Black Family Bladder Cancer Awareness

Dr. Sam Washington and Dr. Heather Honoré Goltz

You can read the entire Black Family Bladder Cancer Awareness webinar transcript at the bottom of this page.

Year: 2021

Part 1: How Bladder Cancer Affects Black Patients

Video (8 min) | Transcript (PDF)

Part 2: How Social and Environmental Factors Affects Black Patients

Video (30 min) | Transcript (PDF)

Part 3: Question and Answer for Black Family Bladder Cancer Awareness

Video (19 min) | Transcript (PDF)

Full Transcript

Stephanie Chisolm: Most of you know me, but my name is Stephanie Chisolm and I’m the director of education and research at BCAN. And in recognition of the FDA’s inaugural National Black Family Cancer Awareness Week, we’re really delighted to welcome urologist and researcher, Dr. Samuel Washington and oncology social worker and researcher, Dr. Heather Honoré Goltz for a multidisciplinary discussion about the biological and psychosocial impact of race on bladder cancer incidents and survival during the Black Family Bladder Cancer Awareness webinar.

Today’s Black Family Bladder Cancer Awareness Webinar is going to be a little bit different, after hearing from our experts, we will invite you to turn on your voice and your video and really share your thoughts and experience, which really will help us to determine what BCAN can be doing to help fill some of the gaps that I think we’re going to identify in today’s program.

So Dr. Washington and Dr. Goltz, it’s a pleasure to have you here. If all the participants will join me in turning off their videos, we’re going to turn it over to Dr. Washington first.

Dr. Sam Washington: Hi, everyone. Thanks for having me. I’ll start with just epidemiology and a background in statistics related to bladder cancer, and its relation to Black bladder cancer patients. I think all of us are familiar with the fact that bladder cancer remains a major contributor to cancer-related morbidity and mortality throughout the United States. It’s largely seen in older individuals over the age of 50. Recent estimates for 2021 report over 83,000 new cases will be diagnosed this year.

Now, the majority of those in men, but nearly 20,000 diagnosed in women as well. And there will be a roughly 17,000 estimated cancer deaths related to bladder cancer in the United States with this or similar proportional breakdown across those. But what we don’t know is how there are differences by race in terms of the treatment and things like survival related to bladder cancer.

Now, rates overall we see are lower for Black men and Black women relative to White counterparts. Here’s just a little table breaking down the incidents per 100,000 persons both by incidents, death, race, and gender. We see overall that death rates differ by both of these factors, race and gender. We see higher rates of death for female Black bladder cancer patients compared to White counterparts and lower rates of death for male Black bladder cancer patients compared to White counterparts.

Now, these disparities are partially attributable to differences in stage of diagnosis. Pulling data from the American Cancer Society, cancer statistics breakdown, we see that patients who are self-represented Black bladder cancer patients may present with worse stage of disease and may have worse survival at five years compared to White counterparts and compared to all other races.

We know that that’s not the entire story. We know that stage or presentation alone does not contribute to the differences in survival that we may be seeing overall. Some of that’s related to access to care, and then specifically the type of care that they’re receiving. When I mention this, I’m talking mostly as a guideline-based therapy or guideline concordant care, or as a non-guideline concordant care. So one question that we have from this is, is the effect of disparities and guidelines-based treatment, GBT impacting outcomes both within and across racial groups?

Now, one similar study that we did to look at this was using National Cancer Database to look at and assess how disparities in guidelines-based treatment mediate racial disparities and overall survival for older adults with bladder cancer. So this was really looking at an interaction or a relationship between race and the type of treatment received across multiple racial groups.

Now, again, using National Cancer Database, we looked at data both at an individual level, but then also clustered to look at their regional differences within a facility attributing to these differences as well. We saw in this cohort of over 54,000 individuals locally advanced muscle-invasive bladder cancer, 90% were White, 7% identified as Black bladder cancer patients, 3% Latino. Most of them had muscle-invasive disease with a little or no nodal involvement and had the most common type of bladder cancer pathology, urothelial carcinoma. The majority were treated at either an academic institution or comprehensive cancer center, but only half received guidelines-based therapy.

