How AA & NHPI Aggregation Masks Cancer Disparities

Guest host Dr. Fumiko Chino, a radiation oncologist at Memorial Sloan Kettering Cancer Center, leads a discussion on how the continual improper aggregation of Asian American (AA) and Native Hawaiian and other Pacific Islander (NHPI) populations downplays cancer disparities with Dr. Scarlett Lin Gomez, a professor in the Department of Epidemiology and Biostats at UCSF Helen Diller Family Comprehensive Cancer Center, and Dr. Kekoa Taparra, a radiation oncology resident at Stanford University.   Transcript Dr. Fumiko Chino: Hello, I'm Dr. Fumiko Chino, a radiation oncologist and Health Equity researcher at Memorial Sloan Kettering Cancer Center, and the guest host of the ASCO Daily News Podcast today.  In today's episode, we'll explore the unequal burden of cancer across diverse communities, specifically looking at how the continual improper aggregation of Asian American, Native Hawaiian, and other Pacific Islander populations mask cancer disparities.  Joining me for this discussion are Dr. Scarlett Lin Gomez, a professor in the Department of Epidemiology and Biostats at the UCSF, Helen Diller Family Comprehensive Cancer Center, and Dr. Kekoa Taparra, a radiation oncology resident at Stanford University.  My guest and I have no conflicts related to our topic today. Our full disclosures are available in the show notes and disclosures for all guests on the podcast can be found on our transcripts at ASCO.org\podcasts. We've all agreed to go by our first names. Scarlett and Kekoa, it's great to have you on the podcast today.  Dr. Scarlett Lin Gomez: Thank you so much. Great to be here.  Dr. Kekoa Taparra: Thank you.  Dr. Fumiko Chino: I'm so excited to start. My first question is just really general, which is can you describe your background, how you got into this research and why it's really meaningful for you and your community.  I can start just a little bit with myself. I'm Japanese American, my grandfather came to the United States before World War II and was actually excluded from coming into the United States under the Asian Exclusion Act.  He managed to come into the country walking up from Chile, ultimately started a farm in the United States, but was interned during World War II under Executive Order Act 9066. And he and my father and the family suffered some hardships from that but managed to rebuild.  I think kind of overall, I've been interested in how Asian communities and groups within Asian America and other race and ethnicity groups have had differing experiences within the American history and within American health, and specifically within cancer. Scarlett, can you go ahead and tell me just a little bit about yourself?  Dr. Scarlett Lin Gomez: Absolutely. I think that we find amongst ourselves who identify as Asian-American, Native Hawaiian Pacific Islander, that many of our unique experiences, life experiences, do have an impact on the cancer research that we do today.  I am a first-generation Taiwanese American. My family came over after the repeal of the Asian Exclusion Act in the early-mid-70s. Like many Asian American families, we settled where we already had some family here in the United States, and so that happened for us to be in central Washington state.  I grew up in central Washington, a very largely rural homogeneously non-Hispanic White population, and went to school largely in Spokane, Washington. So, eastern Washington.  During my time growing up there, I certainly, and my family had experiences with structural racism. I definitely saw firsthand among my family and our social networks cancer as a very strong cultural stigma.  For example, my grandmother's colorectal cancer diagnosis was actually never disclosed to her. In fact, this is very common among many Asian cultural populations. I also observed firsthand the relevance of our neighborhoods, our neighborhood environments, our social environments, and the structural context within which we live, work, and play, and how that really has a strong impact, not only on our access to health care but health behaviors and degree of social connections.  I then moved to the San Francisco Bay Area. You can certainly imagine the vastly different cultural and structural and neighborhood environments of that in the Bay Area compared to growing up in central and eastern Washington.  This is in fact—little to my knowledge—actually largely shaped the area of research that I chose to go into. In my doctoral dissertation, I had the opportunity to be introduced to and become involved with working with cancer registry data.  I was actually surprised to learn that in fact, within Cancer Registry data, there were some several dozen codes for distinct Asian American, Native Hawaiian, [and] Pacific Islander ethnic groups, yet for me, it was surprising: why don't we see any statistics by these specific ethnic codes?  In fact, we continue to see statistics for the Asian American population, Asian American Pacific Islander population aggregated as a whole. So, I set out for my dissertation to understand a very non-sexy doctoral dissertation topic to understand the quality of that data and how can we get the data to a point where we could start to report on statistics for disaggregated populations. That has really become a whole research program for my group today.  Dr. Fumiko Chino: It's so nice to hear the history of how you got into that and even just if you had happened to end up in New York City, maybe your research could have gone a different direction. Kekoa, can you tell me a little bit about your history and what brought you to do the research that you do today?  