WEBVTT - Special Episode: Hep B Stigma & Discrimination 0:00:43.159 --> 0:00:46.839 Hi, I'm erin Welsh and this is this podcast will 0:00:46.920 --> 0:00:50.559 kill you. As you may have already noticed, this is 0:00:50.680 --> 0:00:54.360 not your typical t p w k Y episode. For one, 0:00:54.640 --> 0:00:58.040 you didn't hear Aaron Alman Updike say and I'm Erin 0:00:58.040 --> 0:01:01.160 Alman Updyke. But don't worry. She'll still be there for 0:01:01.240 --> 0:01:04.679 all of our regular episodes, and you won't just be 0:01:04.760 --> 0:01:07.839 hearing me ramble on all by myself in this episode. 0:01:08.200 --> 0:01:11.480 I've got a friend joining me. So what exactly is 0:01:11.560 --> 0:01:14.839 going on? Well? This is a bonus episode, the first 0:01:14.920 --> 0:01:17.640 in what will be a mini series of bonus content 0:01:17.720 --> 0:01:20.440 over the next few months. If you've listened to the 0:01:20.440 --> 0:01:24.160 podcast before, you know that we love a deep, deep 0:01:24.240 --> 0:01:27.360 dive on a topic. After all, that's basically what our 0:01:27.400 --> 0:01:30.399 podcast does and why we started doing it. But you 0:01:30.520 --> 0:01:34.720 also know that we can't always make that dive ourselves. Instead, 0:01:34.840 --> 0:01:37.440 one of our favorite things to do is to get 0:01:37.480 --> 0:01:41.560 someone else, an expert, to help us explore those dimensions 0:01:41.600 --> 0:01:44.360 of a disease or a topic that we can't quite 0:01:44.400 --> 0:01:47.840 reach on our own. Many of our episodes have featured 0:01:47.840 --> 0:01:51.160 these expert interviews, and I always have so much fun 0:01:51.240 --> 0:01:54.520 talking with them about their research and I get sad 0:01:54.560 --> 0:01:57.000 when the interview is over because I feel like there's 0:01:57.040 --> 0:02:00.720 still so much to discuss, especially about the expert themselves, 0:02:01.440 --> 0:02:05.120 which brings me to the second aim of this bonus episode. 0:02:05.160 --> 0:02:07.720 For a long time on the podcast, we've talked about 0:02:07.760 --> 0:02:11.440 doing a career's episode where we discuss the unbelievable number 0:02:11.480 --> 0:02:13.960 of different and exciting things that you can do in 0:02:13.960 --> 0:02:17.639 public health. We get lots of emails and messages from 0:02:17.680 --> 0:02:21.120 listeners asking what an epidemiologist does on a day to 0:02:21.200 --> 0:02:24.600 day basis, or what the difference is between a Master's 0:02:24.600 --> 0:02:28.000 of science and masters of public health, And frankly, I 0:02:28.040 --> 0:02:31.440 feel like the world has maybe never been as interested 0:02:31.520 --> 0:02:34.040 in what actually goes on in the wide world of 0:02:34.080 --> 0:02:37.440 public health as they are these days. So we thought 0:02:37.440 --> 0:02:39.519 it would be so much fun to try to get 0:02:39.520 --> 0:02:42.840 a better sense of what this amorphous umbrella term of 0:02:42.880 --> 0:02:47.160 public health really means. We envisioned this episode as covering 0:02:47.240 --> 0:02:52.200 everything from how to choose a graduate program, disease ecology, epidemiology, 0:02:52.320 --> 0:02:57.320 public policy, etc. To all of the many diverse opportunities 0:02:57.360 --> 0:02:59.720 open to people who want to pursue a career in 0:02:59.680 --> 0:03:06.680 public health. Conservation biologist, infectious disease physician, biostatistician, entomologist, clinical 0:03:06.720 --> 0:03:11.160 trials researcher. But we pretty quickly realized that this couldn't 0:03:11.200 --> 0:03:14.679 possibly be done in just one episode or just one 0:03:14.720 --> 0:03:18.720 mini series. Even so, in these bonus episodes, I'm combining 0:03:18.800 --> 0:03:21.320 my love of an even deeper dive on a topic 0:03:21.760 --> 0:03:24.960 with my love of picking a public health expert's brain 0:03:25.160 --> 0:03:27.639 on what it is they do and how they got 0:03:27.680 --> 0:03:30.960 to be where they are. Graciously offering to be the 0:03:31.000 --> 0:03:34.120 first to have their brain picked is doctor Sherry Cohen, 0:03:34.560 --> 0:03:38.080 Senior Vice President of the Hepatitis Bee