Now, compared to those that did not, those that did receive guidelines-based treatment were typically younger, White, diagnosed with urothelial carcinoma compared to a variant, privately insured or treated at an academic institution.

Now we see when we look at the treatment received, guideline-based or not, and the groups are three here, Latino, White, and Black bladder cancer patients, we see multiple lines, but the long and short of this is that overall people who received guidelines-based treatment had a greater survival benefit than those that did not, which is not surprising. But what we did see was that even across these groups, differences in survival both across groups based on treatment and also within groups based on treatment.

So if we were to look at this graph and compare Black bladder cancer patients who received guidelines-based therapy to those that did not, we see that those that did had a greater survival outcome up to 10 years out from diagnosis. Similar patterns we’re seen with both White and Latino patients. Interestingly enough, we found that the survival benefit or survival at up to 10 years after diagnosis for Black patients who did receive guidelines-based treatment was similar to those who are Latino who did not receive guidelines-based treatment.

Interesting finding, unclear what to make of it or explanations for based on this dataset. But it’s something that requires further examination, particularly because these are groups that are often under studied in clinical trials, as well as most of our clinical research.

Now, if we look at the risk of death by race and their receipt of treatment, again, similar to the graph, we see that Black individuals continue to have a higher risk of death relative to their White counterparts, as well as Latino counterparts. We saw when we compare these to other groups, it was near equivalent when you included guidelines-based treatment. Meaning that treatment alone reduced the disparity between White and Latino counterparts.

But we see that the receipt of guidelines-based treatment did not completely remove the disparity for Black bladder cancer patients compared to other counterparts. And similarly here, this is where we see, even though Black bladder cancer patients are receiving guidelines-based treatment, their survival is near similar or equivalent to those who are Latino who did not receive guidelines-based treatment.

At the end of this day, what this tells us overall is that not just race as a social construct is impacting survival for Black bladder cancer patients, but also the type of treatment received is impacting survival as well. So this really lends itself well to a focus on self-advocacy and pushing for those patients who have concerns about the type of treatment that they’re receiving to ask more questions and insist that the care they receive be based on evidence and guidelines

Now, with that, I’d like to transition over to Dr. Goltz.

Dr. Heather Honoré Goltz: Okay. Thank you very much Dr. Washington for providing the background and some of the information that really lends itself well into the beginning of my portion of the talk, which is to help explain in terms of social determinants of health, how some of these disparities come about, how they may lead to differences in symptomology among bladder cancer patients and what we might be able to do about that.

I’ll start with talking a bit about this concept called social determinants of health. I appreciate that. social determinants of health are really those aspects of life in our environment where we live, work, play, worship, grow, we were born, we age, we grow old and die that really determined how we age in place the quality of our health, the quality of life.

You can see from this slide that contrary to popular belief, personal behavior is only one component of health outcomes and quality of those outcomes. You see that roughly 20% of these social determinants of health are related to health care, access to health quality of care, but socioeconomic status and the physical environment in which we live, work, learn, play, et cetera, those combined with the physical environment take up 50%. They are responsible for 50% roughly of our health outcomes.

This is really an important thing to note in contrast with what we think of as personal or individual health behaviors. Next slide, please.

Now, I love this graph because this takes that previous slide and really helps us understand more so than ever before in our history, what it means to be healthy and what influences our health in general. You notice that social inequities, racism, class, all of these pieces really feed into institutional inequities and institutional inequities, sometimes you may hear them called structural racism, actually influence health as well and our living conditions.

So when you take a child, a young Black child, where they live, their socioeconomic status of their family, their access to education, all of these things influence eventually what kinds of work opportunities they may have. Work influences what kinds of insurances we may be eligible for or access or not, and how that then can play into what kinds of health care and the quality thereof that we can access.

