt liver fibrosis. The results are promising and offer hope for those affected by HDV.

The two medicines under investigation in these studies work in different ways. Lonafarnib works by blocking farnesyl transferase, an enzyme involved in prenylation, the modification of proteins that is necessary for the life cycle of HDV. Peginterferon lambda, on the other hand, triggers immune responses that are crucial for host protection during viral infections. Lambda can also target liver cells accurately, thus reducing the effects of inadvertently targeting central nervous system cells and making it more tolerable to those taking it (Eiger, 2020).

Eiger’s first study examined how well peginterferon lambda and lonafarnib (known as LIFT – Lambda InterFeron combo Therapy) work together to lower levels of HDV RNA, 24 weeks post-treatment (Eiger, 2020). This was a Phase 2 study. Lambda was administered at a dosage of 180 mcg once weekly, in combination with 50 mg of Lonafarnib and 100 mg of ritonavir given twice daily, for 24 weeks. The results of this study found that 77% of the 26 participants saw their HDV RNA levels decline and reach a level that was either undetectable or below the level of quantification. 23% of these participants were able to maintain these levels for 24 weeks after treatment had ended. Both tenofovir and entecavir were started prior to treatment for management of HBV. The observed side effects of this regimen were mild to moderate and included mostly gastrointestinal issues or were related to blood chemistry (Eiger, 2020).

The second study found that peginterferon lambda caused the regression of liver fibrosis after 48 weeks of treatment in people living with hepatitis delta. Two case studies emerged from the completed Phase 2 LIMT (Lambda Interferon MonoTherapy) study (Eiger, 2020). In these studies, a total of 33 participants received either 180 µg or 120 µg of lambda subcutaneous injections weekly for 48 weeks. Results indicated that degrees of liver fibrosis and levels of HDV RNA declined below the level of quantification in some participants, even after 72 weeks in a handful of cases. In some instances, ALT levels decreased as well. Side effects were found to be mild to moderate and fewer than those experienced by participants who had taken peginterferon alpha in the past. Side effects were primarily flu-like in nature (Eiger, 2020). 

Therapies for hepatitis B and D will only continue to improve and become more precise and targeted as time goes by. Check out the Hepatitis Delta Connect website for detailed information on HDV, as well as current clinical trials and a drug watch page, both of which are updated regularly. (A brand-new clinical trial has just been added!) For more information about Eiger BioPharmaceuticals, click here. 

References

Eiger BioPharmaceuticals, Inc. (2020, November 17). Eiger Announces Positive Peginterferon Lambda – Lonafarnib Combination End of Study Results from Phase 2 LIFT HDV Study in Late-Breaker Session at The Liver Meeting Digital Experience™ 2020. Retrieved December 30, 2020, from https://www.biospace.com/article/releases/eiger-announces-positive-peginterferon-lambda-lonafarnib-combination-end-of-study-results-from-phase-2-lift-hdv-study-in-late-breaker-session-at-the-liver-meeting-digital-experience-2020/

Eiger BioPharmaceuticals, I. (2020, November 16). Eiger Announces Case Studies Demonstrating Regression of Liver Fibrosis Following 48 Weeks of Therapy with Peginterferon Lambda in Patients with Chronic Hepatitis Delta Virus (HDV) Infection Presented at The Liver Meeting Digital Experience™ 2020. Retrieved December 30, 2020, from https://www.prnewswire.com/news-releases/eiger-announces-case-studies-demonstrating-regression-of-liver-fibrosis-following-48-weeks-of-therapy-with-peginterferon-lambda-in-patients-with-chronic-hepatitis-delta-virus-hdv-infection-presented-at-the-liver-meeting-digital–301173992.html 

HBV, Living with Hepatitis B

New Year’s Resolutions and Hepatitis B

 

2020 was a difficult year for most of us. The coronavirus pandemic challenged us professionally, personally and could have led to financial hardship or strained relationships. 2021 ushers in a new year of resilience and resolutions. 

If you are living with chronic hepatitis B, you may feel as though you are not in control of your health, but that’s not true! Small changes to your daily life can go a long way towards improving your liver health and may even prevent liver damage from occurring. Here are four New Year’s resolutions to help you start 2021 off right!

Kick Your Old Habits to the Curb: Did you know that not only does smoking hurt your lungs, it also negatively impacts your liver? Old habits can be hard to break, but staying healthy is important. Smoking cessation can be hard! Instead of going cold turkey, maybe reduce your cigarette intake from smoking every day to every other day and work your way up to complete cessation. Did you know that insurance plans in the United States must cover smoking cessation programs through preventive care under the Affordable Care Act? This means that copayments and coinsurance can’t be applied to these programs. Taking the first step is better for your liver and your wallet!

