MEDICAL MISTRUST

The opinions expressed in this video are based on the experience and expertise of Dr. Alicia Bonaparte and Victoria Reese. Dr. Bonaparte and Victoria have been compensated by Biogen for their participation in this video. The views expressed are those of Dr. Bonaparte and Victoria and not necessarily those of Biogen.

Victoria: I am Victoria Reese, and I am the co-founder and president of We Are ILL. We are a patient advocacy organization here to redefine what sick looks like. I am here with a very special guest; it’s been a long time coming. Dr. Alicia Bonaparte and we’re here to talk about medical mistrust in the Black community.

Dr. Bonaparte: So, hi, everyone. My name is Dr. Alicia Bonaparte. I’m an associate professor of sociology at Pitzer College. My areas of specialty include medical health disparities, racial health disparities in reproductive health care, and, last but not least, also looking at the conceptualizations of teen pregnancy in the US.

WHAT IS MEDICAL MISTRUST?

Victoria: Let’s start out with defining what is medical mistrust.

MEDICAL MISTRUST: the lack of trust in, or suspicion of, medical organizations

Dr. Bonaparte: So I think you’re asking a good question, and in particular I think it depends on whose perspective you are talking about.

Victoria: OK.

Dr. Bonaparte: So, for example, if you’re thinking about it from the perspective of a clinician, a clinician would say these are the moments in which it seems like a patient is very distrustful of me. They are hesitant for the—hesitant towards the things that I say. Or they’re a little bit resistant to the things that I say.

Victoria: OK.

Dr. Bonaparte: But if you flip it over to a patient, a patient would say, I see this person is potentially causing me some harm. In essence not only harm or hurt in my first encounter with them, but also potentially leading to some type of long-standing consequences.

HOW DID WE GET HERE TODAY?

Victoria: Can you tell us how did we get here? Like, how did we get to this place of medical mistrust as a community?

Dr. Bonaparte: So unfortunately, this history is steeped in some of the medical abuses that happened during slavery. So when we think about that, what we begin to understand is that Black people, as an oratorical, folks were storytellers, have shared these kinds of stories. So some of these stories include things like the experience of Anarcha. Anarcha was an unfortunate patient of Dr. Marion Sims, the father of American gynecology.

Dr. Bonaparte: So for example she suffered from this condition called fistula, it’s a reproductive health condition, I won’t go into all the details, just suffice to say, that it’s a horrible existence to have as a person with a womb.

Victoria: Wow.

Dr. Bonaparte: So what you find is that he performed, this is Dr. Sims, performed 30 surgeries trying to figure out how to perfect fixing this fistula issue.

MEDICAL RACISM: discriminatory and targeted medical practices and misrepresentations in medical teachings driven by biases based on characteristics of patients’ race and ethnicity

Victoria: 30 surgeries?

Dr. Bonaparte: 30 surgeries. And unfortunately, she was never actually cured of the condition. And yet, he is, as I said, seen as the father of American gynecology. So then you moved forward a couple more steps, and this is where we begin to understand what is medical racism, right? And how it actually fostered our present-day medical mistrust. So what you find is that the field of medicine, honestly most of its advances, during the 17th and 18th century, were largely developed on the backs of enslaved Black people.

Victoria: Wow.

Dr. Bonaparte: Mm-hmm. So when you think about this question of how was this actually able to occur? What we find is that the main contributors were not only physicians but also pseudoscientists. And I use this term pseudoscientist very purposefully

Victoria: Yeah, I’m like what’s a pseudoscientist?

PSEUDOSCIENTIST: a person who uses a collection of beliefs or practices mistakenly regarded as being based on scientific method

Dr. Bonaparte: Right, exactly. So in essence, these were the individuals that believed in things like social Darwinism. This idea that the Anglo-Saxon race is the best race, these ideas that Black people and other people of color are lower on the spectrum. Right?

Victoria: Right.

Dr. Bonaparte: Had these negative characteristics associated with them like mental aptitude and ability to understand information and also not necessarily going to be long-lived people either, right? So, this idea of just understanding that, you know, they’re not a great race, right? So, if we think about these things, truly, truly sit back and we think about these things, it begins to make even more sense why they justified this experimentation on Black people.

Victoria: Because that’s what they thought. They thought it was the truth.

