Speaker 1: Hi, I'm erin Welsh and this is this podcast will
Speaker 1: kill you. As you may have already noticed, this is
Speaker 1: not your typical t p w k Y episode. For one,
Speaker 1: you didn't hear Aaron Alman Updike say and I'm Erin
Speaker 1: Alman Updyke. But don't worry. She'll still be there for
Speaker 1: all of our regular episodes, and you won't just be
Speaker 1: hearing me ramble on all by myself in this episode.
Speaker 1: I've got a friend joining me. So what exactly is
Speaker 1: going on? Well? This is a bonus episode, the first
Speaker 1: in what will be a mini series of bonus content
Speaker 1: over the next few months. If you've listened to the
Speaker 1: podcast before, you know that we love a deep, deep
Speaker 1: dive on a topic. After all, that's basically what our
Speaker 1: podcast does and why we started doing it. But you
Speaker 1: also know that we can't always make that dive ourselves. Instead,
Speaker 1: one of our favorite things to do is to get
Speaker 1: someone else, an expert, to help us explore those dimensions
Speaker 1: of a disease or a topic that we can't quite
Speaker 1: reach on our own. Many of our episodes have featured
Speaker 1: these expert interviews, and I always have so much fun
Speaker 1: talking with them about their research and I get sad
Speaker 1: when the interview is over because I feel like there's
Speaker 1: still so much to discuss, especially about the expert themselves,
Speaker 1: which brings me to the second aim of this bonus episode.
Speaker 1: For a long time on the podcast, we've talked about
Speaker 1: doing a career's episode where we discuss the unbelievable number
Speaker 1: of different and exciting things that you can do in
Speaker 1: public health. We get lots of emails and messages from
Speaker 1: listeners asking what an epidemiologist does on a day to
Speaker 1: day basis, or what the difference is between a Master's
Speaker 1: of science and masters of public health, And frankly, I
Speaker 1: feel like the world has maybe never been as interested
Speaker 1: in what actually goes on in the wide world of
Speaker 1: public health as they are these days. So we thought
Speaker 1: it would be so much fun to try to get
Speaker 1: a better sense of what this amorphous umbrella term of
Speaker 1: public health really means. We envisioned this episode as covering
Speaker 1: everything from how to choose a graduate program, disease ecology, epidemiology,
Speaker 1: public policy, etc. To all of the many diverse opportunities
Speaker 1: open to people who want to pursue a career in
Speaker 1: public health. Conservation biologist, infectious disease physician, biostatistician, entomologist, clinical
Speaker 1: trials researcher. But we pretty quickly realized that this couldn't
Speaker 1: possibly be done in just one episode or just one
Speaker 1: mini series. Even so, in these bonus episodes, I'm combining
Speaker 1: my love of an even deeper dive on a topic
Speaker 1: with my love of picking a public health expert's brain
Speaker 1: on what it is they do and how they got
Speaker 1: to be where they are. Graciously offering to be the
Speaker 1: first to have their brain picked is doctor Sherry Cohen,
Speaker 1: Senior Vice President of the Hepatitis Bee Foundation, which is
Speaker 1: a nonprofit institution that is dedicated to finding a cure
Speaker 1: for the virus and improving the lives of those already
Speaker 1: affected by the disease. Last week, Aaron and I covered
Speaker 1: the hepatitis B virus, and if you haven't listened to
Speaker 1: that episode yet, you definitely should because it'll give you
Speaker 1: a nice backdrop of knowledge about this virus and the
Speaker 1: disease that it causes to recap Hepatitis B is an
Speaker 1: extremely prevalent infection, with nearly three hundred million people around
Speaker 1: the world chronically infected. The hepatitis B virus, which is
Speaker 1: transmitted through blood and body fluids can cause an acute
Speaker 1: or a chronic infection, and it can progress to severe
Speaker 1: liver disease and liver cancer in some people. The good
Speaker 1: news is that we do have both a vaccine as
Speaker 1: well as anti viral treatment, but the bad news is that,
Speaker 1: despite having these tools to help prevent and control the infection,
Speaker 1: a million and a half people are newly infected every year.
Speaker 1: Part of that might be due to the lack of
Speaker 1: access to timely vaccination or treatment, but another big component
Speaker 1: to this is the stigma and discrimination faced by many
Speaker 1: people living with hepatitis B. As we discussed in our
Speaker 1: regular season episode, the hepatitis B virus carries with it
Speaker 1: a substantial amount of stigma and discrimination, which can take
Speaker 1: a large emotional and mental toll on someone who may
Speaker 1: already be explos speriencing physical health challenges from their infection.
Speaker 1: But unlike screening for antibodies or examining liver function numbers,
Speaker 1: the impact of stigma is much more difficult to measure.
Speaker 1: In this episode, I'll be asking doctor Cohen to fill
Speaker 1: us in on what that stigma looks like, what is
Speaker 1: being done about it, and what it's like to run
Speaker 1: a public health nonprofit. I had such a great time
Speaker 1: chatting with doctor Cohen and I learned so so much.
Speaker 1: I will let her introduce herself and get right to
Speaker 1: the brain picking right after this break.
Speaker 2: Hi, my name is doctor Sherry Cohen. I am senior
Speaker 2: vice president at the Chase B Foundation and we are
Speaker 2: located in Doylestown, Pennsylvania.
Speaker 1: Wonderful. Thank you so much for taking the time to
Speaker 1: chat with me today.
Speaker 2: Thank you. I'm really excited to be here.
Speaker 3: Well.
