December 19, 2024 • 58 mins
In this episode, we are grateful for the opportunity to have a conversation with a panel of experts from Mayo Clinic about Hepatitis B and C, and their relationship with HIV. Given the disparity in how these viruses are infecting immigrant communities and African-American communities in Minnesota, we wanted to shed light on the work that is being done to better understand the prevalence of these illnesses in the African population, and how equitable research is leading to improved community-based education and intervention.
These three distinguished researchers-providers-educators share their lived experiences growing up in a healthcare system that's hobbled by a scarcity of resources, and where the intersectionality and comorbidity of liver and auto-immune illnesses has devastating effects.
In addition, we'll learn about:
- Current data regarding racial disparities in rates of Hepatitis B and C, and HIV,
- Endeavors to ensure equal representation of women and racial ethnic minorities in medical and scientific research and clinical trials.
- Outreach efforts to address cultural and social stigma around illnesses such as Hepatitis B, C and HIV, and
- Community-based networks to provide early detection, early intervention, and early treatment
- Additional Resources, including: the Center for Disease Control, the MN Department of Health, Mayo Clinic, and the local Somali Health Advisory Committee
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
()Welcome to Policy Connecting Communities. I'm Anab Gulaid, your host. Our podcast exists
(00:14):
()to create a space for state and local community members to come together and give voice to
()the real-time lived experiences of public health issues and solutions across cultural communities in Minnesota.
()It's produced by AG Consulting and Media, a health communications research and stakeholder
()engagement agency with a cultural and linguistic lens.
(00:37):
()Our mission is grounded in building authentic community engagement and partnerships and
()amplifying communication and health messages that resonate with hard-to-reach communities
()who often face disparities and difficulties in accessing essential services.
()In this episode, we are thrilled to have a conversation about Hepatitis B and C and their
(00:59):
()relationship with HIV.
()Given the disparities in how these viruses are infecting immigrant communities and African-American
()communities in Minnesota, we wanted to shed a light on the work that's being done.
()We have invited a panel of experts from Mayo Clinic who will shed their life and insight into the present risks and approaches needed in prevention and treatment.
(01:25):
()I am really excited for you to meet these three distinguished researchers, providers, educators, and learn about their journey into the healthcare field. Their stories will stick with you. December is HIV AIDS Awareness Month, a time to raise
()awareness of the impact of HIV AIDS globally. I want to specifically show the
(01:48):
()impact it's having in Minnesota through cultural lenses. A lot of progress has
()been made for HIV with the right detection and treatment, but the people
()living with HIV are still at risk for other infections such as hepatitis B and C. With us today is Dr. Essa
()Mohammed, an assistant professor of medicine. Dr. Mohammed has a PhD in biomedical sciences.
(02:13):
()His scientific focus is primarily the diseases overburdening historically underrepresented
()populations in clinical research and trials. We are also joined by Dr. Lewis Roberts, a professor in gastroenterology, cancer research,
()and a consultant in gastroenterology and hepatology at Mayo Clinic.
(02:34):
()We are also joined by Dr. Lino Vanqua, an assistant professor of oncology
()and a senior associate consultant within the Department of Medical Oncology at Mayo Clinic.
()Welcome to the podcast.
()Before we get deeper into the conversation, I would like to learn a little bit about the
()work that you do, your area of specialty at Mayo Clinic, and your journey a little bit.
(02:57):
()And any of you can start.
()Maybe Dr. Roberts, you want to get started first?
()Yep, Dr. Roberts.
()Great, certainly.
()Thank you.
()It's a great pleasure to be here.
()Thanks for the invitation.
()My name is Louis Roberts, and my area of specialty is hepatology, or the study of liver diseases.
(03:22):
()And within hepatology, I'm particularly interested in liver and biliary tract cancers.
()I originally grew up in Ghana in West Africa and attended medical school there, and then
()moved to the United States and obtained a PhD in physiology and biophysics at the University of Iowa, then came to Mayo Clinic.
(03:44):
()And at Mayo Clinic, I did my training in internal medicine, gastroenterology and hepatology, and cancer genetics.
()It's a pleasure to be here.
()I'm Lionel Fonkwa. I'm a medical oncologist here at the Mayo Clinic in Rochester.
()and I even self-specialize in the treatment of patients
(04:05):
()with the cancers of the gastrointestinal tract and the liver.
()And I also do research in that space.
()Born and raised in Cameroon, Central Africa.
()Came to the States probably about 20 years ago now.
()Did have been around for my medical training,
(04:26):
()Florida, Pennsylvania, and then eventually
()came to Mayo Clinic Rochester for my oncology training
()and joined the staff here in 2021.
()So I'm happy to be here and to contribute to this podcast.
()My name is Isa Muhammad.
()I'm a biomedical research scientist at Mayo Clinic.
()I did my PhD actually with Dr. Lewis Roberts
(04:50):
()on viral hepatitis liver cancer
()among immigrant populations in Minnesota.
()My work has been relating other disease pathologies
()back to the liver.
()Part of my postdoc was looking at sleep disorder,
()breathing, systemic inflammation,
()and cardiometabolic diseases,
()and how does that relate to the liver.
()And currently right now
()in the Alzheimer's Disease Research Center,
(05:12):
()again, trying to relate the brain back to the liver.
()I'm interested in doing research
()in historically underrepresented populations.
()Very much interested in interdisciplinary approaches
()to science and medicine,
()and making sure that we have enough representation
()of women and racial ethnic minorities in clinical trials.
()It's a pleasure to be here.
()I'm originally from Somalia.
(05:32):
()Thank you.
()Thank you so much.
()We're really excited, and we're so proud to hear the work that you're doing and the attention that's going to not only this area of work, but also the equity lenses that you are approaching.
(05:53):
()for education awareness so that providers also understand about how to go about this work.
()And I was just so blown away about the work that your team is doing,
()and that's why we wanted to have you here today.
()And I wanted to say thank you, Nisra, for making this happen
()and all the work that you've done behind the scenes to bring this team together.
(06:16):
()So I wanted to say that first. I want to also ask you a little bit about your interests. Let's start with Dr. Roberts.
(06:37):
()What interests you in this line of work? Thanks very much. That's a good question.
()I think my interest really started from when I was a medical student in Ghana,
()and on a couple of occasions,
()my professors admitted to a ward
(06:58):
()where we took care of patients,
()patients who were quite young and had liver cancers.
()And so it was intriguing to us
()that patients in their 20s and their 30s
()would be diagnosed with liver cancer. We found that these were patients with viral hepatitis B.
()And unfortunately at the time we had very little in the way of treatment to offer them. And we saw
(07:21):
()that they became quite sick and declined. And most of them would die within just a few months of their diagnosis.
()So in the course of my training, I ended up doing training that focused very much on liver
(07:44):
()diseases.
()And when I completed my training here at Mayo and my colleagues asked what area I wanted
()to focus on, I think it was natural from that history that I said, well, I'd like to focus
()on liver cancer because hopefully I can make a difference in a disease that has such an impact on young people in Africa.
(08:05):
()Thank you for sharing that. How about you, Dr. Konkova? How did you get interested in this area
()of or this line of work? Yeah, so I would say I'll go back to my really my early days.
()You know, I was raised in born and raised in Cameroon and just growing up in Cameroon as Dr. Roberts
(08:28):
()and Dr. Mohamed could probably attest
()in that part of the world,
()you really witnessed firsthand some of the challenges
()related to a healthcare system that's hobbled
()by this scarcity of resources and a lot of things.
()So from very early on, I could see how
()underserved populations could be affected by different illnesses.
(08:52):
()One that particularly hit me was the battle of my grandmother with stomach cancer or gastric cancer
()that she acquired in the background of an infection called H. pylori.
()And so it's a chronic infection that eventually led to the development of stomach cancer.
()And she fought and I witnessed her battle.
(09:16):
()Eventually, she lost that battle.
()I was supposed to be an engineer, but that really changed, impacted me in a way
()that it really redirected my career goals towards oncology, cancer research.
()So when I came to the States, it was kind of with that mindset
()that I wanted to be involved in cancer care.
()I eventually did my training in cancer care in medicine and eventually oncology.
(09:39):
()And then I specialize in liver, cancer of the GI tract.
()So I see cancer of the stomach, the liver and others.
()But even for the liver, liver cancer,
()as Dr. Roberts mentioned, a lot of patients
()in the continent, in sub-Saharan Africa,
()and here also, immigrant populations here
()get liver cancer in the background
()of chronic viral hepatitis.
(09:59):
()That's one of the risk factors for liver cancer.
()There are others, but for this particular population,
()Sub-Saharan Africa, Southeast Asia, that immigrate here,
()we also see that.
()So I see a lot of patients with liver cancer
()from that demographic that acquired it
()in the background of chronic hepatitis B
()or chronic hepatitis C.
()And it's a bit sad because those are preventable illnesses.
(10:23):
()There's a vaccine for hepatitis B.
()So, you know, and hepatitis C today,
()even if you have it, you could be cured from it.
()And there's treatment for hepatitis B,
()but I do see these patients,
()they never got vaccinated, some of them.
()Some of them had it, never knew they had the infection,
()and they were never screened,
()you know, for early detection of the liver cancer.
(10:44):
()And it was the same story that repeated itself
()over and over, and I see them at the end, really, of their journey, when there were so many opportunities to intervene,
()from prevention to early detection, and to even early treatment to potentially cure them from the cancer.
()And I said, you know, I could sit here and see them at the end of the journey, or I could try to intervene earlier
()and try to educate, participate in efforts, outreach efforts, to vaccinate, screen, and then put them into a pipeline for early detection and treatment.
(11:19):
()So that's part of the reason why I've been involved with these wonderful colleagues,
()Dr. Roberts, Dr. Mohamed, and a number of others in outreach to these communities,
()these at-risk communities, because the best treatment for cancer is prevention of the cancer.
()Absolutely. Thank you so much.
()Dr. Mohamed, how did you get interested in cancer
()and hepatitis work?
(11:40):
()Similar line of thought.
()It was personal.
()Three of my four grandparents,
()I never had an opportunity to meet them or see them.
()All three of them succumbed to what we call in Somalia,
()I gotta show, and you know, jaundice, liver disease,
()which they themselves or the family
()didn't know exactly what they had,
()but they knew it had to do with the liver.
(12:03):
()My remaining grandfather, who I grew up with,
()who's today marks the 17th week of his passing,
()may God have mercy on him,
()had both hepatitis B and hepatitis C.
()However, somehow his body figured out a way to cope with it.
()And just growing up in Rochester,
()I've seen a lot of the elders who were at the mosque,
()for example, a good chunk of them had passed because of the liver.
