Celebrating AAPI Heritage Month with Joan Block, Co-Founder of the Hepatitis B Foundation
The Hepatitis B Foundation is a national 501(c)(3) non-profit organization dedicated to finding a cure and improving the lives of those affected by hepatitis B worldwide through research, education, public health and patient advocacy.
Joan is a nationally recognized leader in hepatitis B outreach, education and patient advocacy. She and her husband, Dr. Timothy Block, started the Hepatitis B Foundation when Joan was diagnosed with chronic hepatitis B.
Today, 30 years later, the Foundation has grown from a local effort in Bucks County, Pennsylvania, into an international organization. The Hepatitis B Foundation is recognized as the nation’s leading nonprofit research and disease advocacy organization solely dedicated to finding a cure for hepatitis B and improving the lives of those affected worldwide.
In 2017, Joan retired as founding Executive Director and is now volunteering as a registered nurse at a local free clinic.
And before I bring Joan on the show, I want to share that I’m recording this on National Nurses Day, May 6. And in addition to celebrating the fact that Joan is a nurse, she is also an Asian American having been born in Korea. We wrote about Joan in our blog, 31 People to Celebrate During Asian American Pacific Islander (AAPI) Heritage Month and I hope our listeners will check that out on our website as well.
I am honored to be speaking with you, a lifelong nurse, on this day that recognizes and celebrates the courageous nurses who work tirelessly to support and nurture the wellbeing of all individuals. I want to take a moment to recognize and thank you, all nurses and health care professionals.
Please tell our listeners how the Hepatitis B Foundation was created.
Well, thanks, Gina, for inviting me on. I’m quite honored and flattered. As you said in the introduction, 31 years ago, I was diagnosed with hepatitis B. I was working as a nurse at a local hospital, and it was just a routine employee physical. I was changing jobs and the employee health doctor to be very smart and noticed that I had some abnormal blood tests. She put together the facts that I had been adopted from Korea with my abnormal blood tests and thought I should get tested for hepatitis B. That’s how I found out I had hepatitis B. At that point, it was in the late 80s when hepatitis B was treated like HIV. As a nurse, we used to gown up with gowns, gloves, masks, eyeglasses, and go into the isolation rooms and take care of hepatitis B patients, just like the HIV patients.
When I was told I had hepatitis B, I really thought that was it, that I was going to be dead in a couple of years. It was devastating. To top that off, I was suspended from my job because the hospital didn’t have any policies on what to do with hepatitis B-infected healthcare workers. My child was kicked out of daycare. Those were six months of real horror, and I eventually did get my job back. My child was invited back to the daycare and at that point it was really my husband who felt like he had to do something about it. He’s a research scientist, a virologist, and he changed the direction of his research, and engaged our friends, Paul and Jan Witte from New Hope, Pennsylvania to get involved. They were the ones who said, let’s start a foundation so that no one must go through this again. At that time, there was no non-profit. There was nowhere for me to turn. There was no Google, there was no internet.
You were looking at medical books and it looked grim. Thirty years later, we have grown literally from the kitchen table to an internationally recognized organization with a huge impact on addressing the problem of hepatitis B. We also have created a research arm with about 50 scientists looking for a cure for this deadly liver disease.
Gina Rubel: Joan, it almost brings tears to my eyes. I’ve known you a long time and for our listeners, Joan and I worked together. Furia Rubel handled communications for the hepatitis B foundation early on. Today is the first time I’ve heard you share how you found out that you had hepatitis B. It says a lot about who you are, because you didn’t tell anyone when you ran the Hepatitis B Foundation, because you wanted it to be about the foundation, and I commend that. I think it says so much about who you are, and I have to say, knowing Dr. Timothy Block, he’s brilliant. When we talk about the hepatitis B foundation, we’re talking about people who have helped find the cure for hepatitis C and, and working towards a cure for hepatitis B.
Why is Hepatitis Awareness Month especially important and raising awareness about hepatitis?