Speaker 1: I am also very excited, especially to learn more about
Speaker 1: stigma and discrimination in hepatitis B, because it's such an
Speaker 1: important topic, as you know, and it's one that we
Speaker 1: only touched briefly upon in our Hepatitis B episode. Over
Speaker 1: the past couple of decades, we have made some pretty
Speaker 1: substantial strides in reducing the global burden of hepatitis B
Speaker 1: through prevention and treatment, but we still have a long
Speaker 1: way to go, and there are several barriers that keep
Speaker 1: these preventative tools from working, such as a lack of
Speaker 1: timely access to vaccines or a lack of understanding about
Speaker 1: the viruses transmission. But can you talk about the ways
Speaker 1: that stigma can also contribute to the persistence of the
Speaker 1: hepatitis B virus.
Speaker 2: Absolutely, it's a great question, and stigma is a big
Speaker 2: problem and one that is unfortunately a major barrier to
Speaker 2: eliminating hepatitis BE around the world. What we have is
Speaker 2: a misunderstood disease, and so hepatitis B is so common
Speaker 2: that it chronic. Hepatitis B impacts three hundred million people.
Speaker 2: Yet every person that has it, I think feels isolated
Speaker 2: and alone because we don't talk about it. Because hepatitis
Speaker 2: B is kind of a condition of the shadows, and
Speaker 2: people are often afraid to talk about it, and they're
Speaker 2: afraid when they have it, and I think that lends
Speaker 2: itself to a situation where when people get hepatitis B,
Speaker 2: they tend to self isolate because they're afraid of others
Speaker 2: judging them. They're afraid that they may be discriminated against
Speaker 2: because they have it, and so they keep it to
Speaker 2: themselves and they kind of pull back a little bit
Speaker 2: from family and friends in society. And then you also
Speaker 2: have societal stigma where we might actually be promoting stigma
Speaker 2: in communities. And so it's unfortunately a major barrier, and
Speaker 2: I think some of it has to do with how
Speaker 2: hepatitis B is transmitted in that it is an infectious disease,
Speaker 2: and of course there's always stigma with infectious diseases, but
Speaker 2: I also think hepatitis B has been around for you know,
Speaker 2: hundreds or thousands of years, and what comes along with
Speaker 2: that is these sort of deep, ingrained beliefs that are
Speaker 2: passed down from generation to generation about hepatitis B, and
Speaker 2: that also, I think has lent itself to deep misperceptions
Speaker 2: about the virus and about how it's transmitted and about
Speaker 2: how it's treated, and it serves, unfortunately, to promote fear,
Speaker 2: which means that people don't want to get tested and
Speaker 2: don't want to tell anyone when they have it.
Speaker 1: Right, absolutely, Can you talk about some of what these
Speaker 1: common misperceptions are around the hepatitis B virus?
Speaker 2: Yes, absolutely, we hear. So. We've done quite a lot
Speaker 2: of research among communities that are highly impacted by hepatitis B,
Speaker 2: and worldwide that's frankly almost everyone, but in particular it's Asian, American,
Speaker 2: Pacific Islander and African communities. And what we often hear
Speaker 2: is that people think that hepatitis B is genetic. That's
Speaker 2: a big one, because it is passed down from mother
Speaker 2: to child during the blood exchange that happens at childbirth,
Speaker 2: you often wind up with family trees that are highly
Speaker 2: impacted by hepatitis B, where you'll see grandparents and parents
Speaker 2: and kids and aunts and uncles and cousins impacted by it.
Speaker 2: And so people think hepatites B is genetic and that
Speaker 2: only families are impacted if they have weak genes, or
Speaker 2: that something's wrong with the family because everybody has hepatiz B,
Speaker 2: and so that definitely promotes stigma, and it makes it
Speaker 2: makes families feel, frankly feel bad and makes people not
Speaker 2: want to say that they've that they've been infected with
Speaker 2: heptais B or that they've been diagnosed.
Speaker 1: So stigma and discrimination are often discussed together sort of
Speaker 1: in just lumped together, but they represent these separate things, right, So,
Speaker 1: in the case of hepatitis B, stigma is when someone
Speaker 1: sees you negatively because of your diagnosis or you see
Speaker 1: yourself negatively self stigma, while discrimination is when someone treats
Speaker 1: you differently because of it. What do stigma and discrimination
Speaker 1: look like for people with hepatitis B and why is
Speaker 1: it important to make a distinction between the two.
Speaker 2: Oh, I'm so glad you're distinguishing them. I think a
Speaker 2: lot of times we lump them together, and it's really
Speaker 2: important to understand the differences, and you defined it really,
Speaker 2: really well. So I think when people feel stigmatized because
Speaker 2: of hepatitis BE, whether it's self stigma or stigma that's
Speaker 2: coming from external sources, it means that they pull apart.
Speaker 2: So we often see people maybe a family where one
Speaker 2: person has hepatitis BE and they're not allowed to eat
Speaker 2: with the rest of the family, or they don't share
Speaker 2: the family meals shared goals for example. We do see
Speaker 2: that quite a bit, where families sometimes will shun people
Speaker 2: who have hepatitis BE, or where we see a lot
Speaker 2: of times people who are really concerned about transmitting the
Speaker 2: virus where they will pull back. And so you'll see
Speaker 2: people who they don't go out with their friends very much,
Speaker 2: they are scared to date, so it impacts their relationships.
Speaker 2: They may not go for a specific job because they're
Speaker 2: afraid that they'll put others at risk, or afraid that
Speaker 2: they won't be able to handle it in case they
Speaker 2: start having symptoms or they don't feel good, and so
Speaker 2: it does. It really impacts people's emotional life and their
Speaker 2: social life as well as their professional life. So the
Speaker 2: impacts of stigma are great, and one of the ways
Speaker 2: that we're trying to get around that is just to
Speaker 2: get people to talk about it more. You know, the
Speaker 2: more people can talk about their experiences and the more
Speaker 2: that we as communities can see people just like us
Speaker 2: talk about their hepatitis B, I think it will help,
Speaker 2: It will help to o it up.
