Lung Cancer Podcast

The Role of Cultural Humility in Addressing Disparities in Lung Cancer Treatment: How Can Physicians Make a Difference?

Jacob Sands, MD; Narjust Florez, MD


December 13, 2022

This transcript has been edited for clarity.

Jacob Sands, MD: I'm Dr Jacob Sands, thoracic medical oncologist at the Dana-Farber Cancer Institute. Welcome to Medscape's InDiscussion series on lung cancer. Today, we'll be discussing disparities in lung cancer diagnosis and treatment. But first, let me introduce my guest, Dr Narjust Florez, associate director of the Cancer Care Equity Program, a thoracic medical oncologist at the Dana-Farber Cancer Institute, and a member of the faculty at Harvard Medical School, as well as the new associate editor of JAMA Oncology. Dr Florez, welcome to InDiscussion.

Narjust Florez, MD: Thank you, Dr Sands, for the invitation.

Sands: Dr Florez, I would love to start out with a bit about your personal journey. What was your career path in getting to this point of being a lung cancer specialist?

Florez: I'm originally from Venezuela. The turmoil, both political and economic, in Venezuela took me out of the country to the Dominican Republic where I finished medical school. Throughout medical school, I was offered the opportunity to do rotations in the United States, and during that time, I realized that my goal and my calling was to be a physician scientist. I trained at Rutgers New Jersey Medical School in internal medicine. I did a lot of research during that time. I noticed that the most vulnerable patients were often excluded from studies, and their needs were not documented. So my journey to cancer health disparities started during residency when I studied gastric cancer in Hispanics. Then, I matched a fellowship at the Mayo Clinic. This was another landmark moment. Moving to the Mayo Clinic meant that I was going to be in a less diverse population. I would still continue my work in cancer health disparities. But I was looking for that disease type in oncology that would fulfill the clinical part and the research part of a career in academia. I was being modeled to be an agnostic phase 1 researcher, but a patient changed all of that. I treated a young patient with lung cancer that asked me many times not to tell her family about her diagnosis due to the stigma associated with the disease. That was my calling. I needed to treat younger women with lung cancer and describe the disparities not only in this population but in all vulnerable patients with lung cancer.

Sands: That's a great starting point. Before I get into some of the specific questions that I've had for you in discussing this stigma, can you dive into more about the stigma and patient experience around stigma?

Florez: Lung cancer, compared to any other cancer, has a high level of stigma because it's associated with smoking. Smoking is found to be a choice or a behavior, when in fact, it is an addiction. These are patients that disclose their diagnosis to a family member or to a primary care doctor, and the first question they get asked is if they smoke. When a patient with colorectal cancer discloses their diagnosis, nobody asks them if they eat red meat, which is associated with colorectal cancer. A lot of patients face a lot of stigma and a lot of guilt. They feel not only internal guilt but guilt by family members and by providers that they have cancer because they smoke. That makes many of these patients not want to disclose their diagnosis. Compared to patients with breast cancer, many patients with lung cancer keep the diagnosis to themselves. That breaks my heart because you are dealing with a disease — a fatal disease — and you are not seeking support just because of stigma associated with it.

Sands: And to that point, I've had patients tell family and friends that they had breast cancer instead of lung cancer just so that they wouldn't face some of that backlash that is quite common. I think that an important part of treating patients with lung cancer is being very aware of that. Any time I'm asking people their smoking history, which of course, is really important to some of the decisions we make around their care, I'm always very attentive to how patients are taking it. And I try to shape the discussion in a way where I tell them that this is the past. I let them know we're going to move forward from here. And that it doesn't necessarily matter at this point how we got here, but it is relevant to some of the decisions we're making. I make every effort I can to help relieve them of some of their internal difficulty around that prior history. It's such a challenging topic. I'm going to transition the discussion a bit. We're going to focus specifically on disparities and the impact they have on care. This is a little bit different than some of the discussions we've had as part of this lung cancer series. That being said, this is one of the most important topics and thankfully something to which there's been increasing attention given. But it doesn't necessarily mean that attention has led to changes in the care. And that's what we really want to get to. First of all, one of the most striking things I've learned in the last few years is that the most important determinant of a person's healthcare outcomes is the zip code within which they live. It's not their blood pressure and it's not a diagnosis of diabetes or other things that would be more obvious. It's actually the zip code. Can you talk a little bit about that?