Cook More: As you decrease your smoking intake, increase your cooking habits! Cooking can be a lot of work, but it can also be fun. Regularly eating fast-food and highly processed meals are bad for your liver and can leave you feeling lethargic, so try switching things up. Consider signing up for a virtual cooking class with your friends or family to learn some new tricks in the kitchen. You don’t have to make every meal from scratch; start by making one or two fresh meals a week and increase them as you feel more confident. Don’t know where to start? Try one of these recipes – desserts included!  There is no standard diet for chronic hepatitis B patients, but the American Cancer Society’s low fat, low cholesterol, and high fiber meal ideas are a good, general diet to follow.

Take Some Time For Yourself: Stress is bad for every part of your body – including the liver – so it is important to take some time for yourself. Set a few hours aside each week to do an activity that you enjoy. You can take up journaling, practice mindfulness, or go on a quick walk to help relieve stress – whatever relaxing activity feels right for you. If you have the resources, you may want to consider planning a vacation or taking a small weekend trip. Even if you can’t get away, set a goal to spend more time outdoors. Green spaces, such as an urban park or a forest, have been known to lower stress levels and can help manage weight, which is an important part of maintaining liver health.

Get Active: Exercising more might be one of the most common New Year’s resolutions, but it is also one of the most important ones! If you’re tired of going to the gym or bored with your old routine, try your hand at an exercise you hadn’t considered before. Yoga, pilates, running, and kickboxing are just a few examples of fun workouts that you can add to your exercise catalog and can be done outside of a typical gym setting. If you’re looking for affordable exercise options, be sure to check out some of the free exercise videos you can find on YouTube. You can also try hiking at your local park or joining a local community center!

New Year’s resolutions can be difficult to keep, especially if you are trying to do them all at once. The important part is to begin! If you are having trouble meeting your goals, pick one to start with and add another goal once it becomes a part of your routine.

 

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

HBV, Living with Hepatitis B

Hepatitis B in Asian Populations

In the United States, an estimated 2.2 million people are living with chronic hepatitis B infection and most do not know they have it. Without diagnosis and treatment, 1 in 4 persons will develop cirrhosis or liver cancer. Hepatitis B is associated with significant health disparities, disproportionately impacting Asian American, Pacific Islander, and African immigrant communities. Asian Americans and Pacific Islanders make up 50% of the hepatitis B infection burden in the United States and have liver cancer rates that are up to 13 times higher than Caucasian populations despite making up 6% of the United States’ population.

Why are People of Asian Descent Disproportionately Affected?

 First-generation Asians from China, Korea, Vietnam, and those from the Pacific Islands are particularly highly impacted by hepatitis B due to the history of the virus (the virus has been circulating in certain areas of the world for thousands of years), as well as historically low infant immunization rates against the disease in many countries. Most Asians and Pacific Islanders who have hepatitis B were infected during childbirth from their mothers who were infected – that is why it is common to see multiple members of the same family affected by hepatitis B.

The great news is that the birth dose of the hepatitis B vaccine has been increasing in uptake in Asian countries. The Centers for Disease Control and Prevention (CDC) reported in the South East Asian Region that the hepatitis B vaccine birth dose and third dose coverage increased from 34% to 54% and from 89% to 91%, respectively. In 2019, nine of 11 countries in the region achieved ≥90% of the hepatitis B vaccine third dose coverage nationally, and three of eight countries that provide the hepatitis B birth-dose achieved ≥90% coverage.1 This great news comes with the World Health Organization announcing cases of hepatitis B in children under age five had dropped below 1% in 2019 which can be attributed to the increased uptake in vaccinations.2

Are You at Risk for Hepatitis B?

If you are interested in knowing if you are at risk for hepatitis B, this half-page questionnaire is a quick and easy assessment to determine if you should be tested for hepatitis B. The assessment is available in English, Chinese, Vietnamese, Korean, Burmese, Hmong, Khmer, and Lao. Download the risk assessment here.

For more information about the Know Hepatitis B Campaign, visit the campaign website.

References

  1. The Centers for Disease Control and Prevention
  2. The World Health Organization

 

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

advocacy, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Hepatitis B Prevention, Hepatitis B Research, Research, United States

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!