Our personal behaviors then are influenced by where we live both as a child and as we grow and mature and age. And that then has an impact, especially when we’re diagnosed with bladder cancer. Well, let me back up and say, it has a very impact on when and how we’re diagnosed with bladder cancer, and then how we access quality guidelines-based treatments that then can really impact our morbidity, which is our changes in physical status and potential injuries and side effects, and then our mortality, which is our length of time that we made live post-diagnosis. Next slide.

I want to take a moment just to talk about gene by environment interactions. We did pre-webinar have a question about genetics. Broadly considered, bladder cancer is not considered a hereditary disease. Only less than 10% of bladder cancers that we are aware of are linked to some type of familial genetic link. However, going back to those social determinants of health, we begin to see how our genetic background or genotype can interact with the environment that we’re born into, that we’re raised and live our lives and age in.

And that can also influence how our genetics, our genotype are expressed, which we also refer to as phenotype. We can see how things like radiation precipitation in the case of bladder cancer, exposure to arsenic or agent orange, agent orange recently being acknowledged. Our diet, our physical activity, our proximity to toxic waste or Superfund sites can influence our genetics and whether we will express the type of genotype that might lead to an eventual bladder cancer diagnosis.

So while not genetic, as in hereditary from our family line, we can accumulate mutations from our environment that may lead to a bladder cancer diagnosis. This is why things such as our diet, and diets that may be higher in fat or carbs, diets that make us overweight or perhaps obese, sedentary lifestyles that on one level may seem like personal choices and behaviors. But if you live in an environment where there are no sidewalks or there’s heavy environmental pollution that might make it difficult to breathe, are you going to go outside? Are you going to exercise? Perhaps not.

Cigarette smoking, tobacco usage also can play into manifestations of bladder cancer. Environmental racism, the land that is closer to Superfund sites and manufacturing and chemical and petroleum manufacturing plants is very cheap. And so these plants are often placed in closer proximity to areas where low and limited income families live. Often these families are Black families. I see this a lot back home in Southern Louisiana.

So all of these things feed into whether we are exposed from cradle to grave with potential pollutants and other factors that may lead to individual cancer diagnosis, and specifically, perhaps a bladder cancer diagnosis. Other social determinants, with our socioeconomic status, again, what can we access from work? Do we have jobs that are eligible for benefits? These can influence whether we have access to quality health care guidelines-based treatments, et cetera. Next slide please.

I want to talk a little bit about some things we found over time in terms of once people are diagnosed with bladder cancer. And we’ve done some studies with non-muscle invasive bladder cancer and also muscle-invasive bladder cancer related to symptom management quality of life. And what we found is that often what one would expect in urology settings and with urology patients, which is those patients who are diagnosed with muscle-invasive bladder cancer in terms of urinary symptoms often report at a higher level that they are quite a bit or very much impacted by especially frequency of your urination at night, the feelings of urgency, sleep interruptions, feelings of isolation, because of need to frequently urinate or empty pouches or et cetera. Leakage from pouches or even perhaps neobladder. Next slide.

What we’ll see in terms of sexual functioning from some of our participants in the past, however, is that non-muscle invasive bladder cancer patients, at least in the studies that we’ve performed are actually reporting better functioning, those who have muscle-invasive bladder cancer reporting worse functioning. So again, while we think of non-muscle invasive bladder cancer often as something where folks may have fewer symptoms and fewer symptoms to manage, they’re still being impacted.

Our muscle-invasive bladder cancer patients however, folks we typically would expect to have issues with symptomology, symptom management are very much showing through our studies that yes, they are very much struggling with managing those symptoms. Sexual functioning being right up there with negative changes in urinary functioning.

