Breast Cancer Care for LGBTQ+ People

Jamie DePolo: Hello. Thanks for listening. Our guest today is Dr. Erik Eckhert, a post-doctoral fellow in hematology and oncology at Stanford University Hospital. While earning his bachelor’s degree in molecular and cell biology and gender studies, Dr. Eckhert became interested in the way that social norms perpetuate inequalities in healthcare for LGBTQ+ people. After earning his MD and a master’s degree in health and medical science, he began his post-doctoral fellowship at Stanford, where he helped design and teach the Stanford Internal Medicine LGBTQ Health Curriculum for resident physicians.

Dr. Eckhert recently published a study in JAMA Oncology about disparities in breast cancer care for LGBTQ+ people, and he joins us today to talk about the research. Dr. Eckhert, welcome to the podcast.

Dr. Erik Eckhert: Thank you for having me.

Jamie DePolo: So, before we focus on your particular study, I’m wondering if you can talk about the discrimination that LGBTQ+ people face when going to doctors’ appointments and other healthcare visits.

Dr. Erik Eckhert: Yeah. Absolutely. I think as a way to best kind of frame the scope of the problem that LGBTQ+ people face when they go to the doctor, it’s going to be helpful for me to outline who is LGBTQ in America today. So, 7.1% of Americans identify as LGBT. That breaks down as being about 1% lesbian, 4% bisexual, 1.5% gay, and 0.7% transgender. And we know that LGBT orientations cut across all race and ethnicity groups about equally, and we also know that as it has become more socially acceptable to come out, that with each successive generation of Americans that a larger and larger percentage of Americans are identifying as being LGBT.

So, for example, the generation before the Baby Boomers who are called the Traditionalists, it was 0.8% of the population. By the time of the Baby Boomers, 2.6%, Gen X 4.2%, Millennials 10.5%, and according to a 2021 Gallup survey, 20.8% of Gen Z identifies being LGBT.

So, when we talk about discrimination, we’ve got to keep in mind that this is going to be a conversation that we’re going to have to continue to have because the percentage of the population that’s identifying as LGBT is only increasing. 

Now, with respect to discrimination, LGBT people experience discrimination in healthcare settings by basically every conceivable metric that we have. For example, in 2013, the Human Rights Campaign Health Equity Index found that 56% of LGB adults and 70% of transgender adults reported experiencing discrimination in healthcare settings in their lifetime.

In 2017, there was a 28,000-person survey that was conducted by Transquality.org and they found that within a one-year period -- so, within the last year -- 33% of surveyed participants reported having negative experiences with healthcare providers in that year, and those experiences included being refused treatment, verbally harassed, sexually assaulted, physically assaulted, or having to teach their own doctor about how to provide care for them. And as a correlate, 23% of transgender people report postponing care because of fear of discrimination. 

This isn’t just something that’s unique to the trans community. We know that while only 13% of LGBT people have ever gone to an LGBTQ health clinic, over half wish that they could because of fear of discrimination in other healthcare settings. Correspondingly, lesbian patients who experience discriminatory behavior from a clinician are more likely to subsequently seek help advice online as opposed to going back to a doctor, and patients are also less likely to come out to physicians who discriminate against them or who otherwise are kind of poorly communicating.

And all of this is supported by what LGBTQ physicians already know. In a 2010 survey of LGBT physicians, 65% reported that they had experienced hearing derogatory comments from other healthcare professionals about patients who are LGBT, and 34% had witnessed discriminatory behavior of an LGBT patient directly. So, you know, really this is a huge problem that really disproportionally affects this population. 

Jamie DePolo: Yes. Those are some very discouraging and depressing numbers. It does make me ask, though, you talked about how people wish they could go to an LGBTQ clinic specifically. 

Dr. Erik Eckhert: Yeah.

Jamie DePolo: If more people are identifying as part of that community, are there more clinics, is the number of clinics getting larger proportionately? 