Dr. Bonaparte: Exactly. And so when you have a perception or belief and then you act upon that belief and that belief then leads to medical abuses, it makes even more sense why they completely justified experimenting on Black people, particularly those that were enslaved, because again they lacked power and the ability to really be able to understand what it means to have consent.

Watch the next video to learn more about the history of medical mistrust.

Everyone’s experience with multiple sclerosis (MS) is different. Your healthcare provider should always be your primary source of information. The people in this video are paid spokespeople for Biogen.

The opinions expressed in this video are based on the experience and expertise of Dr. Alicia Bonaparte and Victoria Reese. Dr. Bonaparte and Victoria have been compensated by Biogen for their participation in this video. The views expressed are those of Dr. Bonaparte and Victoria and not necessarily those of Biogen.

Victoria: I am Victoria Reese, and I am the co-founder and president of We Are ILL. We are a patient advocacy organization here to redefine what sick looks like. I am here with a very special guest; it’s been a long time coming. Dr. Alicia Bonaparte and we’re here to talk about medical mistrust in the Black community.

Dr. Bonaparte: So, hi, everyone. My name is Dr. Alicia  Bonaparte. I’m an associate professor of sociology at Pitzer College. My areas of specialty include medical health disparities, racial health disparities in reproductive health care, and, last but not least, also looking at the conceptualizations of teen pregnancy in the US.

BREAKING DOWN THE TUSKEGEE EXPERIMENT

Victoria: OK, so this is just me, might just be me, but I feel like as a Black person, everybody talks about the Tuskegee experiment. Am I right?

Dr. Bonaparte: Yes, you are absolutely right.

Victoria: And not to say that obviously that there are other stories and other situations, but that is a very go-to situation and it is usually following talking about not trusting the doctors or the healthcare industry as a whole, and it is like once you say Tuskegee, the conversation is over or bottlenecked.

Dr. Bonaparte: Mm-hmm, and it makes sense, right? Because at the end of the day, right, one we tend to misname what happened. Right? It was not a Tuskegee experiment, it was an experiment conducted by the US Public Health Service.

Victoria: Now, now you talking because listen, people talk about this and don’t know what happened.

Dr. Bonaparte: Yeah, so what’s intriguing is that this was a public health service study, that was used under the pretenses of saying “Hey, we are going to cure you of syphilis.” But in actuality, they withheld treatment, and largely, the reason why they withheld treatment “for the advancement of science” is largely to see how and why did the syphilis strain continue to move, continue to grow, continue to expand.

Victoria: But correct me if I am wrong, the masses typically will say that they were infected with syphilis, when they were just not given the actual treatment.

Dr. Bonaparte: Exactly, exactly right. And so typically what you find in an experiment, right, is that you have an experimental study and a control study. The control study is the group that is not supposed to receive the treatment. The experimental group is supposed to receive the treatment. But in this instance, these men did not receive the treatment.

HOW DOES THIS CONTINUE TO PLAY A ROLE TODAY?

Victoria: So how do you think patients feel that clinicians continue to play a part in medical mistrust?

Dr. Bonaparte: I think that there is a number of ways in which we can approach this question and I really appreciate it. One I think that patients are oftentimes subjected to and when are talking about patients, we are really talking about Black folks. So, what you find is that Black folks understand and recognize that sometimes, they don’t get, they don’t get the type of screenings, that they are supposed to receive, right. The screenings include things for cancer, cardiovascular disease, and most importantly when we start thinking about autoimmune disorders like MS.

Dr. Bonaparte: And what’s even sadder is that we can think about now in the 21st century, Jana Mossey wrote this wonderful study in which she was looking at and asking physicians, did they perceive themselves as actually mismanaging Black patients?

Victoria: Mm-hmm.

Dr. Bonaparte: The doctors said no, we are highly committed to engaging in culturally sensitive care. And yet when you compare their narrative, to the actual practice, this is where you see a very distinct discrepancy. They were still mismanaging the—their pain, and in particular, they would say, well I didn’t see any reaction from it.

Victoria: Wow.

Watch the next video to learn more about medical mistrust in the MS community.

Everyone’s experience with multiple sclerosis (MS) is different. Your healthcare provider should always be your primary source of information. The people in this video are paid spokespeople for Biogen.

The opinions expressed in this video are based on the experience and expertise of Dr. Alicia Bonaparte and Victoria Reese. Dr. Bonaparte and Victoria have been compensated by Biogen for their participation in this video. The views expressed are those of Dr. Bonaparte and Victoria and not necessarily those of Biogen.