Dr. Kekoa Taparra: Yeah, absolutely. I am part Native Hawaiian from both my mom's and my dad's side. And just as a note, when we say Native Hawaiian, it's not the same as saying, native Californian or native Texan. That's not what I'm talking about. I'm indigenous Native Hawaiian, from both my mom's and my dad's side.  I actually had the good fortune to attend the Kamehameha schools. That's a school for indigenous Native Hawaiian youth in Hawaii.  And so, I grew up learning a lot about our history or culture throughout the Pacific, from Melanesia to Micronesia, and Polynesia. And so, with that kind of sense of identity, I really got a grasp of our community and our community's needs. And within my own family, I've had 10 family members, all of whom were Native Hawaiian, all die from cancer.  That was something that I grew up with just thinking that cancer was just something that people couldn't overcome. It wasn't really until college that I got really interested in research, and that led to my eventual attending of Johns Hopkins. I was in the lab of Dr. Phuoc Tran, who was an MD, PhD, radiation oncologist, and he was really the first to bring me into the clinic and I'll never forget, the first time he ever told the patient, “Let's cure your cancer.”  That was just something that I'd never heard before, given all my family members really struggled with different types of cancer diagnoses, none of them had the same thing. And so, really, from that point on, that's what inspired me to go to medical school. And towards the end of my medical school years, when I was actually applying for radiation oncology, I was a true bench scientist, and I'm a lab rat—that's where I've always belonged and felt like I belonged. But towards the end of medical school, when I was interviewing for radiation oncology, I met one of my mentors, Dr. Curtiland Deville Jr., at [Johns] Hopkins.  He was really the first to, at least through my application, recognize the kind of cultural and historical context of what I've been through, what my family and my community in Hawaii, we call lāhui, what our lāhui has gone through. And so, he really encouraged me to write about it.  That's kind of how I've ended up in this niche of speaking on Pacific Islander health. Again, just full disclosure, as a part Native Hawaiian, I can’t even speak for the whole lāhui. I’ll speak for myself and what I know.  Again, the Native Hawaiian lāhui is very different from the rest of the Pacific Islands. But overall, I do research Pacific Islander health.    Dr. Fumiko Chino: I love having both of you on this podcast because I feel your voices are so unique, but again, you also represent sort of different ends of the spectrum in terms of your research career, someone who's a little bit more senior and someone who's more junior.  I think that really gives us a well-rounded perspective. Scarlett, can you tell me just a little bit about the history of Asian American, Native Hawaiian, and Pacific Islander aggregation and why it might be a problem?  Dr. Scarlett Lin Gomez: I honestly don't know why the data are aggregated for. We're talking about people who come from 30 different countries and speak more than 100 different languages.  My guess is that historically, we have tended to aggregate because of convenience, but potentially also just lack of knowledge about the vast heterogeneity among these populations.  And so, I think for us who do research in this field, our hope is that by continually putting out the data that we can start to educate folks about why it is harmful, in fact, to aggregate.  Why is this a problem? I think that we hide disparities. In fact, if you look, I think part of the reason why the practice of aggregation has continued is because when you look at the aggregated statistics, with regards to cancer, it actually paints a very rosy picture for the most part, for most cancer statistics that we look at.  That's because the data are largely based on the largest groups, statistically the largest groups of those who potentially have been here the longest, but in fact, when we disaggregate, we know dramatic heterogeneity, as we would expect, because we know socio-demographically and based on immigration patterns and language patterns, these populations are really different.  So, we would expect, in fact, we do see that translate into differences in cancer outcomes. I will give a direct answer to your question about why this is a problem. I like to note the very poignant story of Susan Shinagawa, who is a Japanese American woman who was diagnosed with breast cancer. She's also my friend and colleague, and she was one of the first advocates who really inspired me in doing this research.  And so, her story is that she had to go to 3 different surgical oncologists to finally have her very prominent breast lump biopsied and looked at. She will recall that the reasons why she had to go to all these different surgeons was because they continuously told her, “You can't have breast cancer. You're Asian, and you're too young. Asian women don't get breast cancer." Her story isn't unusual.  I think the other harm in aggregation is that the community then thinks that our risks of cancer are low and that this doesn't affect us, and in some of the first publications we put out, there was a paper where we documented both high survival rates among Asian immigrant women, as well as high rates among young Asian American women for breast cancer. This was published in the American Journal of Public Health in 2011.  I actually received personally several emails from Asian women out in the community saying, because we had received quite a bit of press, this was reported out in the media, and they noted to me that they themselves were shocked when they were diagnosed with the disease because they thought that this was a “white old woman disease.” But in fact, it's not.  