Conversations on Cancer, Advancing a more Equal Future for AA&NHPI Patients with Cancer
Tamy Kim:
Hi, and welcome to the FDA Oncology Center of Excellence's, Conversation on Cancer: Advancing a More Equal Future for Asian-American and Native Hawaiian and Pacific Islander Patients with Cancer. We're joined by several distinguished panelists today, and we'll be discussing the current and ongoing healthcare disparities and challenges that face Asian-American and Native Hawaiian and Pacific Islander patients with cancer in the United States. My name is Tamy Kim and I'm the Director for Regulatory Affairs and Regulatory Policy at the Oncology Center of Excellence, which we also call the OCE; and along with Jennifer Gao, I'll be co monitoring today's session, and I'll give Jenny a chance to introduce herself and say a few words and then we will introduce our panelists. So Jenny?
Jennifer Gao:
Thank you so much and welcome everyone. My name is Jenny. I am the Associate Director for Education in the OCE and alongside Tammy I'll be co moderating today's discussion. So today's conversation builds on a previous conversation on cancer that we held back in July of 2021, where we discussed the impact of racism and injustice, oncology healthcare inequities including cultural, language and other barriers to access for the Asian American Native Hawaiian Pacifica Islander communities.
And earlier this year, in January of 2023, the Biden Harris administration released its first ever national strategy to advance equity, justice and opportunity for Asian Americans, Native Hawaiians and Pacific Islanders, AANHPI population, which we'll refer to throughout this conversation today. And that strategy detailed the need for investments in the AANHPI communities and priorities, which include many of the topics we'll touch on today such as data disaggregation, language access, and combating anti-Asian hate. Our conversations will flow for the next hour to hour and a half. We're going to ask our panelists to introduce themselves next, and everyone has already previously agreed to call each other by first name. I'm going to start with Manju. If you could tell us a little bit about yourself and then we'll go around to everyone else. Manju over to you.
Manju George:
Hello everyone. I'm Manju George. I'm a rectal cancer survivor. I'm also a colorectal cancer patient advocate. I'm trained as a veterinarian and I have a PhD in virology and about a decade of biomedical research experience. I'm honored to be part of this panel. I represent Asian Indians and I belong or I'm originally from South India. Happy to be here.
Jennifer Gao:
Thank you so much, Manju. Susan, over to you.
Susan Matsuko Shinagawa:
Hi everyone. I'm really pleased to be here today. My name's Susan Shinagawa. I'm in San Diego, California right now. I am a 32-year survivor of two primary and one recurrent breast cancer diagnoses. The first one, I was 34 years old and I got that first diagnosis after I was told that I was too young to have breast cancer. I had no family history of cancer and besides Asian women don't get breast cancer, so I was refused a biopsy. I went on and got a second opinion. That's how I got my first diagnosis. Since then, I have been an advocate for health equity in communities of color, poverty, and oppression, with a focus on Asian American communities. I've been a strong advocate for separating Native Hawaiian and Pacific Islander communities from Asian American communities. I will get into that discussion a little bit later. And for the past 25 years, I've been a chronic pain patient and a pain management advocate and I'm still in active treatment.
Jennifer Gao:
Thank you Susan. Kekoa, next to you.
Kekoa Taparra:
[foreign language 00:03:45] Hello everyone. My name is Kekoa. I am currently a resident physician trainee at Stanford Healthcare in the Department of Radiation Oncology. I'm actually part Native Hawaiian from both my mom and my dad's lineages, grew up in Hawaii, went to the Kamehameha schools, which was a school founded by Princess Pauahi for Native Hawaiian children. I did my training for my PhD in bench science out at Johns Hopkins School of Medicine and Dr. Phuoc Tran's Lab. And then I went off to medical school after that at Mayo Clinic in Rochester, Minnesota, where I transitioned my research from the bench to really focus on community health and particularly the health of [foreign language 00:04:32] are Native Hawaiian communities as well as our Pacific Islander cousins. And I continue to do that work here at Stanford as a resident in the Department of Radiation Oncology, really focusing on things like data disaggregation, particularly for the Native Hawaiian and other Pacific Islander community. But I also focus on a lot of Asian American health disparities as well as it pertains to oncology. So grateful to be here today with all of these esteemed panelists.
Jennifer Gao:
Thank you so much, Kekoa. Naoto, we'll go to you next.
Naoto T Ueno:
Aloha. So I'm the Director of the University of Hawaii Cancer Center. So our cancer center is NCI designated and serves an underserved community, which includes state of Hawaii and US affiliate Pacific Islander. So my personal background is I'm originally from Japan and I've been the US probably close to 35 years now. And I am a two-time cancer survivor with a diagnosis of myelodysplastic syndrome and sarcoma, and I myself is a drug developer, so I'm very honored to have this opportunity to speak with everybody.
Jennifer Gao:
Thank you. And Ishwaria.
Ishwaria Subbiah:
Wonderful. Hi everybody, I'm Ishwaria Subbiah. I'm a medical oncologist and a palliative care and integrated medicine physician at MD Anderson Cancer Center in Houston. My work centers on optimizing the cancer treatment experience for individuals with cancer, including symptom management in the context of standard of care or with a particular emphasis on cancer clinical trials and participation on cancer clinical trials. I come from a South Asian background from India and the, we'll get into it today, but there's a lot to discuss on the nuances of clinical practice and how we approach research to be fully inclusive.
Jennifer Gao:
Wonderful. Thank you. Ishwaria. And of course now we turn it over to OCE's Director and the driving force behind our AANHPI efforts in the OCE Rich Pazdur. Go ahead, Rich.
Rich Pazdur:
Thank you. I'm Rich Pazdur and I'm the Director of the Oncology Center of Excellence. I've been at the FDA for nearly 24 years now and have seen a lot of transformation in the way that oncology drugs have been discovered, developed and then put out into the community. So I'm very happy to be here. I'm also, from a historical point of view, although I'm an administrator now and a FDA employee, had done clinical work for the vast majority of my career, both in Chicago, in Detroit, at Wayne State University and at MD Anderson Cancer Center for about 15 years. So I arrived here around 1999 to assume the directorship of the oncology division at that time, which has grown into its own center after the moonshot program veiled funding for the establishment of an oncology center here at the FDA.
Tamy Kim:
Okay, great. Thanks so much Rich. We want to start this conversation by understanding the Asian American and NHPI communities better. And we know that the individual communities within the larger AANHPI population are unique and have their own considerations. And so we want to turn first to you, Naoto, how could you or could you discuss some of the challenges facing the community you treat at the University of Hawaii, including the Native Hawaiian patient population, and are those challenges similar to the challenges facing Japanese-American community? And if not, what are the differences between those populations?
Naoto T Ueno:
So thanks for the excellent question. It's a very broad question that you're asking and first talking about access. And to me there's like a four level of access issue in our community. So one is Oahu, as you know Waikiki is probably most of you know as a real touristic area and that's considered east of Oahu. But even Oahu, if you go to basically east or north, it's different. And then you go to the naval island, then the access goes down and then further you go beyond the island to the US affiliate Pacific Island, which includes Guam and Samoa. The access is very much limited. So that's one issue.
The second issue is really the cultural thing. We are very diverse. I think we're one of the most diverse part in the United States, but it has its own culture and different way of approaching things. And the third aspect is a mistrust. And there's a long history behind in terms of how the state was formed. And there is definitely a concern, great concern from the Native Hawaiian and Pacific Islanders through the process. And the World War II with the nuclear testing and there are multiple factors that's confounding and the cultural thing that's mixed up. So I can't say one component is really [inaudible 00:09:43]. They're all important. And this is where the puzzle is very complicated. And then so it requires to tackle these issues from many different angles.