(12:28):
()So when you ask, why did Uncle so-and-so die,
()people will say it's because of the liver.
()Why did Uncle so-and-so die?
()Because of the liver.
()But no one really knew what about the liver
()that they actually died from.
()So when I decided to do my PhD,
()was actually at a community event
()that Dr. Roberts, Nasra, and Dr. Shitter were at,
()that they were talking about screening for hepatitis B
(12:50):
()and just providing education to the community.
()And it was at that time that I said, okay,
()maybe perhaps I want to work towards understanding why this
()disease is actually silent within this population.
()And when it does show, it's quite aggressive.
()I've even had individuals who were my age at the time,
()a gentleman who had passed now, he was 18 years old
()at the time of his passing, who had hepatitis B at you know during birth and you know going to school with him?
(13:17):
()He would be missing school or classes during middle school and even high school
()But we didn't know why he would miss it, but it wasn't until we were at least you know
()Sorry, I realized that he had
()Fluid in his abdomen
()It was at the mosque ask Ali during Ramadan that I asked him hey
()In the last 10 days when we were praying,
(13:38):
()what is going on?
()I've known you for some time.
()And he told me that he has hepatitis B infection
()and he has liver cancer.
()So because of all these different experiences,
()helped me inform that do you want to do some research
()within the space and then figure out how,
()like Dr. Fonko had mentioned,
()a lot of these patients come and we detect them
(13:59):
()when their disease is very advanced
()and we have very minimal amount of intervention that we
()can provide them, whether to cure them or even to provide additional quality of life
()in whatever is remaining of their life.
()But how do we make sure that we can capture them earlier on?
()And when I started my PhD, one of the things that we talked about with Dr. Roberts was
()I don't want to do a conventional PhD.
(14:20):
()I want to be able to go out to the community and to be able to see what the needs are for the population, both from a culturally societal standpoint, but at the
()same time, from a disease standpoint, how it's been transmitted and identifying these
()patients earlier on and link them to care.
()So this is my experiences that lured me to it.
()Thank you so much.
(14:41):
()You've all mentioned that you are looking at impacting the community that's here with
()regards to early intervention, early detection, early treatment,
()because you know the difference it makes from the outcome for people
()who get infected in any of these diseases.
()We live in a country that has a very advanced healthcare.
(15:05):
()You work at one of the best healthcare system in the world that other parts
()of the world come here for help.
()But over and over again,
()I hear, especially in our communities of color,
()communities from Africa,
()coming to clinics like Mayo Clinic,
()last stage of their life.
(15:27):
()The doctors, like you said, they can't help.
()What are the trends that you are
()learning from our communities in Minnesota that you are seeing
()are infected in these diseases.
()And is there, I mean, are you surprised
(15:48):
()about the data that you're noticing about the trend?
()Is there, are you seeing in the research,
()because I've noticed the research that Shira was doing
()with the hepatitis when I first noticed the work
(16:09):
()that was going into the Somali community, for example,
()I think it was almost, I would say maybe 10 years ago.
()What are some trends that you're noticing
()that is letting you to see people are,
()the outcome of the individuals who have this illness is improving compared to when
(16:32):
()they didn't have access to services? Or like when they were back in Africa, are you noticing that
()it's getting better over time? And what are you learning from the research that you're doing?
()So, as Issa described, when Dr. Shire first moved here to Rochester, it was really interesting
(16:52):
()for us because what we found was that he had recently graduated with his PhD from the London
()School of Hygiene and Tropical Medicine, had moved to Minnesota because his family was
()here.
()And I think once people in the community became aware that he was working at Mayo Clinic and
(17:13):
()doing research in this area, people would approach him quietly and say, you know, my
()uncle has this liver disease or my cousin has liver cancer and can you help arrange
()the appropriate appointment so that we can get good care for them.
()And I think it became clear that at a certain level, the community was calling out for help in the
(17:42):
()ways that communities do, which is they try to find someone that's trusted within the
()community that they think can advocate on their behalf.
()And so after we saw this pattern, we decided, well, let's see if we can understand on a
()more broad scale what's happening in this community, because it can't be just that it's a few cousins and
(18:05):
()uncles. It seemed like it was something that was more widespread.
()And so we actually got ethical approval to look in the records at Mayo Clinic to see if we could identify people of Somali descent or African descent and ask,
()tested for viral hepatitis and when they were tested, what were the results? What proportion
(18:28):
()of them had positive results? And what we found was quite high levels of both hepatitis
()B and hepatitis C in the Somali community, or individuals that were being tested. And
()I think what became clear to us was that this was perhaps something that was more widespread in the community, but if the physicians
(18:55):
()or people in the healthcare that were seeing these patients were not aware that this was
()a significant problem, then they might not do the testing necessary so that everyone
()was tested and screened for these hepatitis viruses, and so that if they needed treatment, they would be enrolled in treatment.
(19:17):
()So I think part of it was just recognizing that it's a particular problem in this community,
()in communities of African descent broadly, and then trying to confirm that if this was
()the case and if this was happening also in the wider community, not just people who are being seen at Mayo Clinic, but people
(19:42):
()who were in the community broadly. And that ended up being a study that Dr. Sherry started
()and that Dr. Isa Mohamed actually completed for his PhD, and maybe he can talk a little
()bit about that. That's that process of saying, okay, it's not just that we are seeing people in the hospital or clinic setting, but when we
(20:05):
()go into the community and we recruit people in the community, we also see these high rates.
()Yeah, absolutely.
()And I'm also wondering, you know, when you had Dr. Shirer and it sparked this interest
()when people found out what he was doing and they start telling their story.
()And I think that's a common thing in like communities where once they find out something
(20:29):
()that either you're going through or you're working in that field, they'll tell you how
()that affects their life. They come forward to share their story with you. Was that,
()you know, in the community you're from, Ghana and Cameroon and other parts of Africa, do you find similar things that kind of said,
(20:53):
()oh, we need to look into this,
()the same way that it started with Dr. Shearer?
()Was there, has that expanded to look at
()other communities of color
()and what did you learn from that data?
()Yeah, maybe I could comment.
()As an oncologist, obviously I'm on the other end,
()but the data that Dr. Roberts mentioned
(21:13):
()from Dr. Shears and Dr. Mohamed's study really established for us
()or proved to us that, showed to us that there's a higher incidence of this chronic hepatitis
()B in this at-risk patient population, the Somali community.
()You know, when you look at the data for hepatitis B and hepatitis C, you know, the incidence
(21:35):
()is higher for black African-Americans, the large majority in the state being Somali, but also in, you
()know, patients from Southeast Asia, Native Americans, and also Hispanics, compared to
()their, you know, white counterpart.
()Well, guess what?
()That translates into a higher incidence of mortality from liver cancer.
(21:59):
()So it's not surprising that black or African-American, again, the majority of which are these African immigrant
()population, have a five-fold risk of dying from liver cancer, you know, compared to their
()white counterparts.
()And it's not just a Somali, you know, problem.
()You know, it started with Somali.
(22:19):
()Actually, we were joking about it at the last meeting that we should, you know, there's
()a Somali health advisory council, that they should rename it the Immigrant Health Advisory
()Council, because really the same problems that we're seeing in the Somali community
()are applicable to the Liberian community, the West African, Nigerian, Cameroonian, you
(22:42):
()know, it's really the same.
()The epidemiology is very similar.
()So and that's one reason why we need to get together as a coalition to focus on that broader at-risk patient population because really,
()there's a lot of overlap. And maybe Isak can add to that.
()And your question regarding are these problems in other populations, part of the work that we've
(23:03):
()done, we actually did expand to other African populations, Ethiopian, Kenyans, Liberians,
()as part of our study. However, some of the data that we've been published in terms
()of understanding what the disease is, what do you even call the disease, do
()people know where to go get treatment or care, was overlappingly, overwhelmingly
(23:27):
()the same. There were some concerns with what the disease is, this fear of making
()sure that if I do share the disease status that I have, will I be neglected
()from the community, would I be cut off from the parcel of society?
()Some of these concerns, you know,
()were repetitive among the different populations.
()And, you know, one of the things that we would hope to do
(23:48):
()moving forward is to maybe perhaps restart
()some of the efforts that we've been doing
()in terms of screening and the partnerships that we've had
()built with various community-based clinics
()that are owned and run by physicians or clinicians
()coming from these respective populations that has helped
()us in regards to build the trust and the foundation needed, but also at the medical side of things,
(24:13):
()be able to help a network of being able to take a patient from the community's perspective
()and then having them see specialists like Dr. Roberts or Dr. Konkua that would be able
()to be able to help and train.
()So that's something we're actually currently working on
()right now is building a large African network
()on viral hepatitis and liver cancer in the state of Minnesota
()and we hope to do that soon.
(24:36):
()Yes, and I think you had asked a little bit about what
()the conditions were in Africa, in Sub-Saharan Africa,
()and I think it's very much similar.
()That as we've done more and more studies
()in different countries, we recognize
()that the rates of viral hepatitis are quite high. Hepatitis B tends to be of
()the order of sometimes 8 to 10 percent of the population as chronic hepatitis B. For
(25:00):
()hepatitis C, often it's around 2 to 3, sometimes even up to 5 or 6 percent of the population
()as chronic hepatitis C. So these are common, and I think when we delve into what's happening in Africa, what we recognize is that much of the disease
()there is undiagnosed.
()So our estimate, for example, is that of all the people with chronic hepatitis B in Sub-Saharan
(25:24):
()Africa, only less than 2% are aware that they have the diagnosis or they have the infection.
()And even here in the United States where our systems are more mature in terms of medical systems. We have the recommendations from
()the U.S. CDC, the Centers for Disease Control, that all adults should be screened for Hepatitis
(25:47):
()C, that all adults should be screened for Hepatitis B. We find that there's a substantial
()proportion of people with these infections who do not know that they have them. So I
()think that's one of the messages that we are trying to bring forth.
()That's the importance at the primary care level,
()at the public health level, that people are tested
(26:11):
()for these infections for awareness.
()And if I may add to that, that's a very important point
()and something that I think I realize is, you know,
()you mentioned, yes, we are at the Mayo Clinic,
()the best hospital system, supposedly, this academic tower,
()but yet we see these patients that can't get the benefit of it.
()And so access to health care goes beyond just providing care.
(26:36):
()And that's part of the reason why we're doing all of this outreach educational effort,
()because if the patients don't see the value, the community doesn't see the value,
()they cannot benefit from the technology, the new drugs that we are developing.
()So it's very important to raise awareness, educate,
()get people to get the right care, routine primary care,
()and that's how they will eventually get into
(26:58):
()the best treatments and benefit from it.