Speaker 1: Yeah, I'm so glad that you brought up this storytelling aspect,
Speaker 1: and that's one of the things that I really love
Speaker 1: that the Hepatitis B Foundation does is fighting stigma through storytelling.
Speaker 1: So can you talk a little bit more about how
Speaker 1: important storytelling is and what these storytelling events are like.
Speaker 1: And also I think there's one coming up, is that right?
Speaker 2: Yeah, we do have our next training session. So yeah.
Speaker 2: So storytelling is it's part of the Almost every culture
Speaker 2: has an aspect of storytelling to it. So when you
Speaker 2: think about how do you educate people to overcome myths
Speaker 2: and misperceptions and try and promote screening and get people
Speaker 2: to get tested and get people to see their doctor
Speaker 2: and get into care, well, you know brochures. You know,
Speaker 2: we've done all kinds of things in public health over
Speaker 2: the past decade number of decades. Brochures and websites and
Speaker 2: things like that, they don't necessarily cut it. But when
Speaker 2: you have stories, when you have people who have been
Speaker 2: impacted by hepatitis B talking about how it has affected
Speaker 2: their life and how they've overcome issues and what they're
Speaker 2: dealing with, that is incredibly powerful. And it actually can
Speaker 2: change people's perceptions, and it can promote people to get
Speaker 2: tested and or it can promote them to stop feeling
Speaker 2: bad maybe and to stop self isolating, or maybe it
Speaker 2: will promote a healthcare provider to look differently at their
Speaker 2: heptized be patients or their community. So storytelling, we think
Speaker 2: is very, very impactful. We do have about forty storytellers
Speaker 2: around the country. Our storytelling videos which are three minutes
Speaker 2: long and they're in I think they're in nine languages.
Speaker 2: Now they've been viewed almost three million times online and
Speaker 2: so we're able to use technology to get the word out,
Speaker 2: which is which I also think is very powerful. And
Speaker 2: we do have a workshop coming up, so we work
Speaker 2: with our storytellers and we train them on how to
Speaker 2: most effectively and impactly tell their stories, and then we
Speaker 2: help them, we connect them with ways to share their stories,
Speaker 2: whether it's giving testimony at the FDA, or working to
Speaker 2: write an article with a newspaper or a blog, or
Speaker 2: we've had folks do Facebook lives. I mean, it's they're
Speaker 2: incredible and very very dedicated. And we also have some
Speaker 2: of our storytellers share stories specifically about their discrimination experiences,
Speaker 2: which is very very important too. And I think outside
Speaker 2: of stigma, what we tend to see around the country
Speaker 2: or around the world where there are no protections in
Speaker 2: place for people who have B, is that we see
Speaker 2: policies that are discriminatory. So in many countries around the world,
Speaker 2: if you have been diagnosed with Hepataties B, you can't
Speaker 2: get a job, or you can't work in a certain industry,
Speaker 2: or you can't immigrate. There are certain countries that won't
Speaker 2: let you in if you test positive for Hepataties B,
Speaker 2: and so discrimination is real and it impacts millions of lives.
Speaker 2: I mean, in the US, we are very lucky. We
Speaker 2: Hepatized B Foundation actually was at the forefront of working
Speaker 2: to make sure that people who have B in the
Speaker 2: US are protected and actually are now included under the
Speaker 2: Americans with Disabilities Act. So you cannot discriminate against someone
Speaker 2: who has hepatizes B in the US. That doesn't mean
Speaker 2: it doesn't happen. It just means that technically you're not
Speaker 2: supposed to do it. But around the world people don't
Speaker 2: have those same protections, and I think it becomes very
Speaker 2: difficult because if you're a person living with hepatitis B,
Speaker 2: all of a sudden, you know B, and the possibility
Speaker 2: of developing liver cancer is not your first concern. It's
Speaker 2: putting food on the table because you can't get a job.
Speaker 1: Right. No, that's such a good point, and I think
Speaker 1: you brought up this really also crucially important point earlier too,
Speaker 1: that although hepatitis B is a globally extremely prevalent disease,
Speaker 1: the virus is not equally distributed around the world. And
Speaker 1: so can you talk about some of the drivers of
Speaker 1: those global disparities and hepatitis BE prevalence, maybe they're historical
Speaker 1: drivers or current drivers, and how perception of hepatitis be
Speaker 1: very around the world, not just in these discrimination or
Speaker 1: lack of protection, but also in the way that people
Speaker 1: view like stigma in hepatitis B.
Speaker 2: Yeah, that's a great question. We do. See, we've done
Speaker 2: We're doing some research on this now, and we do
Speaker 2: see stigma differ and perceptions differ around the world. So
Speaker 2: I think historically the driver has been the virus itself.
Speaker 2: It is an ancient virus, and so when you have
Speaker 2: communities and cultures that have been around for a very
Speaker 2: long time, you're just going to see more hepatitis be there.
Speaker 2: I think more modern drivers is vaccine access. I mean
Speaker 2: that that is a really big issue. In areas of
Speaker 2: the world where we've been able to implement universal vaccination
Speaker 2: among babies when they're born, you're able to actually stop
Speaker 2: the transmission to future generations. And so some places around
Speaker 2: the world do better with vaccine and have implemented good
Speaker 2: vaccine programs for twenty or thirty years. In some areas,
Speaker 2: you know, implementing vaccination universally is a bigger challenge, and
Speaker 2: so you can't stop the spread there. The birth dose
Speaker 2: is critical. We have the capacity to stop every single
Speaker 2: infection of hepatiz B in the world. We can make
Speaker 2: it so that no baby is ever infected with hepatized B. Again,
Speaker 2: it's just that we don't prioritize it right. So, you know,
Speaker 2: childhood infin vaccination is incredibly important. No one misses when
Speaker 2: possible a polio vaccine, for example. For some reason, the
Speaker 2: same kind of priority and importance isn't given to making
Speaker 2: sure that babies are protected from hepatiz B.