Jennifer Gao:
And to build on that, Naoto, could you contrast that or compare that with what you've seen from the Japanese American communities? And then Kekoa, I definitely saw your head nodding and a lot of what Naoto said resonated with you. So we'll go to you next for comments.
Naoto T Ueno:
Yeah, so Hawaii, just looking from the lifespan perspective, I think we are one of the longest among any other state. And I think there was even a survey about happiness. It was on the high end, but you have to really be careful that there's a difference in terms of Asian American, that Asian American, there are definitely this paternalistic kind about approach and healthcare, that the doctors and the patient type of relationship does exist, and then there's some kind of their original traditional medicine. So there's a lot of misunderstanding that one exists. However, yes, they are much in a better position compared... I'm just talking about in Hawaii, but comparing to the Pacific Islanders. So if you look into demographic, we need to divide Asian in much more detail. There's a disadvantage happening with the Filipino Americans and then the Pacific Islander has, in terms of lifespan, I think there are seven years behind. So there's a big issues here due to the factors I just talked before.
Kekoa Taparra:
And I can absolutely add to some of that. Having grown up in Mililani, which is a very highly concentrated of Japanese population as well on our island in Oahu. I definitely have seen the differences, at least anecdotally growing up. I resonate with so much of what Dr. Ueno was saying in terms of, even when we look at longevity and lifespan, we really have to focus more on geriatrics and geriatric oncology in particular for the Japanese population because that population is well known, at least in our islands, to have very long life expectancy. And as Dr. Ueno has noted, the longevity and life expectancy of Native Hawaiians in our own indigenous lands, we actually have the least life expectancy. And so factoring that into how do we make calculations for life expectancy and also highlighting what are the underlying causes of those differences in life expectancy are very important.
And one other thing that I wanted to bounce off of is, of course in our islands, how Native Hawaiians are from all of the islands in our Hawaiian islands. And so the importance of access to care is really important. While Oahu is very populated and have a lot of immigrants and people from the continent kind of living on Oahu, there are a number of populations on the other islands, particularly Native Hawaiians that are predominantly Native Hawaiian communities that don't have that same access to care in the more urban environment. And I'm just anecdotally from my own family, so I have 10 Native Hawaiian family members who have had cancer, all but one have died unfortunately from their cancers at this point. But I do remember my uncle that just passed away a couple of years ago of metastatic, widely metastatic prostate cancer. He lived on Maui.
And when I was talking to my auntie during the end of his life, I do remember asking about the healthcare on Maui. And she straight up told me, she said, "When we moved to Maui, we knew we would die here." And that breaks my heart to know that there's predominantly Native Hawaiian communities that don't necessarily have that level of access. So I definitely agree with everything that Dr. Ueno has said, and I do think that there are some challenges and differences just even in terms of the distribution of resources and where the Native Hawaiian communities are in our islands.
Tamy Kim:
Thanks so much Kekoa. Susan do you want to chime in on any of this? I know that you had advocated for the NHPI population to be considered separate from the Asian American population, but we also want to ask you, are there any times where it would make sense for the NHPI population to be included with the Asian American population, or do you think it should always be separate?
Susan Matsuko Shinagawa:
Well, I think if you look at it historically, the two populations were put together by choice because we were so small and we had no political cloud, we had no voice. And so we collectively joined together voluntarily in order to do that. But as... You know you come back now or you go forward 30, 40 years and you see really that the Native Hawaiian Pacific Islander population of the API or the AANHPI population is like 7%. And so any of the data that you have out there is grossly skewed towards the Asian population. And that's also a big gigantic group, which is very disparate as well. But what happens is when you see, for example, in breast cancer, which I know a little bit about. Asians, like I was told in 1991, that Asians don't get breast cancer because we had, at the time, APIs had the lowest a cancer incidents and mortality rates, and that's how it was always listed.
But at that time, also, Native Hawaiians had the highest breast cancer rates, but you didn't know that because it was totally hidden within that API. And that's one of the reasons, one of the main reasons why I've been such a strong advocate for separating those populations out. There are probably some instances where for research purposes, the populations are still combined. I think maybe, and I probably shouldn't say this, but maybe really to get the grant funding, but once you get that funding, I really think it's important to still separate those populations because it is so different. And I think it does a disservice to both populations, especially to the NHPI population, it does a great disservice to have us lumped together.
Jennifer Gao:
I completely agree. And I think some of the rhetoric has, the conversations has been around how do we think about data disaggregation versus aggregation? How do we make sure that we find the information there that's not diluted? And we're going to come back to that topic in just a little bit. Ishwaria, I'm wondering if we could ask you to reflect on some of things that Kekoa mentioned about his family members and cancer care, end of life care given your role in supportive oncology, and also tell us a little bit about whether any of this is similar to the South Asian American population and then Manju we'll go to you as well.
Ishwaria Subbiah:
Absolutely. I mean, without a doubt, the willingness and the openness to accept symptom management as part of cancer care is a struggle across multiple cultures. And in South Asian cultures in particular, the underlying drivers of seeking symptom management or not seeking symptom management are so culturally rooted. You may have a well-developed multidisciplinary team available for a person with cancer, but it's the benefits that you would bring to the table as a supportive care practitioner, as an integrated medicine practitioner, are dependent on that person coming to you in one form or another, virtually or in person. In South Asian cultures, particularly in Indian cultures, symptoms are often, symptoms across the world aren't always perceived, right? You can see certain physical symptoms, but the bulk of the symptom burden a person carries are not readily perceptible. And so the reluctance to share the symptoms that a person is feeling, whether it's pain, whether it's nausea, whether it's difficulty sleeping, a profound anxiousness, unless symptoms are physically perceptible by another, it's not uncommon to culturally keep symptoms to yourself out of concern of being a burden to the people around you.
That weight that's carried about being a burden is one that crosses even illness boundaries, cancer and beyond. But particularly in the context of cancer and cancer treatment, even in the diagnosis stage, symptoms like physical symptoms are kept to them, the person tends to keep to themselves. How do we tackle this in a symptom management practice? We really have to cut that association between symptoms and outcomes. That the presence of a symptom is, and getting attention for the symptoms, whether it's pain management or sleep management, providing support for emotional health. This is a part of cancer care. It does not determine necessarily a cancer specific outcome. And so making the symptom management space a safe one, frankly, is one of the first priorities for all of us providing holistic cancer care. And this is very much rooted culturally.
Manju George:
I agree with a lot of what Ishwaria said. For example, when I was diagnosed, I told my children, they were four and 14 at that time, and I got a lot of questions from my family about why did I share my diagnosis with my children. We have this attitude that, especially, excuse me, especially in India, that anything hard in life, you have to protect women and children from that.
And when my friends came to know about my diagnosis, I work at the med center and I have a lot of Indian friends who have PhDs and who are working at the med center, but they didn't want their family to know about my diagnosis. They would be like, "Don't talk about cancer. It's okay. We can just say that you're sick, but don't mention cancer." I mean, I felt that if we are having those kinds of attitudes, which is very different, then if you can't talk about your diagnosis, then in the family, I have family history, meaning in my family, when my cousin had something going on with her life, I came to know only after my diagnosis that that had happened because it was not shared.
