Live Press Briefing featuring a panel of nationally recognized experts in the field following their presentation at the American College of Surgeons (ACS) annual ACS Clinical Congress being held virtually October 23–27.
African-American women have the highest mortality rate of all women with breast cancer. A significant number of African-American women present at an earlier age of diagnosis as well as with more advanced stage of the disease. Five physicians will discuss barriers in access to screening and treatment, current recommendations for screening including risk-assessment models, modalities, and frequencies recommended for African-American women, and the impact of and strategies to reduce delays in diagnosis and treatment in this population.
This follow-up session will include a summary and discussion of the panel presentation, along with a Q&A for reporters. Reporters are encouraged to view the panel session [ Improving Breast Cancer Outcomes in Black Women: Time for a Change (abstractsonline.com)] before attending this press briefing. To obtain press credentials for the panel session on Monday, Oct. 25, email: [email protected]
Media Register Here for the Press Briefing
- Lisa Newman, MD, MPH, FACS, FASCO, director of the breast program for the Weill Cornell Medicine-NewYork Presbyterian Hospital Network
- Anita T Johnson, MD, FACS, Chief of surgery and director of Breast oncology atCancer Treatment Centers of America
- Oluwadamilola Fayanju, MD, MA, MPHS, FACS, Chief of Breast Surgery and Surgical Director of Rena Rowan Breast Center,
- Tuya Pal, MD, Associate Director for Cancer Health Disparities, Ingram Professor of Cancer Research, Professor of Medicine, Professor of Pediatrics at Vanderbilt-Ingram Cancer Center
- Debra Monticciolo, MD, president of the American College of Radiology and vice chair of the department of radiology (for research) and section chief of breast imaging at Baylor Scott & White Medical Center-Temple in Texas
When: Tuesday, Oct 26, 2021, 11:00 am - 11:45 am EDT
Where: Newswise Live Zoom Room
Thom: Hello and welcome to today’s Newswise Live virtual event. Today we have a press briefing as a follow up to a session at the American College of Surgeons annual ACS clinical congress.
Our panelists today are going to be talking about improving breast cancer outcomes among black women. Time for a Change.
We’ll be talking about moving from just talk about racial disparities and moving into topics of how to actually take action on these things.
I’d like to first introduce to start things off – Dr. Debra Monticciolo, she was a moderator for yesterday’s panel at the annual meeting. She's a doctor and President of the American College of Radiology and the Vice Chair of the Department of Radiology and section chief of Breast Imaging and Baylor Scott and White Medical Centre in Texas. Dr. Monticciolo, thanks for joining and we would love to hear your summary of your presentation and I have a couple of slides to show some of those highlights for you, so Dr. Monticciolo, please take it away.
Dr. Monticciolo: Thanks very much, first of thanks to all of you for your interest in this topic. I have to make a small correction, I'm past President of the American College of Radiology, I've moved past that role, but I did enjoy it. Are you going to show the slides now Thom – Okay, great.
So, this is a very important topic and I'm really happy that we’re focusing on it. I spoke on risk, diversity, and breast cancer screening because I'm a breast imager in central Texas as Thom said, and if you'll go to the next slide, please – just to summarize my talk, we basically did a high-risk guideline. We separated out average risk from high-risk women a few years ago, when we updated our guidelines and that resulted in a separate paper focusing on women at higher-than-average risk and when we did the evidence review for this, it became apparent that black women are actually a population that should be considered at higher risk. And this was for several reasons – they have higher incidence of genetic mutations and in fact we’re always talking about the BRCA 1 and BRCA 2 mutations, I think it’s widely known in the medical community that these are more prevalent in women of Ashkenazi Jewish decent, but what’s not widely known is that they're also more prevalent in women of African American decent and I think that’s really important point and simply has been lost. It’s not new data and so we were really stunned to find that we could gather quite a bit of evidence showing that there is a genetic higher inherited mutation rate among black women.
They have higher death rates, we’ve long known that they have about a two-fold increase of triple negative breast cancers which are highly lethal and so for these reasons and others, we felt like this really needs to be called out in a guideline. I think we were the first ones to do that, and I'm not saying that to congratulate us, I'm just stunned that it hadn’t been done sooner and that’s very important.
On the next slide I’ll show you some data that we were working on subsequent to that data and it actually led me to update our average risk guideline, which was just updated and published last month. This data that’s shown in this slide was published in the Journal of Cancer online ahead of print in august and it should be in print any minute actually – but it focuses on really why we are promoting screening at age 40 and not waiting until 45 or 50 – this is important for all women but it is especially important for minority women and this paper – we looked at breast cancer diagnosis and mortality by race and ethnicity and we found that minority women are 72% more likely to be diagnosed with invasive breast cancer under the age of 50. They're 58% more likely to have advanced breast cancer at presentation under the age 50 and 127% more likely to die under the age of 50 than white women.
