Race, breast cancer, and COVID-19

A tragic fact in American breast cancer care is that outcomes for African American women are consistently worse than for white women and women of other ethnicities. These disparities are now being seen in cases and deaths of COVID-19, the disease caused by the new coronavirus. Trauma-informed care is one method healthcare providers can use to better care for people by considering past experiences and present hurdles to getting the best care.

Tiah Tomlin, a graduate of Living Beyond Breast Cancer’s Young Advocate program, spoke to oncology social worker Celeste Vaughan-Briggs, LCSW, about trauma-informed care and how it can help. They also discussed the disparities in health care and medical outcomes, ways that healthcare facilities can better serve the community, and practical advice for Black women concerned about the level of care they are being given.

Tiah Tomlin (00:00):

Hello, everyone. My name is Tiah Tomlin and I'm a graduate of the Living Beyond Breast Cancer Young Advocate program. I'm working with LBBC to ensure that their programs include diverse voices of people impacted by breast cancer, including some focused programs for African Americans.

Living Beyond Breast Cancer is excited to be offering workshop series for African Americans diagnosed with early-stage and metastatic breast cancer this fall. The workshop series will help attendees become more informed about their care and provide actionable tools to address implicit and explicit bias in the healthcare setting. More information and registration information will be available this summer. To learn more, make sure you're signed up on LBBC’s mailing list.

In 2015 I was diagnosed with triple-negative breast cancer, and after going through my journey, I wanted to be a part of the solution, so I decided to become an advocate with a focus on addressing issues around disparities in the African American community. Today I'm now supporting over 500 women who are living or have lived with breast cancer in the greater Atlanta area. I'm so excited that we will be talking with Celeste Vaughan-Briggs today. She is a licensed clinical social worker at Thomas Jefferson University Hospital. Ms. Vaughan Briggs works at the Sydney Kimmel Cancer Center where she practiced trauma informed social work. Welcome, Celeste.

Celeste Vaughan-Briggs (01:28):

Thank you for having me.

Tiah Tomlin (01:30):

I'm so glad to have you, and I'm so glad to for us to have this conversation today because it is near and dear to my heart around disparities.

I want to ask you, you practice trauma-informed care through your social work practice. What does that mean for black women with breast cancer who come to see you?

Celeste Vaughan-Briggs (01:48):

Thank you again for the opportunity to talk about it. What I'll do is give a general overview so that we can understand the context.

If we think about our ourselves and we think about the approach to any issue, social workers tend to approach things with something called a biopsychosocial approach. It has our biological issues. That's the things that we bring to the table, our gender, any physical health issue that we have, our stress reactions. Then we bring our psychology. That is how our attitudes, our beliefs, how we respond to issues. And within that can be the impact of trauma in our lives. Then we have our social context, our family system, our cultural backgrounds, our racial backgrounds, our community.

All of those things intersect in the middle for our health. If we are looking at the whole person or the person in the environment, what we do know is that in the United States, just generally speaking, there are many, many people who have been impacted by trauma. If we approach that with universal precautions by coming to the table with a sensitivity, with an understanding of these facts then we're better able to meet people with the appropriate level of services, care, and respect, and meet them at their point of need.

Tiah Tomlin (03:27):

Would you say your approach is different from the traditional approach to treatment? And if so, how so?

Celeste Vaughan-Briggs (03:34):

What I would say is, it's nuanced. Trauma-informed practice has been amplified by several different community spaces over the last 20 years. It certainly needs some additional penetration into the community, but what it does is it allows social workers, care professionals, and others to approach individuals who have experienced a medical trauma — which the diagnosis of cancer is, even in circumstances with the best possible outcome that the individual impacted by cancer, their family and the clinical team wants — it's still a significant issue in that person's life. It could go everywhere from an acute stress issue to a full trauma response.

If we approach that as a care team with that understanding, we're better able to contextualize people's reactions, respond appropriately, and meet them with the services they may need and support they may need along the way.

Tiah Tomlin (04:48):

You've talked about what it's like to have breast cancer while being black. Now that we're dealing with this COVID-19 situation, it's well-documented that African Americans are disproportionately affected by COVID-19. How does this contribute to those stressors or the anxiety and trauma?

Celeste Vaughan-Briggs (05:08):

That's a good point. I think one of the things that we're finding is that it's amplifying anxiety concern issues about this trust in the medical system and healthcare professionals as well as generalized anxiety about the balance between those things we can control and those things we can't control. And for a cancer patient and particularly a cancer patients of color, there may be more concerns to bring to that table. One of the things we can do as a care team is be sensitive to that, acknowledge that, don't run away from acknowledging that, and then listening to the concerns the patients bring to the table and see can we strategize a way to help control the things we can. And if care teams and their providers can help patients and their families control the things they can, then all of us walk through this together in a more informed way.