It is not. I think disease, cancer, especially something that you keep under wraps, you don't share. It's not something to be shared. And that becomes a big problem because if you don't know your family history, I mean in this case it was different, but then you don't know what you're dealing with, right? You can't do anything proactive about it. So that is very rooted in the cultural idea of how sick people are, like what Ishwaria just said, more burdensome, you shouldn't share, you know, you want to be a fully functioning individual, self-sufficient, and not rely on others. And for example, I'm an immigrant here and I don't have most of my, my entire family is in India, and you are more self-sufficient and you know are here because of work. And then that adds another layer of everything when you're sick. Then if you can't work, then your insurance is connected to your work.
And then young people come here, I was looking up at Asian Indian numbers, and it seems that about 69% or something is people who are foreign born. And so the Asian Indian experience can be divided into those who are second generation American, who are more assimilated, who are more like Americans, but look different. But if you consider the first generation immigrants, they are in their lives, they are still in their native country, but living in the US you have the same food habits, you have the same lifestyle. So even in this small population group, the influences that affect cancer and cancer diagnosis, screening, treatment, everything is heterogeneous, right? It's not just one thing that you can lump everything together.
Kekoa Taparra:
If I may, I would love to jump off of that, and I'm kind of just-
PART 1 OF 4 ENDS [00:23:04]
Kekoa Taparra:
Hey, I would love to jump off of that and just discuss a little bit about what I understand about my community, the Lahui and Pacific Islander community at large for one thing. Even in the patients that I see, a lot of them who are south or East Asian, a lot of them have PhDs, a lot of them have that knowledge and background and sometimes they do like to keep it to themselves. They do like to not share with the family because they don't want to be a burden. In my experience with my communities, I think we are such a tight-knit community that everyone knows everything about everyone and we want to share that and we want to be a part of each other's lives in a very different way. I'm not saying one's better or one's good or bad, it's just different.
I do think that in terms of the Pacific Islander patients, both or my family members, but also the Pacific Islander patients that I meet, they really do want to know. They really want to get information. They're not afraid of saying that they have the cancer because they otherwise, don't have necessarily, the health literacy or the information or even how to get the information to know what they are having and what the experience they're about to go through for the treatment. I think, in terms of communication and culture, I think, that that's also one way that I find a little different between at least the patients that I see who are Pacific Islander versus Asian American. I totally understand there are varying degrees.
Another thing is, and maybe this is similar or different, but in terms of the spirituality and connection to nature, connection to... I know our land and there's a lot of, at least in the Pacific Islander culture, a lot of connection that we have to our environments and our... That the places that we live or I know the land that we live on and how we connect to the land is a direct relationship to our health.
I think that that is something that... It's about our communities and about our connection to our land, at least for Pacific Islanders, that when we have instability in any of those things that can lead to poor impact on our own mental and physical health.
Naoto T Ueno:
What [inaudible 00:25:18] said is really a important point in seamless integrated care in Hawaii and Pacific Island is a challenge because we'd like to say, the western medicine was anti-cancer drug. Here it is and that's what you should be getting, but that doesn't always go very well. There are spiritual, not just spiritual, but they have their own way or medical approach that's been going for a long time. How to respect that culture and to communicate is very important, simply saying the Western medicine won't do very well. I think, this is very similar with the Asian culture, that there's a long tradition of Chinese medicine or there's probably Indian or each of the country have their own traditional component that exists. When we actually try to do clinical trials or we try to provide a more integrated care, how do you show that respect? I'm not always advocating that some of the thing is non-evidence approach, but showing that respect is extremely important rather than say, "This is the only way to approach things."
Ishwaria Subbiah:
Well said. When we think about each of the components that are unique to a culture that you may have heard in this conversation alone, when we listen to it as oncology practitioners, we can draw the line between the individual beliefs and healthcare outcomes. We can trace drivers of decision making, medical decision making back to these roots. I say that because family related distress or the level of awareness that one's kids may have, just as an example, that as a specific barrier or reality has come up in conversations related to end of life care, someone who's acutely decompensating. People have shared, "I have to be here for my kids." They're not ready for the next step. You can see how the approach to dimensions of the cancer treatment experience that are frankly outside of the clinic, so much of this happens outside of the clinical encounter.
We have to recognize, as clinicians, but also as part of a healthcare system overall, how much these dimensions matter because they are a key part of what factors into medical decision making. This comes into one of our key takeaways from sessions like this, is we have to raise the cultural awareness, just that awareness among the medical community on the fact that cultural differences exist to begin with. That may be news to some folks listening again.
The second step is not just acknowledging the differences but also the cultural sensitivity dimension. That specifically means that you're not assigning value to one particular belief. You're not saying, "Well, what I believe or my people believe is better than what you and your culture believes." That level of cultural humility and demonstrating cultural sensitivity, even openly to the patient, will be crucial to establishing that cultural safety, that safe space where even if you don't look like the person that you're giving care to, that they trust and respect you because you've shown respect for their culture and their beliefs, even if it's not the same as your own. We can't underscore that enough. It can't just be about finding. Creating a diverse workforce does mean diversity and thought, as well.
Susan Matsuko Shinagawa:
If I can just-
Jennifer Gao:
Go ahead, Susan.
Susan Matsuko Shinagawa:
... piggyback off of something [inaudible 00:46:04] said about how we need to educate the providers about the differences in the different communities, I think, that's also true of the researchers. I think, it's true of the funders of the research. I think it's true of our own community, at least, for Asian American communities. You always hear the term API and I use API, specifically because that's still what the NCI uses when they list their data from for the most part. When you say API or AANHPI, most Asians think Asians. They're not thinking about Native Hawaiian and Pacific Islanders. I think, a lot of researchers and physicians and funders are also thinking that way. It's unfortunate because the Office of Management and Budget, which for whatever, classifies race in the United States in 1997, prior to 1997 Asian Pacific Islanders were together for about 10, 15 years, were categorized together. Excuse my dog. In 1997, OMB changed that, separated Asian Americans from Native Hawaiian and other Pacific Islanders. There was [inaudible 00:29:28], you can tell me, I don't know if it was a law or just a...
Kekoa Taparra:
Yeah, it was public law.
Susan Matsuko Shinagawa:
Public. Okay, so it's public law that these populations are supposed to be separate when we're doing data collection and when we're reporting on data. API is still the predominant classification at the National Cancer Institute when they're talking about data, when they're reporting out the data. I think, it's really important that we talk about this and to educate everybody about what API means and why it's so important to separate AA from the NHPI.
Naoto T Ueno:
Just to add to Susan's comment, I think it's really about how much investment comes from the federal government. If you look from the perspective of even Asian American or Pacific Island or Native Hawaiian in terms of the focus research related to this topic, is at the bottom at this moment compared to any other demographic. There is one, the Pacific Island and Native Hawaiian, they're forgotten. Asian American, somebody mentioned about this, it's a historical aspect of how the particular Japanese, Chinese came about a hundred years ago. Then, eventually they are considered to be the smart people who doesn't get cancer, so there's no need for investment type of thing. Believe it or not, this truly is impacting the entire policy on the federal level and there is no equity at this moment. I think, there's a need for fundamental change on understanding.
