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2. Breast Cancer Care: Myths & Barriers with Dr. Lily Gutnik
91 Plays4 months ago
In this episode of Our Womanity Dr. Rachel Pope sits down with Dr. Lily Gutnik, a breast surgeon and global health advocate dedicated to advancing equitable healthcare for women.
Dr. Gutnik’s journey is deeply rooted in her experience as a first-generation immigrant. After her parents fled religious persecution in the former USSR, she grew up in the United States, where she developed a profound appreciation for education and hard work. Her global perspective—shaped by extensive travel, multilingual abilities, and cross-cultural training—has reinforced her commitment to diversity, equity, and inclusion in healthcare.
A firm believer in innovative, cross-disciplinary collaborations, Dr. Gutnik focuses on implementing high-quality, cost-effective breast cancer care, particularly for vulnerable women. She champions a convergence science approach to address the complex root causes of health disparities, using implementation science to develop interventions that drive health equity.
For Dr. Gutnik, becoming a breast surgeon is more than a profession—it is a mission to empower women through health. Tune in as she shares her insights on building sustainable healthcare solutions, tackling systemic inequities, and the future of breast cancer care.
Featured in this episode:
- Stigma around breast cancer and mistrust in the African and African American community
- Discovering Hands Initiative empowering blind women
- Uninsured and underinsured patients still face barriers to care
- Advancing breast cancer treatment in the US – But at what cost?
- Tanzania leading the charge in education, awareness, and stigma reduction
- Tuskegee Syphilis Study
Follow us on social media:
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- TikTok: @vulvadoctor
- Twitter: @drrpope
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Transcript
Introduction and Professional Background
00:00:00
Speaker
Welcome to Arbomanity. am so excited to have here today my longtime friend and amazing surgeon, Dr. Lily Goodnick. She's the Associate Vice Chair of Global Surgery at University of Alabama at Birmingham. She is a breast surgeon and she's the assistant program director for global surgery, a general surgery residency program.
00:00:25
Speaker
She has been doing incredible research for years. i have known Dr. Gutnick since we were medical students together and we had these incredible times where we kept overlapping or our paths kept running into each other. We know each other from Israel, from Malawi, from...
00:00:40
Speaker
the U.S. Duke, right? That's where we kept seeing each other, North Carolina and UNC and all these different places where I just keep seeing her name pop up. I'm so excited to have her here tonight to talk about breast cancer screening and her research both in the U.S. and
Research on Breast Cancer Screening and Prevention
00:00:55
Speaker
abroad. So welcome, Dr. Gutnick.
00:00:58
Speaker
Thank you so much for the opportunity to be here today. I'm also so excited to connect with you and I've been following your work and absolutely love it. So this is really cool. Thank you. So I wanted to kind of dive in and talk about breast cancer screening in general, because your work is enormous for screening and for treatment. I mean, obviously you're a surgeon, but so much of your research has been about prevention.
00:01:20
Speaker
And so can you tell us a little bit about that work? Yeah, absolutely. Yeah. So, you know, it's interesting, like I do have obviously an MD and I'm a surgeon, but I also have a master's in public health. And um I am fortunate to be on the surgeon scientist pathway at my job at UAB. So I'm about 50-50, meaning 50% of my time is spent in the clinical space taking care of patients and then 50% in the research space. And as you mentioned, most of my research is more very public health oriented in the screening and early detection space and particularly focused in sub-Saharan Africa.
00:01:54
Speaker
Of course, encompassing work in the U.S. s as well, and especially being, you know, in Alabama, which is definitely one of the more poorest and underserved states in the U.S. s and significant opportunity, you know, to address some of the inequities and disparities as well. So in many ways, it's funny, I kind of sometimes feel a little schizophrenic, because in some ways, my clinical world and my research world don't always perfectly line
Challenges in Sub-Saharan Africa
00:02:17
Speaker
up. But because as you mentioned, like, obviously, as a surgeon, i you know, I take care of one patient at a time and really focusing on the treatment aspects, right. And then in my research world, I really try to focus on those screening and early detection and prevention spaces. But they're all linked, right? When we think about cancer, there's the cancer care continuum. And what that means is we have screening, diagnosis, treatment, palliative care, survivorship. So obviously, I kind of try to, between my my clinical and research roles, traverse both of them. But, you know, most of my work does focus in sub-Saharan Africa, where 75% of women present in stage three and four disease disease. And of course, i am yes, very advanced. And of course, when you're presenting that late in advance, your outcomes aren't great. So much higher mortality, much higher morbidities. Right. And this is true anywhere, like even in the US, like the later stage you have the worse outcomes, the worse prognosis, the more ah the more intensive treatment you need, the more different modalities of treatment you need.