As you can see from this slide, erectile dysfunction, folks with muscle-invasive bladder cancer reporting worse functioning in terms of ejaculation, women whether non-muscle invasive or muscle-invasive type are reporting some issues in terms of vaginal dryness, issues with lubrication. Folks are reporting discomfort during sex. This contamination component to the right is very interesting, and I say that in a scientific way. I think my grandmother would have said, “No, this is not a good thing,” and I agree with her.

But we are having folks who have had BCG and other treatments who are reporting issues of concern with potential contamination of the modified TB bacterium from the BCG. These are reported concerns about contaminating their partners via sex, which then inhibits their desire to have sex. And I certainly can speak more to that during the Q&A if folks have questions. But this is definitely something that is a barrier or a deterrent to folks after they complete BCG treatment, reengaging in sexual behavior, sexual activity. Next side.

When we interviewed black bladder cancer patients on studies and asked men and women about their various symptoms, how they manage those symptoms, we did begin to see differences in how women responded versus men in interviews. This wasn’t quantitative or survey-based, these were based on just talking through questions in a qualitative study. But women really talked about the impact of accidental diagnosis.

This is what we determined or at least what we got from them, where they spoke heavily about sometimes years, sometimes many rounds of being diagnosed with a urinary tract infection or when they reported hematuria, bleeding. They were told that that intermittent bleeding was linked to menopause or sometimes even advanced urinary tract infections and treated under the treatment of a gynecologist or a primary care physician without a referral to a urologist, which delayed their treatment and delayed… Excuse me, delayed their diagnosis and thus their treatment. And so they reported really suffering.

And when they were treated, this new normal that they’ve reported in terms of their bodies, in terms of their lives, this new normal was very difficult for younger women in particular as opposed to older women who might have gone through menopause fully at the time that they may have had surgical treatment, for instance.

So they talked at length about the impact, differences in their activities of daily living, the struggles they had with caregiving, especially with pain, especially with changes in how they perceive their bodies in terms of body image, their willingness to engage in intimate or sexual activities. So there really was at least a sense among the women with the types of treatments, particularly with surgeries they had post-diagnosis that there was a change in their physical functioning. Some mentioned changes in their mobility and certainly that other symptoms such as pain, changes in sexual functioning, urinary function, et cetera. Next slide.

And all of these changes, whether we’re talking males or females really resulted in what we call psychological distress. The coping, the pivoting, however you’d like to call it in the new normal was very difficult for a lot of people, and particularly among those who had muscle-invasive bladder cancer. But I’d like to emphasize that just because someone was diagnosed with non-muscle invasive bladder cancer, that didn’t mean that they felt they were home free.

A lot of folks, particularly those with muscle-invasive, but quite a number who were diagnosed with non-muscle invasive bladder cancer had fears of recurrence. And we know with bladder cancer in particular, it is a highly recurrent disease. I’ve heard estimates of anywhere from 50 to 90%. And so this is a valid fear that is causing distress among folks who’ve been diagnosed and even been treated.

This idea of a future perspective, there were impacts on people’s ability to imagine or envision a future post-diagnosis and treatment that really impacted them in terms of their feelings, of emotional, psychological wellbeing. That was whether you had muscle-invasive or non-muscle invasive. You can see that while it wasn’t as disruptive or distressful as say the fear of recurrence, it was still there for a pretty large subset of folks.

And then this illness intrusiveness is really when you’re distressed, when you’re concerned, when you’re psychologically ruminating and you’re struggling with coping with having been diagnosed and perhaps treated, the way that the illness really intrudes in your life and disrupts your habits and your hobbies and your interactions with coworkers or relatives or friends, you can see again with muscle-invasive bladder cancer, it is an incredibly distressful disruptive disease.

But non-muscle invasive folks are also reporting intrusiveness and distress from the disease. Now, that is quite significant. Next slide.

I put this slide here because I think this is interesting and it points, I think, more so to a failure on the part of practitioners, and I’m a practitioner too, so I don’t hold myself exempt from that. But a failing on our part to offer what we call psychosocial or supportive care services for bladder cancer patients. When we’ve queried a study done several years ago by Cheryl Lee who’s on BCAN board show that we offered support groups at a higher level for prostate cancer patients than we did for bladder cancer patients.