Now this is important to all of the minority cohorts who suffer from these issues, but black women suffer in particular. And if you take out the population distribution effects, which is what we did – and look at underlying incidence rates, its black women that have the worst outcomes. They are most affected by these tumours at young age and have the most mortality impact.
So, our high-risk guideline was meant to start a conversation and call out the importance of this. We’ve done continued work looking at the data – this is based on US CO21 data, and I think it really points to the fact that we are failing black women – really. Waiting until 45 or 50 is not good for any woman, but it’s a disaster for women of colour and especially for black women.
Thom: Thank you so much Dr. Monticciolo – members in the media you'll have a chance to ask follow up questions to Dr. Monticciolo after we go through the other panelists’ summaries. I’d like to introduce next Dr. Tuya Pal – she's a doctor and associate director for cancer health disparities at the Ingram – and she's the Ingram professor of cancer research and professor of medicine and professor of pediatrics. Quite a long list of duties there Dr. Pal – at the Vanderbilt Ingram Cancer centre – Dr. Pal thank you so much for joining us and we’d love to hear your summary of the findings and talk that you gave yesterday.
Dr. Pal: Thank you – I wanted again to echo Dr. Monticciolo’s thoughts that we’re really excited that this is of interest broadly – this topic. And I don’t have any slides but I'm just going to give you a summary of my talk – so really when I'm thinking about care delivery pertaining to inherited cancer predisposition, again I think of it as identifying individuals at high risk and again I think Dr. Monticciolo has already given us some tools in terms of what you look for – so identifying these individuals and getting them to care – so by care I mean genetic counseling and testing which is the care delivery piece and then once they’ve gotten this care and they’ve had the testing if they choose to pursue it, then the follow up care, because really the testing is not going to improve outcomes right – it’s the follow up care that’s really going to make a difference and improve outcomes and save lives and have brought impact for family members – so when we’re thinking about disparities in black women, what our data from a few years ago showed through a study we conducted through the Florida State Cancer registry is that black women get genetic testing less often than other women, including white women as well as Hispanic women, that again is what our data showed. In a group of women that were eligible for genetic testing – so young women with invasive breast cancer – black women were offered testing about a third of the time compared to Hispanics and non-Hispanic white women.
Now we also looked further in our data to figure out well what could be the reasons as to what was going on and what we found was again – these were women that were recruited through the state cancer registry, which means they were not women in one specific centre, one specific practice and what we found is they were being given the recommendation for testing less often. So, there is something systemic going on here where these women are not being told or referred for genetic testing and the referral is what is most associated with getting the testing and white women are way more likely to get referred compared to black women.
At the point of care delivery, again what we know from a policy level is that there are certain insurers that require a genetics professional to do an assessment for coverage of testing and some data has also shown disparities in this realm, because something with getting care, there are enough barriers such that these types of mandates, which are really not at all focused on increasing disparities, but they might be – because these hoops that women have to jump through may actually reduce the rates of testing again, which again is not a good thing because these mandates are not something that were developed to widen disparities, it was more to provide a standard quality of care for those that were pursuing testing.
And then the last thing is the follow up care piece. Once individuals are tested, we want them to get guideline adherent appropriate follow up care, and again with our Florida study what our data suggested was that black women are getting – in these women who have a BrCA mutation across the three racial and ethnic backgrounds, black women were getting risk reducing oophorectomy, which means removal of the ovaries – much less often than white women or Hispanic women, and again when someone has a BrCA mutation we have screening options, we have surgical options for breast cancer risk management, for the ovaries all we have is risk reducing surgeries, because screening is not proven to work.
So again, there is a disparity here and it’s really important to get to the bottom of this. And then the last thing I want to say is – when we’re thinking of disparities – genetic testing can influence care both in terms of cancer risk management – family communication, because once you’ve identified someone it’s important to share that information with family members and then cancer treatments. And again – this is becoming really important as there are FDA approved drugs that are targeted for cancers that arise in individuals with a BrCA mutation and even in the clinical trials space, what we’ve seen is black women are less likely to be included in these trials and again – what the data is telling us is that it’s not that they're not interested, there is something else going on, they may not be approached – and I think this is a good Segway to the next speakers talk focused on clinical trials, so thank you.