()Otherwise, we're just gonna widen that gap,
()that disparity gap between the minority populations
()and then their white counterparts.
()Yeah, that makes sense.
()Before we get into the looking at the co-infection of hepatitis B, C, and HIV.
(27:23):
()How common are these diseases, HIV, B, and C?
()And then what's the most common mode of transmission in these diseases?
()Maybe I'll start us off with that. So the rates of these diseases vary by population,
()and even within the different populations, by different types of risk factors that people
(27:43):
()may have. I think broadly what we see if we look at communities from sub-Saharan Africa,
()you probably have rates of hepatitis B that range from around 5 to 10, sometimes 12 percent.
()That compares to, if you look at the white population in the United States, rates of
(28:03):
()maybe 0.2 percent. So you may have two out of every thousand people of white or European
()ancestry with viral hepatitis B, but then if you take African immigrants, you may have 10 or 12 out of every 100 people
(28:31):
()that have these infections. So quite a wide discrepancy. For Hepatitis C, the general US
()population, we think it's probably about 2% of individuals that have Hepatitis C, whereas in
()the immigrant African communities, we have a range again of, it could be around 2%, but it can range
(28:54):
()all the way up to around 6% of individuals with hepatitis C.
()I think HIV, of course, is also to some degree dependent on the communities. We have some
()communities in southern Africa, for example, where we have very high rates of HIV of the
()order of 20% of the population of the adults in some of those communities having HIV, whereas if you
(29:18):
()go to other parts of Western Africa, for example, HIV rates are only about 1% of the community,
()so quite wide ranges.
()And these, of course, have to do with sometimes the risk factors for each of these diseases.
()Hepatitis B tends to be transmitted around the time of childbirth.
(29:39):
()So around the time of childbirth, if you have an infected mother, then that infection can
()be transmitted to the child, the infant, either at the time of birth or in the first few years
()of life, usually by the time the child is about five years of age, they may have acquired
()that infection.
()And Hepatitis B can be prevented within the vaccine.
(30:02):
()We give the birth dose of the vaccine,
()and then we follow it up with additional doses
()from around six to 40 weeks after birth.
()And we've shown that that combination can be very effective
()in preventing transmission from mother to child.
()Another important component is identifying mothers
()who are positive for hepatitis B, if they have high viral loads or they have
(30:30):
()characteristics that suggest they'll have a high viral load, we can treat the mother in the last
()three months of pregnancy. That can reduce the rate of the hepatitis B virus in their blood, and
()that can substantially reduce transmission as well. And that brings me – I'll mention this
()mentioned this concept of what we call triple elimination, because in terms of the infections
(30:54):
()that are transmitted commonly from mothers to their children, the three commonest ones
()are hepatitis B, HIV, and syphilis. And so the World Health Organization and many public
()health agencies around the world have come up with this idea of triple elimination, which is that pregnant women should be tested for all three infections,
(31:17):
()hepatitis B, HIV, and syphilis.
()And then we should have integrated programs so that we treat mothers and we prevent transmission
()to children of these diseases.
()Yeah.
()And maybe, in fact, that was those great kind of overview, Dr. Roberts.
(31:38):
()Maybe if I could add to that, I think I highlighted some of the disparities.
()Just bring it closer to home here in Minnesota for hepatitis earlier.
()As it relates to HIV, there are also, you know, disparities.
()I mean, if you look at just the state of Minnesota, black Minnesotans make
()up for probably about 5% of the population.
()But when you look at the new HIV cases yearly, the most recent one data shows that they actually account for about 42% of
(32:08):
()the new HIV cases.
()So you have a demographic, a group of black people who make up 5% of the state population
()yet make up account for almost 50% of the new HIV cases.
()So this is again, kind of bringing it closer to home and seeing why this is important.
()That's why we have these disparities. And if you look at Hispanics, for example,
(32:28):
()they also make up 5% of the population, the state population, but account for about 15%
()of new HIV cases. So again, bringing it up closer to home, even in HIV, just like in hepatitis B and
()C, black people, minorities disproportionately shoulder the burden. So Dr. Roberts has talked
()about some of the transmission modes. Dr. Kung Fu has talked about, you know, the
(32:52):
()actual numbers here at home. This is why we should continue pressing forward in terms
()of, you know, making the addressing of hepatitis B, C, and HIV a multifocal point where we
()have or at least need multiple perspectives and viewpoints to be able to push for early
()detection, early treatment, and early education. By having this, you know, a interdisciplinary group of individuals, whether it's policy makers, advocates, etc.,
(33:19):
()as well as the clinical and research community working together in partnership with the community,
()we can address some of these issues that we are seeing here and maybe stop the needless deaths that we are seeing overall.
()Yeah, that makes sense.
()I mean, hepatitis B and C and cancer research, how did HIV become a focal area of need or
(33:44):
()area that needs to be highlighted?
()And I think that the data that you shared, people might be surprised about that.
()you know, how do we, as a black people,
()carry the burden of being 5% of the population
(34:05):
()but still have all this higher infection of HIV.
()And given the connection between these diseases,
()the outcome of that individual that's going undetected
(34:26):
()of having hepatitis and then now having an HIV,
()their ability to live in a very treatable life
()is going to be much smaller
()and it makes it harder to help those individuals.
()And I think that's what,
()I'm sure that's one of the things
()that make your work a little bit harder even to be able to see the lack of detection and treatment
(34:59):
()for hepatitis and then have this higher level of HIV infection that's getting basically
()so despair when you compare with other populations.
()So I was wondering if you can kind of, how do you, how did that data come to your attention?
(35:26):
()As you're going about and doing HIV work, how do you notice that this whole HIV connection,
()especially for people of color, and this high disparity that exists and high level of infection that exists.
()And where would you attribute as the, I don't want people who are listening to think that
(35:51):
()this community is taking a higher risk. That's why they're ending up where they are,
()given that the screening, all these things that can happen in the first place to get the vaccines to treat the individuals,
()is also a big reason why we have the numbers that you see.
()So I was just wondering if you can kind of talk about that HIV and the complications that cat is
(36:19):
()when an individual who has hepatitis is now infected with HIV and is not getting the treatment that they need
()for both of these diseases.
()Yes, perhaps I'll start with just describing
()some of the issues that can occur with the co-infections.
()Because we talk about these three infections,
(36:40):
()hepatitis B, hepatitis C, and HIV,
()together in part because all three can be transmitted
()to blood-borne needs as well.
()And we know actually of the three, it's really that the likelihood of
()being transmitted through blood is in that sequence. Hepatitis B is the most transmissible,
(37:02):
()H. hepatitis C is the next, and then HIV. And so if people are in circumstances when,
()for example, a number of years ago, before testing was available for either Hepatitis
()C or for HIV, people would be receiving blood transfusions, for example, that had not been
(37:22):
()tested for those viruses.
()And so if you received a blood transfusion that had not been tested for those viruses,
()then you could have the virus transmitted to you without your having any awareness of
()it. And we still see women, for example, who when they were younger had a delivery and
()needed a blood transfusion after delivery and we find out now that they have HIV or
()Hepatitis C or both. So I think it's important to recognize that that's a major factor. And
(37:48):
()then there were times and in some places where they...
()The use of, for example, sterile medical equipment has not been perfect.
()So you find that sometimes needles have been reused or they've been inadequately sterilized.
(38:13):
()And we find, for example, that their
()likelihood of having hepatitis C is related to how many years they lived in a refugee
(38:35):
()camp before they moved to the United States. And we know in refugee camps often the medical
()care is very rudimentary. They don't have a lot of access to good care. So you can see
()that people have been in can be associated with a higher risk of transmission of these
()infections.
(38:56):
()And then the other dimension that's important is to recognize that sometimes the drugs that
()are used to treat the infections are similar.
()So, for example, hepatitis B and HIV, sometimes the same drug is used to treat both infections.
()So it's really important if we are diagnosed someone with HIV that we test them for Hepatitis
(39:17):
()B as well, because if they test positive for Hepatitis B, then the regimen that they are
()placed on for their HIV treatment should also be one that treats the Hepatitis B. Otherwise,
()you stand the risk of not getting good control of the HIV because there's this other infection that is active in the person.
(39:41):
()And it's not uncommon to see patients who have both infections be at higher risk for
()developing liver cancer. And when they develop liver cancer, they tend to die much more quickly
()if they are not on treatment. So I think those are areas where the intersection between the
()two infections makes a difference as well.
(40:03):
()Yeah, I completely agree with Dr. Roberts.
()Maybe I'll add, I mean, as you mentioned, the mode of transmission is the first commonality here.
()Bloodborne pathogens, you know, through blood products, sexual transmission, sharing needles.
()But you brought up an important point to not as related to the stigma, you know.
(40:23):
()So there are other ways of transmission for people who not necessarily did not have an unhealthy
()lifestyle by no fault of their own.
()Thinking of patients who are long-term hemodialysis, they just have a higher risk just because
()of the nature of dialysis of catching an infection, especially if they're in a certain setting
()where the screening for these infections is not the greatest.
(40:48):
()Occupational exposures, you know, healthcare workers could get it that way as well.
()I think Dr. Robert touched on, you know, mother to child transmission as well.
()So I think we need to recognize that it's not just always linked to unhealthy lifestyle or behavior.
()Sometimes it's just the nature of the environment that we live in.
(41:08):
()And, you know, they all affect the liver.
()You know, the liver, you know, liver disease,
()the progression of the liver disease,
()most of the time cirrhosis is the term we use.
()And someone who has a co-infection with HIV
()and hepatitis B or C, you know,
(41:31):
()the progression is gonna be faster.
()The progression of the liver disease
()and ultimately the progression to cancer.
()So it's very important, as Dr. Roberts mentioned,
()to when you're diagnosed with HIV,
()to be screened for hepatitis
()and to be treated appropriately,
()because also, I think for hepatitis C,
()you can actually have a progression of the infection
(41:52):
()if you don't treat the HIV.
()So meaning the virus will multiply faster
()if the HIV infection is not under control.
()So it's really important once diagnosed
()to be screened for these diseases to be treated appropriately
()to prevent worsening of the liver disease and ultimately development of the cancer?
()I think for every disease we have to make sure that we have a lens of humanization.
(42:13):
()We have to give, not look at the disease or the rates of the disease burden as someone
()committing some sort of mischievous act, but humanizing their lived experiences, understanding the conditions in which this came about,
()understanding that they have rights, they have needs, and they also have aspirations as human
(42:34):
()beings. There was a gentleman who I met a few years ago who had had experiences in the criminal
()justice system himself, and had difficulties, but now has came out of the situation that he was in,
()and now is using those experiences to build a movement
()called Humanize My Hoodie.
