Addressing disparities in breast cancer care, with Tisha M. Felder, PhD, MSW

Tisha M. Felder, PhD, MSW
Tisha M. Felder, PhD, MSW, is an assistant professor in the College of Nursing at the University of South Carolina. Dr. Felder’s research focuses on two key areas: encouraging breastfeeding among African American women to reduce their risk of getting breast cancer, and creating ways to improve the hormonal therapy experiences of women with breast cancer. Read more.

 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer, Living Beyond Breast Cancer

Jean began her work with LBBC in 1996 when she became the organization’s first executive director; she was named CEO in 2008. Jean brings a lifetime of women’s advocacy experience to her role as CEO. She lives LBBC’s mission everyday by speaking with newly diagnosed women about their needs and gaps in support. Read more.

Jean A. Sachs, MSS, MLSP:

Hi everyone, it’s Jean Sachs, the CEO of Living Beyond Breast Cancer. Today, we are going to talk to Dr. Tisha Felder. She is an assistant professor in the college of nursing at the University of South Carolina and in the cancer prevention and control program at the university’s Arnold School of Public Health.

We are going to talk about health disparities for Black women, and what organizations like Living Beyond Breast Cancer can do to address these. We have all heard the statistic that Black women die at a 40 percent higher rate than white women. And we also know that way too often, Black women are diagnosed at a later stage of disease and face a more aggressive type of breast cancer. We see this pattern in many other serious illnesses, including with COVID-19. Dr. Felder is going to help us understand this and give us some thoughts on things we can do.

Welcome, Dr. Felder.

Tisha M. Felder, PhD, MSW:

Thank you for having me.

Jean A. Sachs, MSS, MLSP:

Thank you so much for joining us.

I know your research focuses on health disparities and promoting greater access to care – things that we care deeply about. When you hear these statistics, what are some of the issues it highlights for you immediately, in terms of delivery of care for Black women, and particularly for Black women who are diagnosed with breast cancer?

Tisha M. Felder, PhD, MSW:

Well, actually, I think a lot of what you said in your introduction are some of the things that I immediately think about.

Much of my work focuses specifically on women who are diagnosed with breast cancer, who are also insured by Medicaid. So when we think about those delays, when we think about those things that create the domino effect of what we end up seeing in terms of later stages of diagnosis and not as many treatment options — it all starts with access. We know that many women who have Medicaid, particularly from the analyses that we've seen in our state, in South Carolina, is that many times women don't get into care until after they've had that breast cancer diagnosis. There's a lot of history leading up to that diagnosis. And again, it just starts that trickle-down effect which unfortunately leads to a lot of the disparities that we see.

I think one of the things that we can take hope in, though, is that we know that when Black women receive the same treatments as white women and other counterparts, they have the same outcomes. So, I think a lot of the issues that we're seeing, beyond the access issues, is just getting equal treatment.

Jean A. Sachs, MSS, MLSP:

That is so important. Getting into care, having access to good doctors, good information, doctors that treat you with respect and treat you the same way they would treat a white woman is so important. What we've been trying to do at Living Beyond Breast Cancer, through our Knowledge is Power: Understanding Black breast cancer program, is find Black women in the medical oncology field to speak and talk because the likelihood of a Black woman finding a Black medical oncologist is pretty slim, right?

Let's also talk about lack of trust with doctors. I know COVID-19, and the whole issue of the vaccine, has really brought this to the fore. It's revisited the Tuskegee experiments, as well as the Henrietta Lacks story, and just understanding why Black people might be hesitant to take the vaccine or get care. So, talk to us about access and trust.

Tisha M. Felder, PhD, MSW:

I think when we talk about both of these issues, we need to begin that conversation by talking about those things more at the systems level instead of at the individual level. When we talk about access, when you look at the experience of Black people in the United States, we have been systematically denied access to many things. Not just in healthcare: denied access to education, denied access to voting, and the list goes on. I feel like once you've kind of had that experience, you're passing down those experiences to your children. And I think what that does is it develops a healthy suspicion.

I think there's a lot of conversation around vaccine hesitancy or the mistrust. But I also think there's an emerging narrative that I am enjoying hearing, that many Black scholars are talking about — such as Dr. Rhea Boyd and Dr. Monica McLemore and many others — where they're reframing the narrative and saying that this is not  the fault of Black people that they may experience some mistrust. Absolutely human, and absolutely normal, if you've experienced systemic issues over time.