Foundation, which is 0:03:38.120 --> 0:03:41.800 a nonprofit institution that is dedicated to finding a cure 0:03:41.840 --> 0:03:44.440 for the virus and improving the lives of those already 0:03:44.440 --> 0:03:48.320 affected by the disease. Last week, Aaron and I covered 0:03:48.440 --> 0:03:51.440 the hepatitis B virus, and if you haven't listened to 0:03:51.480 --> 0:03:54.840 that episode yet, you definitely should because it'll give you 0:03:54.880 --> 0:03:57.640 a nice backdrop of knowledge about this virus and the 0:03:57.640 --> 0:04:01.920 disease that it causes to recap Hepatitis B is an 0:04:02.000 --> 0:04:06.920 extremely prevalent infection, with nearly three hundred million people around 0:04:06.920 --> 0:04:10.680 the world chronically infected. The hepatitis B virus, which is 0:04:10.720 --> 0:04:14.560 transmitted through blood and body fluids can cause an acute 0:04:14.720 --> 0:04:17.679 or a chronic infection, and it can progress to severe 0:04:17.760 --> 0:04:21.160 liver disease and liver cancer in some people. The good 0:04:21.200 --> 0:04:24.200 news is that we do have both a vaccine as 0:04:24.240 --> 0:04:27.520 well as anti viral treatment, but the bad news is that, 0:04:27.600 --> 0:04:31.080 despite having these tools to help prevent and control the infection, 0:04:31.839 --> 0:04:35.440 a million and a half people are newly infected every year. 0:04:36.160 --> 0:04:38.080 Part of that might be due to the lack of 0:04:38.120 --> 0:04:42.280 access to timely vaccination or treatment, but another big component 0:04:42.360 --> 0:04:45.279 to this is the stigma and discrimination faced by many 0:04:45.360 --> 0:04:49.200 people living with hepatitis B. As we discussed in our 0:04:49.240 --> 0:04:52.839 regular season episode, the hepatitis B virus carries with it 0:04:52.920 --> 0:04:56.599 a substantial amount of stigma and discrimination, which can take 0:04:56.640 --> 0:04:59.160 a large emotional and mental toll on someone who may 0:04:59.240 --> 0:05:02.760 already be explos speriencing physical health challenges from their infection. 0:05:03.800 --> 0:05:08.080 But unlike screening for antibodies or examining liver function numbers, 0:05:08.520 --> 0:05:11.360 the impact of stigma is much more difficult to measure. 0:05:12.080 --> 0:05:15.080 In this episode, I'll be asking doctor Cohen to fill 0:05:15.160 --> 0:05:18.039 us in on what that stigma looks like, what is 0:05:18.080 --> 0:05:20.520 being done about it, and what it's like to run 0:05:20.560 --> 0:05:24.040 a public health nonprofit. I had such a great time 0:05:24.120 --> 0:05:27.080 chatting with doctor Cohen and I learned so so much. 0:05:27.839 --> 0:05:30.200 I will let her introduce herself and get right to 0:05:30.240 --> 0:05:50.400 the brain picking right after this break. 0:05:55.720 --> 0:05:58.720 Hi, my name is doctor Sherry Cohen. I am senior 0:05:58.839 --> 0:06:01.720 vice president at the Chase B Foundation and we are 0:06:01.760 --> 0:06:03.839 located in Doylestown, Pennsylvania. 0:06:04.000 --> 0:06:06.640 Wonderful. Thank you so much for taking the time to 0:06:06.720 --> 0:06:07.640 chat with me today. 0:06:08.400 --> 0:06:10.279 Thank you. I'm really excited to be here. 0:06:10.720 --> 0:06:10.920 Well. 0:06:10.960 --> 0:06:14.880 I am also very excited, especially to learn more about 0:06:14.960 --> 0:06:19.040 stigma and discrimination in hepatitis B, because it's such an 0:06:19.040 --> 0:06:22.160 important topic, as you know, and it's one that we 0:06:22.240 --> 0:06:26.480 only touched briefly upon in our Hepatitis B episode. Over 0:06:26.520 --> 0:06:29.320 the past couple of decades, we have made some pretty 0:06:29.320 --> 0:06:33.080 substantial strides in reducing the global burden of hepatitis B 0:06:33.320 --> 0:06:36.760 through prevention and treatment, but we still have a long 0:06:36.800 --> 0:06:39.760 way to go, and there are several barriers that keep 0:06:39.800 --> 0:06:43.040 these preventative tools from working, such as a lack of 0:06:43.080 --> 0:06:46.640 timely access to vaccines or a lack of understanding about 0:06:46.640 --> 0:06:50.120 the viruses transmission. But can you talk about the ways 0:06:50.160 --> 0:06:53.479 that stigma can also contribute to the persistence of the 0:06:53.520 --> 0:06:54.839 hepatitis B virus. 