()Oftentimes we have perceptions of individuals
(42:56):
()happen to be of African origin, for instance,
()having a hoodie means that they're no good,
()that they're up to no good.
()But going from that element of his movement,
()Humanize My Physiology, we have to understand that
()we as human beings also have rights in the healthcare
()system, henceforth why we should be represented
()in all the aspects of what medicine
()looks like, making sure that we have an environment where we can be providing supportive treatment
(43:22):
()access, reducing stigma, and more importantly, empowering people to be their own active leaders
()for their own disease and health and wellness. Hopefully, all of this combined can help us to
()provide the best passionate care that we can provide and, you know, be able to improve the lives of millions.
()Thank you so much for sharing those stories.
(43:42):
()I want to make sure while I have you on the call
()that I ask you the importance
()because we want to be able to talk to our audience.
()We want people to be listening and to move the needle
()in terms of making sure that we're reducing the risk
()and we're improving the outcome
()of those who might have already been infected,
()whether it's just the hepatitis B or C or combined with HIV, right? So I want to ask you
(44:08):
()about your recommendation in screening and monitoring. And if somebody thinks they are at
()risk of any of these, you know, how do they get the help they need? And then how do we reduce the risk?
()So I want to make sure I get you to answer those questions
(44:31):
()before we end the call.
()So let's start with what's the recommended
()screening and monitoring?
()And then we'll move on to the risk, producing the risk.
()Maybe I can talk about the screening part.
()I think, number one, it's multifaceted.
()There has to be a partnership between the community, the academic centers, and various
()other stakeholders, whether it's the state, local government, et cetera, making sure that
(44:55):
()there is some sort of educational program that people can understand what these diseases
()are, how people are able to get it transmitted, what are some of the opportunities that are
()available to them for treatment and care or even screening, and also going to where people
()live instead of accepting or requiring them to come to you in the hospital,
(45:16):
()the clinic setting, we as academic medical researchers, et cetera,
()should be able to go to the community.
()And some of the work that community advisory boards, for instance,
()like the Small Health Advisory Committee has done was laid a foundation for that type of work
()to ensure that the community is the one that leads the herd
(45:41):
()to what direction they would like us to go.
()The rest of us are providing the support that we can.
()Not that I'm saying that we are providing
()the community knowledge
()and that they don't give us anything in return.
()We're actually learning how to reimagine
()what medicine and healthcare should be in the future
()and how we should make it in a way
()that we could decentralize care,
()that people can get the care that they need
(46:03):
()in the comfort of their own home,
()and that they do have the respect and decency
()and the humanity of their living essence
()is taken into consideration
()in terms of how our approaches are moving forward.
()Yeah, absolutely.
()I think that the education is very big, important.
()I was really happy to see the work
(46:24):
()that the Somali Health Advisory Committee has done to educate and to bring awareness
()about liver, liver, awareness about liver, hepatitis and liver cancer and the videos,
()the translated videos, work that's available on their website.
()We'll make sure we include, once we drop this episode, a link to those educational events and future events or people to follow the work that the committee
(46:55):
()is doing and the research articles that work that you have published as well. Let's talk
()a little bit about if someone thinks they are at risk for hepatitis or HIV, how do they
()get tested?
()Part of the reason we do the community awareness is just so people are aware that if they don't know what their status is, that it's important
(47:19):
()that they ask their healthcare provider. Now, we know that from the healthcare provider
()side the U.S. Centers for Disease Control has recommended that everybody should be tested
()for HIV. Every adult should be tested for Hepatitis B. Every adult should be tested
()see. And if people think that they remain at risk for any of these infections, they
(47:41):
()should be tested. So it's important, I think, that in the community also we are increasing
()the community awareness and we do this through health fairs and other events, through social
()media, but that if a person thinks, well, I'm not sure what my status is, and if they think that they might have any particular risk factors, that they ask
(48:07):
()their health care worker or their physician or their primary care physician or their physician
()assistant or nurse practitioner, they say, can you please test me?
()Because it may be sometimes I think the health care workers look at a person and think, well,
()I don't think they are at risk because they look healthy.
(48:28):
()And we know, of course, that for each of these diseases, it is often a long period of time when people
()who have the infection look healthy and it's only at the end stages of the disease that they become very sick.
()So people who have these infections don't have to look unhealthy, and it's important if you don't know what your status is, that you ask your health care
(48:51):
()worker, your primary health care physician or nurse practitioner,
()can you please test me?
()Yeah, and I would even add that if you have access to health
()insurance, do your annual checkup
()and just ask for your full checkup.
()Include that, because you just never know where the risks are.
()And we have to, especially in the African community,
(49:13):
()we have to get comfortable doing our preventative care
()as much as cure and stay and establish a primary provider
()who knows about our health, who can take us serious,
()who can understand if we're not feeling
()the way we were feeling, we're not feeling healthy
()and give us the extra screening or the health education
(49:36):
()that we need, that patient advocacy is important.
()We don't always have patient advocacy.
()So I think I really,
()that's the message I have for our communities.
()Don't underestimate your annual checkup.
()Don't underestimate about advocating for your health,
()especially when you end up having something
()that requires additional screening and follow-up.
(49:58):
()And I think that's where our community gets dropped off.
()Often you see someone who has a concern for health, the blood work that came back,
()biopsy that came back, and there's supposed to be a follow-up and all this treatment and all this
()work that's supposed to happen, and then it just sort of disappears. And then that doesn't help
(50:19):
()anybody. So I definitely wanted to add my two cents in there and just say get your health care,
()healthcare, advocate and work with organizations and a doctor who cares about you, who understands
()you, who will take you seriously. And then I wanted to say how else from a professional,
(50:40):
()obviously from the work that you do, you're the expert, how would we reduce the risk of
()hepatitis and the co-infection of hepatitis and HIV? What are actionable steps that the listeners can take with their patient, advocate, or healthcare, or policymaker?
()Yeah, maybe I'll get started on this. I think I'm going to support the previously made points about knowledge.
(51:03):
()Knowledge is power, really. I'm the oncologist, so I see these patients at the end of the journey.
()But really, if they are – we raise awareness, they are educated, they check and ask for their status,
()they could be screened, they could be vaccinated,
()and then for those that unfortunately have the disease,
()they could potentially be cured if you have hepatitis C.
(51:25):
()If not, even with HIV today, you can be on treatment
()that gets you to undetectable viral load.
()You can live with this as a chronic illness.
()So even if you're found to have the disease,
()we can control it and help you live with it. If for the unfortunate
()reason that you get the cancer, you could be, you know, you get the disease, you could
(51:46):
()be screened for cancer, you could be monitored and screened for liver cancer. And that's
()usually a combination of liver ultrasound and a cancer marker called AFP every six months.
()So twice a year for patients who are at risk, who have liver disease, who have chronic hepatitis B or C or cirrhosis.
(52:07):
()And that's to make sure that if you develop cancer, we catch it early and potentially
()cure you from the cancer.
()So as you can see, knowledge is the common factor here, common denominator here.
()If you know what to do, you know your steps from a lifestyle standpoint, from a prevention
()vaccine standpoint, from a screening and monitoring, that could be the difference maker,
()and that's part of the reason why we do a lot
(52:28):
()of this outreach work.
()Thank you so much.
()Where can someone who wants to know more
()about this issue get reliable resource,
()especially when it comes to translated audio or in writing?
()I talked earlier about the work
()that the Somali Health Action Committee,
()is it Action Committee?
()Yeah, Advisory Committee.
()Advisory, Somali Health Advisory is doing tremendous amount of work in promoting this,
(52:54):
()the education aspect, awareness, the patient advocacy, the provider, cultural competency.
()Are there more work that you're doing that you want to see, because of how devastating the infections are, how bad the disparity is,
(53:23):
()where can we add more, where can we direct people to get more education, besides the work that the coalition is doing,
()to help promote that, like having you here today and shedding a light and talking about
()the importance of this. We want to be able to help people provide as much outlays that
(53:45):
()they can learn and educate about themselves and about their patients that they serve.
()Yes, there are excellent resources on the website for the US Centers for Disease Control,
()for example, for viral hepatitis and for HIV. So that's a good resource. You mentioned already the Somali Health Advisory
(54:06):
()Committee or SHAC, that is S-H-A-C. So SHAC, if you search for SHAC, you'll find information,
()you'll find a number of videos and additional information. We also try on social media to
()post information about webinars that are underway. Just within the state of Minnesota, we have the Minnesota Department of Health
(54:31):
()that also is quite active in efforts to improve the public health of individuals. So we encourage
()people to look for these and other sources of information. Many of the medical centers in Minnesota, for example, will have information on their websites as
(54:54):
()well that relates to viral hepatitis and HIV.
()Thank you so much for joining us today.
()We appreciate all the work that you're doing.
()I would like to invite you back when you have research publications or new data that's coming
()out or even if you have a study that you worked on that we can have a little bit of more conversation about. Obviously,
(55:16):
()the hope is that through this research and through these efforts that we want to see a downward
()data rather than, you know, expanding the disparity. And I think it's possible.
()And I appreciate the attention and the focus and the cultural lenses that you bring to your work.
(55:42):
()And just been really privileged to have you on this podcast today.
()Thanks very much for having us.
()Thank you. Thank you for having us. Thank you.
()Thank you, Adam and company.
()The work you guys are doing, too, is needed,
()and you guys are helping us to transform the narrative, right?
(56:04):
()And have some level of ownership of the narrative.
()We don't wanna talk about the negativity or the have-nots,
()but more of the opportunities that we can go ahead
()and build something bigger.
()So we really appreciate what you guys are doing
()and the work that you guys are helping us to disseminate.
()Absolutely, and I think that the community strength
()is strong and we're not defined by these numbers
(56:25):
()by any chance.
()There's so much that I know with the right messenger and the right information and trust.
()Our community is not...
()They take that information in and they act on it.
(56:46):
()All communities, whether they're rural community, urban community, African-American community, African community, there has to
()be a space where their intentionality, the delivery, the access, the screening, the information
(57:07):
()resonates and they're aware of it.
()And I think with those combinations, they will turn the corner because we understand our health is very important
()to us and no one wants to get sick, right?
()Every African, every community member dreams the most best possibility for their children.
(57:29):
()Every child wants to see their, every parent wants to see their child grow up and have
()And that's something that I think we would hate the disparity to be because we didn't have the resources.
()We didn't have the opportunity to help the community when we could help the community.
()And that's why your work is important.
(57:50):
()And thank you so much.
()I hope you had a great Thanksgiving and great holidays coming your way.
()I'd like to stay in touch.
