Hep B Blog

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!

 

Adoption and Hepatitis B

 

November is National Adoption Month! National Adoption Month’s ultimate goal is to increase national awareness of the need for permanent families for children and youth in the U.S. foster care system. Most importantly, this month acknowledges the birth families who make the difficult decision to give up their children for adoption, the foster families who care for children from various backgrounds, and the adoptive families who love and care for their adoptive children.

Adoption and Hepatitis B

 Many people wish to adopt children from countries where hepatitis B infections are common: Asia, South America, Eastern Europe, and some parts of Africa. Children from these regions are often infected with the virus from their birth mothers who have hepatitis B and unknowingly pass the disease on to their children during delivery. In addition, many of these countries re-use needles for medications or blood tests, a practice that places children at risk if they have not already been infected at birth. It is advised that you do not request your child to be tested for hepatitis B in their birth country, since the blood test itself could be a source of infection.

Domestic adoptions also present some risk to potential adoptees. Children born to women in high-risk groups could have been infected with hepatitis B at birth. In addition, children from group homes are at increased risk for hepatitis B infection.

Many children who have hepatitis B do not have symptoms of the viral infection. This makes it difficult for adoptive parents to know their child is sick without a blood test! This simple 3-part blood panel will inform you if your child has an active infection, had a previous infection and recovered, has “immunity”, or needs a vaccine. The good news is that your adoption agency should be able to tell you if a child has been tested for hepatitis B. If you have questions or concerns about the test results please contact us to speak with our knowledgeable staff. We can also refer you to a parent who has adopted a child with hepatitis B.

Finding out that the child you wish to adopt has chronic hepatitis B can be upsetting, but should not be cause for alarm or stopping an adoption. We hope that a hepatitis B diagnosis will not change your decision to adopt a child. You can be reassured that most children with hepatitis B will enjoy a long and healthy life. Hepatitis B does not usually affect a child’s normal growth and development, and there are generally no physical disabilities or restrictions associated with this diagnosis.

Reference

https://www.hepb.org/treatment-and-management/children-with-hepatitis-b/adoption/

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

Hepatitis B and Stigma

 

Hepatitis B and Stigma

World Kindness Day is just around the corner on November 13th. On World Kindness Day, we celebrate kindness and spread it around the world. Let’s celebrate this day by treating people living with hepatitis B with kindness, compassion, and respect.

Unfortunately, hepatitis B is often highly stigmatized – and the people living with it can feel ostracized. Why is there so much stigma surrounding hepatitis B? A study found that among Asians, the majority thought hepatitis B was a genetic disease which is why the family might feel stigmatized if a family member is living with it.1 Due to cultural values, interdependence, collectivism, and family centeredness, persons of Asian descent might think that having hepatitis B is a reflection on the family.1 This attitude could lead to people not wanting to get tested for hepatitis B because they worry about bringing stigma to the family.1 Another study found that among African communities, individuals were confused about the differences between hepatitis B, HIV, malaria, and other infectious diseases.2 This misattribution and confusion could lead to a person living with hepatitis B being perceived as an outsider to society and can cause stigma or discrimination.2

The studies demonstrate that the lack of education and information surrounding hepatitis B contributes to the stigma that individuals living with hepatitis B face. There is a lot of ignorance, myths, and misconceptions about hepatitis B. Let’s debunk some of these notions!

Hepatitis B cannot be spread through casual contact, only through blood-to-blood contact or sexual transmission. This means you can hug, kiss, and share a meal with your friends and family without worrying about contracting hepatitis B. In Asian communities, it is especially important to emphasize that family members living with an individual who has hepatitis B, can share meals with each other. And there is a safe and effective vaccine to protect loved ones – so transmission can be prevented!

Sometimes people do not want to discuss their hepatitis B status because of its association with intravenous drug use. People who inject drugs experience more discrimination because of the stigma surrounding addiction. On the flip side, individuals who do not inject drugs but are living with hepatitis B, might not want to discuss their status for fear that other people will stigmatize or label them as drug users. Additionally, people might assume individuals living with hepatitis B engage in risky sexual behavior which can further stigmatize them. This stigmatization only harms people living with hepatitis B because they cannot talk about their status openly, which would help destigmatize the disease.

Even extending past World Kindness Day, we encourage you to be kind to people living with hepatitis B. And if you are living with hepatitis B, please be kind to yourself! Continue to educate yourselves on hepatitis B to help lessen the stigma and discrimination surrounding it.

Below is a brief list of resources for people living with hepatitis B or individuals living with people living with hepatitis B.

  1. Transmission of hepatitis B – how hepatitis B can be transmitted
  2. Online Support Groups
  3. Factsheet – When Someone in the Family has Hepatitis B
  4. Know Your Rights – for anyone experiencing discrimination because of their hepatitis B status

References

  1. Kim, M. J., Lee, H., Kiang, P., Watanabe, P., Torres, M. I., Halon, P., Shi, L., & Church, D. R. (2015). Debunking the myth: low knowledge levels of HBV infection among Asian American college students. Asia-Pacific journal of oncology nursing, 2(1), 8–16. https://doi.org/10.4103/2347-5625.152399
  2. Mokaya, J., McNaughton, A. L., Burbridge, L., Maponga, T., O’Hara, G., Andersson, M., Seeley, J., & Matthews, P. C. (2018). A blind spot? Confronting the stigma of hepatitis B virus (HBV) infection – A systematic review. Wellcome open research, 3, 29. https://doi.org/10.12688/wellcomeopenres.14273.2

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

National Family Caregivers Month and Hepatitis B

November is National Family Caregivers Month! There are over 40 million Americans who are unpaid caregivers to their families, friends, and neighbors1. This month we celebrate and support all the caregivers who work tirelessly to keep our family and communities strong.

Caregivers and Hepatitis B

 Caregiving can be a tough, but noble job. It is often unpaid, long hours, and can cause burnout. However, caregivers selflessly work to provide their friends or family with the best care possible. Hepatitis B just does not affect the person living with the virus; it affects their family, friends, coworkers, and community members. Someone who lives with an individual who has hepatitis B might be put in a caregiver position.

Caring for an individual living with hepatitis B might be difficult if the person has advanced liver disease or is experiencing side effects from medication. While it may not always be physically demanding, caring for a person with hepatitis B can be emotionally overwhelming. Caring for an individual living with hepatitis B and other related complications can stir up heavy emotions which can take a toll on a caregiver’s mental health. Managing medications, diet, and healthy lifestyle for people living with hepatitis B during the COVID-19 pandemic can especially feel stressful. Luckily, there are resources available to help reduce feelings of stress and being overwhelmed.

Resources for Caregivers

Feeling stressed or overwhelmed with taking care of your friend or family member? It is also important to look after your own physical and mental health. Check out these resources from the How Right Now Initiative to help you manage your stress especially during COVID-19. Some suggestions include:

  1. Go for a quick walk or stretch
  2. Call, text, or video chat with friends or family
  3. Take several deep breaths

Does someone in your close circle have hepatitis B? Check out the Centers For Disease Control and Prevention’s Know Hepatitis B Campaign’s fact sheet, When Someone in the Family has Hepatitis B”. This fact sheet has basic information about hepatitis B and the importance of testing and vaccinating family members. The fact sheet is available in 13 Asian and African languages as well as three English versions focused on Asian American, Native Hawaiian and Pacific Islander, and African Immigrant communities. Download the fact sheet here.

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

References

  1. https://www.whitehouse.gov/presidential-actions/proclamation-national-family-caregivers-month-2020/
  2. How Right Now Initiative
  3. CDC’s Know Hepatitis B Campaign

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org