Speaker 1: So, as you mentioned, there are nearly three hundred million
Speaker 1: people around the world living with chronic hepatitis B, but
Speaker 1: this disease receives so much less attention compared to other
Speaker 1: diseases with similarly high or not even as high global prevalences.
Speaker 1: So can you share your thoughts on why it seems
Speaker 1: to be overlooked and how that's reflected also in funding
Speaker 1: rates for research into this virus.
Speaker 2: Absolutely, I think a lot of it has to do with,
Speaker 2: again the communities that are impacted by hepatizes B and
Speaker 2: the fact that it's stigmatized. We don't, unfortunately have a
Speaker 2: really strong advocacy for voice Globally. People are not demanding
Speaker 2: that they give access to vaccines and that governments are
Speaker 2: giving access to treatments because they're afraid to speak out.
Speaker 2: But outside of that, I think the fact that we
Speaker 2: don't have a cure is a really big issue. You know,
Speaker 2: our colleagues in the hepatitis sea world, who we work
Speaker 2: with very closely they have a cure for hepatatus C,
Speaker 2: and they have faced tons of challenges in terms of
Speaker 2: access and getting governments and funders to prioritize that. Once
Speaker 2: they found a cure for hepatatus C, it really did
Speaker 2: become priority. And you can see countries and governments paying
Speaker 2: for hepsy cure and governments that are actually implementing hepatitis
Speaker 2: CE elimination plans. They're getting rid of all heps in
Speaker 2: their country. And it's wonderful. If we had a cure
Speaker 2: for hepatatis B, I suspect and I hope that we
Speaker 2: would see the same kind of excitement. I think the
Speaker 2: fact that we have really good treatment but not a
Speaker 2: cure is holding us back. However, I'm not sure how
Speaker 2: it's any different than HIV, right, so there's no cure
Speaker 2: for HIV. In fact, treatment for HIV and treatment for
Speaker 2: hept B are identical. You take antivirals forever essentially, and
Speaker 2: yet we see, you know, huge uptake and push to
Speaker 2: get everybody who is diagnosed with HIV on antivirals as
Speaker 2: well they should. I'd like to see that same excitement
Speaker 2: and prioritization to make sure that every person with hept
Speaker 2: B gets their antivirals as well, and I just think,
Speaker 2: you know, I'm not sure that people really understand the
Speaker 2: link between het B and liver cancer and the fact
Speaker 2: that one in four people with hepatized B will die
Speaker 2: if they don't get treatment. I mean, that's huge and
Speaker 2: if you've ever seen anyone die of liver cancer, it's awful.
Speaker 2: And if you can prevent it, you know, you absolutely should.
Speaker 2: But maybe we just aren't strong enough in our messaging.
Speaker 1: What do you think is the challenge in getting a
Speaker 1: cure for B?
Speaker 2: Great question, and it is something we spend a lot
Speaker 2: of time thinking about and talking about, I think as
Speaker 2: public health scientists and as bench scientists. So, hepatized B
Speaker 2: is a tricky virus, and one of the things that
Speaker 2: the hepatized B virus does that other viruses don't do
Speaker 2: is that integrates its DNA into the host genome. And
Speaker 2: so once a person has that happen, it's really really
Speaker 2: hard to get rid of. It's a it's a very
Speaker 2: complicated virus, and you know, we've made great strides. There
Speaker 2: are actually a number of drugs right now that are
Speaker 2: in phase three clinical trial, and some people are cured
Speaker 2: by the way their immune system just fights it off.
Speaker 2: It's just that most people aren't able to do that.
Speaker 2: And so what we have to figure out is for
Speaker 2: those people who are able to fight the virus off
Speaker 2: and be cured, you know, what is it that makes
Speaker 2: them special? And how do how do we work with
Speaker 2: targeting the virus and also boosting the immune system at
Speaker 2: the same time to make sure that people can get
Speaker 2: rid of the virus. I you know, I'm not unfortunately
Speaker 2: a bench scientist is not my or an immunologist, it's
Speaker 2: not my area. But my understanding is that it's just
Speaker 2: a really tricky virus.
Speaker 1: So, going back a bit to the discussion of stigma
Speaker 1: and discrimination, you talked about the ways that we can
Speaker 1: try to address those things or try to put in
Speaker 1: place measures to protect against discrimination or storytelling as a
Speaker 1: way to reduce stigma. How do we measure both the
Speaker 1: impact of those types of programs, whether it's like to
Speaker 1: reduce stigma and discrimination, and also how do we measure
Speaker 1: the impact overall of stigma and discrimination? Like what does
Speaker 1: that look like? What do those studies look like?