Florez: To the listeners, social determinants of health are secondary to our environment, exposure, employment, and education. And what you said, Dr Sands, is 100% true. For our patients with lung cancer, 80% of their outcome is not determined by clinical care. It is determined by the social determinants of health. Do they have access to food? Do they have access to transportation to make it to the cancer center? Do they have the health literacy to understand a clinical trial? I use this example very often — a patient can have a PD-L1 of 100%, but if the patient doesn't have transportation to the cancer center, your overall response rate is 0%. So how relevant is the PD-L1 of 100% if the patient cannot get therapy? The aspects of having access to healthcare or being in a safe neighborhood are sometimes more important than the genetic mutations we talk about so much.

Sands: You're outlining some of the kind of non-health system–associated challenges. And I think this is part of why there's such difficulty in making real progress in reducing disparities — because it's such an overwhelming topic. There are other aspects of society not specific to the healthcare system that I think sometimes make it more challenging to really make improvements. And we're going to dive a little bit into that. But I'd make the point that lung screening is probably the most important thing we can do that's cancer related. It is the number one intervention that could reduce cancer mortality — I'm talking all-cancer mortality. Also, lung cancer represents about a fourth of all cancer-related deaths, and lung screening has the potential to significantly increase the early-stage diagnosis and therefore lead to actual cure and improved outcomes. This really is the number one intervention. Now, this is something that unfortunately is not being done broadly. So, there's a lot of improvement needed for all populations. That being said, there has been an underrepresentation of minority populations in qualifying for lung screening and actually being offered lung screening. Can you dive into some of the challenges in recognition and enrollment in lung screening programs?

Florez: There are two main issues with lung cancer screening. One is — and this is an example of intersectional identities — that women, who are 52% of the population — are significantly less likely to be offered lung cancer screening, and this delays the diagnosis for a potential lung cancer. These are patients who qualify for a lung cancer screening. So if you're a woman, you're less likely to be offered the lung cancer screening. [Instead] you are offered other, more gender-specific screenings [for cancer diagnosis] that have less mortality. And then if you're in a minority population — Black, African American, Hispanic, Latinx, or Native American — you're also less likely to be offered lung cancer screening by your primary care doctor. There are two points here. One is that the intersection of identities is often forgotten in cancer health disparities. So, if you're a woman of color, there is gender bias and racial bias. This is a group that is significantly less likely to be offered a lung cancer screening. It is an example of the intersection of these two vulnerable populations. In addition to this, something we also often forget about lung cancer screening is the possibility of lumping it together with other types of screening. This is done at UNC, and it was started by Dr Patricia Rivera. The woman gets her mammogram, and you get her into lung cancer screening the same day. So, there's a lot of interventions that have been developed, but we are still not using them for most patients. And I think many factors are affecting this. But the intersection and the lack of insurance are very important negative factors for getting the adequate testing.

Sands: What are mammography screening data showing? Are we seeing the same disparities within mammography, for example? This tends to be one of the more commonly performed screening tests among populations who qualify.

Florez: So, women of color are less likely to get mammograms. But when we talk about 6% [of women of color receiving] a lung cancer screening and 68% [of women of color receiving] and breast cancer screening, we get to learn from the breast screening practices how to reach vulnerable populations. And one of them is the mammography vans. We're often in the ivory tower. In order to improve things in the community, we need to come to the community. And we need to learn what breast screening has done to reach more women.

Sands: I suspect there are differences within geographic populations, as well. When we're talking about disparities — the rural disparities vs the populations living in cities — I'm sure there's a lot of similarities. But can you talk about these different geographic populations? Are there similarities? Are there specific challenges related to them?