Victoria: I am Victoria Reese, and I am the co-founder and president of We Are ILL. We are a patient advocacy organization here to redefine what sick looks like. I am here with a very special guest; it’s been a long time coming. Dr. Alicia Bonaparte and we’re here to talk about medical mistrust in the Black community.

Dr. Bonaparte: So, hi, everyone. My name is Dr. Alicia  Bonaparte. I’m an associate professor of sociology at Pitzer College. My areas of specialty include medical health disparities, racial health disparities in reproductive health care, and, last but not least, also looking at the conceptualizations of teen pregnancy in the US.

THE ROLE OF MEDICAL MISTRUST IN MS

Victoria: That makes me think of two things. First, it makes me think of as it relates to MS, how MS is a snowflake disease. So, one person living with MS doesn’t look like the other, right? The symptoms that one person is dealing with is not the symptoms of the other. So since it is such a broad spectrum of symptoms, it’s often very hard to diagnose. So, it makes me, like, we have delayed diagnosis due to that, so if you’re now adding this perceived level of pain tolerance, like that’s a whole cluster of things. Like that’s a lot of baggage. But additionally, it makes me think as we’re talking about, you know, not really showing the emotion.

Dr. Bonaparte: Mm-hmm.

Victoria: If, now as a community, we’re ingrained to just say, we have to be strong.

Dr. Bonaparte: So other things to kind of consider too, is again, when we are thinking about people who have autoimmune disorders, right? And they are going to an emergency room, for example, what you find is that sometimes people living with MS are oftentimes not believed. And so, in essence when they say I’m in pain and I need something, they are actually perceived as drug seekers. So this makes it even more difficult to think about, well would I actually even trust them if they’re not even going to manage the pain the way I know it should be managed.

SPEAKING UP

Victoria: It’s interesting that you say that because it’s part of my MS journey and my story.

Victoria: When I was diagnosed at 25, I was dealing with the very common symptoms of numbness and tingling. And when I went to my doctor after telling him about all of the pain and the issues that I was dealing with assumed that due to my line of work that it was stress. Now, while stress might have been a trigger for what I was dealing with, I was prescribed antidepressants like that.

Dr. Bonaparte: Wow.

Victoria: But I’m like, I don’t need antidepressants.

Dr. Bonaparte: And kudos to you for knowing and understanding, for knowing that you needed to take a different step, because oftentimes patients don’t know that they don’t know that they have the ability to do that.

Victoria: To be honest, I didn’t. I didn’t. I just went home like OK, well I guess I’m stressed, y’all. And my health continued to not decline but I still dealt with issues. And we had to figure it out and we did.

Watch the next video to learn how we can work together.

Everyone’s experience with multiple sclerosis (MS) is different. Your healthcare provider should always be your primary source of information. The people in this video are paid spokespeople for Biogen

The opinions expressed in this video are based on the experience and expertise of Dr. Alicia Bonaparte and Victoria Reese. Dr. Bonaparte and Victoria have been compensated by Biogen for their participation in this video. The views expressed are those of Dr. Bonaparte and Victoria and not necessarily those of Biogen.

Victoria: I am Victoria Reese, and I am the co-founder and president of We Are ILL. We are a patient advocacy organization here to redefine what sick looks like. I am here with a very special guest; it’s been a long time coming. Dr. Alicia Bonaparte and we’re here to talk about medical mistrust in the Black community.

Dr. Bonaparte: So, hi, everyone. My name is Dr. Alicia Bonaparte. I’m an associate professor of sociology at Pitzer College. My areas of specialty include medical health disparities, racial health disparities in reproductive health care, and, last but not least, also looking at the conceptualizations of teen pregnancy in the US.

HOW WE CAN WORK TOGETHER

Victoria: What pathways can help the Black community and clinicians work together?

Dr. Bonaparte: So this is where this concept that we call in medical sociology, cultural humility, comes into play.

MEDICAL SOCIOLOGY: the study of the social causes and consequences of health and illness

Victoria: Cultural humility?

Dr. Bonaparte: Mm-hmm

Victoria: OK.

Dr. Bonaparte: Yeah, and so what’s interesting about cultural humility is that this is a willingness for a practitioner to say, I actually don’t know that much about your culture, but then portray a willingness to understand and to learn.