Dr. Erik Eckhert: Yeah, that’s a great question. The short answer to your question is no. There are more clinics now than there have been. I think that, you know, slowly the numbers are increasing, but there is really a disparity in the number of providers who are trained to be able to deliver this kind of care for this population compared to the number of people who need it, and that was part of some of my desire to, you know, design and implement this curriculum for the Stanford Internal Medicine residents. When I was a resident at Stanford, this curriculum didn’t exist and keeping in mind that Stanford’s in the Bay Area, which is a famously very friendly place to LGBTQ people, it was surprising to me that we got no education in this. And there’s this big distinction between being friendly and being knowledgeable on the issue. 

Coming to a cardiologist because you’re having chest pain, it’s nice if they’re wearing a heart-shaped pin on their lapel and they’re smiling, but if they’re not going to actually, you know, have the technical prowess to be able to, you know, keep you healthy, then they’re not very helpful ultimately. And that’s unfortunately, I think, kind of the situation where a lot of primary care spaces have donned rainbow flag pins and stickers and things, and that’s nice and that’s certainly a first step and not everywhere is even there yet, but among those places where they’ve kind of recognized the iconography is the first step, I feel like there’s a, there’s a barrier between that first step and then actually teaching physicians and nurses how to use like, hard skills that are specific to taking care of an LGBT population and you know, to actually do that work.

Jamie DePolo: Yes. Okay. Now, you have long been interested in healthcare disparities that LGBTQ+ people face. I’m wondering how you came to focus specifically on breast cancer for this latest paper.

Dr. Erik Eckhert: So, this is a great question because my clinical interest is actually malignant hematology so, leukemia and lymphoma, but breast cancer in LGBTQ populations has interested me from an anthropological perspective for a while now because of the inherent complexities of being a member of a sex and gender minority community and undergoing medical procedures related to sexualized parts of the body that are always already couched in the hetero-cis-normative medical framework. 

So, because I’m speaking to a general audience I’ll go ahead and describe the concept of heteronormativity. So, taking a step back, Georges Canguilhem is one of the great medical historians of the 20th century and he wrote a book called The Normal and the Pathological in the middle of the 1900s. And in that book he tells us that our contemporary ideas around what constitutes normalcy in human health was originally derived from the normal distribution in statistics, which is the kind of famous bell curve that people know about in kind of popular scientific media.

But there are several logical fallacies here. For one, just because something is common in a population doesn’t mean that it’s more optimal for human health than something that’s less common. So, for example, if you took the blood pressure of every adult over 40 in the U.S. off of blood pressure medication, then you took all of those people’s blood pressure, you would find that the normally-distributed range of blood pressures is significantly higher than what we know based on clinical research to be a healthy blood pressure with respect to risk of future heart attacks and strokes. And so, in that example, the minority of people with blood pressure under 120/80 are actually healthier than the norm.

Another reason why there’s a logical fallacy in this is that in statistics, extrapolating from a population-level characteristic back onto an individual is called the ecological fallacy. It’s something that every first-year statistics student and medical student learns about in their course work. And in the blood pressure example, the ecological fallacy would be the assumption that your blood pressure is high just because the average unmedicated adult’s blood pressure is high.

So, we can’t do that. We can’t go from population to know what’s going on with the individual. So, you know, circling back, hetero and cis normativity are confounded by both of these logical fallacies, whereby cis genderism and heterosexuality are presumed to be the optimal sex and gender combinations for individuals because they’re most common in the general population. Nevertheless, healthcare delivery systems, medical research, and medical education are nearly always heteronormative because of the legacy of these implicit biases. 

And if you’re interested in kind of learning more about the way that heteronormativity intersects with breast cancer care, I cannot recommend enough the book by Professor S. Lochlann Jain, who’s an anthropologist at Stanford, and their book is called, Malignant, and that’s part autobiography and also part medical anthropology about their experience as a transmasculine person with breast cancer.

