Understanding the gynecological health crisis facing Black women

Black women face systemic issues accessing gynecological care. A physician-scientist outlines her vision to improve healthcare disparities.

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:00Ira Flatow?

  Science Friday is supported by MathWorks, creator of MATLAB and Simulink software for technical computing and model-based design. MathWorks, accelerating the pace of discovery in engineering and science. Learn more at mathworks.com.

• 0:16Speaker 01

  WNYC is supported by Bayer. Science is about asking questions, testing, trying again. It's not easy, but it's relentless. It evolves, and that's why science delivers. Learn more at sciencedelivers.com.

• 0:33Flora Lichtman?

  Hey, this is Flora, and you're listening to Science Friday. Black women are twice as likely to die from uterine cancer compared to white women, and also suffer disproportionately from other uterine-related conditions. Dr. Kemi Dahl learned these facts in medical school, but no one could explain why. Now a gynecologic oncologist, Kemi has made it her mission to change these trends and improve care for black women. Dr. Kemi Dahl is a professor at the University of Washington School of Medicine and School of Public Health, and the author of the new book, A Terrible Strength: The Hidden Crisis of the Black Womb and Your Survival Guide to Healing. Kemi, thanks for being here.

• 1:16Speaker 03

  Thank you so much for having me.

• 1:19Flora Lichtman?

  Talk to me about the title. What is a terrible strength?

• 1:24Speaker 03

  Yeah, the title is very intentional. I mean, I think, I know that it's unusual for us to hear those two words together, terrible and strength, but to me, a terrible strength is this inherited, true, powerful ability to endure and to be resilient and to be successful in a society that is not built for you, that black women have, that has been passed down, you know, by our mothers to us and that we use to navigate our society. And it is strong, and I think that's important, but this strength is terrible because that same ability to endure means that we're not seen as

• 2:05Speaker 03

  vulnerable to these gynecologic diseases and conditions that can end up creating horrible quality of life and ultimately take our lives in the form of uterine cancer. And so, you know, that's what it means to me is that I want to honor the strength that's there. It's real, but I need to, we need to recognize, I should say, that it, it has a consequence in this world of womb health and gynecology that is profound and that really must change.

• 2:34Flora Lichtman?

  Let's talk about those consequences. I mean, how does this play out when patients come to see you?

• 2:40Speaker 03

  Yeah, this plays out in a few ways. I think one of the ways it plays out is that sometimes my Black women patients, you know, don't really identify what they're going through as a problem because they have learned for so long to normalize very severe symptoms. So I saw a woman who came in for a regular pap smear and she described her menstrual cycles or her periods to me, it sounded like way too much bleeding to me. And we got her labs and her hemoglobin level was four, which from an anemia standpoint is literally life-threatening. And she was walking around just coming in for a routine visit. It's in the form of

• 3:23Speaker 03

  women thinking that it is normal to be basically incapacitated by their cycle. I don't mean just, you know, mild cramping here and there, but essentially unable to work, unable to do their regular activities because the pain is so great. So one way it shows up is just in that normalization, which means that in the doctor's office, if you're waiting for a Black woman to share with you that these are the problems I'm having and this is a problem, you might be missing women that are suffering right in front of you because they have been, they have been taught to endure. Another way it shows up is that unfortunately, and I can say this as a Black woman because I've experienced this, even when we do get

• 4:06Speaker 03

  to the point where we say, hey, I am bleeding too much, or my pain is too much, or there's something wrong, quote unquote, down there. We're often either met with misdiagnosis because of the bias around having STDs, pelvic inflammatory disease, things that are more coded in terms of hypersexuality, or we are dismissed as not being sick enough or not being in pain enough to really need help. So it's really quite a powerful combination of both learning to endure and normalize severe symptoms that meets up with a medical system that's really biased against seeing you as vulnerable and in need of help.

• 4:45Flora Lichtman?

  How have you changed your approach as a physician, or have you?

• 4:50Speaker 03

  Yeah, so I'm not practicing anymore because my career is now completely devoted to my research and my research lab, but I will say I started changing my practice when I was in training. I remember being a resident and I remember thinking, the standard way we ask questions, which is, do you have any problems with your cycles? Is not getting at the issue that is not really meeting the moment in terms of Black women who are going to have a higher threshold for reporting problems when you know that you might not receive help. So I started asking questions differently. I would ask things like, how many days a month do you not bleed? That is a different kind of question. And when the answer is six, now I'm concerned in a different way.

• 5:35Speaker 03

  And if I ask that same person, do you have any problems with your period? They might say no, because that's normal for them. Another way is, a lot of times, fibroids are not really dealt with or treated until they're quite severely symptomatic in all women, but especially in Black women. And so noticing what your patients are wearing, and instead of assuming that their fibroids are asymptomatic, I would notice, you're wearing elastic pants, the drawstring, like elastic pants. Have you changed your clothing recently? Are you making these adjustments? And you find out somebody's wearing maternity clothes because their fibroids are getting to that size and that's what fits them well.