Thom: Thank you Dr. Pal – I want to introduce next Dr. Lola Fayanju, she's the inaugural Helen O’Dickens presidential associate professor at the School of Medicine at the University of Pennsylvania. She's also chief of breast surgery for the University of Pennsylvania health system and she's also surgical director of the Rena Rowen Breast Cancer in the Abramson Cancer Centre, thank you do much for joining us Dr. Fayanju and tell us please the summary of your findings and your talk during yesterday’s session.
Dr. Fayanju: Thank you so much for having me. I was so honored to be on this panel discussing these very important topics. So, I was asked to speak about disparities and clinical trial participation along racial dimensions and the important thing to know and what’s pretty widely known is that black and Hispanic individuals make up anywhere from 12 to 20% of the US population. They represent anywhere from 5% to 8% of those participating in clinical trials and that actually varies also by disease site and concerning people of color are underrepresented in clinical trial even for diseases that are more common amongst them, such as multiple myeloma.
With regards to breast cancer we know in particular that black women are more likely to be diagnosed with triple negative breast cancer which is a particularly aggressive disease that is twice as common in black women than in white women, and as we think about the disease within breast cancer – the good news is that breast cancer on the whole is one of the success stories in oncology – most women diagnosed with breast cancer do very, very well. We nonetheless have these pockets of sub optimal outcome and disparity that are only going to be further worsened by not including the people of color who are disproportionately infected by these more aggressive cancers for which we have less effective treatment.
One of the things we found when we conducted a study comparing women who participated in clinical trials to those that were potentially eligible for them is that we continued to see decreased participation in clinical trials or opportunities to participate across all groups in part because clinical trials have become more specific, they're more – the criteria are more granular because we have better understanding of the heterogeneity of breast cancer and so we’re no longer having the kind of trials where it’s like – have breast cancer- come and be enrolled. It’s more like – we want to have people with breast cancer who have triple negative sub type or positive subtype or where there's known genetic mutation. But again, we are less likely to test women who have a genetic mutation, who are people of color.
If we are less likely to enroll women of color in clinical trials, it means we are frankly under powering our studies to really detect the difference and really understand the disease processes in these groups, but also have understanding of that path the physiology can influence our understanding of the disease as a whole. Something that’s actually been observed in prostate cancer.
So, in terms of opportunities to improve the situation, we have a number of options.
One – we can perhaps move away from the bench to bedside model which has historically been observed for clinical trial development, that is we begin with first in animals and then in humans approach to disease investigation and identifying targets for intervention and instead work more with the communities that we serve, to think about what types of problems they're seeing, what types of practical issues are also occurring in those communities that would also benefit from clinical investigation – how can we have a cyclical and bi-directional interaction with the communities we serve to better understand what priorities should be made in research funding and investigation and then how can we make it easier for patients to participate in clinical trials.
That will require 1] asking people to participate in trials first of all, the truth of the matter is there's a lot of systematic bias in regard to who we invite to participate in clinical trials. We want the trials to look “as clean as possible” that is balanced groups where we can potentially isolate the intervention that’s being studied as the reason why those two groups might differ. But if we don’t include people who have more co-morbidities, we don’t include people of color, we don’t include older people, then we’re going to have a less good sense of how this drug or intervention will actually work in the real world.
So that’s one thing – another thing is we need to think about how we can have people in place to advocate for these patients who look like the communities that we’re trying to target – who can offer culturally concordant messaging that recognizes the heterogeneity within ethnic minority groups as well as across them. Targeting people of different socio-economic status, different levels of language familiarity etc. will all be really important.
And then finally it will be really important for us to think about the pipeline of researchers, that is – who is going to be continuing research. The truth of the matter is that there are a lot of stakeholders of clinical research, not only those who conduct the research, those who fund the research and the patients who increasingly advocate for what types of research should be prioritized. But again, if there isn’t diversity across all of those groups, that means that certain types of groups and certain groups will be privileged relative to others in terms of who gets attention.
Thom: Thank you Dr. Fayanju. Next, I’ll introduce Dr. Anita Johnson, she’s chief of surgery at the cancer treatment center of America, Atlanta. Dr. Johnson, please summaries your findings and talk in yesterday’s presentation.
Dr. Johnson: Well, I just want to thank the American College of Surgeons, the panelists for their excellent efforts in the research and just their dedication in eliminating disparities in African American women. What we know for sure just as the topic states is that there is time for change, that we must act on the numbers, addressing health disparities in black women is multifactorial and so we’re looking forward to movement in this area, not just discussions. As we stated earlier, Dr. Monticciolo stated that we need to change the screenings guidelines when it comes to black women – so we’re looking forward to participation from other societies, including the American Medical Association. We’re looking forward to our insurance companies complying with this need, once we fix this issue for black women, we fix it for all women. We fix the mortality rates. We fix the late-stage disease presentations, the incidence of triple negative breast cancer as well as the lack of screening for genetic mutations in people of color.
