National Minority Mental Health Awareness Month: What Needs to Change?

In honor of National Minority Mental Health Awareness Month, Oncology Data Advisor Editorial Board and Fellows Forum members Megan-Claire Chase, Dr. Waqas Haque, Dr. Samuel Kareff, and Dr. Alankrita Taneja sat down to discuss the reality of being a minority with cancer, how this affects mental health, how treatment experiences of minorities could improve, why it is important for clinical trials to prioritize diverse enrollment, and more!

Oncology Data Advisor: Hi, everybody, and welcome to today’s episode of Oncology Data Advisor in honor of National Minority Mental Health Awareness Month. I’m joined today by a few of our Fellows Forum and Editorial Board members, Megan-Claire Chase, Alankrita Taneja, Samuel Kareff, and Waqas Haque, who will be sharing their perspectives on this topic. Thank you all so much for coming on today.

Megan-Claire Chase: Hello, hello. I’m Megan-Claire Chase—but I’m also known in cancer land as Warrior Megsie—and I’m an eight-year stage IIA invasive lobular breast cancer survivor, patient advocate, and I also changed my career to work in this space. National Minority Mental Health Month means a lot because I experienced so many barriers of consistently being dismissed. My breast cancer symptoms, they were different. No one really identified them as something was wrong. I was consistently gaslit and told, “You just need to lose weight and eat better.” And I’m like, “Okay, the whole point is I’m gaining weight.” I had this weird bruising, and my hair started falling out only on the left side. Eventually, I actually got that cancer diagnosis. I really felt validated because I did all the right things. I advocated for myself. I felt very lucky that I come from a family where my maternal grandmother, she’s a registered nurse and she told our whole family it’s your patient right to change doctors. It’s your patient-right to ask questions and it’s your patient-right to get pushy, if needed.

It was literally over two and a half years, and it wasn’t until I felt my tumor—it was palpable—when everyone took me seriously. And what that did to me mentally of being ignored over and over again, then I entered another underrepresented category, aside from being Black and a woman, then a Black woman in the South—I was diagnosed under 40 and was being called a young adult every five seconds and then not even seeing anyone who looked like me in the infusion room, who looked like me age-wise as well. The doctors who looked like me, where are they? And that really has taken a toll and even in my survivorship continues to take a toll on my mental health of dealing with post-traumatic stress disorder (PTSD), anxiety, and depression. I’ll just leave it there and let everyone else chime in.

Samuel Kareff, MD, MPH: I’m happy to follow that and I wanted to really thank you for sharing your story so courageously. It’s a really difficult disease, invasive lobular cancer. It’s significantly less common than invasive ductal carcinoma, which is what a lot of folks are more used to. Hearing your experiences, I’m reflecting on a lot of my patients that I’ve served as well and I see so many of those disparities that you’ve kind of shed light on. And I just really appreciate you serving as a patient advocate for others so that they don’t have to go through what you did, so thank you for that. I wanted to follow up from a couple of the themes you just left us with at the end of your story and those are related to things like PTSD and anxiety. I think this is a really important session we’re having today.

And even though we’re in collaboration with National Minority Mental Health Awareness Month, there are a lot of overlapping themes with cancer care that we’re kind of focused on here with Oncology Data Advisor. I wanted to share a little bit of data from our Human Rights Clinic of Miami that I collaborated with during my time as a medical student at the University of Miami in the mid- to last decade. And essentially in short, this Human Rights Clinic is a clinic that’s designed to assist asylum seekers and refugees in their hopes for establishing permanent residency here in the United States. What we do is we help corroborate some of the claims that these folks have when they’re working with the immigration system as it relates to both physical and emotional traumas and abuses that they suffered and whatever medical and psychological sequelae there are.