For decades, hepatitis B has been the stepchild of infectious diseases. In the 80s, hepatitis B was just coming into its own. The World Health Organization had recognized it as one of the top 10 diseases to eliminate. Then, AIDs/HIV came along and washed hep B off the stage. We’re not competing, but that was the reality. And then in the 90s, hepatitis C came along and again, took the limelight. It was the Centers for Disease Control and Prevention that we had been lobbying basically for a Hepatitis Awareness Month, and they designated May as Hepatitis Awareness Month, partly because it’s also May AAPI Heritage month, Asian American and Pacific Islanders Heritage Month, and there was a really nice complementarity about the two issues.
Having the CDC declare a month National Hepatitis Awareness Month, granted it was for hepatitis B and C, but it was the first time that hepatitis B even had any kind of national visibility, and the fact that it coincided with national AAPI heritage month was a good thing because hepatitis B and its most severe consequences, liver cancer, is a health condition that disproportionately affects the AAPI community. In fact, hepatitis B and liver cancer are the leading cause of death in the AAPI community, and it represents the greatest health disparity between the Asian American community and the white community. It really was a natural way to build on the visibility of each issue.
To be clear, it’s not just that hepatitis B disproportionately affects Asian-Americans, it affects Asians globally, correct?
Gina Rubel: It’s important to know and tie the two together with a AAPI Heritage Month. You’re a lifelong nurse and today (the day of the recording) is National Nurses Day. Thank you for doing what you do, worrying about and supporting tirelessly the wellbeing of all other individuals. I want to publicly thank our listeners for any one of you who is a nurse or a healthcare professional or lives with or has family members who have been out there on the front lines literally non-stop since January of 2020. I appreciate you and Joan, and I know you’re out there giving vaccines and volunteering.
Joan Block: Thank you. I’m glad you recognize that today’s National Nurses Day, and I have to say it’s a career that I’m proud of. It’s something that gives you tremendous flexibility. I’m not here to advocate nursing, but for those of you who do know nurses or counsel young people, it is a fabulous career. You can do anything. I’ve done everything from hospital nursing to teaching nurses to doing public health, and now the cycle is complete. I’m back to clinical nursing, and like you said, I’ve been working in a free clinic, helping the uninsured under insured and also volunteering to give to the COVID vaccine. I have to say, I was not at the front lines during the locked last year. As a volunteer, we weren’t allowed to go out and help. Now that I’ve been vaccinated, we’re allowed to go out.
Gina Rubel: And you’re out there and to be giving the vaccine to people who might otherwise not be able to get it makes such a difference, and I’m thrilled that fortunately, I am vaccinated. And fortunately, the person who delivered the vaccine was very gentle. I’m not a fan of needles, but I was honored to be able to get it, nonetheless. I think we’re all lucky.
With the hepatitis C now curable, I understand that there is a growing national and international need for increased focus on finding a cure for Hep B, which was discovered more than 50 years ago. Despite the availability of an effective hepatitis B vaccine, how many people die each year worldwide from hepatitis B?
Currently, there at least 300 million people chronically infected with hepatitis B. Of that number, almost a million die each year from liver failure or liver cancer, and liver cancer is the second deadliest cancer in the world. You can see the impact that a hepatitis B infection has on the mortality of people. In the U.S. for the past seven years, according to the National Cancer Institute, liver cancer is also the second deadliest cancer here in the United States among Americans, of which, as I said, 50 to 60% are of Asian descent, but 40 to 50% are not of Asian descent. It is a huge problem.
Scientists never thought that they could cure hepatitis C and once it was cured around 2013, they realized, well, hepatitis B could maybe be cured and there has been increasing momentum in terms of federal funding. The Hepatitis B Foundation has a very robust advocacy program in Washington, where we are educating our elected officials about the need to invest in research, to find a cure at the NIH, and then also to invest in the public health infrastructure. We all now know what an epidemiologist is.
The pandemic really revealed how much we need to do in investing in the public health infrastructure, and that’s going to ultimately help for hepatitis B outreach to increase screening and testing, vaccination and linkage to care. The fact that hepatitis C was cure curable really has stimulated the research community to pursue that much more aggressively. The government is starting to step up. They could do more, but we are grateful that it is increasing.