• 6:16Speaker 03

  I can't emphasize enough how much, in gynecology especially, so much of our care is driven by

• 6:24Speaker 03

  A woman or a patient reporting that something is wrong, right? Like, we have some lab tests, we have some screening, but a lot is specifically in the field of gynecology, a lot of it is driven by the patient saying, "I have this bleeding, or I have this cramping, or my cycle is not regular anymore." And when that's the case, the power, the emphasis, or the importance of that conversation between the patient and the physician, and therefore the respect, and whether or not that patient is legible, her pain is legible, her issues are legible to the doctor, is a huge fork in the road in terms of whether or not she's going to be helped. The other area does have to do with medical testing, which is an area of my research,

• 7:09Speaker 03

  because another way that this plays out in terms of like, how did we even get here with black women being twice as likely to die of uterine cancer, was basically the motivating question behind my research program. And what we first found is that, actually, in contrast to the standard message of the field in about like 2015, you know, around that time, was black women just have more aggressive uterine cancer, and so that's why they have more advanced stage of diagnosis, and that's why they die, and that was the beginning and the end of the story. And what we found is that that-

• 7:44Flora Lichtman?

  Which is basically like, they just do.

• 7:46Speaker 03

  Yeah, I mean, it's basically like, black women's bodies are broken. Like, inherently, there's just something wrong with you. So we found that wasn't true, and that at least, at least 40% of the disparities, or the difference between mortality, was actually driven by black women being diagnosed at later stages. And that really had me asking a lot of these questions that we've been talking about. But one area that hadn't been explored is, how do we even diagnose uterine cancer? You know, how does that work? I mentioned earlier that the cardinal symptom is postmenopausal bleeding. What we do with that is that we have a clinical algorithm that says when somebody comes in with postmenopausal bleeding, they have a transvaginal ultrasound.

• 8:27Speaker 03

  So you give them an ultrasound, and based on the thickness of the measurement of their endometrial lining, which is essentially the thin layer that lines the inner cavity of the uterus, you can measure that layer, and if it's under four millimeters, then they have essentially no chance of having a uterine cancer. And if it is that case, then you don't need to do a biopsy, you don't need to do any further workup. Well, it turns out that that guideline, which was practice guidelines, was based on research that did not include black women and often did not even include women with fibroids. So what we found is that that threshold significantly underperforms in black women,

• 9:12Speaker 03

  meaning that there are more false negatives in black women using that threshold. Our research of over 3,000, nearly 3,500 women, demonstrated that 10% of black women with uterine cancer were missed by that threshold. So if you start to think about all the things that are lining up, first, the woman has to detect, OK, this bleeding is bad enough that I'm going to go in, even though usually it's painless, so it might take a while for that to happen. Then the doctor has to see that symptom as a problem and as difficult and as something that needs to be investigated. Then they go get the ultrasound test and the clinical guidelines tell us she's fine.

• 9:57Speaker 03

  And you start to see how we have stacked the deck against black women when it comes to uterine cancer, which is a fast rising cancer in this country. And so my practice changed to always doing not just an ultrasound, but a biopsy on women who showed up with postmenopausal bleeding. And very recently, literally, like within the last month, after many years of research and many studies, the American College of Obstetricians and Gynecologists have just updated the clinical guidelines to also represent this issue and to include biopsy as an early part of the workup.

• 10:37Flora Lichtman?

  We have to take a break, but when we come back, Kimmy, I want to ask you about how we talk about this, whether the language matters.

• 10:44Speaker 03

  Yes, yes.

• 10:45Flora Lichtman?

  Stay with us. Are you down for that?

• 10:47Speaker 03

  Yes, that sounds great.

• 10:55Speaker 01

  Support for Science Friday comes from Science Sandbox, an initiative of the Simons Foundation.

• 11:06Flora Lichtman?

  You know, I think for a lot of people, uterine health is equated automatically with reproductive health. Does that complicate care?

• 11:17Speaker 03

  Yes. Yes. It complicates care because, oh, I mean, honestly, I would say because of misogyny, but let's unpack that. So it complicates care because, one, a lot of people think of uterine health as equal to reproductive health. And so therefore, uterine health is, do I have the right contraception if I need it? Do I have a sexually transmitted infection or disease? And/or am I pregnant or trying to get pregnant? And if those answers, if all those answers are no, there is nothing. I don't have any, any uterine health issues, concerns, questions. It's like, it doesn't exist.

• 12:02Speaker 03

  And that is wild. When you think about the field of gynecology and that the conditions that we treat are lifelong, usually conditions that are endometriosis, fibroids, heavy bleeding. These are things that last a lifetime. They require usually kind of chronic care management to help people with them. So we need to open up our conversation about these organs in terms of the health over the lifetime. And, you know, because I'm an oncologist, I have to, again, say. And also, it leaves us very vulnerable to these gynecologic cancers that tend to happen later in life, when a lot of women and people with a uterus have stopped seeing a gynecologist because they're not getting pregnant anymore, or maybe they're postmenopausal.