Florez: I practiced in Wisconsin and Minnesota. So, I had a lot of patients from the rural United States. There are disparities in both groups, but the disparities tend to be a little bit different. The rural population in the United States has a lot of geographic distance. In some areas, the closest oncologist can be in a 100-mile radius. And if you know something about the Midwest, the winters have no chill. There is a lot of snow, and that's taken into account. Also, many farmers are uninsured, and that's a population we forget. They are independent. They are their own boss. They don't work for a big company. So insurance out of pocket is a humongous amount of money. The disparities are there. Farmers are often underinsured. There's geographic differences because there are not that many oncologists. In addition, there are delays in diagnosis because those specialized services are often not available. And then the patient has to wait 4 or 8 weeks, or even 12 weeks, in order to go somewhere. And there's the financial toxicity of getting somewhere that we often forget. Driving from North Dakota to the Mayo Clinic — that's a 5-hour drive. So that's very unique to the rural population. Lung cancer screening is significantly less in the rural United States. And cities still have high levels of uninsured people. But you have different problems — social determinants of health, your safety, and your neighborhood. You can have an oncologist within five blocks. But if those five blocks are not safe, you need to find an alternative way to get to the cancer center.

Sands: One of the things that's been striking to me within the urban population is that it might be a 10-mile distance, but that can be the subway to two different bus lines. Sometimes it is surprising to me the long journey patients have to take to get to the clinic — even when the distance isn't so far, it's actually quite a bit. So for patients who are getting chemo to then have to take a bus transfer and such to get home, the commute can be quite challenging.

Florez: And don't forget that the pandemic is still here. Public transportation increases risk for these patients. And a lot of these patients don't have any other method of transportation other than public transport. In order to address social determinants of health, we need to ask our patients about it, and particularly vulnerable populations who are ashamed to share this information with their healthcare team. If they don't have enough food at their table, they lost their job, or they don't feel safe in their house, they don't feel comfortable bringing these things up. It's our job to ask about their social determinants of health.

Sands: That's an excellent point. You and I have talked before about some of the data around biomarker testing and the reduced amount of testing in minority populations, and also data around clinical trials enrollment. One thing I think is commonly stated is that we need to be doing a better job of talking with vulnerable populations. There's distrust, when in fact, we just need to ask them about enrolling. The data actually show that minority populations are getting offered clinical trials at substantially lower rates, but not so much that they're refusing enrollment. They're just not being offered it. At the same time, there are significant differences in the treatments being offered. So I'm clumping this whole paradigm together to say that there are various timepoints within diagnosis and treatment where there are surprising differences in what's being offered and what's being done for these populations. Can you flesh that whole topic out a bit more?

Florez: The main thing is that there are cancer health disparities in lung cancer from the moment of screening to the moment of death. They all have been documented at every stage of treatment. And these disparities are not only for racial minorities. They also include members of the LGBTQ community, incarcerated patients, rural patients, patients who are immigrants, and non-English speakers. That's a big chunk of the population we're discriminating against. And something that you mentioned, Dr Sands, is mistrust. And I call this mistrust a mistrust challenge because the historical events in which our patients may make reference to that doesn't mean they mistrust us. That means they know their history. Would you trust a healthcare system that continues to fail you? Or that continues to discriminate against you? I have two things to say about mistrust. One, if a patient mentions some historical events like the Tuskegee experiment, I take responsibility as a healthcare worker and instead of saying, "Oh, that wasn't me. I wasn't born" — no, no, no, I say, "I'm sorry." That does help build the relationship. The second thing about mistrust is that we need to stop blaming our lack of representation on mistrust. Data show that if a physician encounters a patient in whom English is not their first language, they are less likely to offer a clinical trial. That shows there's also implicit bias. Implicit bias is ingrained, and it's very hard. We need to address it every day. So there is an implicit bias that a patient doesn't trust their provider, or a patient doesn't trust the healthcare system, and this patient doesn't want to be part of a clinical trial. But that's not true. Data have shown that if you ask a Hispanic, Latinx, Black, or African American patient to be part of a cancer clinical trial, most of them agree to it. So let's eliminate that perception. We need to give our patients options. We are not here to make decisions for them. We continue to blame patients. Oh, the patients don't trust us. The patient doesn't do the lung cancer screening. The patient didn't advocate for biomarker testing. They are not healthcare providers. They don't know about biomarker testing; how are they going to advocate for something they don't know? We need to remove the blame on the patient and take responsibility to create equity.