00:03:16
Speaker
and the more toxicities you you develop from those treatments. So in general, you know, the earlier you can present for breast cancer, then obviously you're just going to have a much better prognosis and hopefully oftentimes, you know, less toxic ah therapies or less combination of therapies. Although,
00:03:35
Speaker
you know Breast cancer is very much biology driven, but in general, there's always tons of nuances in breast cancer, but that's kind of the big picture view. And so much of my work really revolves around understanding why are some women presenting at such advanced stages at the time of diagnosis?
00:03:51
Speaker
And what could we do about them? You know, I'm definitely very much a doer. It's one of the reasons I went into surgery and just kind of my personality as well. And just kind of also to put things into context, we kind of have a very opposite statistic in the U.S. where about 65% of women present in stage one and two disease. And the reason for that is also complex and multifactorial.
00:04:11
Speaker
And again, those are big picture numbers. We certainly have tons of disparities within that, a lot circling around not only race and ethnicity, but really socioeconomic status, access to insurance, access to care, education, all those kinds of things.
00:04:28
Speaker
So there's definitely a lot of like links and parallels. So especially, you know, in Africa, one of like, I, you know, currently working in Tanzania, Kenya, and Cameroon.
Interventions and Studies in Africa
00:04:38
Speaker
And previously, as you mentioned before, I've done a lot of work in Malawi. But you know, some of the bigger areas that I work in are stigma, and then screening and early detection. And then more recently, I'm actually really excited just currently have a new study happening in Tanzania working with traditional healers.
00:04:54
Speaker
And these are kind of, um yeah, and it's really cool. So these are sort of like what I have identified just also from formative work as well as just the literature as a whole. you know, these are kind of some of the top three barriers. I mean, there's many more, but I would say, you know, and also kind of thinking about a lot of my work has to do with interventions and particularly interested in multilevel interventions. And what that means is, you know, like any complex problem or complex system is not just about one thing or one group. It's all of the things. So when we say multi-level and like intervention and in the cancer space, I'm thinking about patient level factors, community level factors, provider level factors, and health system level factors. And really ultimately to make change, you know, you have to understand and address the sort of barriers and causes at all those levels to make, you know, huge strides. But, you know, I kind of start with one one step at a time. And so, you know, stigma is something that we found really interesting, really, you know,
00:05:51
Speaker
a lot of work in general in sub-Saharan Africa is the value of a woman is very much tied to her ah reproduction and sexuality. And I'm sure you know that from your work as well. and that's forling or Yes, And so, you know, when any of that is threatened, then the value of a woman goes down. And so,
00:06:09
Speaker
the How that plays into like, you know, women's cancers and especially breast cancer is there is a lot of sort of mythology and misinformation around like, oh, you know, she cheated on her husband, therefore she got breast cancer or witchcraft or things like that.
00:06:21
Speaker
And so what happens is even when there are kind of earlier signs, for example, you know, a small breast slump. There's a lot of fear and not wanting to know what it is and not wanting it to be cancer. And so that's one of the reasons they're not going to go to the provider in a timely fashion to seek diagnosis.
00:06:37
Speaker
And then it's also a barrier to actually getting treatment and staying with treatment as well. And, you know, there's definitely some studies that show as high as a 40 percent divorce rate um in sub-Saharan Africa with the breast cancer diagnosis.