I was listening to a webinar earlier this week with a group of scholars from Cornell. And one of the things that they brought up was that, many times, that suspicion that Black people have, has actually kept them alive for many years.  And at the same time, sometimes I think those suspicions actually lead to a lot of the change, the social justice that we see. It's like when people really pinpoint, “Okay, wait a minute, we keep seeing these same outcomes for us across institutions.” [That] allows us to sound the alarm that something needs to be done to address these issues.

And again, I really think that when you look at the data from maybe around December 2020, you could see lower numbers of African-Americans stating that they wanted to get the vaccine, but if you look at where we are now, by and large, we're very similar in terms of desiring the same levels of access as anybody else. What we're seeing is more of a divide or distrust among those based on political parties. So again, I think that when we talk about hesitancy, I think we're really speaking more about the past. And I think that what we're seeing presently is that it really is an issue of access. And unfortunately, I think when we talk about access, it's not on this individual-level thing. I think [when] we think about solutions, we have to think systemically, we have to think within our higher structures as to why those things are happening.

Jean A. Sachs, MSS, MLSP:

That's so helpful. I think remembering the history is so important, but also knowing a lot of this isn't history, this is happening today in terms of Black people being denied access, if we look at what's happening with voting rights in so many states, and so many things.

I have read those studies too, that show that Black populations actually are wanting to get the vaccine and the Black community has done so much to educate, support, it's been such a wonderful community effort, and you're right: It seems to be politics that are more the divide.

So let's go back a little bit, into breast cancer. I know you've done some interesting research into helping improve the chances of Black women taking their full course of anti-estrogen therapy after a diagnosis of early-stage breast cancer. We know that whenever that therapy is a pill and something you can take at home, compliance is always an issue. But what did you learn that was potentially useful in addressing health disparities for Black women who are diagnosed with breast cancer?

Tisha M. Felder, PhD, MSW:

I received a K award from the National Cancer Institute to begin investigating this. When I first started, there really wasn't a lot of documentation on racial differences in the use of anti-estrogen therapies. However, over time, there's been more research in this area and we're seeing that not only are there racial differences, but we're also seeing some intersections with race and socioeconomic factors. Because I'm extremely interested in looking at women who have Medicaid, and we know women who have extreme socioeconomic disadvantage also have higher levels of mortality, when you combine that with race, there is a synergistic effect there.

We've done some qualitative research with healthcare providers, and also with breast cancer survivors, to get everybody's perspective on kind of what's going on when it comes to addressing these issues of adherence. We're actually working on getting these findings prepared for publication, but what's fascinating is that there is some overlap between what providers, as well as survivors, are saying, but there's also some differences. One area of difference that is very fascinating is that many of the providers discussed the need for more mental health support for women diagnosed with breast cancer, and none of the breast cancer survivors brought that up at all. And then I think on the other hand, many of the breast cancer survivors talked about the things that help their hormone therapy. And they talked about the patients that they have with their providers, but when we drill down, there was a very, very brief conversation with their oncologist or a nurse. And that was the bulk of the education that they received.

When we asked them specifically what types of things would you like to see in the future to help with addressing adherence with these therapies, they suggested things like websites. They liked the idea of being paired up with another breast cancer survivor to maybe stay on their therapy. One of the first survivors that I interviewed shared such a fascinating story. One of the things that she shared was that when she was diagnosed, she met another breast cancer survivor and the two of them have kept in touch for years, making sure that the other person is taking their hormone therapy each day.

There's lots of opportunity for us to enhance the experience that many survivors have. We know that side effects is a huge reason why women end up not staying on the course for this therapy. I think the more education, but also the earlier the education, that's going to be something that's going to be helpful. At this stage where we are developing the pieces of the intervention and we're going to be showcasing that to a team of survivors and providers to get their feedback on it, based on the findings that we have from this qualitative work.

The unique approach that we are looking to take is that we really want our work to be multilevel. I think a lot of education has been very one-on-one. There’s a scholar who says, we have such a preoccupation with individual factors. It's like we don't want to take on these larger structures. And some of it, I think it's fair because I do think it's very daunting and overwhelming to think at these higher levels. But I think it's necessary. If we really want to address health disparities, these are not one-on-one issues. These are systemic. When you see constantly the same outcomes, no matter what the institution is like, there's something systematic going on and we've got to figure it out.

So, I think we need more interventions that are going to look beyond just the patient, look in their social support systems, look in their communities, and see if we can better support them, but at the same time, try to address some of those higher-level issues that also contribute to these poor outcomes.