So, our continued conversations are very important, but conversations must move towards action, and we look forward to that change occurring within the next few years.
Thom: Thank you Dr. Johnson. We also have with us Dr. Lisa Newman, she’s director of the breast program for the Weil Cornell Medicine and in New York Presbyterian hospital network, thank you Dr. Newman for joining us – please summarize your part of the panel discussion at yesterday’s conference event.
Dr. Newman: Thanks so much, what a pleasure and an honor to be a part of this program and I congratulate my brilliant colleagues in this panel and participating in this session for the amazing work that they are doing.
We’re heard two recurring themes from each of them. One thing being that we have great treatments and ways of improving survival rates from breast cancer. We have wonderful technologies in mammography for early detection, we have great advancement in genetic testing so that we can identify women with hereditary susceptibility, and we can use information from these genetic tests to arrive to precision medicinal treatments for breast cancer patients. We have made huge advancements in the clinical trials mechanisms so that we can identify yet additional better ways of treating breast cancer.
The oncology community has already been using all three of these domains, these technologies to improve breast cancer outcomes and it’s been successful across all three of these domains, African American women are being deprived of maximum utilization of these technologies and these advances. This is the definition of systemic racism.
We won’t be able to get rid of these awful disparities that we have documented over many, many decades with black African American women having at least 40% higher breast cancer mortality rates compared to white American women, we won’t be able to get to the bottom-line regarding why African American women have twice as high a burden of triple negative breast cancer, unless we conduct more research. We have to make sure that the early detection is provided across the board. We have to make sure that the research is done across the board, we have to make sure the genetic testing, genetic counseling and utilizing precision medicine techniques – that all of these wonderful technologies are being utilized optimally in the black African American community.
That’s on us – this is the responsibility on us as oncology care providers.
Thom: Thank you so much Dr. Newman. We have one chat from one of the media professionals on the call today who is a health journalist, and she wants to pitch an idea for the story at the Washington post and she’s interested in contacting the speakers, so please be on a lookout for an email from Katie Gray.
I want to open the floor for questions from the media on the call – please feel free to chat your questions and I will relay them to the panelists for you, I want to start off to warm things up, and Dr. Monticciolo if you would highlight just any takeaways in the most layman terms you can, to help the media to communicate what are the most important parts of the issue to the public. What do you think are 1, 2, 3 key things that you want readers to understand from media writing about this topic?
Dr. Monticciolo: First of all, I think it absolutely has to be recognized that black women are higher risk, and this is something I think generally physicians are not aware of. If you're in my field, you see young black women come in all the time, in their 30’s with aggressive breast cancer, so it’s not a surprise to a breast imager, but I don’t think it’s really appreciated across the medical field, and we need to get these women in and have a risk assessment by the time they're 30. We recommend that for all women but it’s especially important for black women so that we can offer supplemental screening if they are tested to be at high risk.
Now the other issue is – that because they have not been recognized as a high-risk population, there isn’t much data controlling just for that factor, and that’s problematic, because if you look at the list of patients who are at higher-than-average risk, for whom we consider supplemental screening, if you have more than one of those factors, your risk goes up. I mean you can’t add them together but obviously – let's say you have a strong family history, and you have dead and suppressed tissue, or a strong family history plus an atypia biopsy, those things are additives and what we’re not appreciating is that black women are especially high risk and that has to be taken into consideration.
So, I see a black woman with atypia, I'm much more worried than I am for white women because I know her risk is going to be higher and we don’t have a way to offer supplemental screening right now with the current data for these women, because insurance companies won’t cover it.
So, they don’t have the access they need, and we really need more data, and we need to recognize this as a problem, so that’s I think really important – just to get the knowledge out there but as my co-speaker said, we need to action on that knowledge as well.
Thom: Dr. Fayanju, I’d like to ask you to talk a little bit on the topic of the guidelines. Sure, many people have caught headlines over the years for changing guidelines for all kinds of different screenings that you should get when you turn 40, when you turn 50 – if you have family history, things like that – how important is it? What kind of message does it send in that official way of updating these guidelines with specific effort to reach these underserved communities and populations such as black women where there's such terrible disparity?
Dr. Fayanju: I think ultimately, the first step is actually as Dr. Monticciolo just said, risk stratification. And that risk stratification is typically going to happen in women’s primary care homes. And so, part of what we need to do is break down the barriers between primary care and specialty care and have better integration of care across the continuum of health and across the continuum of women’s life.