So that’s, that’s actually, you know, all of that kind of background really sucked me in because I knew that there was something there, you know, from a social perspective, and figured that it would translate well. And so that was my initial spark, but while putting together the internal medicine curriculum on LGBT health, I found that while the oncologic literature was replete with qualitative research and descriptions from LGBT people who received care talking about their experiences of subtle and overt discrimination, high quality, quantitative data on health outcomes for LGBT people with cancer were lacking. And quantitative data, you know, for better or for worse, is what moves policymakers to actually affect change. And so, we needed this quantitative data to actually, you know, be able to, to know what was going on, number one, but number two, to make change. 

So, with that in mind I thought to harness the power of my mentor, Dr. Kurian. Dr. Allison Kurian is head of cancer genetics at Stanford, and she has a really fabulous breast cancer database called Oncoshare. And that database integrates data of people with breast cancer across the Stanford and Sutter Health care systems linked to the California Cancer Registry, and I use that to characterize healthcare disparities for people from sex and gender minority groups with breast cancer. 

So, it was this combination of, you know, there’s this interesting social background, we had a database that was usable, and just kind of right place, right time.

Jamie DePolo: Okay, and that’s the perfect segue. So, could you summarize the study for us and what you found?

Dr. Erik Eckhert: Yeah. So, this is a matched retrospective case-control study in which people from sex and gender minority groups with a breast neoplasm seen at Stanford Breast Oncology Clinic were matched to cisgender heterosexual patients with breast cancer, and they were matched by year of diagnosis, age at diagnosis, stage, and some of their tumor characteristics, and specifically that’s the estrogen receptor and the HER2 receptor status. 

After that match was done, we then looked at a variety of both outcome metrics, as well as various things that might confound conclusions related to something, outcomes being specifically related to sex and gender minority status. So, we looked at, for example, socioeconomic status, we looked at insurance status, and we found that there were no differences between the two cohorts in those variables.

The sex and gender minority population had more white and Latino patients than the cisgender heterosexual cohort, but that cohort had more Asian and Pacific Islander patients so, it was important for us to do a sensitivity analysis to make sure that the differences in race and ethnicity didn’t impact our results, and they didn’t. 

So, the top line results are that people from sex and gender minority groups experienced a delay in diagnosis from symptom onset compared to cisgender heterosexual people. It was about double the time so, median time to diagnosis was 54 days compared to 34 days. We also found that people from sex and gender minority groups were more likely to decline an oncologist-recommended treatment, 38% versus 28%. And most importantly, that people from sex and gender minority groups had higher rates of cancer occurrence, that’s both local recurrence and metastatic recurrence compared to cisgender heterosexuals, at 32% compared to 13%.

And as I said, all of these findings remain statistically significant in multivariate analysis after adjusting for multiple hypothesis testing, which is just asking multiple scientific questions, as well as in the sensitivity analysis adjusted for race and ethnicity. 

Jamie DePolo: Okay, thank you. So, I want to ask specifically about some of the results. So, the time to diagnosis, and you said that was from symptom onset to getting a diagnosis, do you have any ideas why. Because I guess what I’m wondering based on what you said earlier, is it that, you know, somebody form the LGBTQ community maybe has some distrust of doctors so, notices a symptom but then waits to go, so gets diagnosed later?

Dr. Erik Eckhert: That’s a great question. It’s both factors, from the LGBT people who are presenting with symptoms, as well as on the provider level. This matches well with the existing qualitative data and the literature that we do know that LGBT people present later to care or not at all because of distrust or prior bad experiences. We also know that when people do present that they’re more likely to experience subtle and overt discrimination, and sometimes that takes the form of longer wait times for an adequate medical workup. 

Jamie DePolo: Okay. Okay, and there was another thing that I thought was really interesting. I believe, if I interpreted your results correctly, the risk factors for breast cancer among each group so, among, you know, the cisgender heterosexual people and the LGBTQ people, they were about the same. So, I guess what I’m wondering, so, why do we think we see this much higher rate of recurrence?