Dr. Bonaparte: So the teaching and the learning, right, actually really much relies on physicians doing that learning. Right. So there is a number of ways in which you can do that. I always think to myself about aligning yourself with a patient health advocacy program like We Are Ill. So for example, getting the perspectives of people who are Black and living with an illness and what those experiences have been like, this is how you reshape what people can do and it makes people much more conscious.

Victoria: Yeah, I love that.

Watch the next video to learn ways to move forward.

Everyone’s experience with multiple sclerosis (MS) is different. Your healthcare provider should always be your primary source of information. The people in this video are paid spokespeople for Biogen.

The opinions expressed in this video are based on the experience and expertise of Dr. Alicia Bonaparte and Victoria Reese. Dr. Bonaparte and Victoria have been compensated by Biogen for their participation in this video. The views expressed are those of Dr. Bonaparte and Victoria and not necessarily those of Biogen.

Victoria: I am Victoria Reese, and I am the co-founder and president of We Are ILL. We are a patient advocacy organization here to redefine what sick looks like. I am here with a very special guest; it’s been a long time coming. Dr. Alicia Bonaparte and we’re here to talk about medical mistrust in the Black community.

Dr. Bonaparte: So, hi, everyone. My name is Dr. Alicia  Bonaparte. I’m an associate professor of sociology at Pitzer College. My areas of specialty include medical health disparities, racial health disparities in reproductive health care, and, last but not least, also looking at the conceptualizations of teen pregnancy in the US.

WAYS TO MOVE FORWARD

Victoria: So you spoke about it from the clinician’s perspective, but from the patient perspective, if there’s still fear—

Dr. Bonaparte: Mm-hmm

Victoria: —how do we work collaboratively?

Dr. Bonaparte: Yes. So, I really appreciate this question because it really gets at the heart about moving beyond the iatrophobia and actually getting into action.

IATROPHOBIA: an extreme fear of doctors or medical tests

Dr. Bonaparte: I think this is where communication comes in, right? There is this concept that we refer to is called therapeutic communication. So the main goal is to make for sure that both parties feel like they are part of the decision-making progress.

Victoria: OK.

Dr. Bonaparte: So if you’re distrustful, but then someone says no, you’re a part of this conversation, you are a part of the decision-making process for your treatment, as well as the diagnosis, it tends to make a little bit more sense.

Dr. Bonaparte: Other things I think are really really useful too, is again if we think about this goal of health literacy from both perspectives and all over within the medical industry, I think this is where we really start to see a change. When patients actually understand what’s happening, when patients feel like they’re receiving beneficence. So in essence, you are acting towards me in goodwill. You want the best outcome for me. You will actually embody the Hippocratic Oath of doing no harm.

Victoria: Right

Dr. Bonaparte: That we in society have given you authoritative knowledge. We have told you that you are an expert. You have social legitimacy, you have legal legitimacy, and you have educational legitimacy, right? And you stand by those things and you do those things. And I think again, organizations like We Are Ill are doing something really important about pushing people to this next point, right? Let’s not remain static. Let’s actually move forward, right? Let’s be dynamic and let’s see that social change really is possible. And I think that, last but not least, when you have people who are working in patient advocacy organizations and also when you have people that are called in with pharmaceutical companies, for example, like “Hey, let’s have a conversation, tell us, how is our language biased? How is our language potentially off-putting?”

Victoria: Right.

Dr. Bonaparte: Those are the types of collaborations where, again, you can push back against iatrophobia in really really wonderful and transformative ways.

Victoria: Yeah. I love everything you are saying and I understand it. It’s just so interesting as I am reflecting on our conversation, being a person that lives with MS, having an illness, really heavily depending on a healthcare team—

Dr. Bonaparte: Right.

Victoria: —and the healthcare industry but also having fear and distrust, it’s a very conflicting, interesting space to be in because I do depend on that relationship to thrive. I do.

Dr. Bonaparte: Right.

Victoria: So to have this fear so deeply embedded and be at the forefront at the same time of my experience is an interesting one and I know that our viewers can attest to that and relate. So I am glad we are having this conversation.

Dr. Bonaparte: Thank you so much.

Victoria: Thanks for being here.

Everyone’s experience with multiple sclerosis (MS) is different. Your healthcare provider should always be your primary source of information. The people in this video are paid spokespeople for Biogen.