Speaker 2: Great question, So I think and we we do quite
Speaker 2: a lot of this now. Is measuring the impact and
Speaker 2: a lot of that is done qualitatively, and so doing
Speaker 2: things like focus groups and interviews, in depth interviews with
Speaker 2: essentially hundreds of people living with hepatitis BE around the
Speaker 2: world and asking really in depth questions, you are able
Speaker 2: to tease out how stagma and discrimination impacts people with
Speaker 2: hep B and then you publish on it, right And
Speaker 2: so we've done that, working with people living with hept
Speaker 2: B in multiple countries, in multiple languages, asking just really
Speaker 2: asking them, how does hepatize be impact your life? And
Speaker 2: we ask it from multiple perspectives, things like professional impact,
Speaker 2: social impact, physical impact, psychological impact, and you're able to
Speaker 2: do In doing that, you're able to tease out how
Speaker 2: stigma and discrimination impacts people. You know, quantitative data collection
Speaker 2: has a role too, and doing things like online surveys
Speaker 2: you may not get as in depth information, but it
Speaker 2: does give you a broad picture of perhaps how widespread
Speaker 2: the issue is and how important it is in different
Speaker 2: groups compared to others. And then I think in terms
Speaker 2: of assessing impact of programs, you know, if you're trying
Speaker 2: to impact discrimination, I think one of the keys to
Speaker 2: look for is policy change. If you're able to change
Speaker 2: policy at a governmental level, that's a huge win, and
Speaker 2: that's a really nice way of knowing whether your program
Speaker 2: or your project worked. But some of it is also
Speaker 2: looking at your data. So we have a hotline, it's
Speaker 2: essentially a helpline at the HEAB Foundation. We get about
Speaker 2: ten thousand people contact us a year. We document every
Speaker 2: single contact and what they're calling us about, so over
Speaker 2: time you can see if less people are calling you
Speaker 2: about stigma or discrimination. And for example, over the last
Speaker 2: three years, we have seen a huge uptick in the
Speaker 2: people who are reaching out to us about medication access
Speaker 2: being able to forward their medications. So sometimes that's the
Speaker 2: kind of data where it may not be as rigorous
Speaker 2: as sort of quantitative data collection, but it does give
Speaker 2: you a picture of what the needs are and how
Speaker 2: they're changing.
Speaker 1: Yeah, that's really interesting. I think it's like you said,
Speaker 1: it takes so many different approaches to measure the impact.
Speaker 1: And that kind of leads me into my next question,
Speaker 1: which is sort of the million dollar question. What do
Speaker 1: you think are our best tools to stop or reduce
Speaker 1: stigma and discrimination when it comes to hepatitis B.
Speaker 2: I think I think the power of the people you have.
Speaker 2: Can you imagine if three hundred million people raise their voice.
Speaker 2: I mean, it would be overpowering. I think that that's
Speaker 2: our biggest strength. That we have three hundred million people
Speaker 2: who are impacted with hepatitis B, and if we can
Speaker 2: help even a small percentage of them to create a
Speaker 2: grassroots advocacy movement and get people demanding that they have
Speaker 2: access to hept BE testing and HEPTB treatment, that that
Speaker 2: would be incredible.
Speaker 1: So you've talked now about multiple different ways that the
Speaker 1: Hepatitis B Foundation is addressing these issues of stigma and discrimination.
Speaker 1: Can you talk a little bit more about the other
Speaker 1: missions that the Foundation has.
Speaker 2: So overall, our mission is to find a cure for
Speaker 2: hepatitise B and to improve the quality of life of
Speaker 2: everyone living with HEPTBE worldwide, and so I have to
Speaker 2: mention our research arms. So we do have about fifty
Speaker 2: inch scientists immunologists for all, just in chemists who are
Speaker 2: working to find a cure for heptaise B, and they
Speaker 2: are at our Biotechnology center in Doylestomp, Pennsylvania. In fact,
Speaker 2: one of the great privileges of my life is that
Speaker 2: as a public health scientist, I can walk down the
Speaker 2: hall and speak with leading scientists who are who know
Speaker 2: everything about the virus and are looking for a cure.
Speaker 2: So we do do that, we fund that research, and
Speaker 2: also I think from the public health perspective, I think
Speaker 2: our biggest issue is getting the world ready for a cure,
Speaker 2: at least that's how I see it. So if we
Speaker 2: found a cure for hepatitis B tomorrow, and wouldn't that
Speaker 2: be incredible, I'm not sure who would get it because
Speaker 2: you have a situation where worldwide only about ten percent
Speaker 2: of people are diagnosed with HEBB and even less access care.
Speaker 2: And so my job and the job of the team
Speaker 2: at the heap B Foundation is to get the world
Speaker 2: ready so that when we have a cure and hopefully
Speaker 2: a functional cure in five, ten, even fifteen years, everyone
Speaker 2: who needs it can get it. And so we do
Speaker 2: a lot of work figuring out what the challenges are,
Speaker 2: what are the barriers to testing and care and treatment,
Speaker 2: and then overcoming them, and that I think is the
Speaker 2: big picture for us.
Speaker 1: So we're going to take a quick break here and
Speaker 1: then when we get back, I want to hear all
Speaker 1: about how you got involved with this super cool, wonderful,
Speaker 1: very important work.
Speaker 4: Okay, welcome back everyone.
Speaker 1: So in the first half of this interview, we learned
Speaker 1: so so much about the impacts that stigma and discrimination
Speaker 1: have on people living with hepatitis B. But now I
Speaker 1: want to shift talking more about what it's like to
Speaker 1: be involved with this type of work. So doctor Cohen,
Speaker 1: can you start us off by talking a bit about
Speaker 1: your job, Like how much does your job title actually
Speaker 1: reflect what you end up doing on a day to
Speaker 1: day basis.
Speaker 2: That's a great question.
Speaker 3: I have no idea, Okay, So I think in any
Speaker 3: given day, I'm I do administration, right because I have
Speaker 3: to run the organization.
Speaker 2: So it's budgeting and grant writing and report writing, making
Speaker 2: sure that my staff and the team have everything they
Speaker 2: need to do their job, so you know, training and
Speaker 2: administration and just checking in with people, and then of course,
Speaker 2: you know, working on the programs themselves. And so I
Speaker 2: try and do a little bit of research every day
Speaker 2: if I can, just because it's it's what I love
Speaker 2: to do. So doing a little bit of research, probably
Speaker 2: a little grant writing, probably working on an article or
Speaker 2: a public journal article or a publication, answering consults for people.
Speaker 2: And right now, of course I'm the cod COVID nineteen
Speaker 2: safety officer for our campus. So a lot of my
Speaker 2: time right now is actually contact tracing and setting policies
Speaker 2: for preventing the spread of COVID nineteen. So I don't
Speaker 2: know how much my title reflects my job, but I
Speaker 2: think perhaps my title is global enough that it does
Speaker 2: reflect the fact that I think. And that's one of
Speaker 2: the great things about public health. I think I do
Speaker 2: twelve different things every day, some of that I like
Speaker 2: more than others, but I do it all.