I think, what we're talking here about is we like to say Asian is one, but Asian is not one. Everybody have a different story and background and with a belief. If you look from the world level, the Asia has probably the largest population. Of course, we have a diversity that exists. One of the things that's really... When I move from mainland to Hawaii is that when we do demographic search, they just put Asian actually more, but if you go to Hawaii, they're not going to just put Asian. You're going to have to identify yourself more differently from where you're from. Same thing with Pacific Islander. It's not just Native Hawaiian. Every island has its own uniqueness actually, and different language and culture.
Rich Pazdur:
One of the things that we found very interesting, we had a similar episode as this talking about Native Americans on reservations in the southwest of the United States, the Navajo Nation, other nations.
One of the things that came out that I found shocking was in some of the native languages, there wasn't even a word for cancer. I wonder if that exists in the Native Hawaiian language or languages, so to speak. It's somewhat of a western construct, so to speak, the concept of cancer. They had to basically formulate a word like unbridled growth or something like that to convey the principle of metastatic disease, so to speak. It really points to what we consider cancer may not even be inherent in the culture, so to speak. I don't know if [inaudible 00:34:26] could comment on that. Is there a word or I just don't know. We just found that-
Kekoa Taparra:
We give some historical context too in terms of Olelo Hawaii which is our Native Hawaiian language. Olelo Hawaii was spoken throughout our [inaudible kupuna's time, our ancestors' time. Unfortunately, with the legal overthrow of our Hawaiian kingdom, we were our own Hawaiian kingdom founded by the first ruling under one kingdom by King Kamehameha I. That kingdom, after it's being overthrown, Native Hawaiian, our language Olelo Hawaii was actually illegal to teach in the public school system until the 1970s. There were multiple generations that lost the ability to speak our mother tongue. I think that that point can't be deemphasized in the context of, do we know, how did our kupuna, how did our ancestors really talk about cancer at the time? I actually looked up the Olelo Hawaii word and it's two words. It's mai and ai. Mai, I know is just in general, people [inaudible 00:35:43] know what mai means, but colloquially, but in general it's illness or disease.
And then ai comes from ai, was about eating. I think in terms of, at least on our established Hawaiian dictionary, mai ai is kind of cancer of the throat, which may give some historical context of where maybe native Hawaiians thought cancer arose from. We have different parts of our body, like [foreign language 00:36:14], which is our belly or center. That's like what the western equivalent of our heart would be, our mind or soul. There are different parts of the body that are related to different sorts of diseases.
I think, in general there are different ways of communicating illness. I think, we have to really look to the kupuna. I don't want to speak for them. That's why in terms of how was cancer really dealt with and talked about back in, especially in ancient times, but especially during the overthrow and introduction of colonization. I don't know the data very well. In terms of oncology or cancer incidents, we definitely know that it's definitely higher now as a colonized area, an island. Yeah, it'd be very interesting to go back in time and see how cancer was really defined and thought of back in the day.
Jennifer Gao:
[inaudible 00:37:29], in the South Indian language, is there a word for cancer? I know in Chinese, you can describe cancer, cancerous cells or just a growth. Is that also the same in India?
Manju George:
Yeah, I was trying to remember what the word was. I'm not sure whether [inaudible 00:37:49] speaks the same language as I do. I speak Malayalam. I'm from Kerala. We do have a word. It's [foreign language 00:37:56] which means cancer. It's a direct translation for the word cancer, but then commonly, people say cancer. It's just one of those words like orange. In many languages, orange is orange, so like that. I'm curious to hear it in Tamil.
Ishwaria Subbiah:
Yeah, exactly. My family is from the south of India and they're in Tamil. In Tamil, we speak Tamil. The word for cancer is one that I think was created after the fact [foreign language 00:38:25] and noy, as a suffix, is illness. It's disease. You could have a illness of different parts of the body. The initial prefix, I believe it means the body as a whole. I'm feverishly texting my parents and my husband to see, "Hey, what is the first part of the word mean?" Because you're absolutely right. Is there even a way that your culture [inaudible 00:38:51].
Rich Pazdur:
That's very fascinating when we had this discussion with the Navajo Nation. It never occurred to me that this might be a western construct, the concept of cancer and people viewed it differently. That obviously, affects how people perceive the disease even.
Ishwaria Subbiah:
You see the complexity of the words too. For us, it's two syllables and you see across cultures, across languages, how complex of a descriptor it can be. It's like those moments where the translator, the patient speaks for a few minutes, a translator turns to you and says, "Yes."
Rich Pazdur:
I wanted to turn this conversation to some regulatory issues that we have at the FDA. Obviously, we have a big interest in promoting diversity in clinical trials. We see a large number of clinical trials being done in oncology. They're usually multinational trials with decreasing enrollment in the United States and an ever increasing number of enrollment outside of the United States, especially in Eastern Europe, but are burgeoning interest in clinical trials in mainland China. Here again, we get into this situation, are the Chinese and population in China identical to the Chinese population here, or representative of the Asian population here in the United States?
Really, when you take a closer look at some of these issues, especially if one goes beyond the immigrant population, the diseases can be much different. For example, in a cellular carcinoma where in mainland China or in some of the Pacific rim countries, hepatitis B is the predominant cause of hepatocellular carcinoma. Whereas, in the United States that is not necessarily true. Very similar issues might also apply to gastric cancers. I'd like the panel to discuss this. How do we get greater participation of Asian Pacific Islanders Native Hawaiians into clinical trials?
Susan Matsuko Shinagawa:
Let me start with that. I know that all the clinicians are going to have a different perspective on this. One of the things that from my experience and my advocacy experience that I know, first of all, there is such a low participation in clinical trials in the United States across the board anyway. When it comes to Asian or native Hawaiian Pacific Islander populations, it's very low. I think, part of that has to do with some things that are cross-cutting and some of the things that are specific in terms of cross-cutting. One of the things is that there are some populations, some people might find surprising under the Asian classification that are very, very poor, that there have less education. Like NATO said earlier, when you think about Japanese and Chinese as being the sort of this model minority being smart and not getting sick. That's absolutely not true.
I hope most of the people that are participating and listening into this conversation know that, but not everybody knows that. Part of the problems with clinical trials, especially with consent, it's written in a very legalese way. I've participated in a lot of clinical trials. For me, to read it and understand it, a lot of times, you almost have to have a law degree to understand what they're talking about, certainly, a medical degree.
A lot of populations don't talk that way. They don't think that way. We're not just talking about the legalese part of it, I'm just talking about the whole health issue and what the purpose is. Another issue that's really important is that a lot of clinical trials, the patient here or herself has to cover a lot of the excessive studies and tests, the extra blood tests. You have to go back and forth to the clinic a lot of times to get these things done. That's a lot of money, which a lot of people can't afford. There are just a lot of issues, I think, that have to be addressed, have to be changed. I think, we need to change the paradigm of how we approach clinical trials in our communities.
Manju George:
I will just talk about the patient voice again from my side. I'm part of COLONTOWN, which is a colorectal cancer patient and caregiver community. We have about 8,500 members now. From what I have seen is... For example, we have this subtype of CRC, which is very aggressive, with people who have a beat up mutation. Recently, I also work with people and provide education about trials. What I've seen in the Asian community, maybe [inaudible 00:44:13] will say something about it too. Because a lot of people who come to the US as immigrants have advanced degrees and they work in their medical field or research or tech field, one of the first things they do after they get diagnosed is they Google everything. They find all the information and people are very systematic about it, and by the time, they are the kind of people who take a list of trials to their doctor and say, "Which one should I get on?"