Luckily, we have BCAN and BCAN helps connect folks with groups. But in terms of practitioners and organizations, it shows that we need to do a better job of offering this supportive care services, this psychosocial oncology care, so that as people experience distress and issues with coping and quality of life, we have something to offer them. If you build it, I really believe people will come. Next slide.

I would be remiss in having this presentation with talking just a little bit about COVID. There have been studies broadly with cancer. We just published a paper not too long ago broadly about cancer, but we’re certainly noticing this with bladder cancer too, where due to changes in clinic and hospital operating procedures, due to public health efforts related to distancing and limiting the number of people in spaces, the ways we have to clean equipment and so on, we are seeing a greater likelihood of delays in people’s screening, undergoing surveillance and possibly treatment.

So I want to echo something that my colleague, Dr. Washington said earlier in this webinar, which is self-advocacy is a must, especially now. The pandemic’s not over, certainly vaccination rates are going up. And I will say that the latest figures in terms of Black people in America, we started the year with at least with surveys showing as little as 42% of Black people saying that they might either vaccinate immediately when it became available to them or vaccinate at some point. Those figures have gone much higher over the last few months, several months, really, as vaccine has become more widely available, people are having fewer issues accessing.

But we still are working through as a country, as a people through this pandemic, clinics and hospitals are still taking a lot of precautions, necessarily so. So if you or a loved one is really needing surveillance, you’re seeing perhaps delays in getting scheduling. If there are treatments that you’re experiencing delays, ask often, question mightily. This is the very space where you must advocate for yourself, caregivers, you must advocate for your loved ones, it’s a must right now. And that was pre pandemic too, but especially right now, self-advocacy is essential to getting the care that you and your loved ones need. Next slide.

We know from research for many years that bladder cancer treatment and surveillance is incredibly expensive. It’s the most expensive cancer per patient. In one study, over 24% of patients endorsed paying more for cancer care than they can afford. I’m a social worker, I know down here in Texas that people routinely take out mortgages or loans to get their cancer care. And so, bladder cancer can be very toxic in terms of one’s finances, one’s prospects of retiring, one’s financial future and that of the family.

And really that brings up issues of, well, if you have insurance, do you have high deductibles? Do you have copays? Can you afford the copays? Financially, that can really impact family planning, your obligations, surveillance and treatment. If you’re still in the workforce and people are working longer, especially since 2007, 2008, the Great Recession that happened about a decade ago, people are still trending to working longer.

So in terms of treatment and surveillance, the impact on ability to take time off from work, paid time, is it available? Can you telecommute to work or do you have to work in-person? All of these things come into play, particularly with bladder cancer. Next slide.

I’m going to switch tacks for just a moment and talk about general health and wellness. BCAN sponsored a study that generated a survivorship care plan several years ago. This is actually a slide that talks about general health and wellness strategies that as folks who’ve been diagnosed or who are actively undergoing treatment or in the survivorship period really need to think about, talk with physicians about, and perhaps look at ways to incorporate this into your health care or your general personal care. Looking at your diet, reducing fat intake, reducing carb intake, unless it’s introducing fresh fruits and vegetables, things like that into the diet.

Looking at your bone density and making sure that you have care that can help with a proper bone density, not forgetting your routine vaccinations like flu shots and MMR and tetanus, people still get tetanus. Still having your breast cancer screenings, your mammography, or if you’re eligible and it’s warranted, still having your pap smears. Interacting in terms of physical activity, getting up, getting mobile, working and keeping your heart healthy and your lungs healthy.

All of these things, even having regular routine dental care once or twice a year. These are all ways that can keep you healthy through bladder cancer, but also can help with early detection of potential other cancers or other potentially preventable diseases. Next slide.