I have a strong family history of breast cancer, as many of us do, and other cancer sites. And so, I think that perpetuates not only the model minority myth but the cultural stigma of cancer as a disease.  Dr. Fumiko Chino: I can't wait until those oncologists that passed her by find out about the history of lung cancer in young Asian American women.  Scarlett, can you talk a little bit and I know you had mentioned this before, in terms of when you first started digging into some of the data, how challenging this research can be in terms of, for example, do every databases have granular data in terms of the Asian races and countries of origin, ethnicities?  Dr. Scarlett Lin Gomez: I think it's incredibly challenging and as an epidemiologist, we need the data. That's if we don't have the data, we don't even have a place to start. I think we've been fortunate to some extent within the cancer space in that the major databases that we really rely on to report the burden of cancer among our various groups do, in fact, have a fairly good capture of detailed Asian American, Native Hawaiian, and Pacific Islander codes, yet there is much that can be improved. The information on place of birth, for example, is really incomplete.  Also, our group has really started working with data from electronic health records. And that is highly variable in terms of data capture availability, the granularity of codes, and the availability of the relevant variables like birthplace and language across the different groups.  So, I do firmly believe, and I would call to action that I think we need to make a concerted effort to improve the granularity of data that are being collected.  I think the other challenge that has really come about is the small data problem. I think that our epidemiologic and clinical toolbox is very limited in terms of what we can do, analytically with small populations. But I would put forth that just because a population is small in numbers doesn't mean that they're any less important.  And so, I think that we need to do better in terms of developing better methodological and statistical approaches to being able to not only quantify but understand the burden of cancer in all of our populations.    We also need better approaches to begin to study the intersectionality of multiple marginalized social determinants, statuses, language, and ensure language inclusion in terms of really being able to adequately study and incorporate and include these populations.  Dr. Fumiko Chino: Can you talk specifically about some of the disparities that you've actually uncovered with your research? What are we talking about when we say that aggregation masks disparities? If I just say, Asian Americans are doing great from a cancer standpoint, what am I missing?  Dr. Scarlett Lin Gomez: One particular disparity I can certainly highlight is the high burden that we recently documented in a publication last year in the Journal of National Cancer Institute that documented the high rates of lung cancer among certain groups of Asian-American, Native Hawaiian, and Pacific Islander females who have no history of smoking.  Ours was the first study to actually show what the rates of lung cancer are in these particular groups. And it's particularly high—1.5 to 2 times higher among some of the Asian American, Native Hawaiian, and Pacific Islander groups compared to non-Hispanic White female never smokers.  When we look across the Asian American, Native Hawaiian, and Pacific Islander ethnic groups, we note that there are differences in that risk. One example is that among Chinese American females 80% who have been diagnosed with lung cancer have no history of smoking, the vast majority, 80% have never smoked, in contrast to smaller percentages among, for example, Native Hawaiian and some Pacific Islander groups.  Another pattern in terms of heterogeneity is that we actually did not notice the higher rates of lung cancer among Japanese American female never smokers. And this is an interesting observation, we actually note similar patterns for Japanese American women for breast cancer as an example, and this is something that definitely needs further follow-up.  In fact, we're conducting a study right now called “FANS: Female Patient Never Smokers,” which is the first study to try to identify genetic and epidemiological risk factors for lung cancer among Asian-American females who have never smoked.  Dr. Fumiko Chino: Kekoa, can you speak about what your research has shown?  Dr. Kekoa Taparra: Yeah, definitely. From the perspective of a recent paper that we published in the JAMA Network Open, we looked specifically at the Hawaii Tumor Registry looking at patients in Hawaii, who were treated for premalignancy, the DCIS (ductal carcinoma in situ).  What we found were the patients who ended up developing a second breast cancer after being treated for that first DCIS [that] the rates of the second malignancies both from ipsilateral and contralateral breast cancer were primarily seen in Native Hawaiians. Also, to some extent, Filipinos as well compared to other Asian ethnic groups.  I think that there are definitely some trends that we continue to see in terms of who might potentially be at higher risk, but in other work that we have presented at [2021] ASCO Quality Care Symposium (Abstract 80) with yourself, we found that in terms of it in things like overall survival, there are potential differences in terms of Native Hawaiian and other Pacific Islanders as well as even Southeast and East Asian groups.  And so, I think there's a lot of work to be done in terms of what are the kind of implications for disaggregation? What are appropriate techniques for data disaggregation? What is too much to disaggregate because we can disaggregate for a Native Hawaiian female who is from a specific zip code and who never smoked, and like, is that kind of the data disaggregation that we end up wanting, or is there something a little bit broader, that still tells us the same story of who should we be paying attention to?  