00:06:52
Speaker
Yeah. Oh, you have cancer. I'm leaving you now. Sorry. Yes. yeah yeah Because people are blaming the patient saying that yeah she must have done something wrong. Yes, exactly. And again, that kind of stigma, all that stigma associated with it. One of the cool studies ah we completed in Tanzania, and it's already published and everything now, was we actually did a stigma reduction intervention leveraging breast cancer survivors. So what we did is we recruited survivors where they went through kind of a training program on knowledge, on motivational interviewing, and the intervention was one-on-one with a newly diagnosed patient, but before they actually started treatment.
00:07:31
Speaker
And so it was the survivor had the standardized like flip chart talk where we talked about breast cancer knowledge. That was actually another huge barrier to at the sort of patient community level. People just don't have knowledge and awareness about breast cancer. So they did this kind of standardized flip chart talk about just knowledge and addressing some myths.
00:07:48
Speaker
Then they shared their personal testimony about their breast cancer journey because, you know, now they're survivors. And then the last part was just kind of almost like a peer to peer counseling and really motivational interviewing to try to understand.
00:08:01
Speaker
what were sort sort of some of the barriers or issues that these patients were having in terms of if they were going to pursue treatment or not. So we actually, we measured stigma before and after, we measure measured knowledge before and after, and then we also measured treatment intent and then actual treatment initiation.
00:08:16
Speaker
We found huge increase in knowledge, huge reduction in stigma, 100% treatment intent, and then almost 90% treatment initiation at six weeks. And a
Healthcare Infrastructure and Access Challenges
00:08:27
Speaker
lot of the like some of this was definitely directly attributed to the survivor. We had so many of the patients were like just in shock that they've met a survivor that like this can happen. What a beautiful thing, though, when for a person who might feel that they're completely alone or stigmatized, wondering what might happen with their relationship and their life and to meet somebody who survived it.
00:08:48
Speaker
That's incredible. Exactly. And we're also kind of similar in Kenya, part of a team that's doing some stigma research as well, and more of sort of identifying the impact of stigma and looking at the intersection of stigma and mental health.
00:09:01
Speaker
And we've definitely found both in the hospital setting and in the community setting among breast cancer and survivors, there's definitely this correlation with higher stigma, also with higher anxiety and depression. Okay. What kind of treatment is available? Because I'm assuming...
00:09:16
Speaker
you know not Not to make too many assumptions, but I'm assuming it's not quite the same sort of options that we might have in the U.S. in terms of treatment. And especially if people are being diagnosed at very late stages, then maybe treatment can only be kind of palliative or maybe it's limited. But what kind of treatment have you seen available in Western Africa? Absolutely.
00:09:36
Speaker
Absolutely. So, you know, I mean, in general, when breast cancer are treatment anywhere, we think about kind of like, we think about systemic and local therapies, right? So local therapies is surgery and radiation and systemic therapies are different chemotherapies, endocrine therapies and immunotherapies.
00:09:50
Speaker
So really in Sub-Saharan Africa, i mean, one of the issues is just access to like regionalization of care and access to care. So Cancer care is generally available only in the cities, right, in the big tertiary hospitals.
00:10:03
Speaker
Surgery is almost always available. That's a good modality. Chemotherapy almost always available too. I mean, some of the most like standardized regimens for breast cancer are pretty old drugs. So there's lots of generic versions of them.
00:10:16
Speaker
Now immunotherapies, targeted therapies, for example, Herceptin that used in HER2 positive breast cancer, that's limited. um Although it is on the WHO central medicine list, it is not always available.
00:10:27
Speaker
it's It's also very costly, right? and It depends on the negotiation price. It is a generic form of it now. Endocrine therapies usually are pretty available um and not super costly.
00:10:40
Speaker
Radiation therapy is definitely very limited available. I mean, there's, you know, i mean, Malawi, right where we were, does not have radiation for the entire country of 16 million people. And then, you know, so there's like that layer of what's available. Then the next layer is work, you know, just, ah you know, like stockouts for like drugs or um cost of care. Right. So sometimes it's not part of the health care basket and even the patient has to pay.