0:06:55.800 --> 0:06:58.800 Absolutely, it's a great question, and stigma is a big 0:06:58.839 --> 0:07:03.359 problem and one that is unfortunately a major barrier to 0:07:03.560 --> 0:07:07.080 eliminating hepatitis BE around the world. What we have is 0:07:07.120 --> 0:07:11.960 a misunderstood disease, and so hepatitis B is so common 0:07:12.440 --> 0:07:15.600 that it chronic. Hepatitis B impacts three hundred million people. 0:07:15.920 --> 0:07:18.640 Yet every person that has it, I think feels isolated 0:07:18.640 --> 0:07:22.360 and alone because we don't talk about it. Because hepatitis 0:07:22.400 --> 0:07:25.160 B is kind of a condition of the shadows, and 0:07:25.240 --> 0:07:27.600 people are often afraid to talk about it, and they're 0:07:27.640 --> 0:07:31.440 afraid when they have it, and I think that lends 0:07:31.480 --> 0:07:35.440 itself to a situation where when people get hepatitis B, 0:07:36.040 --> 0:07:40.520 they tend to self isolate because they're afraid of others 0:07:40.600 --> 0:07:43.560 judging them. They're afraid that they may be discriminated against 0:07:43.640 --> 0:07:45.640 because they have it, and so they keep it to 0:07:45.680 --> 0:07:48.040 themselves and they kind of pull back a little bit 0:07:48.080 --> 0:07:51.440 from family and friends in society. And then you also 0:07:51.560 --> 0:07:57.440 have societal stigma where we might actually be promoting stigma 0:07:58.160 --> 0:08:03.120 in communities. And so it's unfortunately a major barrier, and 0:08:03.240 --> 0:08:06.720 I think some of it has to do with how 0:08:06.760 --> 0:08:09.880 hepatitis B is transmitted in that it is an infectious disease, 0:08:09.920 --> 0:08:14.160 and of course there's always stigma with infectious diseases, but 0:08:14.480 --> 0:08:17.920 I also think hepatitis B has been around for you know, 0:08:18.080 --> 0:08:21.400 hundreds or thousands of years, and what comes along with 0:08:21.440 --> 0:08:25.920 that is these sort of deep, ingrained beliefs that are 0:08:25.960 --> 0:08:29.960 passed down from generation to generation about hepatitis B, and 0:08:30.440 --> 0:08:35.880 that also, I think has lent itself to deep misperceptions 0:08:36.360 --> 0:08:39.840 about the virus and about how it's transmitted and about 0:08:39.840 --> 0:08:44.280 how it's treated, and it serves, unfortunately, to promote fear, 0:08:44.320 --> 0:08:46.200 which means that people don't want to get tested and 0:08:46.400 --> 0:08:47.920 don't want to tell anyone when they have it. 0:08:48.559 --> 0:08:52.120 Right, absolutely, Can you talk about some of what these 0:08:52.240 --> 0:08:55.959 common misperceptions are around the hepatitis B virus? 0:08:56.800 --> 0:08:59.880 Yes, absolutely, we hear. So. We've done quite a lot 0:08:59.880 --> 0:09:03.520 of research among communities that are highly impacted by hepatitis B, 0:09:03.840 --> 0:09:08.800 and worldwide that's frankly almost everyone, but in particular it's Asian, American, 0:09:09.000 --> 0:09:12.880 Pacific Islander and African communities. And what we often hear 0:09:13.080 --> 0:09:16.680 is that people think that hepatitis B is genetic. That's 0:09:16.720 --> 0:09:19.600 a big one, because it is passed down from mother 0:09:19.679 --> 0:09:23.920 to child during the blood exchange that happens at childbirth, 0:09:24.400 --> 0:09:27.120 you often wind up with family trees that are highly 0:09:27.160 --> 0:09:30.280 impacted by hepatitis B, where you'll see grandparents and parents 0:09:30.360 --> 0:09:33.319 and kids and aunts and uncles and cousins impacted by it. 0:09:33.600 --> 0:09:36.760 And so people think hepatites B is genetic and that 0:09:37.240 --> 0:09:40.120 only families are impacted if they have weak genes, or 0:09:40.640 --> 0:09:43.719 that something's wrong with the family because everybody has hepatiz B, 0:09:44.240 --> 0:09:47.920 and so that definitely promotes stigma, and it makes it 0:09:47.960 --> 0:09:52.440 makes families feel, frankly feel bad and makes people not 0:09:52.520 --> 0:09:55.160 want to say that they've that they've been infected with 0:09:55.200 --> 0:09:56.800 heptais B or that they've been diagnosed. 