So, when we actually analyzed our data over five to six years of operations in the mid- to last decade, as I mentioned, we saw some really alarming rates. When we screened folks for PTSD and major depressive disorder, we actually saw rates of over two-thirds positive for PTSD and over half for major depressive disorder. Now, we can contextualize these findings with South Florida at large where we are outside here in Miami, and those rates are lower than a quarter at 20%, or internationally where they may be in the single digits, depending on which cohort you’re looking at. So, clearly there’s a lot going on with this minoritized population. We really need to keep a heavy focus on these folks as they’re entering and integrating into our society, noting that there are a lot of legal and other barriers that they pass. So, as I’m thinking about a lot of populations that we might call minoritized, it’s so important that we really focus on their mental health moving forward.

Alankrita Taneja: Absolutely, Sam, and thank you so much for sharing, Megan and Sam. I’m going to be specializing in the field of multiple myeloma, working in Philadelphia with predominant minority population in the hospital. Time and again, studies show the disparities and outcomes in patients with multiple myeloma who belong to the African-American community versus other races, especially Caucasian. There was also a very big study that showed that when same treatment was given to people with multiple myeloma who belong to the Caucasian race as opposed to the African-American race, the outcomes were still different. So it seems that there is a component of structural racism bias that is playing a role in outcomes, which is beyond comprehension by doctors in science.

For example, in multiple myeloma, there was a large survey, studied over three years, interviewing patients who worked in healthcare and asking them about their experiences. And 60% of Black adults, half of American Indian and Alaskan natives, 51% of Hispanics, and 42% of Asians said that they prepared for possible insults from providers or staff and felt that they should be careful about their appearance to be treated fairly during health care visits at least some of the time, as compared to 33% of White adults who had the same observation., Megan, being the patient, do you concur with these results and what is your opinion about what research has found?

Ms. Chase: I mean, yes, and I have learned over the years, and it’s actually something in my community that we all kind of inherently know and do, is I have dressed up for my appointments. Even though I am sick, I have to make sure I watch my tone. I need to make sure that I’m making them comfortable, so I know they’ll listen to me when all I really want to do is scream and shout that I don’t feel well, just help me. All of that pressure and all of that anxiety and anger is all wrapped up in our bodies. And I truly feel that that’s what also keeps us away from the doctors because when you’re consistently talked down to in a condescending way, when you’re not believed, when your symptoms are not believed, it makes it harder for a Person of Color or someone from another minoritized community—as I always want to include the LGBTQIA+ community as well—that we don’t want to go back to the doctor.

That’s why we’re diagnosed at later stages, and it’s really infuriating. We really need that cultural competency, not just once, but ongoing, because of what that does to our mental health. We’ve taken time off from work and then once we get there, “Oh, we don’t know,” or you just get the general type of explanation when you know something is wrong—what that does to you and that stress that we continuously carry. So, I totally agree with those findings.

Waqas Haque, MD, MPH: Thanks for sharing all that, and making clear all these sort of things so far today. For me as a fellow, I think so much of the patient visits is focused on making an assessment of the patient—what’s the performance status? And then the view of systems is so much focused on physical symptoms that people are facing, but often you don’t really get time to really talk about someone’s mood, how they really are feeling on the inside, things like that. So, that’s going back to the bio-psychosocial model of medicine, and I actually had the opportunity to go to a patient advocacy conference and hear it from different patient panels like patients with sickle cell and multiple myeloma, things like that. It’s just really powerful to hear people’s other perspectives, even if you can’t actually feel it yourself, just to at least know what they’re going through.

My own involvement for minority mental health has been with creating patient visitation programs for patients admitted to hospitals and making sure that someone’s there, like a chaplain or someone, to do a visit. I started this program across several hospitals in the country and actually did some reviews of Muslim patients who are admitted to hospitals in the United States. One thing that we found was that a lot of the tools that are used to validate spiritual health and spiritual assessments in this patient group are often actually validated in groups other than Muslim patients. So, oftentimes when we think about minority health and the scales that we want to use to address their mental health, we should try to create scales that are based on the actual population themselves, so we actually hear from their own perspective.