I think, that again, with lumping the whole AANHPI into one group, we are thinking of in... For example, with Asian Americans, they have a different problem because they use all resources possible. They get 15 different opinions. They have members of their family who are doctors, so they call everyone and they ask everyone everything possible. They have all this information and they make the decisions. Maybe, access is not so much of a problem for them, but then in the same group, the other part of this AANHP maybe, that's not the same. Again, another point to say that lumping everyone together is probably not the best idea. Then, separating them out and finding out how to increase or first identify the barriers to each of these different groups and then tailor something so that you can get better participation maybe the way to go.
Ishwaria Subbiah:
Absolutely. You recognize the importance of having cultural awareness on barriers that are unique to the person that you are taking care of in front of you. The good news is, just in Asia, there's 48 something countries and in the Pacific Islands you're talking in another 16 or so nations, so we don't need 70 different handouts or 70 different...
PART 2 OF 4 ENDS [00:46:04]
Ishwaria Subbiah:
So we don't need 70 different handouts or 70 different link outs on your website. The themes are common. You hear the common themes across different underrepresented groups and cancer clinical trials. And you see how there are opportunities to develop content and an approach that would be relevant to different subgroups where mistrust may be a key driver, where not wanting to be a burden may be a key driver of whether they participate in clinical research, or the question mark and uncertainty of a clinical trial's outcomes in and of itself would be a barrier for some people. So it's when we look at it from a system level standpoint, we see the commonalities, the common threads in our experiences coming out across the globe and where we're well positioned as a healthcare community in any, is we tackle this head on. We don't beat around the bush when it comes to mistrust. We don't beat around the bush when it comes to, you're participating on a trial. We don't know the outcomes. That's why we're doing this study. But this is what I want to share with you about what we know so far.
Rich Pazdur:
But I thinking know the Covid situation kind of ripped open a bandage of medical distrust of the entire medical system, not only of clinical trials. And one of the things that we have really advocated on is having participation of many people into different types of people into clinical trials is an attempt to build trust. The reason to have people participate in clinical trials is not just to get data points or to see if there are any similarities or differences between ethnic groups, but there is also a social imperative, so to speak, of building that trust. And that's one of the things that we have really advocated in our whole concept of diversity, of participation in clinical trials, whether it be in the African-American community, native American community, the Asian Pacific Island or Native Hawaiian C communities, et cetera. But NATO, this has your name on it, this question, so to speak, because you're the cancer center director there, and obviously people are going to be looking at accrual on clinical trials since you arrived. What are you going to do about this? Putting me on the spot, Rick. Yes, now we go back. So we should tell people I was at Vie Anderson and NATO was there too, and I hired him as a fellow basically so I could put him on the spot.
Naoto T Ueno:
Thank you for this. Excellent question. And I think it's a big challenge. So if you think about it, our impact area serves about 2 million people, 1.4 for the Hawaii and 0.6 for the US affiliated Pacific Island. But what we're accruing is not reflecting that. So I'll just give you some issues that's lined up. One is access we just talked about, but the other is the overall investment even from pharma. So when we get these trials that we try to open, they expect us with the same price with MD Anderson to open at our place actually, which is one, the price point is different because we're more expensive in general. The second is we don't have that same infrastructure other places actually. So this cookie cutter approach or budgeting and finance is a big, big issue for us. And so that's really has an impact. And the other is Kwa could know about this, but we don't have our own oncology training system on the island.
So most of our people who come from Hawaii or US affiliate Pacific Islands, they need to go to the mainland. And obviously we're in a vicious cycle because we don't have a system. So they may not come back actually. So this is where I'm trying to work on trying to renegotiate with pharmaceutical company about the pricing point expectation to be different, saying that, oh, you should open the trial in three months. It will not happen in our area because of the system that we have. We are planning to really think about creating a medical oncology fellowship or other educational opportunity for the people from Native Hawaiian or people who lives in Hawaiian and US Pacific Island. So I wish I could have one answer to answer your question, Rick, but there's going to be a multiple tackle that we have to do, but it is a missed opportunity considering the concentrated agent and the Pacific Islander living in our area. So my goal as a director is to tackle this area over five to 10 years so that we could be the model of serving our community.
Kekoa Taparra:
I would love to jump in on that as well. So I, as a resident here at Stanford, I even before starting residency here, Dr. Quinn Lee, who's head of, has been incredibly supportive of my efforts. I've actually developed a clinical trial, a hundred pages worth of protocol, and I have now submitted three times to a company that I have, well not name, but the design is specifically to look at pinot nut induced oral cavity cancer, specifically for the Micronesian population in Hawaii. The entire accrual is dependent on, especially patients from Hawaii and in the Micronesian communities because we know that we have very, very terrible outcomes in terms of the treatment of these be non induced oral cavity cancers, which mind you are different from South Asia because in the Pacific, these Micronesian communities in general, they have the highest rates and entire world of children and middle schoolers eating bele, chewing bele nut, and getting addicted at such a young age because they're trying to chew the beetle nut to give to their grandparents who want asking them to chew it so that they get addicted and then they develop these oral cavity cancers at such a young age as a trainee, very dedicated to my communities.
I have not stopped fighting for this clinical trial, but I've been met with so many barriers along the way. And I think it's not necessarily always an infrastructure issue. I think it's sometimes something a little bit larger than that. But I will say that at this particular company, there is someone who is on my side and really, really advocating for me. And I got actually a call at 2:00 AM this morning, which I did discuss some things about this particular trial. And so I'm very, very grateful for that particular individual. But regardless, I do think that trials need to be culturally competent and understand where the disparities truly lie, because that's how we ended up making progress in this field of clinical trial work. And as at a side project, I run a lab of about 12 or so predominantly native Hawaiian of other Pacific Islander medical students, undergrads and graduate students.
And we did a analysis of over a thousand clinical trial papers published in jama, J C O, new England Journal of Medicine and The Lancet. And what we find is that among all racial and ethnic groups in the United States, native Hawaiians and other Pacific Islanders are the least published. It's actually a median from 2012 to 2022. And I'll be hopefully discussing this at asco, there was a median of zero per year of any publication that actually included native Hawaiian other Pacific Islanders. So I think there's a lot of work to be done in this space of clinical trial and inclusion for Native Hawaiian and other Pacific Islanders. Right.
Rich Pazdur:
Could I ask you a question, a personal question. Will you go back to Hawaii after finishing your training?
Kekoa Taparra:
So all my family, my mom, my dad, my grandparents are all back home. And my goal has always been to return to the islands job opportunities, sometimes can be challeng, you
Naoto T Ueno:
Could be speaking, I'm going to be like the head hunter for Nedo here, so to speak. Hey, you're going to offer him a job. A job you're interested. But anyway, but send me out job form right now. But I say I was not going to ignore about the mistrust issue, but this long history behind and you know, talked about the history of the kingdom and how the statehood was created, it is a very deep rooted issue that, and we need to really spend time and particularly like myself, infu is not from Hawaii. And if we look our workforce of our cancer center, we are not diverse in a sense. We are diverse in a certain sense, but it's not reflecting the native Hawaiians and Pacific Islanders. So that's one of our challenges. And of course outreach is really important, but we also have to tackle our diversity of our cancer center. We have to address the diversity of our trainees. And so there's this layers of things that we have to tackle actually. And because we need more people who's Kawaii yourself or who is from originally from Hawaii and really contributing to this area, that does also help a lot.