Gina Rubel: This wasn’t the purpose of this podcast, but I’m going to say it anyway. The Hepatitis B Foundation just celebrated its 30th anniversary last weekend with its virtual gala. I’ve been to many of the galas over the years, and I want to share that now is a time more than ever that if you are inclined to donate, go to hepb.org and consider making a donation so that we can eradicate this disease worldwide. It is something we can do, and if all of us even just gave a dollar, we’d make a difference. While this podcast is not about fundraising, I do want to throw that out there because it’s your 30th anniversary, Joan, I’ve had the privilege of working with you for about 15 of those years, which is amazing to me. I remember when you were a small local organization with a little international impact, and now you’re a global organization with a giant impact. I do truly pray that in our lifetimes that you get that cure and that happens because I know that’s what you’ve dedicated your life to and what Dr. Block has dedicated his life to, as well as many others.
Joan Block: Thank you, Gina.
What are the trends in healthcare that directly impact the work at the Hepatitis B Foundation?
One of the things that has been occurring is with the opioid crisis, which got eclipsed by the pandemic, but before COVID hit the U.S. Government, both the NIH and the CDC were focusing on the opioid epidemic, and that was directly impacting hepatitis B infection rates. We suddenly saw a huge spike in new hepatitis B infections, which also raised the visibility of the disease. A lot of that was occurring in the communities that direct inject drugs, and although the Hepatitis B Foundation doesn’t work in that community per se, it certainly raised the visibility of the problem. We were able to work with national, state and local health departments to make the case that hepatitis B needs to be included in their overall hepatitis elimination plans, which were primarily focused on hepatitis C, but with the opioid crisis, we were able to persuade them of the need to hepatitis B as well. That was the lemonade out of the lemons created by the opioid crisis.
Gina Rubel: Well, I’m pretty sure that you all have been making lemonade out of lemons for 30 years. May 19th is designated as hepatitis testing day, and we’re going to release this episode during that week.
Why is annual testing important and how can people access testing information?
National Hepatitis Testing Day, again originated with advocacy groups like us and other Hep C organizations, and the CDC responded by designating that. For the first several years, we used to go to Capitol Hill and members of Congress would line up to get tested to just show the public the importance of testing. For the best resource you can always go to HepB.org. You can also go to cdc.gov/hepatitis, and both websites will include activities that are occurring. The CDC can also direct you to where testing sites are occurring. It usually is community-based testing. It elevates the importance of getting tested because most people who have hepatitis B don’t know it because it is a silent liver infection. If you get tested and you test positive, there are very good treatments to control the disease and prevent liver cancer. It’s important for people to know that one out of four people who are infected with hepatitis B go on to develop liver cancer, and liver cancer, as I said, is a second deadliest cancer. People will die in their fifties, sixties in the prime of their life. Testing, vaccination, care, and treatment are very important.
Gina Rubel: Well, I hope people listening will take the time to look for all these resources, and we’ll be sure to add resources on our website in the transcript of the podcast. I’m going to turn the conversation around a little bit. I want to talk a little bit about you personally, Joan, because another thing I learned about you, and you shared it in the beginning of the podcast, is that you were adopted. You’re Korean American and you were adopted through the Welcome House, which was run by the Pearl S. Buck Foundation. Something you and I, have in common is love for Pearl S. Buck International, as I’ve worked with them for many years as an advocate, volunteer, and sponsor of children in the Philippines.
Being a Korean-American and it is AAPI Heritage month, I wanted to ask you a little bit about your experience as an Asian American and how we, members of other non-diverse communities, particularly me as a white woman, can support you? What do we need to know? How do we stop Asian hate? What can we do to make living here in the U.S. better?
Big, big question. I’m going to start with the easiest first. Being adopted through the Welcome House at the Pearl S. Buck Foundation, which is now Pearl S. Buck International, too many people don’t realize that Pearl Buck was a pioneer in anti-racism, and one of her greatest legacies is that she created the Welcome House adoption agency to bring biracial Asian children to the United States because biracial children, after the Korean War, were considered the lowest of the lowest, and they were left to just languish on the streets. I’m a full Korean, so I wasn’t biracial, but I was abandoned by my birth mother. I was fortunately adopted by a wonderful Lancaster County Mennonite family, which is kind of seems strange. I would really encourage people to look up Pearl S. Buck, because she is the quintessential champion for Asian American and Pacific Islanders, really recognizing their value and then acting on it by creating this adoption agency to bring all of us here.