And so, I think there are a lot of unanswered questions. I think that Scarlett is doing amazing, amazing work that I continually follow. So, I think there's a lot to be done still.  Dr. Fumiko Chino: So, I guess that leads to my next question, which is the concluding question, which is, what is the next step? So, how do we either: get better data or how do we actually intervene?  So, Scarlett, I know you had talked a little bit about the FANS study. Can you talk a little bit about your breast cancer cohort study in terms of really thinking about getting together diverse data sets and making sure that it's powerful enough to actually draw some conclusions?  Dr. Scarlett Lin Gomez: Absolutely. Breast cancer is actually a really interesting disease that I think we are in the midst of seeing a very interesting and dynamic pattern of breast cancer.  We actually noted recently, in a small study in the Bay Area, that we may be seeing a reversal of higher rates among Asian American immigrant women compared to those who were born here. I think actually, this makes sense.  If we think about, especially in the San Francisco Bay Area, who were the immigrants over the past 10, 20, and 30 years. And in fact, we are seeing very high, rapidly increasing rates of breast cancer within many of the East Asian countries.  And so, I think we are really undertaking work to try to understand what some of these patterns are, but I think we are really well-positioned to invest in cancer research among Asian Americans, Native Hawaiian, and Pacific Islanders, because of these dynamic patterns, and the vast heterogeneity that we know exist within these groups.  I think that investing in research among these groups can really tell us a lot in terms of the discovery of novel risk factors. My last final thought would be to the funders out there to really think about what we can learn by focusing on these populations, but also being able to study the disparities that really have gone ignored for a long time.  Dr. Fumiko Chino: Kekoa, can you talk about some research that you have coming up that may or may not have recently been funded?  Dr. Kekoa Taparra: Absolutely. One of the things I definitely have to appreciate from ASCO is having the opportunity to kind of publish our work in JCO Oncology Practice on a paper with the historical context of Native Hawaiian and other Pacific Islanders with cancer.  Actually, a recent project that I have had, and I've been working on for the past year, really came about from a physician out actually in Micronesia, who read the paper and then contacted me, and this is a project specifically on betel nut induced oral cavity cancer.  Betel nut is something that is consumed throughout the Pacific Islands as well as Southeast Asia, but something specific to islands in Micronesia is that according to the WHO (World Health Organization), they have the highest rates of elementary and middle school students who consume betel nuts.  So, they had a very, very concerning epidemic right now of betel nut-induced oral cavity cancer. And so, one of the projects that I've been working on is a clinical trial, which we're calling NEO-CORAL. But the trial is specifically looking at a neoadjuvant immunotherapy approach to local or regionally advanced betel nut-induced oral cavity cancer.  We’re really excited to be working with teams from Guam, which is in Micronesia, as well as Queen's Medical Center in Hawaii, where I'm from, and at Stanford as well. And this tri-site approach we're hoping to kind of conduct a culturally careful and culturally aware clinical trial so that we can really try and make a difference in these patients' lives because the biology and just the aggressiveness are nothing like we've ever seen with tobacco-induced oral cavity cancer alone.  I'm really grateful for certain funders that we've had recently who have funded this grant. I think it really just goes to show the kind of excitement around really helping a very marginalized community.  Dr. Fumiko Chino: I think that that study and I think putting in the context of what Scarlett just said in terms of, we need this data, we need granular data, we need funding so that we can actually design interventions that are really tailored to unique, vulnerable communities to really provide the resources, education, and culturally competent care that actually gets people the best outcome so that there are not haves and have-nots in terms of health care, and that's really again everyone's goal.  I'm wrapping up now. I really like to thank Dr. Scarlett Gomez and Dr. Kekoa Taparra for sharing your really valuable insights with us today and for your dedication to addressing the unequal burden of cancer across diverse communities.  Dr. Kekoa Taparra: Thank you.  Dr. Scarlett Lin Gomez: Thank you.  Dr. Fumiko Chino: Thanks to our listeners for your time today; you will find links to all of the studies and presentations discussed today in the transcript of this episode. And, if you're enjoying the content of the ASCO Daily News podcast, please take a moment to rate, review, and subscribe.    Disclosures:  Dr. Fumiko Chino: None disclosed.  Dr. Scarlett Lin Gomez:  Employment: Bioinspire (Immediate Family Member), Valentia Bioanalytics (Immediate Family Member)  Stock and Other Ownership Interests: Amgen (Immediate Family Member), Bioinspire (Immediate Family Member)  Consulting or Advisory Role: GRAIL  Page Break  Dr. Kekoa Taparra: None disclosed.  Disclaimers: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product service organization, activity or therapy should not be construed as an ASCO endorsement.