Sands: Continuing on that spectrum of the diagnosis to care, there are end-of-life data that are quite surprising as far as differences in the number of patients that are really offered hospice and end-of-life care. Can you outline that a little bit more for us?

Florez: Yes. There's two important disparities when it comes to the end of a patient's journey. One of them comes from my own research on palliative care for stage IV lung cancer. And Dr Jennifer Temel and her colleagues, many years ago, reported that patients with stage IV lung cancer will live longer and better if we refer them to palliative care. We found that of 400,000 Hispanic patients, only 2.2% were referred to palliative care. We didn't even make it to 5%. And these were all patients with lung cancer. We're doing these very fancy studies and drugs for millions of dollars when we know that early palliative care prolongs survival. So we are now referring minority patients to palliative care. One of the excuses is that, for example, Hispanics hold a lot of fatalistic beliefs, but that is no reason not to refer them to palliative care. We give patients options. And the second thing you mentioned — and these data were presented at ASCO 2021 — if your patient has Medicaid and metastatic lung cancer, they're most likely to go home without hospice. How is that humane, knowing that all hospice services are covered by Medicaid, and they're all covered by Medicare? These are patients with Medicaid. They're going home and dying without the support they need. Let's remember that hospice is not only good for the patient but it also provides support to a family that's going through a very difficult time. So we're failing to refer our patients to palliative care and even to hospice.

Sands: We've covered a lot of ground on a number of disparities. You've discussed some of what we can do, and this is a challenging thing. I encourage our listeners to really be self-reflective on this because I think there's a lot for us to learn. I recognize that there are sometimes a lot of ingrained thoughts that are not really recognized, and I think there's a lot for us to self-reflect on. Now, some of it is self-reflection, and some of it is just actual changes to the system that need to happen. Maybe let's start out with some of the changes to the system, and we'll get to that more personal kind of look.

Florez: Dr Sands, you are completely correct. We need changes at the system level and at the individual level for all providers. At the system level, the first thing I advocate for is accountability. We need to make institutions and organizations accountable for disparities because accountability means there are consequences to discriminating or excluding these patients. One thing that is very important is we need to make sure the trials include the patients that represent the US population, and that's needed by the FDA. Will you approve a drug that has been tested only in one group of patients? We need to make sure that approvals require the drug be tested in a diverse population. As an associate editor, I am learning a lot about this, and journals have a lot of power. Everybody wants to publish the study results. Okay, you're going to publish, but you need to break down your patients. Which patients did you recruit? You need to break down tolerability and efficacy by race, gender, and age, so we can learn. And you need to justify why you didn't have a population that represents the United States in your manuscript. It shouldn't be one sentence. It should take a whole paragraph to explain that. Lastly, cancer centers should be accountable and responsible — first, for having clinical trials that are inclusive, and second, to have a mechanism to support patients during their journey. Because we often forget that the disparities only accumulate during cancer treatment — financial toxicity, job loss, or insurance loss. We need to make sure we have systems in our cancer centers to support that. And lastly, let's stop charging for parking. Dr Fumiko Chino and colleagues did a study in which a lot of cancer centers are charging patients for parking. That becomes a big burden if you're getting radiation for a limited-stage cancer or you're getting radiation for stage IIIB cancer, which is 35 treatments. That's 35 parking payments, right? And that's $30 each time. That's a lot of money for somebody who has a reduced income.

Sands: Those are excellent suggestions. I think you're talking about systems-level changes and the pressures individuals face — coming up with new ideas to be more inclusive in these patient populations based on the pressures placed upon them. What else can be done? For the individuals listening and thinking about how they can make their cancer centers more inclusive, or their clinics for those not in cancer centers, what are some local things that can be done as far as the flow within communities, increased social work involvement, or increased transportation assistance — these are important ones we've touched on. Is there anything else to highlight in there?

Florez: I think having a diverse workforce is and will continue to be an intervention that has proven over and over again to help reduce disparities. And we often focus on the physician workforce, but it's diversity all throughout our providers — medical assistants, clinical trial coordinators, and nurse practitioners. Having a diverse workforce has been proven to reduce disparities. When you hire somebody, make sure you open all pools of candidates because then we enrich the environment, and we help close some of the existing gaps.