Speaker 1: What are some of those things that you like more
Speaker 1: than others?
Speaker 2: All the research. I love doing the research, whether it's
Speaker 2: qualitative research, and in fact, just today I was doing
Speaker 2: I was working on some focus group analysis and absolutely
Speaker 2: enjoyed it. In fact, I hated when I had to
Speaker 2: stop it. I love working with the staff when we do,
Speaker 2: like our team, when we get together and we do
Speaker 2: strategic planning, or when we have a new exciting idea
Speaker 2: that we want to flesh out, and I did that
Speaker 2: this morning. In fact, so I was meeting with one
Speaker 2: of the team members and we were talking about hepatitis
Speaker 2: Delta and some exciting new program ideas for that this year.
Speaker 2: So that part I love anything that has to do
Speaker 2: with working with partners. I love, But of course for me,
Speaker 2: it's all about the research.
Speaker 1: So when you tell someone I work with hepatitis B
Speaker 1: and I help run this nonprofit, what do you think
Speaker 1: some of the aspects of your job that may not
Speaker 1: come to someone's mind immediately when they hear that that's
Speaker 1: what you do. Like, what do you think that they
Speaker 1: would be surprised to learn that you do?
Speaker 2: Oh? Wow, that's a great question. I think budgeting is
Speaker 2: something you know, that we all have to do in
Speaker 2: public health because you wind up getting grants or some
Speaker 2: kind of funding for your programs and projects, and then
Speaker 2: you have to so you have to kind of first
Speaker 2: figure out how much you think you're going to spend
Speaker 2: on something, and then and then actually spend it like
Speaker 2: you said you were going to. So I do think
Speaker 2: that's probably something people don't realize that we do a
Speaker 2: lot of in public health. I also, I'm not sure
Speaker 2: people understand the idea of, you know, all the different
Speaker 2: ways that we have to try and get funding, So
Speaker 2: grant writing and advocacy work and fundraising, event planning, I mean,
Speaker 2: all of it goes into public health and you can't
Speaker 2: do anything without it, you know. I think people today
Speaker 2: have a little bit more of an idea of what
Speaker 2: public health means than they may have a few years
Speaker 2: ago because of the COVID nineteen pandemic. Although I think
Speaker 2: when people think of public health right now, they may
Speaker 2: think of epidemiology and not understand, you know, all the
Speaker 2: thousands of other things that we do, like developing communications
Speaker 2: campaigns to help people understand health issues. That's a big
Speaker 2: part of it too, And people may not not understand.
Speaker 1: That public health is such an enormous and difficult to
Speaker 1: define field that there seems like endless things that you
Speaker 1: can do, which is really cool. I mean, it's amazing.
Speaker 2: Yeah, I agree, and it's one of the things that
Speaker 2: attracted me to public health in the first place, I think,
Speaker 2: was that there's just so much you can do.
Speaker 1: Yeah. So, so talk to me a little bit more
Speaker 1: about that. How did you get started in public health?
Speaker 1: And you know, what was your journey from your early
Speaker 1: days of your educational career all the way to how
Speaker 1: you got involved in het B work.
Speaker 2: Sure, So I think I I think I fell into
Speaker 2: public health in a in a similar way to a
Speaker 2: lot of other public health scientists. I was pre med
Speaker 2: in undergrad and I really thought that I thought that
Speaker 2: I was going to go to medical school. And so
Speaker 2: after I graduated with my undergrad and with my bachelor's,
Speaker 2: I took a year off and I did a fellowship
Speaker 2: at the National Cancer Institute where I was. I worked
Speaker 2: in a lab for a year and I really enjoyed it.
Speaker 2: And while I was there, I took a public health
Speaker 2: class at GW and I had no idea what public
Speaker 2: health was and was still committed to med school. And
Speaker 2: mann did I love that class, And so I just,
Speaker 2: you know, I started thinking more about public health than
Speaker 2: about medicine, and at some point what I wanted to
Speaker 2: do just switched. I spent some time interviewing clinicians, and
Speaker 2: I spent some time interviewing public health practitioners, and it
Speaker 2: became clear to me over time that really that's where
Speaker 2: my heart was. It was working in communities and not
Speaker 2: working in a lab and not doing clinical work. So,
Speaker 2: much to my parents chagrin, I gave up to the
Speaker 2: idea of going to med school and I got my
Speaker 2: MPH instead.
Speaker 1: That's so fascinating. I feel like that story resonates with
Speaker 1: a lot of people who only discover public health later
Speaker 1: on or later than they thought they might have.
Speaker 2: Yeah, I agree, And in fact, one of the things
Speaker 2: I try and do so we do some education at
Speaker 2: the foundation. We bring in high school students and college students,
Speaker 2: and I always try and worm my way in and
Speaker 2: let them know that public health is an option. Because
Speaker 2: I think you're right. When you're young and you like science,
Speaker 2: you think I'm going to go to I'm either going
Speaker 2: to go to med school or I'm going to work
Speaker 2: in a lab. And I think public health just doesn't
Speaker 2: get enough. We don't promote it enough to young people,
Speaker 2: because I do think that a lot of people would
Speaker 2: would go for it. I think so when I when
Speaker 2: I first made the switch, I was nervous myself. I
Speaker 2: was thinking, I love science, love science. I'm a biology
Speaker 2: you know, biology nerd, and I was worried that I
Speaker 2: was going to have to give that up in public health.
Speaker 2: And you really don't. I mean, I you know, if
Speaker 2: you stay up on the science. I consider myself a
Speaker 2: scientist and I stay up on the latest research. And
Speaker 2: I don't think you have to give up science to
Speaker 2: do public health, which I think a lot of people
Speaker 2: don't don't understand.