Susan Matsuko Shinagawa:
Actually, I wanted to mention, so in the mainland, I think that whole issue of diversity of the providers in the clinical trials, investigators is really important too, because you are more likely, if you are somebody that's say HM or Vietnamese or Cambodian, you're more likely to sign up for a clinical trial if the person you're talking to can speak your language or knows at least has some kind of connection to you. And I think there, so not in Hawaii, but in the rest of the United States, there is, I think there is as not as a diverse population of physicians and providers in some states. Okay. I will say that it's probably not true in California. It's probably not true in Texas and New York, but in a lot of states it is really true. And so I think that's really important too because that whole trust issue comes in is very important. And Rick, I just wanted to mention one thing is that I know that in the Hmong population, there was no word for cancer and a bunch of the community leaders and everything came together and they actually devised a medical dictionary. But I think that word for cancer was several syllables long because it was several words connected.
Rich Pazdur:
Yeah.
Jennifer Gao:
Can I ask Susan, to build what you said about that informed consent, do you think that might be a barrier to clinical trial participation, that because there are so many diverse languages in the h p population, the chances that you'll be find a provider that speaks your language and has the cultural knowledge may be very challenging. Do you think that's playing a big role, a small role, or not at all?
Susan Matsuko Shinagawa:
I think it plays a big role if you're just talking about English, because I mean, think, I hope things have changed a little bit since I was involved in doing a lot of clinical trials. That was both as a patient, but also as somebody that worked at an academic medical center and was involved in preparing clinical trials. If your mindset is to protect the institution and the pharmaceutical company at all costs against any kind of liability, then those consent forms are great. But if your mindset is to try to recruit people to become clinical trials participants, then those don't work as well. And there's so many strict things that are often in them that don't work for a lot of populations. That's why I see. That's why say, I think there really needs to be a different paradigm in terms of preparing those clinical trials, consent forms.
Rich Pazdur:
I think you really put on the head, because I don't even know if patients read those. Okay. I know they definitely don't understand them. And ultimately, I always use this word or a concept that when I was in practice, people when I presented them this form and they would look at it, they would ultimately ask me the ultimate question, would you give this to your mother? Okay, would you give this to your wife? And that's what they're looking for from a physician. That's why they go to a physician for the most part. And if they don't trust the physician, then they should really find another physician, somebody that they can work together as a team. But ultimately, these 20 page documents that include every side effect known to mankind, including death, okay, blah, blah, blah, blah, blah, blah, blah, blah, blah, blah, and death. Okay? It's like, what's going on here? I don't even understand half of these words like neutrophils and hemoglobin and you name it. And I really think that we have to do a better job. And I think you're right, Susan, who's writing them and for what reason, it remember, the whole idea was to give consent, meaningful consent to people about what it is not to protect the pharmaceutical industry or the institution. That's for sure.
Manju George:
Yeah. If somebody could have an infographic which tells you what the child was about and why you are doing it, I mean, I'm a patient advocate faculty in the A aac ASCO methods in clinical cancer research workshop. So I get to look at a whole bunch of informed consent forms. And then nowadays you find them describing what a blood draws mean. If you're a cancer patient, imagine you don't know what a blood draws, but then they won't tell you what is known about the drug that they're testing, the preclinical information because maybe that's more relevant to the patient who's signing the informed consent than a description of how you poke your body to get a little bit of blood, which is they're explaining the wrong things to people. And that's what I feel that an infographic would be so simple to understand and easy. And then you can have all your legalese to protect your institution and the pharma in a separate document, not part of the informed consent
Rich Pazdur:
Trying to work on this. We have a project that we just launched, and one of the protocols is with the NCI project pro pragmatical, which is very simple eligibility criteria, reflecting how people would be treated in the community and not do a lot of stipulation of what hemoglobin level and what platelet count, et cetera, but what a normal doctor would use the drug for. And then really cut down the informed consent. And I think the last one before this was 15 pages and we got to cut down to five or something. But here again, it's this constant battle and I've been in the field since 1979, and you could take a look like this as far as the number of pages as the consent over time. Usually when I started, it was two pages, then it went five pages, then 10 pages, and then description of biopsy techniques and everything else that goes on. And I don't know if this is that meaningful to patients. And here again, I think as Susan pointed out, and you man, you too. We have to really ask what we're doing here with this.
Naoto T Ueno:
Rick, I'd like to ask a question. So access issue, we talk about in islands, and some people can't get in clinical trials because of the monitoring. So is there a new trend for remote monitoring?
Rich Pazdur:
Yeah, we're really looking into that and we really endorse that it's moving the monolithic pharmaceutical companies also. Okay. Because remember, they have their own bureaucracy and they want to do everything possible to ensure that the drug is examined carefully, that any regulatory authority doesn't ask them a question and then they don't have the answer to it. So they liked a lot of this bureaucracy, so to speak. We're more in favor. And we are writing guidances specifically on really remote monitoring and other issues of really offsite treatment of patients on clinical trials and getting blood tests and doctor visits, especially with telemedicine. I think the whole covid situation really prompted us to really examine how we practice medicine and how we do clinical trials. And I hope that that momentum is not a lost here as we move out of the pandemic.
Manju George:
Yeah. May I ask a question? I was kind of wondering that we were talking about how in this large group of A and N H P I, like we are, I think everyone is agreeing that it's probably not a good thing to lump all of them together. So hypothetically, if we were to think of a situation where we are actually separating them, how would that process work? What would be how from, say, two years from now they're separate. If that were to happen, what are the things that need to happen be in place for such a thing to happen? How does it work?
Rich Pazdur:
Are you asking me or anybody?
Manju George:
Yeah,
Rich Pazdur:
This is a fair game for anybody. I've been talking a lot, so I'm going to turn to Ishwar and she could start off maybe.
Ishwaria Subbiah:
Sounds good. So we already talked about geographic country of origin. We talked about recent immigrant versus second generation and onwards. We talked about what brought us to this country versus whether it's work or education or we came with our families. There are so many ways we can break this down further and further. This being this cultural awareness sensitivity and competency up. I mean, at the very basic level, and I'm talking very basic level, most of us are practicing in settings with electronic health records. We really want the E H R to accurately reflect what a person self identifies as their cultural background. And there may be opportunities there where they can put in information about whether they are first generation, second generation onwards. So the lowest hanging fruit is in a topic like this where it's entirely the patient's self-report, much like a lot in the symptom management space is to set up the platform infrastructure so that patients can provide us that information.
Tell us how you identify all the ways you identify race, ethnicity, gender, and really many dimensions of yourself that we know impacts cancer outcomes. And with that information, how we build cultural competency amongst our care teams is to plant that seed, to pay attention to someone's background and to ask open-ended questions, not make assumptions in the clinical encounter that how news you're going to share is going to be perceived. When you have someone from a certain background in front of you, you're not going to be running to a phone to call a Cambodian doctor or to come and talk to the person about clinical trials. You're you, you're not going to have that type of, I mean, it sounds absurd, but I mean that intentionally, that responsibility for culturally competent cancer care really does rest with each of us. Where we have an incredible opportunity is all the times, years in life where a person doesn't have cancer or doesn't have to deal with cancer.
There are countless opportunities in the general community, especially in the faith communities within each of these cultures to have outreach, to have awareness about what clinical trials are, what cancer is, what cancer screening means, what are the late, what's the latest in cancer treatments. I kick off every single year with a what's slated as a one hour session at our Hindu temple here, but it's almost always two and a half hours with the community sharing what we know so far about cancer, cancer treatment, cancer clinical trials, advances, and it's, we don't do it in the context of any professional role responsibility. This is the kind of meaningful community service that you can see making a difference. We also know from an education standpoint, there are studies done on this that a one-time educational outreach to any community makes a huge impact in that immediate post-test measure. But when they asked the South Asian populations who participated in this raise your awareness about cancer and cancer research workshop when they checked in on them a month later, every.