()Thank you, Nasra, for making this happen.
()And thank you, everyone.
()Bye now.
()Thank you.
()Thank you.
()Thank you. Bye bye.
()If you enjoyed this episode, don't forget
()to subscribe, share, and leave a review.
()We will see you next time
(58:12):
()on Policy Connecting Communities.
()Policy Connecting Communities
()is produced by AG Consulting
()and Media. The Policy Connecting
()Communities podcast, produced
()by AG Consulting and Media,
()by AG Consulting and Media,
()highlights the public health efforts and strategies used to empower and grow community and policy development.
()Welcome to Policy Connecting Communities. I'm Anab Gulaid, your host. Our podcast exists
(00:14):
()to create a space for state and local community members to come together and give voice to
()the real-time lived experiences of public health issues and solutions across cultural communities in Minnesota.
()It's produced by AG Consulting and Media, a health communications research and stakeholder
()engagement agency with a cultural and linguistic lens.
(00:37):
()Our mission is grounded in building authentic community engagement and partnerships and
()amplifying communication and health messages that resonate with hard-to-reach communities
()who often face disparities and difficulties in accessing essential services.
()In this episode, we are thrilled to have a conversation about Hepatitis B and C and their
(00:59):
()relationship with HIV.
()Given the disparities in how these viruses are infecting immigrant communities and African-American
()communities in Minnesota, we wanted to shed a light on the work that's being done.
()We have invited a panel of experts from Mayo Clinic who will shed their life and insight into the present risks and approaches needed in prevention and treatment.
(01:25):
()I am really excited for you to meet these three distinguished researchers, providers, educators, and learn about their journey into the healthcare field. Their stories will stick with you. December is HIV AIDS Awareness Month, a time to raise
()awareness of the impact of HIV AIDS globally. I want to specifically show the
(01:48):
()impact it's having in Minnesota through cultural lenses. A lot of progress has
()been made for HIV with the right detection and treatment, but the people
()living with HIV are still at risk for other infections such as hepatitis B and C. With us today is Dr. Essa
()Mohammed, an assistant professor of medicine. Dr. Mohammed has a PhD in biomedical sciences.
(02:13):
()His scientific focus is primarily the diseases overburdening historically underrepresented
()populations in clinical research and trials. We are also joined by Dr. Lewis Roberts, a professor in gastroenterology, cancer research,
()and a consultant in gastroenterology and hepatology at Mayo Clinic.
(02:34):
()We are also joined by Dr. Lino Vanqua, an assistant professor of oncology
()and a senior associate consultant within the Department of Medical Oncology at Mayo Clinic.
()Welcome to the podcast.
()Before we get deeper into the conversation, I would like to learn a little bit about the
()work that you do, your area of specialty at Mayo Clinic, and your journey a little bit.
(02:57):
()And any of you can start.
()Maybe Dr. Roberts, you want to get started first?
()Yep, Dr. Roberts.
()Great, certainly.
()Thank you.
()It's a great pleasure to be here.
()Thanks for the invitation.
()My name is Louis Roberts, and my area of specialty is hepatology, or the study of liver diseases.
(03:22):
()And within hepatology, I'm particularly interested in liver and biliary tract cancers.
()I originally grew up in Ghana in West Africa and attended medical school there, and then
()moved to the United States and obtained a PhD in physiology and biophysics at the University of Iowa, then came to Mayo Clinic.
(03:44):
()And at Mayo Clinic, I did my training in internal medicine, gastroenterology and hepatology, and cancer genetics.
()It's a pleasure to be here.
()I'm Lionel Fonkwa. I'm a medical oncologist here at the Mayo Clinic in Rochester.
()and I even self-specialize in the treatment of patients
(04:05):
()with the cancers of the gastrointestinal tract and the liver.
()And I also do research in that space.
()Born and raised in Cameroon, Central Africa.
()Came to the States probably about 20 years ago now.
()Did have been around for my medical training,
(04:26):
()Florida, Pennsylvania, and then eventually
()came to Mayo Clinic Rochester for my oncology training
()and joined the staff here in 2021.
()So I'm happy to be here and to contribute to this podcast.
()My name is Isa Muhammad.
()I'm a biomedical research scientist at Mayo Clinic.
()I did my PhD actually with Dr. Lewis Roberts
(04:50):
()on viral hepatitis liver cancer
()among immigrant populations in Minnesota.
()My work has been relating other disease pathologies
()back to the liver.
()Part of my postdoc was looking at sleep disorder,
()breathing, systemic inflammation,
()and cardiometabolic diseases,
()and how does that relate to the liver.
()And currently right now
()in the Alzheimer's Disease Research Center,
(05:12):
()again, trying to relate the brain back to the liver.
()I'm interested in doing research
()in historically underrepresented populations.
()Very much interested in interdisciplinary approaches
()to science and medicine,
()and making sure that we have enough representation
()of women and racial ethnic minorities in clinical trials.
()It's a pleasure to be here.
()I'm originally from Somalia.
(05:32):
()Thank you.
()Thank you so much.
()We're really excited, and we're so proud to hear the work that you're doing and the attention that's going to not only this area of work, but also the equity lenses that you are approaching.
(05:53):
()for education awareness so that providers also understand about how to go about this work.
()And I was just so blown away about the work that your team is doing,
()and that's why we wanted to have you here today.
()And I wanted to say thank you, Nisra, for making this happen
()and all the work that you've done behind the scenes to bring this team together.
(06:16):
()So I wanted to say that first. I want to also ask you a little bit about your interests. Let's start with Dr. Roberts.
(06:37):
()What interests you in this line of work? Thanks very much. That's a good question.
()I think my interest really started from when I was a medical student in Ghana,
()and on a couple of occasions,
()my professors admitted to a ward
(06:58):
()where we took care of patients,
()patients who were quite young and had liver cancers.
()And so it was intriguing to us
()that patients in their 20s and their 30s
()would be diagnosed with liver cancer. We found that these were patients with viral hepatitis B.
()And unfortunately at the time we had very little in the way of treatment to offer them. And we saw
(07:21):
()that they became quite sick and declined. And most of them would die within just a few months of their diagnosis.
()So in the course of my training, I ended up doing training that focused very much on liver
(07:44):
()diseases.
()And when I completed my training here at Mayo and my colleagues asked what area I wanted
()to focus on, I think it was natural from that history that I said, well, I'd like to focus
()on liver cancer because hopefully I can make a difference in a disease that has such an impact on young people in Africa.
(08:05):
()Thank you for sharing that. How about you, Dr. Konkova? How did you get interested in this area
()of or this line of work? Yeah, so I would say I'll go back to my really my early days.
()You know, I was raised in born and raised in Cameroon and just growing up in Cameroon as Dr. Roberts
(08:28):
()and Dr. Mohamed could probably attest
()in that part of the world,
()you really witnessed firsthand some of the challenges
()related to a healthcare system that's hobbled
()by this scarcity of resources and a lot of things.
()So from very early on, I could see how
()underserved populations could be affected by different illnesses.
(08:52):
()One that particularly hit me was the battle of my grandmother with stomach cancer or gastric cancer
()that she acquired in the background of an infection called H. pylori.
()And so it's a chronic infection that eventually led to the development of stomach cancer.
()And she fought and I witnessed her battle.
(09:16):
()Eventually, she lost that battle.
()I was supposed to be an engineer, but that really changed, impacted me in a way
()that it really redirected my career goals towards oncology, cancer research.
()So when I came to the States, it was kind of with that mindset
()that I wanted to be involved in cancer care.
()I eventually did my training in cancer care in medicine and eventually oncology.
(09:39):
()And then I specialize in liver, cancer of the GI tract.
()So I see cancer of the stomach, the liver and others.
()But even for the liver, liver cancer,
()as Dr. Roberts mentioned, a lot of patients
()in the continent, in sub-Saharan Africa,
()and here also, immigrant populations here
()get liver cancer in the background
()of chronic viral hepatitis.
(09:59):
()That's one of the risk factors for liver cancer.
()There are others, but for this particular population,
()Sub-Saharan Africa, Southeast Asia, that immigrate here,
()we also see that.
()So I see a lot of patients with liver cancer
()from that demographic that acquired it
()in the background of chronic hepatitis B
()or chronic hepatitis C.
()And it's a bit sad because those are preventable illnesses.
(10:23):
()There's a vaccine for hepatitis B.
()So, you know, and hepatitis C today,
()even if you have it, you could be cured from it.
()And there's treatment for hepatitis B,
()but I do see these patients,
()they never got vaccinated, some of them.
()Some of them had it, never knew they had the infection,
()and they were never screened,
()you know, for early detection of the liver cancer.
(10:44):
()And it was the same story that repeated itself
()over and over, and I see them at the end, really, of their journey, when there were so many opportunities to intervene,
()from prevention to early detection, and to even early treatment to potentially cure them from the cancer.
()And I said, you know, I could sit here and see them at the end of the journey, or I could try to intervene earlier
()and try to educate, participate in efforts, outreach efforts, to vaccinate, screen, and then put them into a pipeline for early detection and treatment.
(11:19):
()So that's part of the reason why I've been involved with these wonderful colleagues,
()Dr. Roberts, Dr. Mohamed, and a number of others in outreach to these communities,
()these at-risk communities, because the best treatment for cancer is prevention of the cancer.
()Absolutely. Thank you so much.
()Dr. Mohamed, how did you get interested in cancer
()and hepatitis work?
(11:40):
()Similar line of thought.
()It was personal.
()Three of my four grandparents,
()I never had an opportunity to meet them or see them.
()All three of them succumbed to what we call in Somalia,
()I gotta show, and you know, jaundice, liver disease,
()which they themselves or the family
()didn't know exactly what they had,
()but they knew it had to do with the liver.
(12:03):
()My remaining grandfather, who I grew up with,
()who's today marks the 17th week of his passing,
()may God have mercy on him,
()had both hepatitis B and hepatitis C.
()However, somehow his body figured out a way to cope with it.
()And just growing up in Rochester,
()I've seen a lot of the elders who were at the mosque,
()for example, a good chunk of them had passed because of the liver.
(12:28):
()So when you ask, why did Uncle so-and-so die,
()people will say it's because of the liver.
()Why did Uncle so-and-so die?
()Because of the liver.
()But no one really knew what about the liver
()that they actually died from.
()So when I decided to do my PhD,
()was actually at a community event
()that Dr. Roberts, Nasra, and Dr. Shitter were at,
()that they were talking about screening for hepatitis B
(12:50):
()and just providing education to the community.
()And it was at that time that I said, okay,
()maybe perhaps I want to work towards understanding why this
()disease is actually silent within this population.