Dr. Kareff: I might add just because this topic is crucially important when we’re talking about either validation of tools or even data collection in the earlier stages, there’s a huge call right now from organizations like the American Society of Clinical Oncology (ASCO) and others that are really trying to ensure that data that we collect in terms of either race, ethnicity, ancestry, socioeconomic status, et cetera are really desegregated. What that means is basically not putting blanket statements on groups, whether those are genotypic, phenotypic, whatever they may be, but making sure that patients and their communities are really represented as best as possible. So, I think that’s one example of that push that we’re seeing right now in medicine and how crucially important it is to translating into practice in real life.

Ms. Chase: What I would say to that is there needs to be a better job of showing patients from these communities that you’re trustworthy. We constantly talk about that trust, but it’s also like, we definitely want to be included in the research and we need to be included in the research, but what is being done to explain this to our communities? “Hey, this is what we’re doing. This is why you should trust that it is safe. We’re going to be safe with your data and how you’re helping science, how you’re helping others that will look like you in the future to make sure that they will be able to get treatments that work for their bodies.” I think that’s what’s missing because we can talk in circles all day of, “Yeah, we need, we need, we need this,” but what are organizations, centers, and researchers doing to show communities like mine that you are trustworthy and that you’re meeting us and letting us know? “Hey, we see this gap in care. We want to talk with you, not to you or at you.”

Dr. Taneja: That’s a great point, Megan. I think time and again, we talk a lot about disparities in enrollment in clinical trials and we really don’t know how to fix that gap, like you said. Some of the research out there is that people who belong to a minority group are more likely to feel more comfortable with physicians from a minority group or staff from a minority group that can explain the trial or drugs to them. Would you agree with that? Do you think that is something that we can incorporate going forward?

Ms. Chase: I mean, 100. And again, it’s that anxiety and that frustration and it’s also like a sadness, because a lot of times I don’t think people truly realize that a lot of these atrocities that have happened in the cancer space and the research space weren’t that long ago. Certain communities, we still reference—like in my Black community, we still reference Henrietta Lacks and Tuskegee. Then in the Latin and Hispanic community, the sterilization of Latinas wasn’t that long ago. I think if we can start to do that and feel like, wait, you really are listening to us because you’re acknowledging the not-so-distant past, I think could help a lot in making us feel more comfortable.

But also, too, if we keep waiting for more physicians and researchers of color before we go to the doctor, then that’s not going to help anyone. So what can we do now, where we are now, in really making sure that they’re acknowledging, saying, “Hey, I know we come from different cultures, but I’m here. I want to listen to you”? Because I’m so tired of hearing this doctor’s brilliant, but they have a terrible bedside manner. Well, you know what? You need to improve that bedside manner because everything you say, we’re taking that in and that really affects us mentally and emotionally and physically.

Dr. Kareff: I think you both highlight really important themes on both the patient and provider relationship. And what really just boggles my mind is that this is not only the right thing to do, but also it leads to health outcomes that improve. We just saw a huge JAMA study last year that showed that providers identifying as women, when they served patients identifying as women, had better health outcomes. I mean, this is massive. The news talked about it a lot and it’s kind of faded away, but as a thought experiment, should women be allowed to prefer women providers? It says that they’re going to live better if they do. These are things that we have to ask ourselves both at the individual and the societal level moving forward.

Ms. Chase: That is so true.

Dr. Taneja: I concur.

Ms. Chase: Yeah, I was going to be like, “Yes, clap, clap, clap.” And I wanted to ask, especially as I think about the Muslim community and other communities where they need to see a female doctor or a gender-specified type of doctor, what are we doing to make sure that we’re meeting those needs? I think to myself, I’d be scared to death if there were only male doctors available and my religion says I can only see a female doctor. The anxiety would go through the roof of like, “I can’t see you, so therefore I’m not going to take care of my health because this doesn’t fit what my culture needs me to do and say.”

Dr. Haque: Definitely, and I think also just to expand beyond that, it’s not only patients that need accommodations. Sometimes it can also be providers and other employees in the hospital space, whether that be in terms of meal accommodations, having access to a certain kind of prayer space, or even other kinds of accommodations. So, it’s very important on multiple fronts in the healthcare system.