• 12:46Speaker 03

  And the idea is essentially like, there's nothing down there.

• 12:49Flora Lichtman?

  I mean, it seems like there's a similar issue with birth control, which I know can be used to treat other conditions besides keeping you from having a baby, right? But the way we talk about it, it's like an off-label use. And, you know, if you don't want to be on birth control, you might want to not want to take it.

• 13:07Speaker 03

  Flora, this drives me crazy. Yes, you are very right. And I absolutely think like my field too, in gynecology, we have really misstepped in this way too, because I think a lot of people will tell you, yeah, my gynecologist said, oh, we'll just, we'll just try birth control. The issue is very profound, however, because when everything is through the lens of, again, reproduction, birth control, it does make it feel, right? Like, I'm having some issue. How come the only treatment you have for me is thoughts, prayers, and birth control pills? Like, why is that always the answer? Right? And I am like, I get that that's the experience, but it's also because we have become a little lazy.

• 13:48Speaker 03

  Birth control represents hundreds of different formulations, different types of the hormones themselves that we know have different effects in the body, right? And not only that, we have many trials and studies specifically studying these different types of formulations and how they improve things like dysmenorrhea, which is painful periods, how they do or don't improve the volume of blood loss during a period. There's, there's a class of medications that I think are better called endometrial stabilizers, because that's what they're doing. They're stabilizing the endometrium so you don't hemorrhage every month, right? So if, if you're in a conversation with a physician and they say, you know, I agree,

• 14:33Speaker 03

  you're bleeding too much, you're anemic, this is crazy, let's put you on an endometrial stabilizer. By the way, as a side effect, you likely won't be able to get pregnant while you're on this medication. It will, it will likely have like a contraceptive effect. That is a very different feeling to that patient than, here's some birth control, let's see if this works.

• 14:53Flora Lichtman?

  Completely. Okay. Where do we go from here, Kimmy? What's the path forward?

• 14:57Speaker 03

  Hmm, okay. So the path forward, few things. One, and this is for everybody listening, okay? Including the physicians, everybody listening. Number one is, we have got, we've got to break the silence. We have got to recognize that when I say silence, I really don't just mean maybe a mother didn't tell her daughter about cramping and bleeding and pain and just like gave her some pads. I mean, and I mean like culturally, we have a silencing around gynecologic conditions and like actual symptoms like bleeding and pain and cramping and things like that that we need to remove. I would like us to be able to talk about period pain and cramping the same way we talk about chest pain. Okay?

• 15:42Speaker 03

  It's a symptom that needs to be treated. Number two, we all need to know what our normal is so then we can figure out whether or not we are just enduring and suffering for no reason, or we are fine, but we have now a baseline for when things change. Number three, I need for us to have some womb sisters accountability is what I call it. And I just want to take a moment to explain what I mean because as a gynecologist and a gynecologic oncologist, I cannot tell you how many times I saw a woman in the office and she would tell me something, or she would tell me about what she's going through and she had not told another soul. Nobody knew. And this cannot stand.

• 16:27Speaker 03

  I mean, I, in some ways, I think it's the last place where we accept this kind of suffering as women, honestly. And I want us to be in a place where like all your girlfriends don't need to know everything that's going on with you, but you've got to have at least one or two womb sisters, how I call it, that you can really tell like this is what's going on with me and will you come to my visit with me? Like, will you hold me accountable to making sure I follow up on this because I don't have to live like this? And then lastly, I think that we all need to recognize that there is no assault on reproductive freedom and reproductive healthcare that is siloed and will not impact our ability to provide care for the womb throughout its entire life course. When you restrict medications that-

• 17:14Speaker 03

  Have the sense of, oh, well, this is for abortion, or this is Plan B, or whatever. You are restricting the same classes of medications that we use to treat these conditions. And you are making it harder for gynecologists to practice, period. So I think we all need to understand that the fight for reproductive rights and reproductive health care impacts every single person with a uterus, regardless of whether you want to have kids, don't want to have kids, regardless. So, yeah.

• 17:44Flora Lichtman?

  Kemi Dahl, thank you for being here.

• 17:46Speaker 03

  Thank you so much.

• 17:48Flora Lichtman?

  Dr. Kemi Dahl, gynecologic oncologist and professor at the University of Washington, School of Medicine and School of Public Health, and author of the new book, "A Terrible Strength: The Hidden Crisis of the Black Womb and Your Survival Guide to Healing." Thanks again.

• 18:03Speaker 03

  Yeah, this was great. Thank you so much.

• 18:06Flora Lichtman?

  This episode was produced by Shoshana Buxbaum. And we want to hear from you. If you have questions, or comments, or thoughts for us, please call us. 8774-SYFRI is our number. I'm Flora Lixman. We'll catch you tomorrow.