PART 3 OF 4 ENDS [01:09:04]
Ishwaria Subbiah:
...Cancer research workshop. When they checked in on them a month later, everybody was back to baseline. So this type of outreach, spreading awareness, we have to really live the mission .and all of us.
Rich Pazdur:
One of the things you also, to answer, somewhat tangential to [inaudible 01:09:21] had said, is something that we're doing at the OCE, particularly with the African American community, and it's called #blackfamcan, and it's a Black family cancer awareness project where we really believe that a lot of medical information is derived in the family itself, the family group particularly in the African-American community, and I'm sure in the Asian communities, also in Pacific Island community, the importance of family. And really that we need to emphasize that cancer needs to be discussed about. And that's not only about the treatment of cancer, but really the early diagnosis of cancer.
Because we find in all of these communities, and here again, this is another subject that we could talk about, is the tendency, especially in the immigrant population and some of the more economically deprived subgroups that we're talking about here, of delayed diagnosis and presentation with advanced disease. And here again, if you had a family supportive environment that actually took the time to discuss this, both in the regular family but also the extended family and many times in the African American community, this includes the religious environment or the church environment also, it's really to have these very early discussions and I think we really have to focus on that also.
But that's one of my major concerns is obviously in any of these subgroups that we're talking about here, particularly patients that have not robust economic resources associated with them, that we find very advanced cancers being diagnosed. And I'm wondering if that's true in the especially the Pacific Islander or Native Hawaiian communities that you'll see [inaudible 01:11:25] and [inaudible 01:11:28]. Anybody want to talk about that?
Naoto T Ueno:
Yes. So late delay diagnosis is a major issue. And once again, it's access and mistrust and then there's multiple component contributing. And so what, Rick, you're saying is totally correct in a sense. So that's why community outreach and really trying to create this line of communication with a multiple different ethnic group or demographic is extremely important including trials and diagnosis. And there's this overall health trust that we have to tackle so.
Kekoa Taparra:
Yeah, I would just comment also that even in the setting of early stage disease for cancer among the Native Hawaiian and other Pacific Islander communities, we still see higher mortality and I've been a part of publications on this topic as well where we see, it doesn't necessarily always have to be later stage disease because I've seen some publications where Native Hawaiian and other Pacific Islanders actually aren't even being diagnosed at later stage diseases comparatively to other groups, but they still have a higher mortality. And so from a clinical standpoint, what's the important question to ask? Is it the stage of diagnosis or is it just actually them not living?
And so for me, I take a step back and look at the mortality rates as well. And so I'm not saying that it's not right, there are definitely a number of cancers that Native Hawaiian and other Pacific Islander patients end up getting diagnosed with later stage disease, but it just intrigues me that, and it's disappointing that, even in the early stage setting, we have higher rates of mortality compared to other racial and ethnic groups. So that's something that I don't always know how to interpret. But I do see it at least in the data and the collaborations that I have with a number of people, including NZI and other institutions on the east coast.
Rich Pazdur:
I think you're right, [inaudible 01:13:36]. The mammography screening rate on the Hawaii is quite high. Actually I think we're on the top of the state in the United States, but still the mortality is much higher than compared to other states. So there's other element that exists. On the other hand, the lung cancer screening, we're at the bottom than any other places. So we see it is a very aggressive disease or advanced disease because we're not detecting the disease.
Manju George:
[inaudible 01:14:10]. Yeah, I was kind of thinking how about lifestyle things, right? If you look at alcohol consumption or smoking, what's the role of things like that in this group, [inaudible 01:14:24] and HPI? I think even that may be different. For example, among Asians, at least women don't smoke generally. It might be different for those people. That's again, immigrants moving to the country may still follow the norms back in their home countries, but the second generation Indians may not be following those rules. But I was wondering what's the prevalence of those kind of habits and cancer in this diverse group.
Rich Pazdur:
I could mention about risk factor a little bit different ways. So the Cancer Center released a body composition study and a lot of people talk about obesity and eating. So we like to say that weight gain is an issue, but then when you actually look into this different demographic like Native Hawaiian and certain Asian populations, like the Japanese, on the surface BMI is not that bad. But then there's a deposit of add fat tissue uniquely more toward the liver area and that could be potential microbiome and other risk factor changes. So those are really a good question that you're asking. And just taking the native Hawaiians and smoking and beetle nut chewings, Pacific Islanders and then obesity, these are many things that we're tackling from different angles.
But I think each of the ethnic groups, once again, have a very different impact and that's what we're trying to understand so that we could have a much more not personalized, but demographic oriented cancer prevention strategy. So this is where we go back to this how much more spending we should be spending in terms of research related to this topic. And if you look from age and are we done, everybody, the answer is no. And so we have a lot of things that we still don't understand.
Susan Matsuko Shinagawa:
You look at Chinese women in the United States have very low smoking rates, but they have the highest lung cancer rates among Asian women because of secondhand smoke. And so those kinds of things, I think that education. We can talk about, which is a whole nother topic, what the tobacco industry now that they've kind of run out their...
Rich Pazdur:
Luck.
Susan Matsuko Shinagawa:
Yeah, luck in the United States. Have gone to Asian countries and other countries and have just given away all these free cigarettes. And then when those immigrants come to the United States, when they immigrate to the United States and they have high smoking rates, again, it's among the men and not among the women, but they still get the lung cancer. And so it's these terrible disparities. So there's education, there's cultural issues, and also what do you screen for and when do you screen for them? And we talk about hepatitis. When do you screen for that? And I think that all comes into the clinical practice in terms of you have to look at different groups and what you make sure that your patients get screened for and when they get screened for it.
Rich Pazdur:
Yeah.
Ishwaria Subbiah:
Susan, and actually all of you, you raised points where cultural patterns may pose an increased risk for cancer. And what we also see, conversely, is an opportunity to truly build trust with the community because there are practices across cultures that actually may lead, to cancer prevention may be a bit of a jump to make, but there are certainly practices across cultures that may actually be very beneficial in the long run that you see other cultures looking to adapt. In the South Asian cultures and Indian cultures, just as an example, there are many spices that are routinely used as part of day-to-day life in the foods. And there are antioxidant properties demonstrated in the preclinical settings and some case series, et cetera. Whether it's turmeric, [inaudible 01:18:57], whatnot, ginseng, ginger root, et cetera. And then you also have many of the dairy products from South Asian cultures have a very diverse microbiome to where it tastes different and it's so fundamentally different than what you would purchase in a Western store here. I share all of these because there are key learning points from each culture that we can and should mirror back to show how much we value cultural practices that should be considered for broader adoption.
Tamy Kim:
So just to wrap things up, just to give you a heads-up that we are thinking about starting our own social media campaign to raise awareness to advance cancer in patients in the AA and NHPI population. We're in contact with our lead who's leading the national BlackFamCam campaign, Rya Blakey. So we are getting a lot of ideas from her. But just to wrap this conversation on cancer up, from your perspectives, what is the most impactful thing that OCE can do to advanced patient care in the cancer population or for cancer patients in this population? And I'll just go from my screen. I'll start with [inaudible 01:20:24] first.