Dr. Erik Eckhert: Yeah. So, I was very careful in designing this study to make sure that we looked at a number of very relevant risk factors related to, you know, lifetime estrogen exposure as well as kind of usual cancer risk factors like smoking and alcohol. And I was expecting that differences in risk factors would ultimately explain whatever healthcare disparity outcomes we found. I wasn’t expecting to find what we found, which was, in fact, that the risk factors as you said were remarkably well balanced, and yet there was this disparity in outcomes. 

To answer your question, I think that more research is needed. We don’t have a clear sense based on the data that we have available about why the recurrences are so hugely different. Certainly, there’s something to be said for the fact that patients from sex and gender minority groups were more likely to decline a recommended oncologic treatment, and the most commonly-declined treatment modality was the anti-estrogen therapy for ER-positive breast cancer. 

But I don’t even think that that explains it. And so, you know, I think that there’s a combination of certainly lack of trust and potentially not getting appropriate treatment, or at least maybe not appropriate treatment for as long as someone should have gotten it, but I do think that there’s additional factors that in this single-center, retrospective study we probably weren’t unable to fully elucidate.

Jamie DePolo: Okay. Okay, thank you. Yeah, I know the hormonal therapy is tough because people get prescribed it for either usually five to 10 years after surgery. And I’ve talked to people who are on it, I know the side effects can be very, very troubling and bothersome. And I know your study found that people from the sex and gender minority groups were more likely to refuse it, but I’ve seen other studies showing that up to 50% of anybody who’s prescribed hormonal therapy for breast cancer after surgery either doesn’t complete the full course of therapy or doesn’t take it as prescribed so, maybe they don’t take the pill every day, they take it every other day which…

Dr. Erik Eckhert: Yeah.

Jamie DePolo: … you would think would affect the risk of recurrence. So, it’s very interesting to me that the sex and gender minority group is more likely to just refuse this treatment flat out, but your study didn’t really look at treatment compliance, did it?

Dr. Erik Eckhert: Yeah. That’s actually a good point. So, refusal and compliance were rolled into one category for us in this study. And partly that was done because of the fact that our numbers…there were only 92 sex and gender minority patients matched to 92 cisgender heterosexual controls in the study. So, our statistical power in this study was relatively low compared to, you know, national cohorts of, you know, tens of thousands or hundreds of thousands of people, and really that’s the next step. When you get a large enough sample size you can ask more nuanced questions and you have the power statistically to be able to detect differences.

So, that’s really why I think that the main take home from this study isn’t necessarily the individual disparities per se, but it’s really that we need to start prospectively collecting this data on a national scale, and adding it to cancer registries, and making sure that big hospital systems are collecting this information, the sexual orientation and gender identity, or SOGI information, in a systematic way because if we don’t have the data then we can’t identify the healthcare disparity. And you know, if you can’t see the healthcare disparity you can’t fix it. 

Jamie DePolo: Absolutely. Right. It sounds like your study was a very important and much-needed first step, and then are you planning to pursue this? I know it sounds like you’re very busy studying a number of things. Are you planning to continue this research or do more specifically on breast cancer?

Dr. Erik Eckhert: Yeah. I think the answer is yes. I do think that I would like to remain in this space as a player and to continue to publish on breast cancer for sex and gender minority populations. My goal, I think, is to start thinking about how these same types of questions that we observed at Stanford might also be observed in other healthcare settings and potentially used. You know, Kaiser data, Kaiser has huge datasets with millions of patients as a next step, and then within…hopefully within the next five to 10 years some of the national cancer databases will have accrued enough SOGI data such that we can look at this not only, you know, for example, at Kaiser which is a bigger population, but then we can start looking at things nationally.

Jamie DePolo: That sounds like it would be very helpful. I do want to back up a little bit and perhaps talk more broadly. You helped design LGBTQ health curriculum at Stanford and…

Dr. Erik Eckhert: Yeah.

Jamie DePolo: …I know you said you didn’t have it when you were a resident. Do you know or do you think that most schools have a program like this?

Dr. Erik Eckhert: Yeah.