Right here, I’ll just speed through the rest of the slides. These slides should be available to everyone, so I wanted to add extras so that people could have resources and referrals, points to ponder. Again, self-advocate, your urologists can make referrals to a number of other specialties, such as wound, ostomy, continence nurses, oncology workers, sex therapists, dieticians. You may request those referrals as well and should. Next slide.

Don’t forget that there are community providers where you might be able to get housing or utility assistance, wigs, prosthetics, even pet care and supplies. I was very happy when our local Meals on Wheels program did a pet Meals on Wheels program. Because we have a lot of older adults on fixed incomes who have pets, and that program can help with pet care, so you have companionship and limiting isolation.

There are prescription assistance programs, oncology social workers are throughout the country and I have a resource where you can meet perhaps with oncology social workers and get some of these referrals or information on some of these resources. Next slide.

Here are a few resources if you find yourself working after a cancer diagnosis, Triage Cancer, Cancer and Careers, These are wonderful resources, and some of them have financial assistance. So if you find that you may need copay assistance or so on, great resources. Next slide.

Here’s some resources related to fertility and sexuality, a little plug for AASECT in terms of finding certified sex therapist or sexuality counselors who can help you in terms of helping with sexual recovery. Next slide.

And then I put some additional resources here, particularly the WOCN Society, the Oncology Social Work Association. These are all various professional societies or foundations that may have educational or even sometimes financial resources that may come in handy.

Stephanie Chisolm: Thank you so much, Dr. Goltz and Dr. Washington. I think this is a really great discussion on Black family bladder cancer awareness and I invite people to turn on their videos now at this point if you’d like to. If you could keep your audio off, unless you have a specific question, but there are a couple of questions that have been submitted. Again, I welcome everybody to participate and to share your experiences.

This has been really enlightening in that I think we have seen some gaps, some resources that maybe people don’t know from the psychosocial and social determinants of health, as well as from our general understanding. I would like to just open it up for Dr. Goltz and Dr. Washington, as you were putting this together, was there anything in particular that surprised you?

I know it’s a trick question. Or is there something in particular that really pains you because you knew it and we know this and why is it still happening this way? What is it that struck you like that? Maybe didn’t surprise you because you know this, but what are you surprised hasn’t changed?

Dr. Goltz, why don’t you start?

Dr. Heather Honoré Goltz: I’m always pained, that’s a good word for it. I’m always pained. I came into bladder cancer research in roughly 2008, so we’re well over a decade later and the stats really aren’t changing for Black people in America, they really aren’t. I literally, if I could talk to my 2008 self, I’d be saying the same thing to her that I’m saying to you now, and that’s both surprising, but unsurprising. We need to do more.

Dr. Sam Washington: I think in researching and looking at this and other studies, we have a clear sense of what we don’t know in that we use cancer registry data, which gives us a broad overview of what’s going on. And we can try to drill things down to the facility, but when it comes to specifics, how long it takes for someone to get diagnosed after a hematuria evaluation, we know broad ideas that there are differences there, but it’s hard for us to drill down the drivers.

And some of that’s just due to the type of data that’s available and the type of data that’s available on a broad scale. So I could say drivers are things that may be impacting care locally from an anecdotal standpoint or a single institutional standpoint. But we don’t have that granular data from multiple centers across the country showing a clear breakdown of that pipeline from diagnosis to treatment to survival for each facility. And that’s where we need to get to, because that’s really when people ask, “Well, how do you intervene to change some of these differences, especially for black bladder cancer patients?”

You need to know where the potholes are and broadly we have a sense, but we don’t know specifics. And that’s the same across multiple diseases where we see similar disparities and we’ve described them quite well, but not all the potholes. So intervention becomes that much harder.