0:09:57.760 --> 0:10:02.200 So stigma and discrimination are often discussed together sort of 0:10:02.240 --> 0:10:06.280 in just lumped together, but they represent these separate things, right, So, 0:10:06.440 --> 0:10:09.160 in the case of hepatitis B, stigma is when someone 0:10:09.200 --> 0:10:12.880 sees you negatively because of your diagnosis or you see 0:10:12.920 --> 0:10:17.320 yourself negatively self stigma, while discrimination is when someone treats 0:10:17.320 --> 0:10:21.200 you differently because of it. What do stigma and discrimination 0:10:21.360 --> 0:10:24.200 look like for people with hepatitis B and why is 0:10:24.240 --> 0:10:27.040 it important to make a distinction between the two. 0:10:27.960 --> 0:10:30.360 Oh, I'm so glad you're distinguishing them. I think a 0:10:30.360 --> 0:10:33.199 lot of times we lump them together, and it's really 0:10:33.200 --> 0:10:36.640 important to understand the differences, and you defined it really, 0:10:36.880 --> 0:10:41.360 really well. So I think when people feel stigmatized because 0:10:41.400 --> 0:10:44.880 of hepatitis BE, whether it's self stigma or stigma that's 0:10:44.920 --> 0:10:48.640 coming from external sources, it means that they pull apart. 0:10:48.679 --> 0:10:53.040 So we often see people maybe a family where one 0:10:53.080 --> 0:10:55.960 person has hepatitis BE and they're not allowed to eat 0:10:55.960 --> 0:10:58.640 with the rest of the family, or they don't share 0:10:58.679 --> 0:11:02.920 the family meals shared goals for example. We do see 0:11:02.920 --> 0:11:05.880 that quite a bit, where families sometimes will shun people 0:11:05.880 --> 0:11:08.800 who have hepatitis BE, or where we see a lot 0:11:08.840 --> 0:11:11.839 of times people who are really concerned about transmitting the 0:11:11.920 --> 0:11:15.640 virus where they will pull back. And so you'll see 0:11:15.679 --> 0:11:18.640 people who they don't go out with their friends very much, 0:11:18.840 --> 0:11:22.600 they are scared to date, so it impacts their relationships. 0:11:23.000 --> 0:11:25.840 They may not go for a specific job because they're 0:11:25.880 --> 0:11:27.920 afraid that they'll put others at risk, or afraid that 0:11:27.960 --> 0:11:29.800 they won't be able to handle it in case they 0:11:29.800 --> 0:11:32.440 start having symptoms or they don't feel good, and so 0:11:33.200 --> 0:11:37.080 it does. It really impacts people's emotional life and their 0:11:37.160 --> 0:11:40.080 social life as well as their professional life. So the 0:11:40.120 --> 0:11:44.080 impacts of stigma are great, and one of the ways 0:11:44.080 --> 0:11:45.800 that we're trying to get around that is just to 0:11:45.840 --> 0:11:47.560 get people to talk about it more. You know, the 0:11:47.640 --> 0:11:51.200 more people can talk about their experiences and the more 0:11:51.280 --> 0:11:55.480 that we as communities can see people just like us 0:11:55.920 --> 0:11:58.920 talk about their hepatitis B, I think it will help, 0:11:59.320 --> 0:12:00.520 It will help to o it up. 0:12:01.280 --> 0:12:05.040 Yeah, I'm so glad that you brought up this storytelling aspect, 0:12:05.120 --> 0:12:06.880 and that's one of the things that I really love 0:12:07.240 --> 0:12:11.840 that the Hepatitis B Foundation does is fighting stigma through storytelling. 0:12:12.160 --> 0:12:14.600 So can you talk a little bit more about how 0:12:14.640 --> 0:12:18.880 important storytelling is and what these storytelling events are like. 0:12:19.040 --> 0:12:21.600 And also I think there's one coming up, is that right? 