Tiah Tomlin (06:09):

It's interesting, we're sitting here, we're talking about the coronavirus, COVID-19, and people with breast cancer are being treated differently than usual. We're seeing situations of delayed surgery, reconstruction, then pushing back when you start your chemotherapy. I'm even seeing it with the women that I support, high levels of anxiety. With these changes do we know that they can exacerbate distrust in the healthcare system? How can we actually be sure that our doctors have our best interest at heart?

Celeste Vaughan-Briggs (06:45):

Thank you for bringing up that question because I think that having the conversation about it and acknowledging it is important.

While we understand that healthcare systems and providers are trying to deal with unprecedented times and things being different than they were or would have been prior to the coronavirus pandemic. we still want to encourage women and their families to advocate, advocate, advocate for themselves, and to communicate concerns. Sometimes having a system for that. Maybe in the past it was easier to communicate because you had a face-to-face visit. There was a little bit more time to be able to discuss concerns. But now with the telehealth visit, maybe the time is shortened.

Utilize the technology, write down questions. Can you submit questions early via MyChart or whatever electronic communication your provider is using. Ask them to respond about why they're doing the things they're doing, what is the concern? What is the overall picture they can give you about what these changes mean? It doesn't necessarily mean that you're going to feel more trustful because there are some uncertainties, but at least you can feel a little bit more empowered now that you have gotten answers to the questions or at least attempted to get answers to the questions from the providers. And they should welcome that because that helps them to be clear and to communicate uncertainties to you as well.

Tiah Tomlin (08:24):

We're talking about advocacy. Advocating for yourself is so important and we can't stress that enough. Now with people having to go back to work and they can't shelter in place and things are opening up, the levels of fear are just going off the charts. I'm seeing it, I'm sure you're seeing it. People are concerned about getting COVID-19 because now their exposure is increasing. And what we're also seeing is that people who are done with treatment are being told by their doctors that they're not immunocompromised and they're not in the high-risk category. But we know that there are so many unknown factors with this disease. And this, I mean not disease, this virus.

How can we help these patients or women, whether you were in treatment or out of treatment, and men? How can we encourage them and help them communicate to their doctors to receive the information that they need to help ease their fears?

Celeste Vaughan-Briggs (09:20):

I think some of that is working with organizations like Living Beyond Breast Cancer and other organizations that have collective concerns, talking to other survivors, so that if you feel that on a one-on-one basis your concerns aren't being addressed by your clinical team, you can have a shared collective voice. And if there are issues or concerns that are really coming across as very common, maybe that collective voice can then translate to more media attention and we can get something addressed, understanding that there is differing information going back and forth.

For many years, women were told to have a certain type of follow-up in a certain type of order and that was important, and now clinical organizations are saying, well, no, we can bend those guidelines and yeah, some doctors agreeing and not agreeing. So maybe if we can get the folks who are impacted by some of those changes and their voices and concerns collectively, and we can get the clinicians, maybe we can have better communication between both parts so that we can have a good way forward. Because it seems like unfortunately the pandemic is going to be around for a while. Even if we were to find a vaccine, the impacts are going to be felt for quite some time.

Tiah Tomlin (10:43):

We talk about having the conversation with our healthcare providers, but what about in the workplace? What are some ways that we can advocate for ourselves with our employers? I think there are also some concerns of not [wanting to] reveal too much about our health, but we want to make sure that we are protecting ourselves and our companies do take us serious. How can we make sure that our voices in the workplace are being heard and we're not being viewed as some type of threat?

Celeste Vaughan-Briggs (11:11):

There are a couple of things I usually advocate for a patient for concerns in the workplace generally and then we can say specifically for this.

One is locate your agencies or your employer's policy procedure or HR manual because you need to know what their rules are first.

Second, if you find that there is a concern about how you're being treated, if you're being treated unfairly or being put at risk unfairly, there are some legal advocacy organization that your social worker or you can connect to. If you have to fight for certain we have the Family Medical Leave Act, but that has it's place for certain circumstances with certain employers. Sometimes the law is a little bit more nuanced and it can vary from state to state. It's very important to check into your local advocacy organization. But the first step is getting your own policy and procedure manual from your HR department so that you can have guidance about what your specific employer’s rules are so that you can know for sure how to navigate. And that is what any legal advocate would want to know anyway in case you have to fight for additional protections or accommodations.

Tiah Tomlin (12:31):

Great. Thank you for sharing that feedback.

One other thing I want to bring up since we're talking about employers and we're talking about having communication with our healthcare providers: Here in Atlanta and many other parts of the country we're starting to go back into public. And one of the things that was concerning in particular, the state of Georgia was one of the first states that opened up, and the places that they opened up were places that people of color, black people, tend to frequent — your hair salon, your barbershops, your nail salons, bars. With all the tabloids and the headlines coming across saying African Americans are disproportionately affected by COVID-19, it was like a slap in the face for people of color for those places to be open. Where our community like I said, black men and women, we frequent, it wasn't like golf courses were open or other places that other ethnicities frequent. So what information can we share with the community that would be helpful and provide them with a level of support that they need right now?