Speaker 1: Right absolutely, And and you know on that there are
Speaker 1: so many different ways you can do public health or
Speaker 1: do science in public health. You know, there's and Masters
Speaker 1: of Science or an MPH Masters of public Health. There's
Speaker 1: a Doctor of public Health and a PhD. There are
Speaker 1: so many different degree options here. So can you share
Speaker 1: a little bit about why you chose the different graduate
Speaker 1: programs that you chose.
Speaker 2: Absolutely so. I started with I chose the MPH program.
Speaker 2: I got my master's in public health at Temple University.
Speaker 2: We were living outside of Philly at the time, and
Speaker 2: I really enjoyed the program. I like that it was applied.
Speaker 2: I didn't necessarily see myself going into epidemiology or though
Speaker 2: although I did concentrate in ep I liked concentrating in it,
Speaker 2: but I didn't know that I wanted to practice EPI.
Speaker 2: And I felt like the MPH gave me that flexibility
Speaker 2: and they paid for me, which was the best part.
Speaker 2: I got a teaching assistantship and they paid for my
Speaker 2: masters which that of course, helped me make my choice.
Speaker 2: I do think that that this is good advice. I
Speaker 2: took time off in between getting my master's and my
Speaker 2: doctorate and I worked for a while because I think
Speaker 2: before you commit to a doctorate program, you should try
Speaker 2: and work in the field and really think about what
Speaker 2: it is you want to do. Because if you do
Speaker 2: want to stay in academia and you want to practice
Speaker 2: public health through an academic lens, then you know there
Speaker 2: are PhD programs out there that are excellent, or you
Speaker 2: can get your DrPH. But I will say a DrPH
Speaker 2: a doctorate in public health is it is supposed to
Speaker 2: be more of an applied degree, meaning it should give
Speaker 2: you everything you need to go out and practice public health.
Speaker 2: Not that you can't be in academics, because you could,
Speaker 2: but it is meant to be more applied. And so
Speaker 2: I do think I was lucky in that I took
Speaker 2: some time off in between to decide what I wanted
Speaker 2: to do and which degree I should get. When I
Speaker 2: started in the doctor program, I could have gone two ways.
Speaker 2: They had the epidemiology program and then the community health
Speaker 2: and prevention program, and I was not sure which one
Speaker 2: I was going to do. And this is where the
Speaker 2: power of mentors come in. I had one of my
Speaker 2: most amazing mentors. His name is doctor Tom London. He
Speaker 2: said to me, Shari, if you do the EPI track,
Speaker 2: you will always be an epidemiologist. That is what you're
Speaker 2: going to be doing. He said, if you do community
Speaker 2: health and prevention and you're going to get EPI, but
Speaker 2: it will open you up and allow you to do
Speaker 2: other things for the rest of your life. And so
Speaker 2: that's what I did. And I guess another thing that
Speaker 2: I'm incredibly grateful for over the years are the men
Speaker 2: tours that I've had, and they've helped me make some
Speaker 2: really difficult decisions.
Speaker 1: So can you talk about how you went from grad
Speaker 1: school to the Hepatitis B Foundation? What was that experience?
Speaker 2: Like my experience might be a little bit unusual in
Speaker 2: that I started somewhere I never left. So when you
Speaker 2: get your MPH degree, you have to part of the
Speaker 2: training is to complete some kind of research project or practicum.
Speaker 2: You have to go out and practice what you've learned.
Speaker 2: And most schools have now it's online, but when I
Speaker 2: was there it could because I'm old. It was a binder, right.
Speaker 2: So most schools have a list of organizations that you
Speaker 2: can look at to do your research project, and the
Speaker 2: Hepatitis B Foundation was listed in the Temple book, and
Speaker 2: I said, oh, you know, I did a little bit
Speaker 2: of research on it. And I always have been interested
Speaker 2: in infectious diseases, even when I was in the lab.
Speaker 2: I worked on infectious disease. I worked on cancer and
Speaker 2: with hepatitis B. I was like, well, you've got both.
Speaker 2: You've got the infectious disease component and you've got the
Speaker 2: cancer component. So I just gave them a call. I
Speaker 2: was halfway through my MPH program and I said, I
Speaker 2: need to do a research project. Would you be interested
Speaker 2: in having an intern? And I wound up doing my
Speaker 2: research project there, and when I graduated a year later,
Speaker 2: they said to me, well, why don't you just stay.
Speaker 2: Let's see what we can do. We don't have a
Speaker 2: public health program. Maybe you can help us build one.
Speaker 2: And that was in two thousand and I just never left.
Speaker 1: That's amazing. I love that. And so with a degree
Speaker 1: in public health, like we've both said, you can do
Speaker 1: so many different things, and there are so many different
Speaker 1: places or types of places you can work, right, you
Speaker 1: can work in academia, you can work for the government,
Speaker 1: you can work in industry, you can work for nonprofit
Speaker 1: and so can you talk a little bit about what
Speaker 1: some of the pros and cons are of the nonprofit
Speaker 1: world and some of the general ways that it differs
Speaker 1: from academic, government or industry careers. In public health.
Speaker 2: Sure, So in the no I think the nonprofit world
Speaker 2: has pros and it has cons I think we have
Speaker 2: the flexibility of setting our own strategic plan and being
Speaker 2: on the ground and doing what we want to do
Speaker 2: and what we know needs to get done, and we
Speaker 2: can do it with very little red tape. You know,
Speaker 2: we're small organizations for the most part. We don't have
Speaker 2: the same kind of policies and red tape that you
Speaker 2: might see in large academic institutions or in government entities.
Speaker 2: You know, when we if on Monday we realize that
Speaker 2: something is important to do, we can plan it on
Speaker 2: Tuesday and do it on Wednesday. We don't really have to.