0:12:22.440 --> 0:12:24.960 Yeah, we do have our next training session. So yeah. 0:12:25.000 --> 0:12:28.600 So storytelling is it's part of the Almost every culture 0:12:28.679 --> 0:12:31.160 has an aspect of storytelling to it. So when you 0:12:31.200 --> 0:12:36.280 think about how do you educate people to overcome myths 0:12:36.360 --> 0:12:40.040 and misperceptions and try and promote screening and get people 0:12:40.080 --> 0:12:42.280 to get tested and get people to see their doctor 0:12:42.320 --> 0:12:45.720 and get into care, well, you know brochures. You know, 0:12:45.760 --> 0:12:47.959 we've done all kinds of things in public health over 0:12:48.000 --> 0:12:52.000 the past decade number of decades. Brochures and websites and 0:12:52.040 --> 0:12:55.480 things like that, they don't necessarily cut it. But when 0:12:55.520 --> 0:12:57.880 you have stories, when you have people who have been 0:12:57.920 --> 0:13:00.920 impacted by hepatitis B talking about how it has affected 0:13:00.920 --> 0:13:04.040 their life and how they've overcome issues and what they're 0:13:04.080 --> 0:13:07.840 dealing with, that is incredibly powerful. And it actually can 0:13:08.200 --> 0:13:11.760 change people's perceptions, and it can promote people to get 0:13:11.800 --> 0:13:14.520 tested and or it can promote them to stop feeling 0:13:14.559 --> 0:13:17.360 bad maybe and to stop self isolating, or maybe it 0:13:17.400 --> 0:13:20.840 will promote a healthcare provider to look differently at their 0:13:20.960 --> 0:13:25.280 heptized be patients or their community. So storytelling, we think 0:13:25.360 --> 0:13:29.240 is very, very impactful. We do have about forty storytellers 0:13:29.280 --> 0:13:33.320 around the country. Our storytelling videos which are three minutes 0:13:33.360 --> 0:13:35.560 long and they're in I think they're in nine languages. 0:13:35.600 --> 0:13:39.880 Now they've been viewed almost three million times online and 0:13:39.920 --> 0:13:42.959 so we're able to use technology to get the word out, 0:13:42.960 --> 0:13:45.839 which is which I also think is very powerful. And 0:13:45.880 --> 0:13:47.840 we do have a workshop coming up, so we work 0:13:47.880 --> 0:13:51.040 with our storytellers and we train them on how to 0:13:51.080 --> 0:13:54.920 most effectively and impactly tell their stories, and then we 0:13:55.040 --> 0:13:58.679 help them, we connect them with ways to share their stories, 0:13:58.720 --> 0:14:02.920 whether it's giving testimony at the FDA, or working to 0:14:03.000 --> 0:14:06.240 write an article with a newspaper or a blog, or 0:14:06.360 --> 0:14:09.000 we've had folks do Facebook lives. I mean, it's they're 0:14:09.160 --> 0:14:13.480 incredible and very very dedicated. And we also have some 0:14:13.559 --> 0:14:18.080 of our storytellers share stories specifically about their discrimination experiences, 0:14:18.120 --> 0:14:22.280 which is very very important too. And I think outside 0:14:22.320 --> 0:14:25.760 of stigma, what we tend to see around the country 0:14:25.880 --> 0:14:28.600 or around the world where there are no protections in 0:14:28.640 --> 0:14:32.080 place for people who have B, is that we see 0:14:32.120 --> 0:14:35.640 policies that are discriminatory. So in many countries around the world, 0:14:36.040 --> 0:14:38.520 if you have been diagnosed with Hepataties B, you can't 0:14:38.520 --> 0:14:42.080 get a job, or you can't work in a certain industry, 0:14:42.720 --> 0:14:45.240 or you can't immigrate. There are certain countries that won't 0:14:45.320 --> 0:14:47.800 let you in if you test positive for Hepataties B, 0:14:48.560 --> 0:14:53.640 and so discrimination is real and it impacts millions of lives. 0:14:53.960 --> 0:14:56.280 I mean, in the US, we are very lucky. We 0:14:57.080 --> 0:15:00.600 Hepatized B Foundation actually was at the forefront of working 0:15:00.680 --> 0:15:03.000 to make sure that people who have B in the 0:15:03.080 --> 0:15:06.880 US are protected and actually are now included under the 0:15:06.960 --> 0:15:10.600 Americans with Disabilities Act. So you cannot discriminate against someone 0:15:10.600 --> 0:15:13.400 who has hepatizes B in the US. That doesn't mean 0:15:13.440 --> 0:15:15.520 it doesn't happen. It just means that technically you're not 0:15:15.520 --> 0:15:18.200 supposed to do it. But around the world people don't 0:15:18.200 --> 0:15:21.000 have those same protections, and I think it becomes very 0:15:21.040 --> 0:15:23.920 difficult because if you're a person living with hepatitis B, 0:15:24.120 --> 