Stephanie Chisolm: I did want to just pop up a slide really quick because I felt like this slide that you showed, Dr. Washington, where you were really working at guidelines-based treatment and the survival benefit. If it’s following guidelines, what are your thoughts on, should we be looking at specific guidelines, changes to the guidelines? What’s going on that you think that the Black bladder cancer patients don’t do as well as Latinos who aren’t even getting guidelines-based therapy? What is going on there and where do we need to focus a little bit in the future?

Dr. Sam Washington: I think this analysis mirrors a lot of what we know, which is that when we look only at our clinical data and broad proxies for socioeconomic status and social determinants of health being access to quality care, access to timely care, and then all of the other social factors that are not included on our cancer registries, it tells us that there’s something else going on. And I think that’s the highlight from that slide. And I think it really takes more nuanced, drilled down, mixed methods type studies to really get at that.

But I think also understanding that what happens at say San Francisco VA may be different than what happens in Baylor or UCSF for that matter. So some of these specific factors to each institution are going to be the things that make up that difference, and that’s just the part that we don’t have a clear sense of yet.

Dr. Heather Honoré Goltz: Okay. To piggyback on that, the slide where it’s got that figure about what’s happening in the community and those social determinants of health, these academic cancer centers and hospitals don’t occur in isolation. So a lot of those social determinants that happen in the area around those hospitals can help us in terms of explaining what’s going perhaps with those disparities in access or the outcomes from guidelines-based treatment versus non. We’ve described bladder cancer quite a lot.

I echo Dr. Washington’s sentiment that it’s time for intervention, but we really need to be looking at what is happening in Black lives within communities that forms those potholes or how Black America intersects with those potholes that may prevent them from timely acquisition and access to care of guidelines-based treatment.

Stephanie Chisolm: Jim, you just raise your hand. Do you have an additional question?

Jim: Thank you so much for this, and I apologize, I’m in my car. But I wanted to ask doctors, in your research and in your studies, have you had anyone, and I do have more information on this either way you reply, address the implicit biases that exist amongst doctors? And all of us are born with biases, so I’m not picking on anyone or anything like that, but I have some real case information here from Physician’s Weekly and from the National Academy of Sciences where they are studying this and looking at it.

Because they have pointed out in the Physician’s Weekly where African American, Black patients are going into emergency rooms and are less likely to receive painkillers as someone who isn’t Black who goes in. So I have to believe that someone coming in with bladder cancer who is of color may get treated differently than a White person coming in. So could you speak to that please?

Dr. Sam Washington: I guess I can start as a clinician. I definitely acknowledge that there are a lot of studies looking at this, looking at pain management and long bones fractures, cardiac or angio catheterization in patients with cardiac symptoms. Looking at maternal mortality rates and looking at these things that often we broadly try to attribute to the individual, but really are more attributed to the health system in which I consider myself part of that system.

So I think that’s definitely something that is… the impact of that is misattributed to the patient when it should be explored on the health system and provider side. Now, I think the way to get to that is complicated, and some of that we can clearly see just with discussions of structural institutional racism within our country broadly, but also that is in our own backyard. Now you’re talking about other urologists and implicit biases, and that takes a level of, I think, insight and comfort with uncomfortable situations.

And I’m not sure we are there yet as a group, but we are working towards, because it’s a definite impact. And I think that’s a part of the thing that you can’t measure in a cancer registry that always gets missed, but should be discussed. And it shouldn’t be the last sentence of a discussion section of a paper, it should be the whole paper, if that makes sense. But the best way to get to that, I’m not sure yet.

Dr. Heather Honoré Goltz: We have a lot of information not just from Black and Hispanic and LGBTQIA+ populations about how they interact with medical and health and allied health providers, and how that leads to medical mistrust, lack of confidence, decisions to forego care in certain institutions. I can tell you that a lot of the institutions that I’m involved in, and of course these conversations happen, are happening all across the country in terms of how do we do cultural and linguistic humility?