About Hepatitis B, Hepatitis B Advocacy

Humans Rights and Hepatitis B

Tomorrow, December 10th is Human Rights Day! Every December, this day “proclaims the inalienable rights which everyone is entitled to as a human being – regardless of race, colour, religion, sex, language, political or other opinion, national or social origin, property, birth or other status1” This year’s theme is: Recover Better- Stand up for Human Rights as it relates to the impacts of the COVID-19 pandemic. This day will emphasize the importance of human rights in recovery efforts to “create equal opportunities for all, address the failures exposed and exploited by COVID-19, and apply human rights standards to tackle entrenched, systematic, and intergenerational inequalities, exclusion and discrimination1”.

Impact of COVID-19, Hepatitis B, and Human Rights

The World Health Organization (WHO) states that people living with underlying health conditions such as hepatitis B can put them at a greater risk for a poorer COVID-19 prognosis2. COVID-19 has paused many organizations’ outreach and work which disproportionately affects already marginalized populations. Additionally, in the United States, COVID has raised unemployment rates to an estimated 25%3. Organizations are unable to provide viral hepatitis programs which can negatively affect people living with hepatitis B, like knowing their status, linkage to care, and management of their disease. Additionally, if people are experiencing unemployment and living with hepatitis B, their healthcare costs could significantly increase. This might make it difficult for people living with hepatitis B to effectively manage their disease. These situations directly violate the fundamental human right to healthcare – people should have access to healthcare services without financial hardship. With COVID-19 impacting organizations like the Hepatitis B Foundation, what are we doing to address these situations?

 How Are We Addressing Inequalities?

 The Hepatitis B Foundation is committed to human rights and the rights of people living with hepatitis B prior to COVID-19, during COVID-19, and will continue to do so after. The Foundation has advocated for persons living with hepatitis B and experiencing discrimination. We are proud to have had a part in a landmark settlement by the U.S. Department of Justice in 2013, which ruled that a medical school had violated the Americans with Disabilities Act (ADA) when they denied applicants because they had hepatitis B. Take a look at our Know Your Rights Section if you are experiencing discrimination while living with hepatitis B. The Hepatitis B Foundation also launched a new tool to assist people living with hepatitis B in making decisions on health insurance. The report provides health insurance shoppers living with hepatitis B with key information – including a checklist of questions to consider and a list of insurance companies in the analyzed states that exhibited discriminatory practices. Health insurance shoppers can take a closer look at the specific pricing tiers into which companies and plans place their hepatitis B treatments, and what additional costs may be included.

Currently, Hep B United Philadelphia, a coalition member of Hep B United, a national coalition founded under the Hepatitis B Foundation, is committed to serving the Greater Philadelphia Community during the pandemic. Hep B United Philadelphia rolled out a “contactless screening” program which allows individuals to get free hepatitis B testing. They have also hosted hepatitis B educational sessions over Zoom in multiple languages. Recordings and resources are available for use here.

 

References

  1. The United Nations
  2. The World Health Organization
  3. The Pew Research Trust

 

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

About Hepatitis B, Liver, Liver Health, Living with Hepatitis B

Holidays and Hepatitis B: Treat Your Liver Right

 

 

The holiday season is here! November and December are full with holidays like Diwali, Canadian Thanksgiving, American Thanksgiving, Hanukkah, Kwanzaa, Christmas, and the New Year just to name a few. This time is often filled with love, happiness, and delicious food. If you or a family member is living with hepatitis B, it is important to eat mindfully during this festive time. Eating healthy is not always a possible option – not with delicious smells filling your kitchen, but you can make healthier choices! Here is a list of action items you can do to help maintain a healthy liver during the holidays:

  1. You can contribute a healthy dish – something filled with lean meats, hearty vegetables,  and is low in sodium.
  2. Try your best to avoid alcohol and go for drinks with lower amounts of added sugar.
    • Coffee has been associated with improvement in liver enzymes!
    • You can bring your own non-alcoholic beverage like a sparkling flavored drink.
  3. Choose fiber-rich foods like beets, Brussels sprouts, broccoli, and beans – your plate should look colorful!
    • Click on the veggies for some delicious and healthy recipes!
  4. Stay active – take a walk with your family/someone in your COVID social circle or do a free online exercise video.

Most importantly, do not feel guilty. Try your best to make healthy choices and not over-indulge, but do not beat yourself up if you do – your next meal can be healthier!

Remember that everything you consume is filtered through your liver; your liver never gets a break! The lifestyle tips listed above may seem simple, but they can have a large, positive impact on your health. Sticking to a regular healthy routine even during the holiday season will make it easier to continue those habits all year long! You can also check out our healthy liver tips to see what other actions can be taken to protect your liver.

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

Research, United States

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!

 

Baruch S. Blumberg Institute