0:15:26.920 all of a sudden, you know B, and the possibility 0:15:26.920 --> 0:15:29.520 of developing liver cancer is not your first concern. It's 0:15:29.520 --> 0:15:31.600 putting food on the table because you can't get a job. 0:15:32.520 --> 0:15:35.480 Right. No, that's such a good point, and I think 0:15:35.520 --> 0:15:39.040 you brought up this really also crucially important point earlier too, 0:15:39.200 --> 0:15:43.760 that although hepatitis B is a globally extremely prevalent disease, 0:15:44.160 --> 0:15:47.880 the virus is not equally distributed around the world. And 0:15:48.160 --> 0:15:50.760 so can you talk about some of the drivers of 0:15:50.800 --> 0:15:54.520 those global disparities and hepatitis BE prevalence, maybe they're historical 0:15:54.600 --> 0:15:59.360 drivers or current drivers, and how perception of hepatitis be 0:15:59.720 --> 0:16:03.560 very around the world, not just in these discrimination or 0:16:03.640 --> 0:16:06.560 lack of protection, but also in the way that people 0:16:06.680 --> 0:16:08.680 view like stigma in hepatitis B. 0:16:09.560 --> 0:16:12.360 Yeah, that's a great question. We do. See, we've done 0:16:12.440 --> 0:16:14.240 We're doing some research on this now, and we do 0:16:14.280 --> 0:16:17.560 see stigma differ and perceptions differ around the world. So 0:16:17.600 --> 0:16:21.120 I think historically the driver has been the virus itself. 0:16:21.160 --> 0:16:23.920 It is an ancient virus, and so when you have 0:16:24.280 --> 0:16:27.120 communities and cultures that have been around for a very 0:16:27.160 --> 0:16:29.600 long time, you're just going to see more hepatitis be there. 0:16:30.040 --> 0:16:33.960 I think more modern drivers is vaccine access. I mean 0:16:33.960 --> 0:16:37.080 that that is a really big issue. In areas of 0:16:37.120 --> 0:16:40.880 the world where we've been able to implement universal vaccination 0:16:41.160 --> 0:16:44.560 among babies when they're born, you're able to actually stop 0:16:44.640 --> 0:16:49.360 the transmission to future generations. And so some places around 0:16:49.360 --> 0:16:52.640 the world do better with vaccine and have implemented good 0:16:52.720 --> 0:16:55.720 vaccine programs for twenty or thirty years. In some areas, 0:16:56.040 --> 0:16:59.200 you know, implementing vaccination universally is a bigger challenge, and 0:16:59.280 --> 0:17:02.280 so you can't stop the spread there. The birth dose 0:17:02.400 --> 0:17:05.480 is critical. We have the capacity to stop every single 0:17:05.520 --> 0:17:07.560 infection of hepatiz B in the world. We can make 0:17:07.600 --> 0:17:10.439 it so that no baby is ever infected with hepatized B. Again, 0:17:10.640 --> 0:17:13.520 it's just that we don't prioritize it right. So, you know, 0:17:13.680 --> 0:17:18.000 childhood infin vaccination is incredibly important. No one misses when 0:17:18.119 --> 0:17:21.520 possible a polio vaccine, for example. For some reason, the 0:17:21.560 --> 0:17:25.280 same kind of priority and importance isn't given to making 0:17:25.280 --> 0:17:27.000 sure that babies are protected from hepatiz B. 0:17:27.680 --> 0:17:30.920 So, as you mentioned, there are nearly three hundred million 0:17:30.960 --> 0:17:34.720 people around the world living with chronic hepatitis B, but 0:17:34.840 --> 0:17:38.520 this disease receives so much less attention compared to other 0:17:38.600 --> 0:17:42.600 diseases with similarly high or not even as high global prevalences. 0:17:43.080 --> 0:17:45.760 So can you share your thoughts on why it seems 0:17:45.800 --> 0:17:49.560 to be overlooked and how that's reflected also in funding 0:17:49.640 --> 0:17:51.480 rates for research into this virus. 