Dr. Taneja: I’d like to bring up a new sort of topic about advocacy groups and meetups amongst people from the minority groups with cancer. Megan, do you think that participation in these groups and timely talks by providers where two-way interaction can happen and concerns can be shared would be helpful to improve the rates of anxiety, for instance, and to inculcate the sense of belongingness in the community?

Ms. Chase: Yes. The short answer is yes because when they’re talking together, it humanizes the medical community because they’re human, we’re human. It’s about acknowledging those differences, but also reading those nonverbal cues. I work for a national nonprofit and something I like to do is try and make it as conversational as I can when I’m putting programs together or when I’m interviewing for podcast episodes, et cetera, to let them know that it’s not just about listening to what we’re saying. It’s also taking that time to read the nonverbal cues as well. I think advocacy groups and things like this, what we’re doing right now, really help others know that we hear what you’re saying and we know that there’s still so much to be done, but also acknowledging what has been done thus far, which is still a lot.

I still don’t think that message gets out enough, but it does help with advocacy groups. We can help get information out as well to say, “Hey, we’ve talked to people at this cancer center or this researcher here and they’re trustworthy,” because a lot of their patients are looking to advocacy organizations and patient advocates like me to say, “Is that a good person? Is that a good place to go?” Yes, because they will listen to you. I think we can never negate how important it is to continue to have ongoing trust and ongoing partnerships and collaborations with advocacy groups and patient advocates of color.

Dr. Taneja: How do you feel about interaction in places such as churches where we can reach the community? And since there is a bigger gap in communication or in expressing concerns where when you go to a provider, you might not have the time, for instance, or that time might not be enough to develop that trust. So, do you think that providers could actually do outreach in places where minority groups can gather things like that? Do you think that would help?

Ms. Chase: I’ll say this and then I’d love for everyone else to jump in. I just want to say meet me in the middle. Meet us in the middle. Yes, it’s so important to show your face in the different community settings such as churches or community centers. And I think there’s a systemic issue going on, though, because for a lot of the doctors, there’s no time to really build that kind of rapport. So it’s super important to understand the community that you’re in, but also go to communities that you are not familiar with to learn and hear them. Let them see you. Talk to the community leaders and set up something so you can just have a talk with them, but ideally bring someone else of color or that community leader with you so they will believe what you’re saying and that you’re being authentic.

And so I think that is huge, but it’s just so important that we shouldn’t always have to keep coming to the doctors and the cancer centers and the researchers. Come to us to show us that you want us and you want to make sure that we are staying on top of our screenings and having medical adherence and really listening to us. So there’s so much that could be done, but meet us there.

Dr. Haque: I love the part about meeting in the middle. Just taking some inspiration from our cardiology colleagues, there was actually this pretty cool trial a few years ago called the Barbershop trial. It was where pharmacists actually teamed up with a barber just to promote blood pressure checks and things like that within the barbershop. And it was actually shown to improve blood pressure readings among Black males in that study, so it’s just a really creative example of how far we can go with this.

Ms. Chase: That’s amazing.

Dr. Kareff: I really appreciate the call to action, Megan-Claire, that you’re leaving us with. And I want to echo it and remind really busy providers without a lot of time that this shouldn’t even just be looked at as an investment, which it’s a really great one, by the way. You really take the time to understand your patients and the communities they come from, but just looking at it as the right thing to do. And it’s not even up to you to Google where community screening fairs are and that sort of thing. Just talk to your employer. They’re intrinsically involved with the communities that they serve because these are the patient populations that they want to work with. And you can just jump on board with things like that. It’s not hard. It takes a few minutes and it’s overwhelmingly worth it, in my opinion.

Dr. Taneja: Leukemia Lymphoma Society (LLS) provides grants for things like that as well. So there’s opportunity to get compensated for your time because I know our providers are really busy and patient care itself takes a lot of our priority in the clinic.