Not just competence, but humility training, where providers admit that they are not experts and they need to listen actively to patients and create more of a welcoming open space. But these conversations should not be one-off, they should be ongoing and policy and procedures need to follow these conversations, so that these are safer places for people of color and people of various other identities to be able to enter these spaces.

But we have decades of research that of course says that implicit bias impacts whether people either receive guidelines-based treatment or feel comfortable interacting and accessing care in a lot of settings.

Stephanie Chisolm: Rick, I know you had a couple of questions that you had submitted. Do you want to summarize and maybe get to some key points that you’d like to hear from Dr. Washington or Dr. Goltz?

Rick: Yeah. For Dr. Washington, the guidelines are clearly very troubling. So do we have any granularity on what’s driving the specifics of the guideline problem? If we knew that it was a timing issue or that there was a specific treatment not being chosen, what’s the level of granularity? And maybe there isn’t yet enough granularity and it needs to be studied, but I was curious as to whether or not there was any guidance you could provide on one click down from guidelines.

Dr. Sam Washington: Yeah. I would say that it’s all of them actually. I guess the approach that’s commonly taken, and it’s a way that even I use to wrap my brain around it is, we’ll look at one factor. So we’ll look at just race and control for everything else, or we’ll look for timing of treatment and ignore everything else. So we have clear definitions of someone should get treatment within 90 days of diagnosis and we see outcomes that are worse after, or we’ll say, “Rural patients have this.”

But the issue and the difficulty with that is it’s really not just one factor, it’s factors layered upon other factors. So if you look at guidelines on how to interpret and report healthcare disparities that were put out by a combination of AACR, ASCO, and other groups, it’s really the multi-level interactions between all these that ends up with what we see. So I’d say the long-winded answer is basically… Or I guess the short answer would be we distill everything down to one factor.

But we can’t really do that because then we’re going to miss all the others. So I would say from the question in the chat where it mentioned things like timing, time for cysto, time to chemo, time to cystectomy treatments, all of these things tie into one another, and that gives you the end result that we see. Does that make sense? So I wish it were just timing of diagnosis to treatment, but unfortunately there’s more factors there.

Rick: I had a question for Dr. Goltz on the distress research and whether or not that it had been done for high versus low grade or a little more specificity, one click down from non-muscle invasive and muscle-invasive, kind of before or more stage kind of breakdown.

Dr. Heather Honoré Goltz: That’s a great question. The answer is, not really. We got a little bit more detail from the qualitative components and what we found in just analyzing across those interviews really was, if you had higher grade, you were much more concerned and distressed than if you had lower grade. But that really needs to be followed up with quantitative surveys and really true mixed method studies that would specifically look at that question.

Part of what’s happening is, and Dr. Washington and I have talked about this a lot, is that the field of bladder cancer research started as a very epidemiologic-based field. And that’s how many new cases, how many deaths in the five-year, 10-year survival rates, et cetera. That’s a very epidemiologic type data and sets of questions. Only over the last 10, 15 years have we really begun to ask the questions related to access to care, quality of life, symptom management and so on.

And so, our science within bladder cancer in terms of these types of questions is still in its infancy and the tools that we use as researchers, we’re still growing them. So the skills that it takes, the methodological skill it takes to design studies that can really do those nuanced multi-layer, multi-systems, multi-dimensional studies at one time is really complex and it really takes an interdisciplinary team of researchers to do that work properly.

One of the happiest days of my life as a researcher, NIH just announced that they’re looking at just they’re going to fund these types of studies. They’re doing a call right now to look across systems, across dimensions at that kind of data and begin to be able to help answer just the questions you all are asking today for people of color. And so, a number of us are talking about it, but how to respond to that. But the next three to five years are going to be extremely enlightening in terms of that granular detail, Rick, that you’re talking about.

Rick: So I know what a couple of you are going to be doing after you get off the call!

Stephanie Chisolm: Well, thank you all so much for joining us for our first Black family bladder cancer awareness webinar . We really appreciate your expertise, Dr. Goltz and Dr. Washington.