00:11:07
Speaker
And then just like accessibility. Right. Like sometimes like even if a country has radiation, it's usually in like one city and you have to like travel and get there and stay there to do it. um Like even like Tanzania, where I work in the north and Moshi, the only current radiation facilities in Darcylam. So patients have to travel to Darcylam, which is an eight hour bus ride.
00:11:26
Speaker
and you know raation on that that's right And, you know, daily treatment for several weeks. So they have to, you know, stay there. So there's that kind of next level. And honestly, actually, the biggest challenge, I think, in terms of the breast cancer infrastructure to help guide treatment is really pathology.
00:11:44
Speaker
So pathology. Yeah. So, I mean, there are like some countries in sub-Saharan Africa where also have like one pathologist for the entire country. All types of pathology. Not like, you know, like here. like So for listeners who are not medical, um that you know, this is the person that is sitting in the lab typically and getting all of the biopsies, the tissue samples.
00:12:07
Speaker
and And communicating with the surgeon or the physician what kind of cancer it is which then dictates treatment. So to have one person for all of the patients in the entire country is absolutely, yeah, going to be inadequate, right? You can only imagine.
00:12:22
Speaker
And just like to show as like a conscious example, like here at like in the U.S. and like, you know, in an academic center, like where both of us are at, you know, not only do we have an entire pathology department with like dozens of pathologists, but then they become sub-specialized. So we have a whole section of women's health pathology and we have like five dedicated breast pathologists, meaning all they look at is like tissues from specimens all day. Whereas like compared to that of like countries of millions of people that have one pathologist.
00:12:52
Speaker
And then getting the specimen to there. And then for breast cancer, I said, it's really all about biology. So breast cancer is not one type of disease. It's many different kinds.
Awareness and Detection Strategies
00:13:01
Speaker
And it really has to do with something called receptors or for the lay audience is kind of like antennas that certain cancer cells have that helps, you know, that basically tells us if this cancer is being driven by certain substances like hormones and proteins.
00:13:14
Speaker
So there's different breast cancer subtypes depending on this receptor status. So knowing that part of the pathology, like what is their different receptor status is key to like modern management of breast cancer. And that also is like oftentimes completely unavailable or the patient has to pay an additional fee that they usually can't afford.
00:13:34
Speaker
And so that's another thing that really limits your ability to to have that, you know, more evidence-based and specified treatment that's really, you know, And even kind of goes to show like how much emphasis on prevention is important. Right. So and I now I get it because I'm thinking there aren't that many breast surgeons who do the prevention research. And, you know, as you are doing the full spectrum, that is really remarkable.
00:13:57
Speaker
But I can imagine now if you're meeting so many women who are so late staged and. you know, treatment is limited and how much more effort you'd want to kind of be contributing to prevention. So do you mind talking a little bit about prevention? Because I, you know, when I think back to Malawi, I i saw women with masses in their breasts. I saw the things that we only saw in textbooks in medical school, like the pew d'orange, all of these things of like invasive breast cancer that I never saw in the U.S. because of mammography and screening and, and you know,
00:14:31
Speaker
basically prevention. and so What do you think, like, what is the way or the key to prevent breast cancer in a widespread way when you don't have yearly um mammography available?
00:14:44
Speaker
Do you have thoughts on that? Yeah, absolutely. So definitely, you know, just knowledge and awareness. I mean, that's just first and foremost. And that is something that even, you know, studies have looked at and like that there's not enough sort of credit being due to that, that it really is. For example, even think in the U.S., right? The majority of women, no matter what their backgrounds are professional or education or race or ethnicity or anything, because of like, you know, ah October, right? And the pink ribbon.
00:15:13
Speaker
Most women, if they have developed a breast lump, will think perhaps this could be cancer. Now, is it cancer? No, not necessarily. Of course not. There's plenty of benign breast lumps.
00:15:25
Speaker
But I could say for most American women, if one day they wake up and they feel something in their breast, the thought of this could be cancer probably crosses their mind. And, you know, again, it if they have the accessibility, which is a whole other issue in the US, but most women will try to do what they can to get it checked out, whether that means going to their doctor, maybe talking to another friend about it, maybe talking to their church,
00:15:52
Speaker
But most women will start to be like, this lump, that's not normal. I need to go get this figured out. And, you know, there's going to be disparities in how that happens in the U.S. But in general, most women will have that thought.