Having grown up in a white Mennonite family in Lancaster County, Pennsylvania, I knew I was different all the time. It wasn’t until I graduated from college and moved to Philadelphia that I realized there were a lot of people like me. I loved being in Philadelphia, immersing myself. Philadelphia isn’t the biggest Asian community. I should have moved to San Francisco where I would have been in the 35%, but even moving to Philadelphia with a Chinatown and just seeing a lot of Asians like myself helped me feel much prouder of who I am. If you fast forward to where I am now at 62, it’s interesting. I never considered myself Korean American growing up because I was struggling always as an Asian in a white world. Now, I feel pride in it.
AAPI Heritage Month shines a spotlight on the contributions of Asians in American society, in the world. As far as how to help non-Asian people, I’m not sure I’m the very best person, but the fact that you are highlighting women like myself or people like myself on your podcast is an important step of recognizing the Asian experience. This whole #StopAsianHate initiative, I have to admit, I have not experienced any discrimination or any fear here in Bucks County, but I certainly have friends who live in San Francisco and New York who have experienced it. Fortunately, no direct attacks, but they’re fearful, and that’s what’s really most distressing. Not only were we locked down in pandemic for the past year, now folks, particularly older folks, in their sixties and older, are suddenly afraid to go out because they don’t know if some random person is going to punch them, stab them, shoot them.
This is a wakeup call for the Asian community. I love seeing that AAPI organizations are no longer taking it. They’re mobilizing. They’re speaking up. They’re working in their communities to protect particularly the older people who want to get out. If nothing else, this is a terrible way to activate a community, but it is, again, the lemonade out of lemons. You see a lot more pride. You see a lot more activism. For the Hepatitis B Foundation, that’s good for us too, because hepatitis B disproportionately affects the Asian communities, and if they’re learning to activate, mobilize, react proactively, that’s going to help us in our efforts to increase outreach, testing, vaccination.
What one book most influenced you?
I have had so many books and then I’ve had so many new books that I’ve been reading. Okay, if you had asked me last year from childhood, “A Tree Grows in Brooklyn” was my absolute favorite book.
Gina Rubel: Mine, too.
Joan Block: I just reread it during the pandemic because I was thinking, what would I think about it now, 50 years later? I still love the book. It has universal themes. More recently, I have been reading this Korean author, Chang-rae Lee, and diving into the Asian-American experience from both an immigrant perspective, and also for those who’ve been born and raised in the U.S., and again, it fits into the whole social justice, the whole anti-racism. All those themes are coming together.
Gina Rubel: Happy National Nurses Day. Thank you for being a caregiver and one that cares for people globally. Thank you, listeners, and we look forward to hearing your comments and feedback and have a fantastic day.
PRIOR TO THE RECORDING
What are you most proud of?
In preparation for the podcast, we asked Joan: What achievements are you most proud of? Here is what she shared.
1. The Hepatitis B Foundation was started to help one family 30 years ago, and today we are literally helping millions of families.
2. We started with a local presence but have grown to have an enormous global impact.
3. We are leading the science with major new advances in cure research.
4. We are successfully advocating to increase federal funding for hepatitis B for the National Institutes of Health and Centers for Disease Control and Prevention (CDC).
5. We have helped reduce stigma and discrimination around hepatitis B by successfully working to have it become a protected condition under the Americans with Disabilities Act (ADA law).
Connect & Learn More
Email Joan at email@example.com
Check out the foundation’s website at www.hepb.org
Follow the Hepatitis B Foundation on Twitter at @HepBFoundation
Learn more about Gina Rubel
Order a copy of Everyday Public Relations for Lawyers
Connect on LinkedIn at www.linkedin.com/in/ginafuriarubel/
Follow on Twitter at @GinaRubel
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