Ms. Chase: And again, in talking about that mental health aspect, that’s why I say those nonverbal cues are also so important because even if you are comfortable with your medical provider or if you’re part of a clinical trial or something, sometimes you just get embarrassed or you don’t really quite know what to say. It’s another way of keeping those communication lines open, but also not everyone is vocal like me. I’m pretty darn vocal, but you put me in that hospital gown, I’m going in for my scans, I’m very vulnerable. I’m in a very vulnerable position. And a lot of times a medical community doesn’t realize it works both ways, where we’re watching you. Are you giving us eye contact? Are you actually saying hello or are you being condescending and saying, “Well, do you know why you’re here today?” Yeah, I made the appointment. That’s why I’m here.

It’s those small things and more importantly it’s about being like, “Okay, I’m not comfortable with talking with this person, but you know what? I really liked that nurse. I liked your nurse. Would you mind having that nurse come in again? I just had something else I wanted to go over with her.” Because if you’re scared to talk to that doctor, then whoever you did feel comfortable with, that’s who you could communicate with.

That takes so much of the stress off of feeling like you have to know everything, every question to say in the moment, and you don’t. And I think that’s just a lot of pressure that some of us feel in the community when we already feel like we’re not being heard and then if we can’t express it in the moment. So I always want to say that’s what portals are for. And if you need help with writing a message in your portal, call your providers. Have someone work with you on that so that way you can get out what you need to say, get that stress off of you, and feel a little bit better that you’ve been able to state some things or questions that you couldn’t do in real time, but there’s still an opportunity to do it.

Oncology Data Advisor: Thank you so much to all of you for coming on today to share your stories and experiences. This is a really powerful conversation about your own experiences in this area and research that has been done, so thank you all so much for coming on again today. It was great talking with you.

Ms. Chase: Thank you so much. And I just wanted to add one thing. I did want to say thank you so much to Oncology Data Advisor for providing this space to talk because it’s so important as a breast cancer and just cancer patient, survivor, caregiver, and a professional in this space to be heard. That does a lot for my mental health right there because I feel heard today and supported. So I thank all of you for giving that to me and our listeners.

Dr. Kareff: Thank you. Thank you for your courage to share so willingly. Thank you.

Dr. Haque: Thanks so much.

Dr. Taneja: Thanks, everyone.

About Ms. Chase, Dr. Haque, Dr. Kareff, and Dr. Taneja

Megan-Claire Chase is a patient advocate and the Breast Cancer Program Director for SHARE Cancer Support, a nonprofit organization that seeks to empower women with cancer by providing public education and support for patients and survivors. As a survivor of stage IIA invasive lobular breast cancer, Ms. Chase became involved in patient advocacy work after completing her treatment. She is a prolific writer, blogger, and public speaker, having been featured in the New York Times, in People Magazine, and on PBS’s “Beyond Cancer” episode of “Stories from the Stage.” Her story and work are documented in her blog “Life on the Cancer Train.”

Waqas Haque, MD, MPH, is a Hematology/Oncology Fellow at the University of Chicago. He recently completed his Internal Medicine Residency at New York University (NYU) in a Clinical Investigator Track. Dr. Haque has balanced his patient care work with a variety of research projects. During his fellowship training at the University of Chicago, he plans to further his work in innovative clinical trial design, value-based care delivery to cancer patients, and clinical investigation. He is a recipient of the 40 Under 40 in Cancer Award, which recognizes the contributions of rising stars and emerging leaders across the field of oncology.

Samuel Kareff, MD, MPH, is a Medical Oncologist and the Outgoing Chief Hematology-Oncology Fellow at the University of Miami’s Sylvester Comprehensive Cancer Center and Jackson Memorial Hospital in Florida. He is soon to enter hybrid practice focusing on thoracic and gastrointestinal cancers. Dr. Kareff has special research interests in health advocacy, public policy, and the development of cancer therapies.

Alankrita Taneja, MD, is a Hematology/Oncology Fellow at Roswell Park Comprehensive Cancer Center in Buffalo, New York. Her research interests focus on the treatment of multiple myeloma, the use and development of cellular therapies, and humanism and equitable care.