00:16:04
Speaker
So even that very baseline, right, even in the absence of like the next level, which is actually screening. Right. And very key. I want to I want to ah highlight a very important thing right now. There is a ah difference between screening and early detection. okay And by definition, screening means asymptomatic, meaning I have no problems. I don't feel anything. I don't see anything.
00:16:24
Speaker
I'm going to go for my yearly mammogram. Versus early detection is exactly what we're talking about here, is just the fact that even in the U.S., most women, if something happens in their breast, any change that they notice, whether it's a skin change or a nipple discharge or a lump, it will cross their mind that this could be a problem, that this could be cancer, that Let me try to do what I can to get it checked out.
00:16:46
Speaker
And I think that's a key difference, right? Because even in a lot of these communities and stuff where I work in sub-Saharan Africa and supported by the literature, women do develop changes in their breasts and it does not cross their mind of, oh, it could be cancer. I need to go get it checked out.
00:17:02
Speaker
Or if it does, oftentimes it's associated with stigma and fear of cancer. yeah So instead of like, oh, let me go get this checked out and know now, it's like, oh, I hope it's not cancer. Cancer equals death, right? But obviously if it is cancer, it's not going to go away on its own. And the later you wait, the word is.
00:17:20
Speaker
Or the third thing that is a common thing that happens, which is ah leading to one of my current studies in Tanzania, is people go traditional healers. you know And there's some studies showing in sub-Saharan Africa, mean, traditional healers are the primary health care system. About 80% of patients will go to a traditional healer first before for a variety of ailments, not just cancer-related.
00:17:40
Speaker
And so that's another thing. So I think a big sort of difference in the prevention space when I think about high-income countries like the U.S. versus low- and middle-income countries like sub-Saharan Africa, is that important distinction and nuance between screening and early detection? Because I think on average, and obviously the U.S. s is a huge, diverse country, so with its own set of problems, but...
00:18:01
Speaker
You know, common things being common, most women, I think, again, because of the amazing advocacy that has happened over decades with breast cancer. I mean, you know, when it comes to October, you can't go anywhere without seeing a pink ribbon.
00:18:11
Speaker
Right. yeah But the benefits of that is like most women have this in their head that if they notice a breast change, they're going to be like, I should get this checked out. Versus we don't have that level of knowledge and awareness in sub-Saharan Africa.
00:18:25
Speaker
Or like I said, even if it is there, it comes with this other kind of stuff. so So I think those are definitely important things. And so on a lot of my work in sub-Saharan Africa is really focusing on not even so much screening, although I've definitely done a lot of work with screening as well, which again means focusing on asymptomatic women.
00:18:44
Speaker
but also really that early detection piece. And how do we leverage the, again, because resources are so thin, not just financial, but human.
Innovative Solutions in Breast Cancer Detection
00:18:54
Speaker
So how do we like leverage existing platforms, existing resources, existing leaders, community leaders, to empower them and educate them and help them you know overcome some of these even basic barriers of lack of knowledge, awareness, stigma. And then as that, you know, in parallel, as that being addressed is things like, you know, in Malawi, I've worked with task shifting in terms of training lay women to do screening clinical breast exams, also coupled with health talks as well, which was a big component.
00:19:27
Speaker
So again, you know, cause it's, it's hard. We're at a different point in the U S because we take for granted. We now have that like pervasive community knowledge and awareness that now we could focus like, okay, like you got to get screened before symptoms happen versus in sub-Saharan Africa. It's kind of like working. It's like, like, let's at least get this out there. So early detect. So, Hey, if you notice any change in your breasts, let's get, you get in and checked out right away. Cause it could be cancer and let's find out now rather than later. Yeah. And then as health systems evolve and are more you know sophisticated, then we can start to include more of screening of that ah asymptomatic population.
00:20:02
Speaker
And again, a lot of the you know work I do now is around task shifting and task sharing and who would be the best person to do that screening and then modality. So you know there's currently no role or recommendations for screening mammography in low and middle income countries unless they could do it in an organized population based level.