0:17:52.400 --> 0:17:55.080 Absolutely, I think a lot of it has to do with, 0:17:55.720 --> 0:17:59.240 again the communities that are impacted by hepatizes B and 0:17:59.280 --> 0:18:04.080 the fact that it's stigmatized. We don't, unfortunately have a 0:18:04.160 --> 0:18:07.639 really strong advocacy for voice Globally. People are not demanding 0:18:07.840 --> 0:18:11.000 that they give access to vaccines and that governments are 0:18:11.040 --> 0:18:13.800 giving access to treatments because they're afraid to speak out. 0:18:14.240 --> 0:18:16.240 But outside of that, I think the fact that we 0:18:16.359 --> 0:18:19.560 don't have a cure is a really big issue. You know, 0:18:20.000 --> 0:18:22.760 our colleagues in the hepatitis sea world, who we work 0:18:22.760 --> 0:18:25.560 with very closely they have a cure for hepatatus C, 0:18:26.119 --> 0:18:28.879 and they have faced tons of challenges in terms of 0:18:28.920 --> 0:18:33.440 access and getting governments and funders to prioritize that. Once 0:18:33.520 --> 0:18:36.320 they found a cure for hepatatus C, it really did 0:18:36.320 --> 0:18:39.679 become priority. And you can see countries and governments paying 0:18:40.119 --> 0:18:44.480 for hepsy cure and governments that are actually implementing hepatitis 0:18:44.520 --> 0:18:46.920 CE elimination plans. They're getting rid of all heps in 0:18:46.960 --> 0:18:50.560 their country. And it's wonderful. If we had a cure 0:18:50.600 --> 0:18:53.040 for hepatatis B, I suspect and I hope that we 0:18:53.080 --> 0:18:55.679 would see the same kind of excitement. I think the 0:18:55.680 --> 0:18:57.560 fact that we have really good treatment but not a 0:18:57.600 --> 0:19:00.960 cure is holding us back. However, I'm not sure how 0:19:00.960 --> 0:19:03.480 it's any different than HIV, right, so there's no cure 0:19:03.520 --> 0:19:06.760 for HIV. In fact, treatment for HIV and treatment for 0:19:06.800 --> 0:19:10.720 hept B are identical. You take antivirals forever essentially, and 0:19:11.160 --> 0:19:14.600 yet we see, you know, huge uptake and push to 0:19:14.640 --> 0:19:17.920 get everybody who is diagnosed with HIV on antivirals as 0:19:17.920 --> 0:19:20.680 well they should. I'd like to see that same excitement 0:19:20.720 --> 0:19:23.120 and prioritization to make sure that every person with hept 0:19:23.119 --> 0:19:26.840 B gets their antivirals as well, and I just think, 0:19:27.320 --> 0:19:31.359 you know, I'm not sure that people really understand the 0:19:31.400 --> 0:19:33.680 link between het B and liver cancer and the fact 0:19:33.680 --> 0:19:36.240 that one in four people with hepatized B will die 0:19:36.280 --> 0:19:39.040 if they don't get treatment. I mean, that's huge and 0:19:39.440 --> 0:19:42.080 if you've ever seen anyone die of liver cancer, it's awful. 0:19:42.560 --> 0:19:45.119 And if you can prevent it, you know, you absolutely should. 0:19:45.119 --> 0:19:47.280 But maybe we just aren't strong enough in our messaging. 0:19:48.000 --> 0:19:51.080 What do you think is the challenge in getting a 0:19:51.160 --> 0:19:52.840 cure for B? 0:19:54.040 --> 0:19:56.840 Great question, and it is something we spend a lot 0:19:56.880 --> 0:20:00.320 of time thinking about and talking about, I think as 0:20:00.960 --> 0:20:04.639 public health scientists and as bench scientists. So, hepatized B 0:20:04.760 --> 0:20:06.639 is a tricky virus, and one of the things that 0:20:06.640 --> 0:20:10.040 the hepatized B virus does that other viruses don't do 0:20:10.280 --> 0:20:14.159 is that integrates its DNA into the host genome. And 0:20:14.240 --> 0:20:17.520 so once a person has that happen, it's really really 0:20:17.560 --> 0:20:20.040 hard to get rid of. It's a it's a very 0:20:20.080 --> 0:20:24.200 complicated virus, and you know, we've made great strides. There 0:20:24.240 --> 0:20:26.880 are actually a number of drugs right now that are 0:20:26.880 --> 0:20:30.520 in phase three clinical trial, and some people are cured 0:20:30.560 --> 0:20:33.240 by the way their immune system just fights it off. 0:20:33.760 --> 0:20:35.720 It's just that most people aren't able to do that. 0:20:35.800 --> 0:20:37.359 And so what we have to figure out is for 0:20:37.400 --> 0:20:39.600 those people who are able to fight the virus off 0:20:39.640 --> 0:20:41.520 and be cured, you know, what is it that makes 0:20:41.560 --> 0:20:44.240 them special? And how do how do we work with 0:20:44.680 --> 0:20:47.560 targeting the virus and also boosting the immune system at 0:20:47.600 --> 0:20:50.600 the same time to make sure that people can get 0:20:50.640 --> 0:20:54.040 rid of the virus. I you know, I'm not unfortunately 0:20:54.600 --> 0:20:56.879 a bench scientist is not my or an immunologist, it's 0:20:56.920 --> 0:20:59.439 not my area. But my understanding is that it's just 0:20:59.480 --> 0:21:00.960 a really tricky virus. 