Jean A. Sachs, MSS, MLSP:

We'll be looking forward to seeing what you learn and what other interventions you have. I certainly think that idea of having a friend, a buddy to stay on your hormonal therapy is such a great idea. We know that works with exercise and so many other things. And really understanding why [the therapy is] important, so having that really clarifying conversation with your healthcare provider [to] understand the benefits.

So, Dr. Felder, before we close, I want to make sure we talk for a few minutes about clinical trials. We know that only about 6 percent of participants in cancer clinical trials are Black, and we know how important it is to get diversity into these clinical trials so we can understand the therapies are as effective. I know you have some experience with this too, and some ideas to share.

Tisha M. Felder, PhD, MSW:

Sure. When I first started as a research assistant, when I was working on my doctorate, I had some experience with that, focusing on issues with clinical trials. It was actually called EDICT, standing for eliminating disparities in clinical trials. Unfortunately, we're still seeing some of those same barriers now.

While I think the COVID trials have actually done a better job when you compare it to other diseases, in terms of clinical trials, we still have a long way to go. Some of those common barriers are having lack of information, or the lack of awareness of these trials, many times maybe our providers do not have the same level of information as others, and so we may not have any idea that we're a good candidate for a particular study. There are also issues around study eligibility. Sometimes those criteria actually exclude certain patients. And sometimes some of those exclusion criteria may disproportionately exclude people of color. Another really big issue that seems a bit counterintuitive is cost. There are some routine costs that can be associated with participating in clinical trials. And if you don't have the insurance coverage to cover those costs, you have to pay that out of pocket. That could be a huge barrier for many, many people.

There's been some policies passed recently that should go into effect next year, that will actually allow for Medicaid to cover those routine costs. I'm hoping that we will have an opportunity to see greater diversity because of that level of access that now many people will have. However, I will say, there are very practical issues that are there as well, and that can impact who's able to participate in clinical trials: having to go to some of these large centers, having to park and walk wherever, to be familiar with some of these settings.

Also: the time of day. For some people, if you're working during the normal business hours, maybe there are barriers to you being able to come participate after work, before work. I think some of the things that we see even in healthcare facilities where maybe they have non-traditional hours – things like that can actually help overcome some of those practical barriers that often disproportionately impact people of color.

Jean A. Sachs, MSS, MLSP:

That was what came to my mind immediately, is I think we just discount the amount of extra time the clinical trial adds to your treatment. You know, you're often scanned more often, more blood draws, more times back and forth.

Of course, there's other trials people can participate in, whether they're prevention trials, or quality of life trials, just to get used to that experience of saying, “I want people to study me so that they can learn more.” So sometimes that's a good entry point.

Tisha M. Felder, PhD, MSW:

I think another place where our clinical trials could be enhanced is by involving the community in the development of those trials. I think a lot of times, people are not talking to the right people at the outset of some of these things. And then once there is a therapy or an intervention that's available, then there's a rush to try to get the community involved and to buy into it. And I think we saw some of that with the COVID vaccine.

There wasn't a lot of engagement and conversation early on, of course granted it was a pandemic. But I think at the same time, there should have been some early conversations about the things that happen, particularly for Black Americans — Tuskegee and everything else — that go on on a daily basis, those issues were ongoing during the pandemic. So I think we should have been engaging those conversations around concern for hesitancy much earlier. We have those same issues with the clinical trials design, and I think we need to do a better job of including patient advocates, involving communities that may be close by to where the opportunity for those trials are being held.  I think if we just do a lot more at the beginning stages, we would see much greater diversity at the end.

Jean A. Sachs, MSS, MLSP:

Well, you have raised a number of issues. I do think COVID has had some benefit in loosening some of the regulations around clinical trials. I really do hope that will continue, as well as the option of having televisits, which I know decreases travel. So I keep hoping there's some silver linings.

Well, thank you so much. You have such deep knowledge and we so appreciate that you are devoting your professional career to really helping some of these racial barriers that have been going on for way, way too long. Do you have any final words?

Tisha M. Felder, PhD, MSW:

I just want to thank you all. I know that your organization has been addressing issues for breast cancer for many years, and I'm honored to be invited to share with you today.

Jean A. Sachs, MSS, MLSP:

Well, thank you. And we will absolutely stay in touch. As you learn things, we want to make sure we share them to the wider audience.

I want to thank everyone for tuning in today. Remember Living Beyond Breast Cancer is here all the time. Please visit us at lbbc.org. If you want to connect and have peer support, we have a Breast Cancer Helpline. We also have closed Facebook pages, so very easy to get connected to the community. Stay well, everybody.