Speaker 2: We don't have to go through the same kind of
Speaker 2: processes that other organizations do. I also think a problem
Speaker 2: for nonprofits, of course, is funding. Right. We are always
Speaker 2: chasing the dollars and trying to make sure that we
Speaker 2: have enough funding, and we will never have enough funding.
Speaker 2: So it's about you know, what kind of funding can
Speaker 2: you can you get to make sure you're meeting your
Speaker 2: mission and how do you spend it in the wisest way. So,
Speaker 2: of course, you know, for the dollars is always very
Speaker 2: very difficult. So I think also in the nonprofit world,
Speaker 2: we think about who our stakeholders are, and that's how
Speaker 2: we work towards our mission. So, for example, I have
Speaker 2: to answer to a board of directors, I have to
Speaker 2: answer to my funders, and then of course we have
Speaker 2: to answer to our constituents, the people who we're trying
Speaker 2: to meet their needs, and the people who our mission
Speaker 2: is for. And so because my stakeholders are different than
Speaker 2: the CDC stakeholders or Druxtel University stakeholders, you know, I
Speaker 2: think it impacts how you can get your work done.
Speaker 2: I think that being in the nonprofit world does give
Speaker 2: us the flexibility for those kinds of partnerships. And you know,
Speaker 2: the one thing I love about us as a nonprofit
Speaker 2: is we're neutral, so we can play with everyone, right.
Speaker 2: We can partner with government agencies and multiple academic institutions
Speaker 2: and multiple researchers, and pharmaceutical industry and other corporations, and
Speaker 2: we remain neutral throughout, which makes that's a strength for
Speaker 2: us because it means that others feel safe partnering with
Speaker 2: us too, and we can sometimes bring groups of people
Speaker 2: together that others can't because we have no skin in
Speaker 2: the game.
Speaker 1: So we get a lot of listeners who are interested
Speaker 1: in the field of public health but don't know maybe
Speaker 1: how to get started or what options are available to them.
Speaker 1: And so I wanted to ask you what one piece
Speaker 1: of advice is that you would give to someone who's
Speaker 1: in this boat.
Speaker 2: Oh. I think your best bet is to find a
Speaker 2: couple of people and email them. Reach out, find a
Speaker 2: few exciting people who you know, you find maybe online
Speaker 2: or maybe you find them at an academic institution, go
Speaker 2: on their web page, and just email them or call them.
Speaker 2: I have found in doing this myself public health practitioners
Speaker 2: are really open and want to share this kind of information.
Speaker 2: So I mean, I could tell you to go take
Speaker 2: a course and see if you like it, but that's
Speaker 2: only going to give you one piece of the pie,
Speaker 2: and it also is expensive. So I think talking to
Speaker 2: people it's the best thing you can do.
Speaker 1: Do you have any personal public health heroes?
Speaker 2: Oh? I love that question. Yeah, And I think the
Speaker 2: first person that brings to mind is doctor Sue Wong.
Speaker 2: She is an absolute hero of mine. She is a
Speaker 2: mom and a wife and a public health professional and
Speaker 2: a doctor and a person living with hepatatus be and
Speaker 2: also the outgoing president of the World Hepatitis Alliance. I
Speaker 2: think she must find forty eight hours a day somehow.
Speaker 2: I don't know how she does it, but she she
Speaker 2: is a hero of mine who very courageously and loudly
Speaker 2: shouts to the world but the need for hepatatus be
Speaker 2: treatment and cure. But she does it in a way
Speaker 2: that's loving and welcoming and just so brave. I love her.
Speaker 1: Oh, I love that so much. That's such a good answer.
Speaker 1: So what do you hope this next year brings in
Speaker 1: terms of hepatitis, be research or awareness.
Speaker 2: We have some really exciting things happening at the end
Speaker 2: of twenty twenty one. The ACIP, which I know everyone
Speaker 2: in the US now knows the ACIP because of the
Speaker 2: COVID nineteen vaccination. So the ACIP recently approved and CDC
Speaker 2: is signing off on universal adult Hepatitis B vaccine guidelines,
Speaker 2: and that means that for the next year we are
Speaker 2: working really hard to implement those And that means that
Speaker 2: right now, so previously people were recommended to get vaccinated
Speaker 2: for het B in the US when they were born
Speaker 2: or if they were in a particular risk group. And
Speaker 2: what that means is that only twenty five percent of
Speaker 2: people in the US are protected against heb B. Now
Speaker 2: the ACIP is recommending that all adults between the ages
Speaker 2: of eighteen and fifty nine nineteen and fifty nine get vaccinated,
Speaker 2: which is going to give us a huge opportunity to
Speaker 2: protect people. So we are very excited for the next
Speaker 2: twelve months to implement this, and now we have to
Speaker 2: make it happen, right because the policy is on paper,
Speaker 2: now we have to We are charged with making this happen.
Speaker 2: So I am excited about that and I think great
Speaker 2: things will happen with it over the next year.
Speaker 1: Well, that was simply wonderful. Thank you so much, doctor
Speaker 1: Cohen for taking the time to chat today. If you
Speaker 1: want to learn more about the Hepatitis B Foundation, check
Speaker 1: out HEPB dot org and I'll also link to the
Speaker 1: website and include social media links on our post for
Speaker 1: this episode. Speaking of our website. On our website you
Speaker 1: can find all kinds of good stuff, like the sources
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Speaker 1: to Bloodmobile for providing the music for this episode and
Speaker 1: all of our episodes. And thank you to you listeners.
Speaker 1: I hope that you liked this deeper dive into het
Speaker 1: Be And of course a big shout out to our wonderful,
Speaker 1: thoughtful patrons. We love you and appreciate you so much.
Speaker 1: We have got a brand new episode coming out next
Speaker 1: week on a whole new topic, so until then, keep
Speaker 1: washing those hands.