Many women only access care when they're childbearing, before they're about 50 years old, in order to obtain contraception. So, those offers opportunities for us to assess women to collect thorough family histories to figure out other aspects of their lives that might put them at higher risks for breast cancer, and it’s through that risk assessment that we can then refer women for appropriate additional screening as needed.
The truth of the matter is there are still a lot of women that don’t know that their grandmother has ovarian cancer. They might think its cervical cancer or endometrial cancer – what type of women’s cancer or gynecology cancer a person has, has a big difference, the ediology of those are very different.
So again – risk stratification will be the first step.
With regards to updating screening guidelines we need to think about whose care and whose concerns are centered when we develop screening guidelines. The screening guidelines that were put forth by the United States Task Force, would recommend that a woman can start considering screening at around 40 – doesn’t really need to start screening till 45 or 50 and then can move to biennial screening after 65, all of those include censoring the people who are worried about anxiety, who worry about procedural pain and who may not have the competing worry of late-stage diagnosis.
The data to also inform those guidelines are largely from Scandinavian countries with socialized health systems and less diverse populations than we have in the United States. And so again, in terms of saying we want to give them the option to avoid anxiety and peri procedural pain, which women – for whom is that more of a priority than risk of death from breast cancer.
If we really think about the risk benefits of earlier screening, we’ll realize that there are huge gaps in the population, especially as the United States are more diverse, who’s really high risk of late-stage diagnosis and deaths from breast cancer, is not being centered in our recommendations. That’s all this is, and I think we need to reevaluate again what we’re prioritizing, who’s risk we’re prioritizing in terms of offering revised guidelines that really think about who is most likely to be hurt if they're not screened at an appropriate age.
Dr. Monticciolo: Those were great remarks and it really hits to the heart of my thinking on this – waiting until 45 or 50 is a bad idea for all women, but it’s especially detrimental and really a disaster for women of color and the idea that you should put it off because of some anxiety or the chance of being recalled which is very small, or some other thing – all of these risks of screening are non-lethal and breast cancer is highly lethal, so it’s not a good idea for anybody, but you're right – the guidelines are not recognizing the diversity of the US population and that’s actually why we updated our most recent guideline for average risk, it just came our last month – we have a special focus on diversity, including the LGBTQ community, but the fact is – that US PSDF guidelines really try to save the most mammograms and we’re trying to save the most lives. So it really depends on what your priority is – they say we’ll get good mortality reductions, but screening 50 to 74 – only – that limited screening cuts the mortality benefit that we could achieve with mammography in half, and those are women’s lives we’re going to lose if we don’t screen regularly and start early and we’re going to lose – it’s going to be disproportionately fall on black women and other women of color.
Dr. Pal: Yeah, so when we’re talking about some of these things, the risk prediction models have been developed in white women, right – so that’s why they don’t work well in black women and there is actually a paper that just came out this month, Julie Parmer’s group which refined the risk prediction model in black women to make it more relevant to them, and I would say that this is a cross cutting theme across every aspect that all of us are speaking about – right – we need participation of all women for the data to be relevant for everyone, and right now it isn't. so, when we’re talking about clinical trials, the same thing comes up. We have certain classes of drugs for BrCA carriers – oh we didn’t test them in black women – so how do we know that they work as well in black women? So again, if we don’t include these populations, it comes back to genetic testing when someone has genetic testing, there's three possible test results – a positive or a negative or an uncertain result. Which is usually not a concerning result, but it is concerning for patients sometimes, because it is something we’re not sure about.
Well, black women have higher rates of these uncertain results, because they have not been tested in much, we know less about them. So, I would say inclusion is huge, when we are talking about poly-genic risk force, that’s where the future is going with risk prediction as well. We are looking at multiple different areas of the genome to predict risks. Now if we have don’t data on black women, these risk prediction models do not work well in these women. So, we must include all of these populations- and if we don’t, we are going to widen the divide. Like we are having great advances in technology to improve outcomes, to save lives. But black women are going to be left behind, or any population that’s not being accessed on the front end in the research is not going to have the same benefits. This is especially important in black women with breast cancer, as an example, because we know that the mortality rates are higher, the incidence of early onset breast cancer is also higher. So, again it’s critical that we really come up with strategies to address this.
Thom: We have a question in the chat from Emerigo. His question is that research over the past year has shown that the covid pandemic has further highlighted these kinds of disparities including breast cancer screening, so, how much would you say that the pandemic has spurred an increased interest in addressing these disparities? Dr. Monticciolo, any thoughts about that?