0:21:02.000 --> 0:21:05.080 So, going back a bit to the discussion of stigma 0:21:05.119 --> 0:21:08.720 and discrimination, you talked about the ways that we can 0:21:08.960 --> 0:21:11.000 try to address those things or try to put in 0:21:11.040 --> 0:21:16.240 place measures to protect against discrimination or storytelling as a 0:21:16.240 --> 0:21:21.040 way to reduce stigma. How do we measure both the 0:21:21.080 --> 0:21:25.359 impact of those types of programs, whether it's like to 0:21:25.400 --> 0:21:28.840 reduce stigma and discrimination, and also how do we measure 0:21:29.520 --> 0:21:32.680 the impact overall of stigma and discrimination? Like what does 0:21:32.680 --> 0:21:35.520 that look like? What do those studies look like? 0:21:36.760 --> 0:21:39.480 Great question, So I think and we we do quite 0:21:39.480 --> 0:21:41.560 a lot of this now. Is measuring the impact and 0:21:41.600 --> 0:21:46.320 a lot of that is done qualitatively, and so doing 0:21:46.400 --> 0:21:49.720 things like focus groups and interviews, in depth interviews with 0:21:50.359 --> 0:21:53.040 essentially hundreds of people living with hepatitis BE around the 0:21:53.080 --> 0:21:57.480 world and asking really in depth questions, you are able 0:21:57.520 --> 0:22:02.040 to tease out how stagma and discrimination impacts people with 0:22:02.119 --> 0:22:04.119 hep B and then you publish on it, right And 0:22:04.200 --> 0:22:07.560 so we've done that, working with people living with hept 0:22:07.600 --> 0:22:11.119 B in multiple countries, in multiple languages, asking just really 0:22:11.160 --> 0:22:14.720 asking them, how does hepatize be impact your life? And 0:22:14.760 --> 0:22:19.080 we ask it from multiple perspectives, things like professional impact, 0:22:19.200 --> 0:22:22.919 social impact, physical impact, psychological impact, and you're able to 0:22:23.080 --> 0:22:25.080 do In doing that, you're able to tease out how 0:22:25.119 --> 0:22:28.840 stigma and discrimination impacts people. You know, quantitative data collection 0:22:28.880 --> 0:22:31.720 has a role too, and doing things like online surveys 0:22:32.320 --> 0:22:34.359 you may not get as in depth information, but it 0:22:34.400 --> 0:22:37.520 does give you a broad picture of perhaps how widespread 0:22:37.560 --> 0:22:40.960 the issue is and how important it is in different 0:22:40.960 --> 0:22:44.760 groups compared to others. And then I think in terms 0:22:44.800 --> 0:22:48.440 of assessing impact of programs, you know, if you're trying 0:22:48.480 --> 0:22:52.639 to impact discrimination, I think one of the keys to 0:22:52.720 --> 0:22:55.399 look for is policy change. If you're able to change 0:22:55.440 --> 0:22:58.879 policy at a governmental level, that's a huge win, and 0:22:58.920 --> 0:23:01.679 that's a really nice way of knowing whether your program 0:23:01.720 --> 0:23:04.359 or your project worked. But some of it is also 0:23:05.040 --> 0:23:08.640 looking at your data. So we have a hotline, it's 0:23:08.720 --> 0:23:11.240 essentially a helpline at the HEAB Foundation. We get about 0:23:11.240 --> 0:23:14.320 ten thousand people contact us a year. We document every 0:23:14.359 --> 0:23:17.680 single contact and what they're calling us about, so over 0:23:17.760 --> 0:23:20.600 time you can see if less people are calling you 0:23:20.600 --> 0:23:24.040 about stigma or discrimination. And for example, over the last 0:23:24.040 --> 0:23:26.320 three years, we have seen a huge uptick in the 0:23:26.359 --> 0:23:29.880 people who are reaching out to us about medication access 0:23:29.920 --> 0:23:33.040 being able to forward their medications. So sometimes that's the 0:23:33.160 --> 0:23:36.280 kind of data where it may not be as rigorous 0:23:36.359 --> 0:23:39.880 as sort of quantitative data collection, but it does give 0:23:39.920 --> 0:23:42.000