Jamie DePolo: And also, would you tell us what was in your curriculum?

Dr. Erik Eckhert: So, yeah. As we kind of alluded to earlier in the podcast, we know that there aren’t enough LGBTQ-competent physicians. Half of LGB patients and 90% of trans patients say, they tell us in surveys, that there are not enough healthcare professionals who know how to care for them. So, the answer is, is that first of all there’s not enough, whatever the number of medical training programs that do it or don’t do it are. There were surveys that occurred about 10 years ago of U.S. medical schools on the number of hours of LGBT-specific content in their curriculum and the vast majority of surveyed medical programs reported a median number of five hours of LGBT-specific content in a four-year medical training curriculum for medical school.

Over a third of those schools reported zero hours in the clinical years so, the second two years, and about 5% to 10% reported zero hours in the first two years so, there’s definitely a ways to go. Additionally, we know basically nothing about the number of internal medicine residency programs which, by the way, are…the internal medicine residency is kind of the standard stepping stone that every medical oncologist has to go through in order to become a medical oncologist in the U.S. You have to do an internal medicine residency.

That means that medical oncologists, if they’re not getting, or we don’t know about how, you know, they’re getting trained as residents, then we really don’t know, you know, anything about what that education looks like after someone leaves medical school. But we do know that in a survey of U.S. academic medical practices that 52% report having their physicians have zero LGBT training and only 16% of practices reported having any sort of comprehensive LGBT training for their physicians or staff.

So, overall, you know, this is a problem. The curriculum that I designed consists of six modules currently. There’s a module on LGB health disparities and LGB health, a module on transgender health and health disparities, a module on providing gender-affirming care for the primary care physician, a module on HIV and sexually-transmitted infections, a module on anal cancer screening. For those in your audience who don’t know because this is a breast cancer-focused podcast, anal cancer screening is important for men who have sex with men. Think of it as like the cervical cancer equivalent in that population. Both types of cancer are caused by the human papillomavirus and can be prevented with the human papillomavirus vaccine. And anal cancer screening is among the elite few cancer screening modalities that has actually been demonstrated to have a mortality benefit. So, it’s really important, and that mortality benefit was just shown in this year in Lancet HIV by van der Zee et al., from a study from the Netherlands for HIV-positive men who have sex with men.

And then the last module that we do is we look at bias in structural cis and heteronormativity so that we can kind of get people to start questioning the kind of biases that we all walk around with that impact, you know, what we understand is normal and healthy.

Jamie DePolo: Okay. I don’t really know how medical resident training works so, apologies if this is an ignorant question. But is there any thought to this curriculum being shared with other institutions, or is it more, you know, people like their own and they want to keep their own?

Dr. Erik Eckhert: Yeah. That’s a good question. There is a…I know that there’s a curriculum that’s being developed, I believe by Matt Schabath, at Moffitt in Florida, Moffitt Hospital, Moffitt Cancer Center, that is something that’s supposed to be kind of generalized for healthcare providers. But that curriculum is, I think, mostly about sensitivity training and kind of cultural humility and that kind of thing. 

As far as I’m aware, you know, hard skills training for these topics has not been something that’s been kind of generalized, and I think it’s a good idea. Certainly in places that might not have someone who has this particular niche interest like me, I think that it would be good, but to your point, people do tend to try and have their own, teach the content to the residents who are there. I don’t necessarily think that that is how it has to be, but currently that tends to be what is practiced.

Jamie DePolo: Okay. And then finally, for anybody in our audience who’s listening and is wondering, how can LGBTQ+ people make sure they’re getting the most appropriate, the best healthcare? Whether it’s for breast cancer, breast cancer screening, or another health issue? Do you have tips for people?

Dr. Erik Eckhert: Yeah. So, my biggest recommendation to LGBT people is to remain engaged with the healthcare system, and that’s easier said than done. We talked about all of the stats on mistreatment and discrimination, and it makes it very easy to disengage, right? Keeping in mind that this is your health and that the best way for you to stay healthy is to stay plugged into the medical system, you know. So, find a primary care provider who you have a good therapeutic relationship with and trust, and maintain follow-up for routine healthcare maintenance. 