Dr. Monticciolo: Well, certainly there was diversion away from screening during the pandemic, as hospitals tried to cope with an influx of patients who were seriously ill, and a lot of resources were put there. I am interested to hear what my surgical colleagues had to say – I know we had to delay screenings and delay treatments. Whether or not it helped address disparities, is another matter. I would hope we are all concerned about these disparities because it is blatantly obvious, if you do any literature search or research on this - not that they exist. But I don’t know how much the pandemic has helped focus on it. I think it’s helped us focus on what happens when we don’t screen, because we are now seeing women show up with more advanced disease. Now that’s just anecdotally, I mean I am seeing it my practice. So, it helped with focus on the need to keep up with treatments or screening, but I am not sure that it really helped us address the disparities.
Thom: Dr. Fayanju what are your thoughts on the intertwining of the covid pandemic with these issues and the motivation to move forward with this as that’s brought so many things to the surface.
Dr. Fayanju: So, it’s well documented that the Covid-19 pandemic has had an outsized effect on the physical as well as socio-economic health of black and brown communities. That has provided a lens to which more people are viewing health disparities as an urgent public health priority. Interestingly, when Covid-19 first presented in the Western Hemisphere, people thought of it as a great equalizer, because all kinds of people were being diagnosed- from Tom Hanks and Rita Wilson. But of course, what was happening is that those individuals were getting tested. One of the huge disparities that we saw early on, in the Covid-19 pandemic, were disparities in the availability of testing as well as disparities in who was listening to you when they walked through the emergency room door and saying - I think I might have covid. Many people of color were turned away because they were believed not have “the risk factors such as traveling outside the United States, for developing Covid-19”. But, in fact, as we learnt more about how it spreads, and the types of jobs you have, the kinds of homes you live in- if its multi-generational- all of those things contributed to whether or not you got Covid-19.
So, Covid-19 did reveal that we have a huge inequal society. That’s something again that was known to those of us who already know of those disparities- but it’s been made really apparent to all of us.
The question is where are we going from there. One thing that I think has been important is that the shift away from thinking that implicit bias is the cause of the disparities we see, and access alone is the cause of disparities we see. To recognize in the world that systemic racism contributes to these things, and I thank Dr. Newman for naming that - but I will also say that the medical literature is more reluctant to name that for many years.
Prior to 2020, you could not find the phrase ‘systemic racism’ in the New England Journal of Medicine. I know, because I looked, it was a part of giving a talk on Covid-19 disparities. And so now that we are saying it is systemic racism. Now we are prioritizing health equity. There are people jumping on the bandwagon for that study because it is a source of funding and increased prioritization by funding agencies. That being said, I hope and pray that this does not represent a shiny object that people take their eye off of as the pandemic hopefully recedes. I hope that we also continue to celebrate and support people who have been in this field for a long time and not just people who are recently getting into it, who may have more history as a researcher, or more status or more resources. We support people who have been doing the work for a long time, and probably have the best eye towards actual interventions in disparities and not just cataloging them. So, again I hope that this represents the beginning of conversation and a movement within medical literature to really prioritize disparities as central to all of our research and not just a side project practiced by a few.
Thom: Thank you, Dr. Fayanju - Dr. Newman, what have your observations been about the pandemic and these disparities and how we now are looking at these things so differently.
Dr. Newman: Yeah, thanks Thom. So being here in New York, and I having lived through the pandemic, in the first big epicenter in this country, this conversation is incredibly meaningful to me personally and to my metropolitan New York, patient population.
In terms of the pandemic, covid, and disparities, the story isn’t finished yet. We have a lot said that we still need to learn.
I totally agree with Lola there, this is very important moment in time, where we do want to take advantage of the fact that people are listening and hearing with heightened equity to messages about disparities and systemic racism in the way systemic racism affects healthcare and cancer outcomes, we would like to address this.
In terms of how the pandemic has specific affected breast cancer, this is where things are evolving. It is true as she that we have all been very concerned about the pandemic hiatus. We had to shut down all of our screening mammography, our programs for several months during this pandemic – is is going to have an adverse on breast cancer scan distribution for all women, and since, black African Americans are disproportionately affected by healthcare access barriers that it will aggravate disparities, but we are just now starting to see the affects.
After we emerge from the hiatus, however all of our healthcare systems- I am speaking specifically for metropolitan New York now, we really worked very hard at promoting messages to get women to come back in for their mammography screening. So those promotion messages were very loud, and I think that they were heard profusely by our entire patient population. And so, interestingly we actually have seen some mitigation of the breast cancer disparities in the first several months after the hiatus- I think that’s largely because of the healthcare community working so hard to get all women back in for screening.