()And when it does show, it's quite aggressive.
()I've even had individuals who were my age at the time,
()a gentleman who had passed now, he was 18 years old
()at the time of his passing, who had hepatitis B at you know during birth and you know going to school with him?
(13:17):
()He would be missing school or classes during middle school and even high school
()But we didn't know why he would miss it, but it wasn't until we were at least you know
()Sorry, I realized that he had
()Fluid in his abdomen
()It was at the mosque ask Ali during Ramadan that I asked him hey
()In the last 10 days when we were praying,
(13:38):
()what is going on?
()I've known you for some time.
()And he told me that he has hepatitis B infection
()and he has liver cancer.
()So because of all these different experiences,
()helped me inform that do you want to do some research
()within the space and then figure out how,
()like Dr. Fonko had mentioned,
()a lot of these patients come and we detect them
(13:59):
()when their disease is very advanced
()and we have very minimal amount of intervention that we
()can provide them, whether to cure them or even to provide additional quality of life
()in whatever is remaining of their life.
()But how do we make sure that we can capture them earlier on?
()And when I started my PhD, one of the things that we talked about with Dr. Roberts was
()I don't want to do a conventional PhD.
(14:20):
()I want to be able to go out to the community and to be able to see what the needs are for the population, both from a culturally societal standpoint, but at the
()same time, from a disease standpoint, how it's been transmitted and identifying these
()patients earlier on and link them to care.
()So this is my experiences that lured me to it.
()Thank you so much.
(14:41):
()You've all mentioned that you are looking at impacting the community that's here with
()regards to early intervention, early detection, early treatment,
()because you know the difference it makes from the outcome for people
()who get infected in any of these diseases.
()We live in a country that has a very advanced healthcare.
(15:05):
()You work at one of the best healthcare system in the world that other parts
()of the world come here for help.
()But over and over again,
()I hear, especially in our communities of color,
()communities from Africa,
()coming to clinics like Mayo Clinic,
()last stage of their life.
(15:27):
()The doctors, like you said, they can't help.
()What are the trends that you are
()learning from our communities in Minnesota that you are seeing
()are infected in these diseases.
()And is there, I mean, are you surprised
(15:48):
()about the data that you're noticing about the trend?
()Is there, are you seeing in the research,
()because I've noticed the research that Shira was doing
()with the hepatitis when I first noticed the work
(16:09):
()that was going into the Somali community, for example,
()I think it was almost, I would say maybe 10 years ago.
()What are some trends that you're noticing
()that is letting you to see people are,
()the outcome of the individuals who have this illness is improving compared to when
(16:32):
()they didn't have access to services? Or like when they were back in Africa, are you noticing that
()it's getting better over time? And what are you learning from the research that you're doing?
()So, as Issa described, when Dr. Shire first moved here to Rochester, it was really interesting
(16:52):
()for us because what we found was that he had recently graduated with his PhD from the London
()School of Hygiene and Tropical Medicine, had moved to Minnesota because his family was
()here.
()And I think once people in the community became aware that he was working at Mayo Clinic and
(17:13):
()doing research in this area, people would approach him quietly and say, you know, my
()uncle has this liver disease or my cousin has liver cancer and can you help arrange
()the appropriate appointment so that we can get good care for them.
()And I think it became clear that at a certain level, the community was calling out for help in the
(17:42):
()ways that communities do, which is they try to find someone that's trusted within the
()community that they think can advocate on their behalf.
()And so after we saw this pattern, we decided, well, let's see if we can understand on a
()more broad scale what's happening in this community, because it can't be just that it's a few cousins and
(18:05):
()uncles. It seemed like it was something that was more widespread.
()And so we actually got ethical approval to look in the records at Mayo Clinic to see if we could identify people of Somali descent or African descent and ask,
()tested for viral hepatitis and when they were tested, what were the results? What proportion
(18:28):
()of them had positive results? And what we found was quite high levels of both hepatitis
()B and hepatitis C in the Somali community, or individuals that were being tested. And
()I think what became clear to us was that this was perhaps something that was more widespread in the community, but if the physicians
(18:55):
()or people in the healthcare that were seeing these patients were not aware that this was
()a significant problem, then they might not do the testing necessary so that everyone
()was tested and screened for these hepatitis viruses, and so that if they needed treatment, they would be enrolled in treatment.
(19:17):
()So I think part of it was just recognizing that it's a particular problem in this community,
()in communities of African descent broadly, and then trying to confirm that if this was
()the case and if this was happening also in the wider community, not just people who are being seen at Mayo Clinic, but people
(19:42):
()who were in the community broadly. And that ended up being a study that Dr. Sherry started
()and that Dr. Isa Mohamed actually completed for his PhD, and maybe he can talk a little
()bit about that. That's that process of saying, okay, it's not just that we are seeing people in the hospital or clinic setting, but when we
(20:05):
()go into the community and we recruit people in the community, we also see these high rates.
()Yeah, absolutely.
()And I'm also wondering, you know, when you had Dr. Shirer and it sparked this interest
()when people found out what he was doing and they start telling their story.
()And I think that's a common thing in like communities where once they find out something
(20:29):
()that either you're going through or you're working in that field, they'll tell you how
()that affects their life. They come forward to share their story with you. Was that,
()you know, in the community you're from, Ghana and Cameroon and other parts of Africa, do you find similar things that kind of said,
(20:53):
()oh, we need to look into this,
()the same way that it started with Dr. Shearer?
()Was there, has that expanded to look at
()other communities of color
()and what did you learn from that data?
()Yeah, maybe I could comment.
()As an oncologist, obviously I'm on the other end,
()but the data that Dr. Roberts mentioned
(21:13):
()from Dr. Shears and Dr. Mohamed's study really established for us
()or proved to us that, showed to us that there's a higher incidence of this chronic hepatitis
()B in this at-risk patient population, the Somali community.
()You know, when you look at the data for hepatitis B and hepatitis C, you know, the incidence
(21:35):
()is higher for black African-Americans, the large majority in the state being Somali, but also in, you
()know, patients from Southeast Asia, Native Americans, and also Hispanics, compared to
()their, you know, white counterpart.
()Well, guess what?
()That translates into a higher incidence of mortality from liver cancer.
(21:59):
()So it's not surprising that black or African-American, again, the majority of which are these African immigrant
()population, have a five-fold risk of dying from liver cancer, you know, compared to their
()white counterparts.
()And it's not just a Somali, you know, problem.
()You know, it started with Somali.
(22:19):
()Actually, we were joking about it at the last meeting that we should, you know, there's
()a Somali health advisory council, that they should rename it the Immigrant Health Advisory
()Council, because really the same problems that we're seeing in the Somali community
()are applicable to the Liberian community, the West African, Nigerian, Cameroonian, you
(22:42):
()know, it's really the same.
()The epidemiology is very similar.
()So and that's one reason why we need to get together as a coalition to focus on that broader at-risk patient population because really,
()there's a lot of overlap. And maybe Isak can add to that.
()And your question regarding are these problems in other populations, part of the work that we've
(23:03):
()done, we actually did expand to other African populations, Ethiopian, Kenyans, Liberians,
()as part of our study. However, some of the data that we've been published in terms
()of understanding what the disease is, what do you even call the disease, do
()people know where to go get treatment or care, was overlappingly, overwhelmingly
(23:27):
()the same. There were some concerns with what the disease is, this fear of making
()sure that if I do share the disease status that I have, will I be neglected
()from the community, would I be cut off from the parcel of society?
()Some of these concerns, you know,
()were repetitive among the different populations.
()And, you know, one of the things that we would hope to do
(23:48):
()moving forward is to maybe perhaps restart
()some of the efforts that we've been doing
()in terms of screening and the partnerships that we've had
()built with various community-based clinics
()that are owned and run by physicians or clinicians
()coming from these respective populations that has helped
()us in regards to build the trust and the foundation needed, but also at the medical side of things,
(24:13):
()be able to help a network of being able to take a patient from the community's perspective
()and then having them see specialists like Dr. Roberts or Dr. Konkua that would be able
()to be able to help and train.
()So that's something we're actually currently working on
()right now is building a large African network
()on viral hepatitis and liver cancer in the state of Minnesota
()and we hope to do that soon.
(24:36):
()Yes, and I think you had asked a little bit about what
()the conditions were in Africa, in Sub-Saharan Africa,
()and I think it's very much similar.
()That as we've done more and more studies
()in different countries, we recognize
()that the rates of viral hepatitis are quite high. Hepatitis B tends to be of
()the order of sometimes 8 to 10 percent of the population as chronic hepatitis B. For
(25:00):
()hepatitis C, often it's around 2 to 3, sometimes even up to 5 or 6 percent of the population
()as chronic hepatitis C. So these are common, and I think when we delve into what's happening in Africa, what we recognize is that much of the disease
()there is undiagnosed.
()So our estimate, for example, is that of all the people with chronic hepatitis B in Sub-Saharan
(25:24):
()Africa, only less than 2% are aware that they have the diagnosis or they have the infection.
()And even here in the United States where our systems are more mature in terms of medical systems. We have the recommendations from
()the U.S. CDC, the Centers for Disease Control, that all adults should be screened for Hepatitis
(25:47):
()C, that all adults should be screened for Hepatitis B. We find that there's a substantial
()proportion of people with these infections who do not know that they have them. So I
()think that's one of the messages that we are trying to bring forth.
()That's the importance at the primary care level,
()at the public health level, that people are tested
(26:11):
()for these infections for awareness.
()And if I may add to that, that's a very important point
()and something that I think I realize is, you know,
()you mentioned, yes, we are at the Mayo Clinic,
()the best hospital system, supposedly, this academic tower,
()but yet we see these patients that can't get the benefit of it.
()And so access to health care goes beyond just providing care.
(26:36):
()And that's part of the reason why we're doing all of this outreach educational effort,
()because if the patients don't see the value, the community doesn't see the value,
()they cannot benefit from the technology, the new drugs that we are developing.
()So it's very important to raise awareness, educate,
()get people to get the right care, routine primary care,
()and that's how they will eventually get into
(26:58):
()the best treatments and benefit from it.
()Otherwise, we're just gonna widen that gap,
()that disparity gap between the minority populations
()and then their white counterparts.
()Yeah, that makes sense.
()Before we get into the looking at the co-infection of hepatitis B, C, and HIV.
(27:23):
()How common are these diseases, HIV, B, and C?
()And then what's the most common mode of transmission in these diseases?
()Maybe I'll start us off with that. So the rates of these diseases vary by population,
()and even within the different populations, by different types of risk factors that people
(27:43):
()may have. I think broadly what we see if we look at communities from sub-Saharan Africa,
()you probably have rates of hepatitis B that range from around 5 to 10, sometimes 12 percent.