Sands: Now to transition to the self-reflection part, which I think really is harder, but it also may be the most important aspect in all of this. There are various occurrences that happen where, as a one-off story, maybe everything makes sense. But when looking back at that experience or, for example, what happened with an elderly Black woman as compared to a young White man, you recognize that there are differences in how someone was treated. One story I've heard is a patient in the intensive care unit who had come over from Haiti. And the way this patient and his family were treated all seemed somewhat justifiable. But at the same time, there was another young, White patient who had a somewhat similar scenario and was treated entirely differently. Sometimes these situations can be hard to recognize because one person's actions or way of interacting with these patients can seem completely justified as a one-off story, but when really comparing and contrasting the way that different individuals were treated, there can be some real standouts. It's such a hard topic to discuss. It requires listeners to be very open to critiquing themselves and thinking about how interactions could have happened differently. This is a tough topic to talk about, but are you able to dive into that a little bit more?

Florez: It's very important you mentioned this, Dr Sands, because a lot of my research and a lot of my interventions come to the individual level. We do require a systemic change, but we are far away and many years, or even decades, from this. So we, as providers, have a lot of privilege and power to create equity. What I recommend to everybody, as you say, is self-reflection. Reflect on those difficult cases. Reflect on what happened and what could have been different. If you want to have a frame of where to start, I would recommend our listeners to look at the principles of cultural humility. This is not only for patient care but this is for interactions with everyone. And principle number one of cultural humility is that this is a lifelong journey. A lot of the differences in treatment we see regarding race and gender are because of stereotypes and assumptions. You assume that a population doesn't want treatment. You assume that a patient had a different decision. No. Cultural humility suggests that this is a lifelong learning. Listening is the first thing we can do. And the second thing after listening is to intervene. That is really important because you can create equity today. You don't have to wait for the system. We all have so much power. I'm going to tell you a quick story. I had a patient that was on osimertinib. We do the first set of scans and I see stable disease, and I think, okay, let's see how it goes. I'm mentioning my mistake here so we can all be open, and to show that we all have room for improvement. On her second scan, there is disease progression and I think, okay, let me sequence to see what happens with this EGFR mutation. I later learned this patient was taking osimertinib every other day or every 2 days to expand her prescription because her co-pay was so high. Finally, I was able to get on the phone, find a co-payment assistance program, and then she went on the regular dose. She had a partial response 2 months later. So here, how important was this EGFR mutation and the drug? This patient was often taking 2 doses of osimertinib a week to expand her prescription. This was a moment in which I learned that I need to ask my patients about co-pays and about other resources, and if they feel comfortable taking the pill. This patient is still alive, and she has two grandkids now. With that little action, I created equity by making phone calls, getting her in a co-pay assistance program, and just listening. I finally listened and she's doing much better. This is a little example of how you can create equity as an individual.

Sands: I thank you for this discussion. This is such a big topic and I think, in many ways, an overwhelming topic. But it is extremely important for each of us to be mindful about and think of ways we can improve how we interact with patients and improve the system itself. I would like to thank our listeners for attending this discussion on disparities and this entire series on lung cancer. This has been such a pleasure to be a part of. This is Dr Jacob Sands for InDiscussion.


Assessing the Documentation of Social Determinants of Health for Lung Cancer Patients in Clinical Narratives

Screening for Lung Cancer: U.S. Preventive Services Task Force Recommendation Statement

Race and Sex Differences in Patient Provider Communication and Awareness of Lung Cancer Screening in the Health Information National Trends Survey, 2013–2017

Racial and Ethnic Disparities Among State Medicaid Programs for Breast Cancer Screening

The Tuskegee Timeline

Are Racial and Ethnic Minorities Less Willing to Participate in Health Research?

Abstract 1641: Utilization of Palliative Therapies Among Hispanics With Stage IV Non-Small Cell Lung Cancer

Early Palliative Care for Patients With Metastatic Non–Small-Cell Lung Cancer

Medicaid Patients More Likely to Die at Home Without Hospice During the Pandemic Versus Before, Exacerbating Disparities With Commercially Insured Patients

Assessment of Parking Fees at National Cancer Institute–Designated Cancer Treatment Centers

Cultural Humility: Essential Foundation for Clinical Researchers

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