But I worry that things are going to change and revert as more time passes. The NCI projects as a consequence of the Covid shutdown and the impact on research, on screening, that there will be an excess 10,000 deaths from breast cancer and colorectal cancer by the year 2030, because African Americans have been hit harder by the recession, that means more blacks have lost employment based insurance and there are going to be greater needs for Medicaid, and I worry that too many black African Americans are not yet into resuming their health care and that we are still yet to see the effects of more advanced stage on those women as they return to health care later and start presenting with more advanced stages in the next several months.
Thom: Those excess deaths due to other causes is one of the long-term issues about the covid pandemic that I think we will be reckoning with for years to come. Thank you for bringing it up, Dr. Newman, that’s a valid point. Dr. Fayanju, you wanted to add something to this as well.
Dr. Fayanju: Something else to be aware of is that not only screening has stopped for much of the first part of the pandemic roughly March through early June in many parts of the country, through the recommendations of r professional society, including Society of Breast Imaging and the American Society of breast surgeons. In addition, we changed the way that we treated breast cancer for some time. So, because we were not - were still learning what the level of contagion was, and the best ways to mitigate exposure, many women who had early-stage disease would typically have had surgery first or recommended to instead receive some type of medication to treat their breast cancer, they received either a pill for endocrine therapy, to block hormones from acting on the breast cancer, or some of them missed out on chemo therapy, the women for whom the option for surgery first would have originally been available.
And one thing we are not yet sure of, is how many of those women were redirected back to standard care, once the acute risk of Covid 19 exposure went away. That is unclear.
We still don’t know whether we were doing the right thing in the long term by giving some of these women new adjuvant endocrine therapy or new adjuvant chemotherapy, who could have had surgery first that might have been directed what type of adjuvant or post operative medical therapy they should have received. So, one of the things I am worried about and interested in studying is the return to the standard of care.
How much has the Covid pandemic forever shaped the way that we treat breast cancer? Have we gained opportunities? Have we learned some things about people for whom options for treatment now are available which we weren’t originally using, for example new adjuvant endocrine therapy is used much more in Europe than in the US. That’s an opportunity that we can take advantage of. So, I would say that in adjustment to the effect that Covid 19 had on screening, I would be interested in seeing the long-term effects that Covid has had on provisional guideline care, or whether the guidelines actually changed in response to the results we see in the wake of all these changes.
Thom: We have a question in chat from Christine on the subject of genetic testing. This is an important area, not only for prevention and early detection but also precision medicine options for treating. I want to direct this to Dr. Johnson. Christine writes, what are the recommendations for who gets genetic testing? What changes can/ should be made for genetic testing recommendations for black women that could address some of the systemic bias? What are your thoughts on that Dr. Johnson?
Dr. Johnson: Thank you. First of all, I want to make a point about the last question. The whole issue of Covid impacting women in screening is that when we look at the work force, women have been impacted tremendously and so it will take several decades for women to recover but we look forward to them being gainfully employed, insured in order for us to address the screening mammography rates.
When it comes to genetic testing there are several guidelines. The guidelines are important when we act on it, but what is most important is the entry point. So, most women are referred for genetic testing based on their family history. And so family history, when does that come about? That comes about when a woman sees their primary care physician. Whether it be internal medicine physician, or more than likely their OB-GYN physician. But just having family history documented, their history and physicals, is just not enough. And so when we look at the entry point, that’s where we need a statement by the AMA, to state that women who are at most risk of getting breast cancer are particularly women who have their first three relatives who are screened more frequently or are referred for genetic testing if needed, and so for black women we see this all the time, those of us who treat black women, is that they present with a history of their family members being diagnosed at a much younger age, and here they are present with a diagnosis of breast cancer. In 2021, this should not happen, and so we do need specific guidelines to be changed I think for all women – the entry point should change as well, and with that we hope to get our women screened accordingly as well as having that conversation with them if they are at risk for breast cancer – what preventive measures are available to them. We know about mastectomy’s being performed, but we know mastectomies now being performed are different with different options. There is chemo prevention available as well as increase in screening that should be done, as well as when any woman is diagnosed with breast cancer, we really should work aggressively in getting their family members, particularly immediate family members tested – so that we don’t continue this spiral process.
Thom: That’s an interesting point Dr. Johnson that advising a patient newly diagnosed to alert their families. I don’t know if that’s something that’s typically talked about or if that’s a newer idea of make sure that the public awareness is built that way. Is that something that you're taking on with patients that you see and what’s the reaction to that?
Dr. Johnson: We definitely address it, Dr. Pal she may want to comment on this – but genetic counsellors they often recommend to the patients – we have a known genetic mutation to inform their family members. They're given brochures and things of that nature but what I feel that we need is a database that we act on. So, we take a lot of family history but as I stated earlier, we must act on that family history.