Rich Pazdur:
That's always a tough question, but I think it's really about this campaign awareness of there's a very diverse population exists. And ultimately it's really about the coding of the background of the demographics. I didn't really talk about this, but there's also, in Hawaii we have a large mixed race population that exists so it's not that simple that we should be talking about it. So I think this inclusiveness and trying to increase awareness and that is a first step. And that would drive many of these clinical trials or even patient reported outcome, how things are going to come. So that's probably the first thing I would focus on. Yeah.
Tamy Kim:
Okay, great. How about [inaudible 01:21:16]? I'll turn it over to you.
Ishwaria Subbiah:
From an OCE standpoint, there's something to be said for hearing your culture and your country, your area of the world mentioned and raised by an entity as central to cancer treatment in the United States as the OCE. So you're talking about taking the barriers to clinical trial participation, taking the strengths and the elements of cultural awareness, cultural sensitivity and elements that all inform cultural competency and putting it out there as a part of education or social media campaign or however, as enduring materials. The themes will be common so you don't have to create separate ones for each country, but the fact is there's something to be said for hearing an entity with as much gravitas as the OCE taking time to address your population, your people, if you will.
Tamy Kim:
Okay, so [inaudible 01:22:23], you're next to my screen so you're up.
Kekoa Taparra:
I'll try to keep it simple, but for me, I think from OCE or an FDA perspective, I think that the requirement for the documentation both in clinical trials as well as clinical trial publications need to mandate the inclusion of Native Hawaiian and other Pacific Islanders as it is a, as we've discussed in OMB 1997, federally recognized racial category. I would rather, as a clinician and Native Hawaiian myself, see that zero is in the trial than not being there at all and just leave it up to my interpretation of whether or not we were included in the first place. Because that has clinical implications of whether or not I think my community actually sees ourselves in those trials. And so I think that that's something that I advocate for. I don't think it'll ever happen, but I do think that requirement for the five federally recognized racial categories in clinical trial publications is something that we need.
Tamy Kim:
Okay, great. Thank you so much. [inaudible 01:23:27]?
Manju George:
Yeah, I'll give a short example and then I'll tell you the point. So when my hemoglobin was low in like 2014 or something, my endocrinologist suggested that I get a colonoscopy. At that time, I didn't think, I'm healthy, I eat well, I had no family history, so I said no, why should I do it? I have heavy periods, that's why I probably have low hemoglobin. And then the next time I went to visit her, my hemoglobin was back up. So she asked did you get a colonoscopy? I said no. And then at that time there was this resident who had just moved from India with her. And so when my endocrinologist went out of the room, I asked her why should I get a colonoscopy? Indians don't get colon cancer, right? It's all the white Americans who eat meat and potatoes. So she actually looked at me and said the rates of colon cancer are actually increasing in India too.At that moment I heard that and I was like, not for me. I would not get it anyways, right? But then a couple of years later when I had blood in stool, that was the conversation that I remembered about her telling me that, yes, not like what you thought, things are changing.
So what I feel is that if you look at the medical professionals in the country, you have people from all, the population that you are actually serving, that is represented in the clinicians. So maybe it might be a good idea to go back to your clinical task or the clinical people in the group and ask them based on their experiences, based on their experiences with their families, based on their culture, what are some of the things that they have to keep in mind when they treat people of the same race or ethnicity? And I think creating some guidelines or cultural competencies based on their individual experiences might be really valuable. Because then you don't have to look outside you have the ability and the wisdom and the knowledge within your ranks to create something that's useful to people.
Tamy Kim:
Thank you, [inaudible 01:25:35]. Okay, we're going to turn over to Susan and then I'll turn it over to Rick for closing remarks.
Susan Matsuko Shinagawa:
I would say the most impactful thing that the FDA and OCE can do is to separate Native Hawaiian Pacific Islanders from Asian Americans. I think it's about time. I think this discussion is really good and important that we did it together for the very reason of it shows why it's so important to separate them. And when we talk about the messages that you give of somebody, as [inaudible 01:26:07] was saying, if somebody talks about cancer in my people from my country, how important that is for OCE to say that, I think messages are important, but also the visual messages that you give. So I will just give an example. So for this beautiful banner that you guys have for this thing, it is a completely Asian focused banner and I don't see anything Native Hawaiian or Pacific Islander in it. And so that's one example of why it's important to separate. So if you want people to see themselves in the whole cancer control spectrum, then you need to put those messages out. Visual, but also I think just separating the populations is so important.
Rich Pazdur:
Well, we'll work on that. Okay?
Tamy Kim:
Believe it or not, we had to tweak it.
Rich Pazdur:
Maybe [inaudible 01:27:05] and [inaudible 01:27:06] can help us with the next banner so to speak, because we've been debating back and forth how to. It's such of a diverse group here and it's like how do you meld all of these cultures together and how do you even come up with a term for the project that we're working on that really is representative of the entirety of the whole group of Asians, Pacific Islanders, Native Hawaiians?
Susan Matsuko Shinagawa:
You proved my point. See?
Rich Pazdur:
Yes. And there's two things that I learned from this and I think we really have to focus on. And both [inaudible 01:27:39] and Susan pointed this out. Susan in the first comments she made and [inaudible 01:27:45] in the last comments. And that is misconceptions that people have. [inaudible 01:27:51] pointed out that she was under the misconception that Indians don't get colon cancer. Okay? Susan was told Asians don't get breast cancer. Okay? So you don't even have to worry about this lump. Right? Okay. Those were totally wrong. And we have to think about misconceptions that we have that we as physicians bring to the examining room, so to speak. And I think that's a very important one, not only the physicians but pharmaceutical companies and allied healthcare professionals. And these are the misconceptions that have to be created.
The other one is the whole issue of diversity as Susan and [inaudible 01:28:41] and [inaudible 01:28:43] pointed out not only in all of these groups, but trying to relate back to the country of origin may not be totally appropriate because these groups change basically when they come here. The etiology of the cancers may be quite different from somebody in mainland China versus a Chinese-American that has been here for two generations or three generations. So we have to keep that in mind. Not only is there diversity amongst the groups, but also within the group regarding the changes that occur when they come to the United States.
And I think that that's particularly important as we have discussions with pharmaceutical companies that just want to lump Asia equals let's enroll some patients in mainland China, Taiwan, Japan, Korea, basically and that checks the box, so to speak. And it really doesn't check the box and we really have to bring out the need to enroll patients here in the United States that are of ancestral origins from these underrepresented groups here. And that's one of the commitments that we have to make as we move forward in the discussions with the communities here. So that's my take on it and I really thank everybody for a very, very engaging conversation and I learned a lot and I really appreciate all of your time. And I'm going to hold, [inaudible 01:30:23], I keep on missing your name. Okay, [inaudible 01:30:26].
Kekoa Taparra:
No worries. You got it. You got [inaudible 01:30:29].
Rich Pazdur:
To get in contact with [inaudible 01:30:31] to get his job in Hawaii. I'm going to be the head hunter here, so I'm going to [inaudible 01:30:40].
Jennifer Gao:
You heard it here first.
Rich Pazdur:
I'm going to be sending you my check. I mean my bill, [inaudible 01:30:44].
Jennifer Gao:
And with that, we want to thank everyone for participating today for a great discussion and stay tuned for future updates from the OCE and conversations on cancer. Thank you again, everyone. Take care and goodbye.
PART 4 OF 4 ENDS [01:31:03]