()That compares to, if you look at the white population in the United States, rates of
(28:03):
()maybe 0.2 percent. So you may have two out of every thousand people of white or European
()ancestry with viral hepatitis B, but then if you take African immigrants, you may have 10 or 12 out of every 100 people
(28:31):
()that have these infections. So quite a wide discrepancy. For Hepatitis C, the general US
()population, we think it's probably about 2% of individuals that have Hepatitis C, whereas in
()the immigrant African communities, we have a range again of, it could be around 2%, but it can range
(28:54):
()all the way up to around 6% of individuals with hepatitis C.
()I think HIV, of course, is also to some degree dependent on the communities. We have some
()communities in southern Africa, for example, where we have very high rates of HIV of the
()order of 20% of the population of the adults in some of those communities having HIV, whereas if you
(29:18):
()go to other parts of Western Africa, for example, HIV rates are only about 1% of the community,
()so quite wide ranges.
()And these, of course, have to do with sometimes the risk factors for each of these diseases.
()Hepatitis B tends to be transmitted around the time of childbirth.
(29:39):
()So around the time of childbirth, if you have an infected mother, then that infection can
()be transmitted to the child, the infant, either at the time of birth or in the first few years
()of life, usually by the time the child is about five years of age, they may have acquired
()that infection.
()And Hepatitis B can be prevented within the vaccine.
(30:02):
()We give the birth dose of the vaccine,
()and then we follow it up with additional doses
()from around six to 40 weeks after birth.
()And we've shown that that combination can be very effective
()in preventing transmission from mother to child.
()Another important component is identifying mothers
()who are positive for hepatitis B, if they have high viral loads or they have
(30:30):
()characteristics that suggest they'll have a high viral load, we can treat the mother in the last
()three months of pregnancy. That can reduce the rate of the hepatitis B virus in their blood, and
()that can substantially reduce transmission as well. And that brings me – I'll mention this
()mentioned this concept of what we call triple elimination, because in terms of the infections
(30:54):
()that are transmitted commonly from mothers to their children, the three commonest ones
()are hepatitis B, HIV, and syphilis. And so the World Health Organization and many public
()health agencies around the world have come up with this idea of triple elimination, which is that pregnant women should be tested for all three infections,
(31:17):
()hepatitis B, HIV, and syphilis.
()And then we should have integrated programs so that we treat mothers and we prevent transmission
()to children of these diseases.
()Yeah.
()And maybe, in fact, that was those great kind of overview, Dr. Roberts.
(31:38):
()Maybe if I could add to that, I think I highlighted some of the disparities.
()Just bring it closer to home here in Minnesota for hepatitis earlier.
()As it relates to HIV, there are also, you know, disparities.
()I mean, if you look at just the state of Minnesota, black Minnesotans make
()up for probably about 5% of the population.
()But when you look at the new HIV cases yearly, the most recent one data shows that they actually account for about 42% of
(32:08):
()the new HIV cases.
()So you have a demographic, a group of black people who make up 5% of the state population
()yet make up account for almost 50% of the new HIV cases.
()So this is again, kind of bringing it closer to home and seeing why this is important.
()That's why we have these disparities. And if you look at Hispanics, for example,
(32:28):
()they also make up 5% of the population, the state population, but account for about 15%
()of new HIV cases. So again, bringing it up closer to home, even in HIV, just like in hepatitis B and
()C, black people, minorities disproportionately shoulder the burden. So Dr. Roberts has talked
()about some of the transmission modes. Dr. Kung Fu has talked about, you know, the
(32:52):
()actual numbers here at home. This is why we should continue pressing forward in terms
()of, you know, making the addressing of hepatitis B, C, and HIV a multifocal point where we
()have or at least need multiple perspectives and viewpoints to be able to push for early
()detection, early treatment, and early education. By having this, you know, a interdisciplinary group of individuals, whether it's policy makers, advocates, etc.,
(33:19):
()as well as the clinical and research community working together in partnership with the community,
()we can address some of these issues that we are seeing here and maybe stop the needless deaths that we are seeing overall.
()Yeah, that makes sense.
()I mean, hepatitis B and C and cancer research, how did HIV become a focal area of need or
(33:44):
()area that needs to be highlighted?
()And I think that the data that you shared, people might be surprised about that.
()you know, how do we, as a black people,
()carry the burden of being 5% of the population
(34:05):
()but still have all this higher infection of HIV.
()And given the connection between these diseases,
()the outcome of that individual that's going undetected
(34:26):
()of having hepatitis and then now having an HIV,
()their ability to live in a very treatable life
()is going to be much smaller
()and it makes it harder to help those individuals.
()And I think that's what,
()I'm sure that's one of the things
()that make your work a little bit harder even to be able to see the lack of detection and treatment
(34:59):
()for hepatitis and then have this higher level of HIV infection that's getting basically
()so despair when you compare with other populations.
()So I was wondering if you can kind of, how do you, how did that data come to your attention?
(35:26):
()As you're going about and doing HIV work, how do you notice that this whole HIV connection,
()especially for people of color, and this high disparity that exists and high level of infection that exists.
()And where would you attribute as the, I don't want people who are listening to think that
(35:51):
()this community is taking a higher risk. That's why they're ending up where they are,
()given that the screening, all these things that can happen in the first place to get the vaccines to treat the individuals,
()is also a big reason why we have the numbers that you see.
()So I was just wondering if you can kind of talk about that HIV and the complications that cat is
(36:19):
()when an individual who has hepatitis is now infected with HIV and is not getting the treatment that they need
()for both of these diseases.
()Yes, perhaps I'll start with just describing
()some of the issues that can occur with the co-infections.
()Because we talk about these three infections,
(36:40):
()hepatitis B, hepatitis C, and HIV,
()together in part because all three can be transmitted
()to blood-borne needs as well.
()And we know actually of the three, it's really that the likelihood of
()being transmitted through blood is in that sequence. Hepatitis B is the most transmissible,
(37:02):
()H. hepatitis C is the next, and then HIV. And so if people are in circumstances when,
()for example, a number of years ago, before testing was available for either Hepatitis
()C or for HIV, people would be receiving blood transfusions, for example, that had not been
(37:22):
()tested for those viruses.
()And so if you received a blood transfusion that had not been tested for those viruses,
()then you could have the virus transmitted to you without your having any awareness of
()it. And we still see women, for example, who when they were younger had a delivery and
()needed a blood transfusion after delivery and we find out now that they have HIV or
()Hepatitis C or both. So I think it's important to recognize that that's a major factor. And
(37:48):
()then there were times and in some places where they...
()The use of, for example, sterile medical equipment has not been perfect.
()So you find that sometimes needles have been reused or they've been inadequately sterilized.
(38:13):
()And we find, for example, that their
()likelihood of having hepatitis C is related to how many years they lived in a refugee
(38:35):
()camp before they moved to the United States. And we know in refugee camps often the medical
()care is very rudimentary. They don't have a lot of access to good care. So you can see
()that people have been in can be associated with a higher risk of transmission of these
()infections.
(38:56):
()And then the other dimension that's important is to recognize that sometimes the drugs that
()are used to treat the infections are similar.
()So, for example, hepatitis B and HIV, sometimes the same drug is used to treat both infections.
()So it's really important if we are diagnosed someone with HIV that we test them for Hepatitis
(39:17):
()B as well, because if they test positive for Hepatitis B, then the regimen that they are
()placed on for their HIV treatment should also be one that treats the Hepatitis B. Otherwise,
()you stand the risk of not getting good control of the HIV because there's this other infection that is active in the person.
(39:41):
()And it's not uncommon to see patients who have both infections be at higher risk for
()developing liver cancer. And when they develop liver cancer, they tend to die much more quickly
()if they are not on treatment. So I think those are areas where the intersection between the
()two infections makes a difference as well.
(40:03):
()Yeah, I completely agree with Dr. Roberts.
()Maybe I'll add, I mean, as you mentioned, the mode of transmission is the first commonality here.
()Bloodborne pathogens, you know, through blood products, sexual transmission, sharing needles.
()But you brought up an important point to not as related to the stigma, you know.
(40:23):
()So there are other ways of transmission for people who not necessarily did not have an unhealthy
()lifestyle by no fault of their own.
()Thinking of patients who are long-term hemodialysis, they just have a higher risk just because
()of the nature of dialysis of catching an infection, especially if they're in a certain setting
()where the screening for these infections is not the greatest.
(40:48):
()Occupational exposures, you know, healthcare workers could get it that way as well.
()I think Dr. Robert touched on, you know, mother to child transmission as well.
()So I think we need to recognize that it's not just always linked to unhealthy lifestyle or behavior.
()Sometimes it's just the nature of the environment that we live in.
(41:08):
()And, you know, they all affect the liver.
()You know, the liver, you know, liver disease,
()the progression of the liver disease,
()most of the time cirrhosis is the term we use.
()And someone who has a co-infection with HIV
()and hepatitis B or C, you know,
(41:31):
()the progression is gonna be faster.
()The progression of the liver disease
()and ultimately the progression to cancer.
()So it's very important, as Dr. Roberts mentioned,
()to when you're diagnosed with HIV,
()to be screened for hepatitis
()and to be treated appropriately,
()because also, I think for hepatitis C,
()you can actually have a progression of the infection
(41:52):
()if you don't treat the HIV.
()So meaning the virus will multiply faster
()if the HIV infection is not under control.
()So it's really important once diagnosed
()to be screened for these diseases to be treated appropriately
()to prevent worsening of the liver disease and ultimately development of the cancer?
()I think for every disease we have to make sure that we have a lens of humanization.
(42:13):
()We have to give, not look at the disease or the rates of the disease burden as someone
()committing some sort of mischievous act, but humanizing their lived experiences, understanding the conditions in which this came about,
()understanding that they have rights, they have needs, and they also have aspirations as human
(42:34):
()beings. There was a gentleman who I met a few years ago who had had experiences in the criminal
()justice system himself, and had difficulties, but now has came out of the situation that he was in,
()and now is using those experiences to build a movement
()called Humanize My Hoodie.
()Oftentimes we have perceptions of individuals
(42:56):
()happen to be of African origin, for instance,
()having a hoodie means that they're no good,
()that they're up to no good.
()But going from that element of his movement,
()Humanize My Physiology, we have to understand that
()we as human beings also have rights in the healthcare
()system, henceforth why we should be represented
()in all the aspects of what medicine
()looks like, making sure that we have an environment where we can be providing supportive treatment
(43:22):
()access, reducing stigma, and more importantly, empowering people to be their own active leaders
()for their own disease and health and wellness. Hopefully, all of this combined can help us to
()provide the best passionate care that we can provide and, you know, be able to improve the lives of millions.