Thom: More communication certainly helps everybody with this doesn’t it – Dr. Pal you wanted to add something to this?
Dr. Pal: Yeah so, I completely agree with what Dr. Johnson just said and really what she was saying about the family history, it is in the USPSTF most recent guidelines for BrCA counselling and testing where we do need primary care doctors to be taking the family history and referring appropriately.
The other thing is – you know, when we’re talking about family insuring, what we also know as a disparity based on the literature is that there is less sharing that’s going on among black women and we don’t fully understand it, but we need to do better there as well and when we give them a letter – I'm not convinced that just giving them a letter and sending them on their way with any women is enough – just because a woman understands what you have told them doesn’t mean that they’re going to be able to explain it to their family members and get their family members to the point of acting. So, I think there are some systemic issues and I'm not talking about systemic racism but systemic issues to get people into genetic counselling and testing that we need to address, and I think there are opportunities for automation of certain components to educate patients to do decision support, to offer phone counselling.
I'm a firm believer in – we should be meeting patients where they are, and there are studies now that suggests having a patient navigator may actually help us get patients to the care that they need. That’s no different from genetic counselling and testing right- so that’s where some women may be enough – like you may empower them enough by family sharing letter – others doing an automated video might be enough, for others we may have to do pretest genetic counselling or enlist the help of a navigator and again, I think these types of issues require broad change across our health system, because if we’re talking navigator – who is going to pay for it, but again if we choose to pay for it, we could actually mitigate deaths, we could improve outcomes, we could save the healthcare system money potentially – by catching cancers earlier, preventing them all together. So, I think there are many issues here that really bare some thought, but I think it goes for a lot of these things that we’re talking about. We have to meet people where they are, we can’t just assume everyone needs the same level of service to have the same outcome
Thom: We have one more question in the chat, I think we have just time enough for some brief answer to that – how pivotal have patient navigators been and if there are solution focused innovations, where/who is doing that work. Dr. Pal you mentioned healthcare navigators, what are your thoughts about that?
Dr. Pal: I think navigators in breast cancer have been shown to work, I think there is national data that’s been published, I think the issue is certain cancer centers have robust navigator programs, others don’t – so there is no standardized system for who gets a navigator and who doesn’t and I think part of that is – I hate to say it this way but billing matters – like billable services. So, if something is paid for by the healthcare service or health insurance or someone is paying for it, then there is more of a chance for it to get done, whereas navigators’ kind of fall in the middle ground where – yes, we know they're a benefit across many different service lines, but everyone doesn’t have the same access to navigators. Every health system doesn’t have the same degree of navigator personnel.
Thom: Dr. Johnson any thoughts on navigators and any other final thoughts to share?
Dr. Johnson: Navigation has been proven to be successful – the issue in the African American population is the lack of navigators, who are very familiar with the ethnic group and so when we look at the number of women of color who are navigators, they are more populous in major cities, but it still remains an issue.
Just talking about cancer in the African American community is a dicey conversation and particularly here in Atlanta- we have unfortunately some of the highest death rates in the country, so that’s why this is very important to me.
So, navigation has been proven to be successful but as I stated earlier that navigation is important, but we must get to these women before they are diagnosed, those who are at high risk for breast cancer. As I said earlier – acting on the data, its time- we have enough data, we just need to have some action items that we can put forth.
Thom: Dr. Newman any thoughts you want to share about genetic testing or healthcare navigators as we wrap up?
Dr. Newman: I just wanted to acknowledge my wonderful surgical colleagues and the American Society of Breast Surgeons actually recommends that all surgeons become familiar with pre-test counselling and offer genetic testing to each of their newly diagnosed breast cancer patients and this widespread universal testing will be a definite big step in the right direction to mitigating the disparities that we see in testing utilization between blacks and whites.
Thom: Thank you Dr. Newman, there is one final question from Katie Gray about internal review boards and equitable representation and she asked for responses by email, so panelists ask you to take a quick look at Katie Grays questionnaire and just want to alert everyone that we will have a recording available of todays session and we’ll share that with everyone who registered and we’ll also get a transcript together of that and share that with you, likely early tomorrow morning, and so any media on the call are welcome to use any of the comments today and to follow up with the panelists to ask further questions.
Sally who is the media relations person at the American College of Surgeons has chatted to everyone, feel free to email her at that email address for follow up and further questions and we’ll share that information again with the media who registered when we share the recording and the transcript for today’s panel.
With that I’d like to bring things to a close and thank all of our panelists. Thank you so much for joining us and bringing awareness to this very important issue and we look forward to hearing from media what questions you have and what wonderful, wonderful reporting you do on this subject.
Stay safe, stay healthy and good luck.