00:20:20
Speaker
which most countries cannot. And the whole mammography infrastructure is very, it's a lot, you know, it's not just the machine. There's been, a you know, there's a lot of good intentions of like, oh, we'll donate a mammogram machine, but you need to donate the entire infrastructure surrounded with mammography, which is a lot. Radiologist.
00:20:39
Speaker
Yes. You know, and even that, like even they say to be write write trained radiologists to be able to really read mammograms well, they need to read a minimum of four to 10,000. before they could before they could really confidently read it. So that's what saying. There's a lot. And then there's like, you know, stereotactic biopsy. So what if a mammogram finds something? That's just the first step. You need more imaging.
00:21:02
Speaker
Then you need tissue sampling. um And then you need to get that tissue sampling to a pathologist, which we already talked about before. wow Yeah. It's incredibly challenging. And ah Yeah, it's it's amazing because I think that gynecology is incredibly challenging in in sub-Saharan Africa and many of the countries where I worked as well. And then I realized, wow, I just didn't even didn't even think about this side of medical care for women.
00:21:27
Speaker
Okay. So tell me about the project that I remember you talking about these women who were blind and they were being trained to do breast exams and it was a way for them to, you know, they otherwise may not have jobs and they were able to help kind of detect breast cancer.
00:21:42
Speaker
um I was an advisory board member of an amazing, very thriving and successful organization that's based in Germany called Discovering Hands. And it is social enterprise that's been in Germany for about 15 years and like, you know, amazing work that they have done that I have nothing to do with. Yeah. This was your idea. I was like, oh no, no, no, no no's no. I've just been like, i'm I'm an advisory board. So it is a social enterprise.
00:22:08
Speaker
It's well established in Germany, but they also have projects and franchises in other countries where I briefly served on the advisory board for the India ah project. And I'm currently on the advisory board for the Swiss group.
00:22:21
Speaker
which is called Pre-Tax, so trying to but bring the franchise to Geneva. um But that is you know well worth mentioning, though, because it's an incredible organization that I encourage people to look into. it's So it's called Discovering Hands.
00:22:33
Speaker
Like I said, it originated and is based in Germany. um It is now part of the German health system. But basically, it it does is it trains blind women to do screening clinical breast exams. They're called medical tactile examiners.
00:22:46
Speaker
And they there have been studies done on them as well. And they actually find 30% more tumors and 30% smaller tumors than physicians can. They are now, their services are paid for by like, last I checked, it could be a different number now, but at least 26 different hospitals and clinics throughout Germany and their services are paid for by every major German health insurer. And there's even a standalone Discovering Hand Center as well.
00:23:11
Speaker
And they've also like now their vocation, like a medical tactile examiner is specifically even recognized now by the Ministry of Health or Education Labor. I mean, it's an incredible story. And it is, you know, I do want to also emphasize the model that it is a social enterprise, meaning it's a business model. It's not, you know, just a nonprofit kind of charity work. So these women...
00:23:32
Speaker
are employed, they earn an income. There is, you know, like a whole business model about like if a clinic or hospital employs them and how that works with discovering hands and all of that. But it is a win-win for all because now you have this amazing group of women that were traditionally had very limited employment opportunities that oftentimes relied on the government for, you know, welfare kind of support.
00:23:53
Speaker
And now they're able to like be in the workforce and provide a meaningful service that also addresses, you know, breast cancer and and been early detection, which of course, like impacts the society and the health system and the economics of that as well.
00:24:06
Speaker
So it's a great, great model. And they have a pretty robust franchise in Austria. Great kind of collaboration going on in India. There have been some pilot projects that were done in Mexico and Colombia as well that went well. But, you know, in the kind of pilot project phase, but just um weren't able to kind of get those business partnerships in place to have it more of a long term thing. But it's under development in Geneva now where I work. It seems like it would be such a great help in places where mammography is challenging. um Of course, it doesn't fix all the rest of the steps after that.
00:24:38
Speaker
This work is incredible. And I think it's amazing all that you've done in all the different countries where you've done initiatives and found how it's slightly different in each country, right?