()Thank you so much for sharing those stories.
(43:42):
()I want to make sure while I have you on the call
()that I ask you the importance
()because we want to be able to talk to our audience.
()We want people to be listening and to move the needle
()in terms of making sure that we're reducing the risk
()and we're improving the outcome
()of those who might have already been infected,
()whether it's just the hepatitis B or C or combined with HIV, right? So I want to ask you
(44:08):
()about your recommendation in screening and monitoring. And if somebody thinks they are at
()risk of any of these, you know, how do they get the help they need? And then how do we reduce the risk?
()So I want to make sure I get you to answer those questions
(44:31):
()before we end the call.
()So let's start with what's the recommended
()screening and monitoring?
()And then we'll move on to the risk, producing the risk.
()Maybe I can talk about the screening part.
()I think, number one, it's multifaceted.
()There has to be a partnership between the community, the academic centers, and various
()other stakeholders, whether it's the state, local government, et cetera, making sure that
(44:55):
()there is some sort of educational program that people can understand what these diseases
()are, how people are able to get it transmitted, what are some of the opportunities that are
()available to them for treatment and care or even screening, and also going to where people
()live instead of accepting or requiring them to come to you in the hospital,
(45:16):
()the clinic setting, we as academic medical researchers, et cetera,
()should be able to go to the community.
()And some of the work that community advisory boards, for instance,
()like the Small Health Advisory Committee has done was laid a foundation for that type of work
()to ensure that the community is the one that leads the herd
(45:41):
()to what direction they would like us to go.
()The rest of us are providing the support that we can.
()Not that I'm saying that we are providing
()the community knowledge
()and that they don't give us anything in return.
()We're actually learning how to reimagine
()what medicine and healthcare should be in the future
()and how we should make it in a way
()that we could decentralize care,
()that people can get the care that they need
(46:03):
()in the comfort of their own home,
()and that they do have the respect and decency
()and the humanity of their living essence
()is taken into consideration
()in terms of how our approaches are moving forward.
()Yeah, absolutely.
()I think that the education is very big, important.
()I was really happy to see the work
(46:24):
()that the Somali Health Advisory Committee has done to educate and to bring awareness
()about liver, liver, awareness about liver, hepatitis and liver cancer and the videos,
()the translated videos, work that's available on their website.
()We'll make sure we include, once we drop this episode, a link to those educational events and future events or people to follow the work that the committee
(46:55):
()is doing and the research articles that work that you have published as well. Let's talk
()a little bit about if someone thinks they are at risk for hepatitis or HIV, how do they
()get tested?
()Part of the reason we do the community awareness is just so people are aware that if they don't know what their status is, that it's important
(47:19):
()that they ask their healthcare provider. Now, we know that from the healthcare provider
()side the U.S. Centers for Disease Control has recommended that everybody should be tested
()for HIV. Every adult should be tested for Hepatitis B. Every adult should be tested
()see. And if people think that they remain at risk for any of these infections, they
(47:41):
()should be tested. So it's important, I think, that in the community also we are increasing
()the community awareness and we do this through health fairs and other events, through social
()media, but that if a person thinks, well, I'm not sure what my status is, and if they think that they might have any particular risk factors, that they ask
(48:07):
()their health care worker or their physician or their primary care physician or their physician
()assistant or nurse practitioner, they say, can you please test me?
()Because it may be sometimes I think the health care workers look at a person and think, well,
()I don't think they are at risk because they look healthy.
(48:28):
()And we know, of course, that for each of these diseases, it is often a long period of time when people
()who have the infection look healthy and it's only at the end stages of the disease that they become very sick.
()So people who have these infections don't have to look unhealthy, and it's important if you don't know what your status is, that you ask your health care
(48:51):
()worker, your primary health care physician or nurse practitioner,
()can you please test me?
()Yeah, and I would even add that if you have access to health
()insurance, do your annual checkup
()and just ask for your full checkup.
()Include that, because you just never know where the risks are.
()And we have to, especially in the African community,
(49:13):
()we have to get comfortable doing our preventative care
()as much as cure and stay and establish a primary provider
()who knows about our health, who can take us serious,
()who can understand if we're not feeling
()the way we were feeling, we're not feeling healthy
()and give us the extra screening or the health education
(49:36):
()that we need, that patient advocacy is important.
()We don't always have patient advocacy.
()So I think I really,
()that's the message I have for our communities.
()Don't underestimate your annual checkup.
()Don't underestimate about advocating for your health,
()especially when you end up having something
()that requires additional screening and follow-up.
(49:58):
()And I think that's where our community gets dropped off.
()Often you see someone who has a concern for health, the blood work that came back,
()biopsy that came back, and there's supposed to be a follow-up and all this treatment and all this
()work that's supposed to happen, and then it just sort of disappears. And then that doesn't help
(50:19):
()anybody. So I definitely wanted to add my two cents in there and just say get your health care,
()healthcare, advocate and work with organizations and a doctor who cares about you, who understands
()you, who will take you seriously. And then I wanted to say how else from a professional,
(50:40):
()obviously from the work that you do, you're the expert, how would we reduce the risk of
()hepatitis and the co-infection of hepatitis and HIV? What are actionable steps that the listeners can take with their patient, advocate, or healthcare, or policymaker?
()Yeah, maybe I'll get started on this. I think I'm going to support the previously made points about knowledge.
(51:03):
()Knowledge is power, really. I'm the oncologist, so I see these patients at the end of the journey.
()But really, if they are – we raise awareness, they are educated, they check and ask for their status,
()they could be screened, they could be vaccinated,
()and then for those that unfortunately have the disease,
()they could potentially be cured if you have hepatitis C.
(51:25):
()If not, even with HIV today, you can be on treatment
()that gets you to undetectable viral load.
()You can live with this as a chronic illness.
()So even if you're found to have the disease,
()we can control it and help you live with it. If for the unfortunate
()reason that you get the cancer, you could be, you know, you get the disease, you could
(51:46):
()be screened for cancer, you could be monitored and screened for liver cancer. And that's
()usually a combination of liver ultrasound and a cancer marker called AFP every six months.
()So twice a year for patients who are at risk, who have liver disease, who have chronic hepatitis B or C or cirrhosis.
(52:07):
()And that's to make sure that if you develop cancer, we catch it early and potentially
()cure you from the cancer.
()So as you can see, knowledge is the common factor here, common denominator here.
()If you know what to do, you know your steps from a lifestyle standpoint, from a prevention
()vaccine standpoint, from a screening and monitoring, that could be the difference maker,
()and that's part of the reason why we do a lot
(52:28):
()of this outreach work.
()Thank you so much.
()Where can someone who wants to know more
()about this issue get reliable resource,
()especially when it comes to translated audio or in writing?
()I talked earlier about the work
()that the Somali Health Action Committee,
()is it Action Committee?
()Yeah, Advisory Committee.
()Advisory, Somali Health Advisory is doing tremendous amount of work in promoting this,
(52:54):
()the education aspect, awareness, the patient advocacy, the provider, cultural competency.
()Are there more work that you're doing that you want to see, because of how devastating the infections are, how bad the disparity is,
(53:23):
()where can we add more, where can we direct people to get more education, besides the work that the coalition is doing,
()to help promote that, like having you here today and shedding a light and talking about
()the importance of this. We want to be able to help people provide as much outlays that
(53:45):
()they can learn and educate about themselves and about their patients that they serve.
()Yes, there are excellent resources on the website for the US Centers for Disease Control,
()for example, for viral hepatitis and for HIV. So that's a good resource. You mentioned already the Somali Health Advisory
(54:06):
()Committee or SHAC, that is S-H-A-C. So SHAC, if you search for SHAC, you'll find information,
()you'll find a number of videos and additional information. We also try on social media to
()post information about webinars that are underway. Just within the state of Minnesota, we have the Minnesota Department of Health
(54:31):
()that also is quite active in efforts to improve the public health of individuals. So we encourage
()people to look for these and other sources of information. Many of the medical centers in Minnesota, for example, will have information on their websites as
(54:54):
()well that relates to viral hepatitis and HIV.
()Thank you so much for joining us today.
()We appreciate all the work that you're doing.
()I would like to invite you back when you have research publications or new data that's coming
()out or even if you have a study that you worked on that we can have a little bit of more conversation about. Obviously,
(55:16):
()the hope is that through this research and through these efforts that we want to see a downward
()data rather than, you know, expanding the disparity. And I think it's possible.
()And I appreciate the attention and the focus and the cultural lenses that you bring to your work.
(55:42):
()And just been really privileged to have you on this podcast today.
()Thanks very much for having us.
()Thank you. Thank you for having us. Thank you.
()Thank you, Adam and company.
()The work you guys are doing, too, is needed,
()and you guys are helping us to transform the narrative, right?
(56:04):
()And have some level of ownership of the narrative.
()We don't wanna talk about the negativity or the have-nots,
()but more of the opportunities that we can go ahead
()and build something bigger.
()So we really appreciate what you guys are doing
()and the work that you guys are helping us to disseminate.
()Absolutely, and I think that the community strength
()is strong and we're not defined by these numbers
(56:25):
()by any chance.
()There's so much that I know with the right messenger and the right information and trust.
()Our community is not...
()They take that information in and they act on it.
(56:46):
()All communities, whether they're rural community, urban community, African-American community, African community, there has to
()be a space where their intentionality, the delivery, the access, the screening, the information
(57:07):
()resonates and they're aware of it.
()And I think with those combinations, they will turn the corner because we understand our health is very important
()to us and no one wants to get sick, right?
()Every African, every community member dreams the most best possibility for their children.
(57:29):
()Every child wants to see their, every parent wants to see their child grow up and have
()And that's something that I think we would hate the disparity to be because we didn't have the resources.
()We didn't have the opportunity to help the community when we could help the community.
()And that's why your work is important.
(57:50):
()And thank you so much.
()I hope you had a great Thanksgiving and great holidays coming your way.
()I'd like to stay in touch.
()Thank you, Nasra, for making this happen.
()And thank you, everyone.
()Bye now.
()Thank you.
()Thank you.
()Thank you. Bye bye.
()If you enjoyed this episode, don't forget
()to subscribe, share, and leave a review.
()We will see you next time
(58:12):
()on Policy Connecting Communities.
()Policy Connecting Communities
()is produced by AG Consulting
()and Media. The Policy Connecting
()Communities podcast, produced
()by AG Consulting and Media,
()by AG Consulting and Media,
()highlights the public health efforts and strategies used to empower and grow community and policy development.
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