And you know, if you’re someone who is in a larger city and you have the luxury of multiple LGBTQ-friendly providers, I would recommend doing some homework and seeing if you can find someone who’s not just friendly, but is also knowledgeable, someone who’s published in, you know, areas related to LGBT health, somebody who teaches that curriculum, or otherwise, you know, you have word of mouth to find someone who actually knows their stuff. 

There are, unfortunately, no online resources that I can recommend that are updated. This is something that I’m currently working on, thinking about seeing if we can create some kind of national list, but right now that doesn’t exist. 

And just two other points. You know, if you’re feeling like you’re not getting the care that you need, self-advocacy and having a low threshold for a second opinion are your most powerful tools. This isn’t just for anybody who is LGBTQ, this is for any patient. And as oncologists we welcome second opinions, we’re never offended, we think that they’re important, and we respect them. 

On the other hand, you know, my last point is that if the doctor is recommending something to you as standard of care and for example, hormone suppression for a certain number of years for ER-positive breast cancer, but you have reservations about it, or you’re having side effects to it, or it’s intolerable for one reason or another, my biggest recommendation is to talk to your doctor for one, resources so, that you can read about the risks and benefits of discontinuing or changing your dose or changing to a different med, and then have an informed conversation. 

And the other is, you know, we recognize that there isn’t a one-size-fits-all approach for anybody pretty much in any aspect of healthcare, but that, you know, the last thing that you want to do is to really disengage because the role of your healthcare team is really to take care of you and so, if something isn’t working, we want to hear about it, we want to see if there’s something that we can do to, you know, maybe it’s not going to the like the “perfect” risk reduction approach, but maybe there’s a different drug that has a better side effect profile that might not be as effective but is better than having, you know, no, you know, ER-directed therapy, for example.

There’s lots of ways that we can work with folks in our clinic to see if we can find an approach that really threads that needle for them.

Jamie DePolo: Yes, finding that, the unique care for the unique person because everybody’s situation is different, that’s what we say. And your advice sounds really good. It reminds me of advice I got from another oncologist. Well, he was speaking to a lot of people, but he said, you know, I want you…he framed it as, I want you to be a difficult patient. And what he meant by that was, I want you to ask me questions. I want you to come in and say, what about this treatment? I want you to tell me if you’re having horrible side effects and ask me if there’s something else that we can use. He’s like, that to me is the best because…

Dr. Erik Eckhert: Oh, yeah.

Jamie DePolo: …then I can help you the most, you know. He said a lot of people think that asking a lot of questions makes you difficult. And so, I would, you know, it sounds like you are saying the exact same thing that no, it’s not. It’s that you have to be your own best advocate to get the best care.

Dr. Erik Eckhert: Yeah, totally agree, and you know, an open and honest, you know, flow of communication in both directions is essential because, you know, as you kind of mentioned, you know, if you’re taking your therapy every other day but you’re telling your doctor you’re doing something daily, you know, that’s suboptimal, but maybe if you had, you know, the proverbial you, you know, and had that…

Jamie DePolo: Of course.

Dr. Erik Eckhert: … conversation with the clinician and say hey, I’ve been having to do this because I’m having such horrible side effects. Doc, is there something that you can do that will make my quality of life better? You know, then the physician might say oh, actually, yes, you know, this isn’t necessarily going to be as effective, but nevertheless I think that I can, you know, put you on a medicine that has a better side effect profile. And that’s better than what you’re doing currently. You know, we might not only have a more optimized side effect profile but it might be more efficacious than what you’re doing now. 

Jamie DePolo: Right. Right, right. Dr. Eckhert, thank you so much. This has been very interesting, very, very, informative, and I really appreciate you taking the time to talk to us.

Dr. Erik Eckhert: Oh, it’s my pleasure. Any time.