Financial Toxicity in Healthcare
00:24:48
Speaker
And the cultural aspects are different in each place. If we're to bring it back to the U.S., what do you think is needed here?
00:24:55
Speaker
in terms of improving treatment of breast cancer or eradicating it or, you know, really just making people's quality of lives better? That's a great question, you know, and I think, you know, one of the reasons I went into breast is I love that it's constantly evolving and, you know, the leaps and bounds have been made for breast cancer is incredible. I mean, now, you know, we're talking about five-year survivals of nearly 100% for the most common subtypes.
00:25:22
Speaker
And all that is due to decades of incredible research done by the and NIH and other organizations and all the incredible like patients that agree to be on trials and all the incredible advocacy that has been done.
00:25:34
Speaker
So, you know, and it's constantly evolving and constantly changing. I mean, there's like a practice changing trial being published almost like every year. So, I mean, I love it. That's why it's like exciting for me to be part of the field and part of that story.
00:25:47
Speaker
But yeah, but of course, you know, we're still seeing huge inequities, you know, access to care. There's just basically we still have a very fragmented system, particularly for the uninsured and underinsured.
00:25:58
Speaker
And there are these kind of patchwork solutions that But that's the problem is their patchwork solution. So for example, in the 90s, Congress passed the National Breast and Cervical Cancer Early Detection Program, which was a great program stipulating that if you were, you know, uninsured or underinsured, that you had access to free screening for breast and cervical cancer.
00:26:18
Speaker
But the problem is the actual intended policy, but its implementation were really challenging. There's a lot of bureaucratic administrative burdens. People, you know, like providers and hospitals have to sign up to be the program.
00:26:31
Speaker
in the part of the program that not everyone was willing to do it. And then even the places that did have it, you know, oftentimes it was also, you know, maybe a patient might have to go 45 minutes and Monday through Friday, 9am to 3pm to get her manogram, which is not really conducive if you're working two to three jobs to make ends.
00:26:49
Speaker
And then the other interesting part is then it took them another 10 years of health policy to then realize, well, wait a minute, now we're finding cancers with this program, but now we have to pay for the treatment. because that wasn't part of the initial policy.
00:27:01
Speaker
And now we also have like an emergency breast cancer Medicaid. So now if you do get um diagnosed with cancer and you're uninsured or underinsured, you may then qualify for breast cancer Medicaid.
00:27:13
Speaker
But here's the problem with that. It's like now you're coming in, you don't have insurance or you don't have access to care. So now you're coming to the ah ER with a fungating breast mass because you don't have insurance or access to care. But now you're going to get your emergency Medicaid and now your treatment is going to be really expensive.
00:27:27
Speaker
So there's tons of ah problems, even with sort of, again, there's like these good like patchwork of things to address this barrier and that barrier, but they're not like all a cohesive system. Which is a shame because we have the resources, right? We do have the mammography suites, the radiologists, the pathologists, the treatment. We shouldn't have the inequities that we do.
00:27:55
Speaker
Absolutely. And the other big thing is financial toxicity. So that is a huge thing that's now really being written about and spoken about a lot and just the oncology community as a whole.
00:28:07
Speaker
You know, in fact, like ah one of our main journals, JCO Journal of Clinical Oncology. ah recently published like a whole volume, a special like edition on financial toxicity, because this is becoming another huge thing.
00:28:20
Speaker
So, you know, the good thing is like, we have all these amazing treatments that patients can access that really like improve prognosis, improve survival by, you know, significant amounts. Yeah.
00:28:31
Speaker
But not only they come in toxicities, you know, like physical side effects, right? Like neuropathy or hair loss, things like that. Some become chronic, some become acute. But then there's this whole concept of financial toxicity, meaning, you know, there's a huge proportion of cancer patients that go into medical debt because of trying to pay for their cancer treatments.
00:28:49
Speaker
And that's not even counting their indirect costs, right? Like lost work, right? So if you're not hourly worker, you're and you have to spend a day in chemo, that's a day you're not working. And usually you have to spend the day after recovering from chemo, that's two days you're not working.
00:29:05
Speaker
And then sometimes this builds up so that people lose their jobs. ah Cost of transportation, parking. you know One of my mentors um from Fellowship, ah who this is one of her areas of primary studies, you know she did this big study several years ago that even looking at well-insured women, right so have the best insurance, usually more educated, usually from a higher socioeconomic status, even from them, right? This most top layer ah from a financial and socioeconomic perspective on, and which by the way, also usually means they're presenting at much earlier stages too, right?
00:29:38
Speaker
So even with them average out-of-pocket costs for one year of breast cancer treatment was $5,000. Wow. Right. And this is for your like well-insured, well-educated, yeah financially stable woman. So imagine now how that trickles down if you're uninsured or underinsured or lower socioeconomic status or presenting at a later stage. And all of those kind of are correlate rarely, right?
00:30:02
Speaker
Those numbers go up and up and up. So that's another really you know huge thing that that we're doing. That is a sad thing. The numbers go up and up for the people who can afford it less and less, right? it's Exactly.
00:30:13
Speaker
Yeah, that is so sad. two things that are common parallels between work, i'm what I'm seeing in sub-Saharan Africa and in the US.
Cultural and Historical Influences on Healthcare
00:30:21
Speaker
So financial toxicities, like I said, you know it plays out in different levels where, like I just mentioned, the US, no matter what strata you're in, there's some degree component of it.
00:30:31
Speaker
But in sub-Saharan Africa, so much of it, like of healthcare is fee for service. And like every step of the way, like paying for your tests, paying for your diagnosis, paying for your treatment, paying for for pathology,
00:30:42
Speaker
getting there. And so there's huge financial toxicity there and really unaffordable to most patients, which is one of the reasons you have high treatment abandonment or not even able to afford treatment to begin with.
00:30:53
Speaker
So there's a big parallel there. And another big parallel actually is in stigma, but particularly, interestingly, what at least from what i'm seeing in my practice here in Alabama um is with, it's definitely a bit more common in the African-American community. There's still a bit more stigma around cancer, um not liking to talk about it as much, like even just within families. I mean, I've heard from just even colleagues of mine that are African-American oncologists um that even within their family, how difficult it is for others, for relatives to come out to talk about it because there is still so much stigma. And then we the other thing we deal with in the U.S. a lot is mistrust.
00:31:31
Speaker
um and particularly in the health system and signs, and particularly among that I see, at least in the Alabama setting, more among the African American community. And kind of a parallel to that, to what I see in sub-Saharan Africa is, you know, that's one of the reasons people actually go to healers first. There is more of that community and that trust and this fear of also going to the hospital. Right.
00:31:52
Speaker
I mean, there's so many reasons to mistrust medicine, especially in the South of the U.S., right, for the for the Black population, unfortunately. Yeah. One of the other studies we just did was looking at clinical trial enrollment. So we actually interviewed women that were eligible for trial, but declined to participate.
00:32:10
Speaker
And we wanted to understand what was their thought process and rationale so that you know we can understand these issues better and hopefully in the future redesign clinical trial recruitment to help optimize. And especially, it's really important to have diversity in our clinical trials. And, you know, interestingly, a big thing that came up in this population, about almost a quarter of the patients specifically mentioned Tuskegee, Tuskegee syphilis experiment, right? And this was now decades later. And people remember that.
00:32:37
Speaker
Yeah, absolutely. And for anybody who doesn't remember it, I'll put some information in the show notes because um You should know about the Diskegee trials and and how that unfortunately has influenced people for generations and caused a ah huge chasm of mistrust um for the medical community or for the Black community towards the medical community. And that's just one example, right? And it's even more reason of why we need to look at health inequities in all cancers, all medical aspects and not stop paying attention to them. Right. Absolutely.
00:33:10
Speaker
Richest country in the world. and still we We have a lot of work to do. Well, thank you so much. I really, really appreciate your time and the work that you're doing. You have so much energy. I don't know how you do it, but I'm so glad that you're doing it. off The women that, you know, you're influencing so many women's lives for the positive. And I thank you for that. So thank you for your time, Dr. Goodnick. Thank you.