Celeste Vaughan-Briggs (13:44):

Great question. It's a difficult and sensitive topic when we start talking about health disparities, and because this is a novel virus, we don't know all of the impact and some of the early information that's coming out. As somebody who has had a long interest in health disparities generally and specifically health disparities and cancer, I think it's important for us to be nuanced and mindful of the information we're receiving right now and how we use that information to inform our actions.

On one hand, when we have health behaviors and things that are risky and the environment that we live in and whether it's secondhand smoke or is being exposed to chemicals in the air and incidences of higher asthma, what do we do? We inform ourselves. We get the information. We take the best steps we can to personally protect ourselves and our loved ones while at the same time trying to get a sense of the picture and get the data around us so that we can mitigate as much risk to ourselves and our loved ones as possible. And it's always about balancing that out. And I think that that is a smart strategy that allows us to be able to have some predictability and control.

If the guidance is hand-washing, wearing masks, socially distancing, those are things we can individually control. We can't control what other people do in terms of their risk behaviors. But if we mitigate as much as we can, at least we can know at the end of the day we've done the best that we could do in those steps while at the same time, making sure we're pushing to get good data out there so that people can make better decisions because some of this conversation is not necessarily reflecting the risk to all populations because it's so early. We're getting a picture here, a picture there. At first we thought the data was showing that children weren't necessarily impacted at the same degree as adults, but now we're seeing that that information is absolutely different and we're seeing it globally. I think that maybe, hopefully, if people get better information the more cautious approach will rein in again and people will take their health risk behaviors more seriously. But we can do what we can do for ourselves and our family.

Tiah Tomlin (16:27):

I am going to change the topic just a slight bit. One issue that I've noticed is it's harder to get pain medications and now that we throw COVID-19 on top, it now is putting us at risk of exposure for the virus. Is there anything we can do around this situation to ensure that patients are getting pain medications, but they're not having to drive all over the place to find it, putting themselves at a greater risk?

Celeste Vaughan-Briggs (16:58):

Excellent point. Part of the attention to the opioid epidemic, and some provider misuse generally, has limited the number of places that can access pain medication. It’s an unintended consequences of addressing another health issue. What we usually tell our folks is to try to get their prescriptions with their hospital system, for a few reasons. One is that many times the prescription, if possible, can be electronically delivered because it's within that same hospital system. So you're not going up to pick a script up from one office and then go to another pharmacy. Try to see if the pharmacy that's associated with the hospital actually has a pharmacy on site that can fill it and trying to coordinate that but when you're already on that campus so that you're minimizing trips and you're having as much done electronically as you possibly can and you're trying navigate the system more effectively.

Tiah Tomlin (18:12):

When we look at our healthcare system, we see that our health healthcare system is stretched and we know that it's going to continue to be stretched. What is it that we can say to patients or what is it you can say to patients to help them ensure that they get the care that they actually need?

Celeste Vaughan-Briggs (18:30):

It goes back to that advocacy, it's networks, organizations like LBBC, survivor networks, the ears to the ground in the community about what's open and what's not. Health systems are starting to bring some services back online, but it's going to look quite different than what it did prior to the epidemic. I'm working to try to make sure you're in the queue to get back on track with regular preventative care in any of our diagnostic care. I would say look to other local community organizations.

We do know about the digital divide. We do know that some people don't have the technological resources, tablets, iPads, computers, or things of that nature. Some systems are getting grants from either nonprofit organizations, pharma, some cable companies, to help people decrease the digital divide and getting devices out, which may help you be able to navigate, to find resources and get back in the queue and get the services you need. We are going to have to eventually, some things can't be done remotely so they are going to have to be in person. How can we make sure that you're informed about getting back in your doctor's office, getting the test that you need, your mammogram, your ultrasound, your clinical breast exam and any other services you need?

Tiah Tomlin (20:08):

Celeste, I'm so glad that you address this issue around disparities and the lack of digital access. I was actually going to ask you that question, so thank you so much for bringing that up. One are the things that we're seeing is we talk about disparities and we know that this is an issue that people do not have access. What are some resources that we can share with people where they may potentially can get access? Do you know of any?

Celeste Vaughan-Briggs (20:33):

Yes, actually in our health system and our oncology service line through some private foundation support as well as some commitment from our health enterprise, we have made tablets available for patients, iPads, phones if they need it, as well as paying for digital minutes as well as phone bills and even some internet support. We do also reach out to other partners. There are some initiatives by our local cable provider to provide free access and we as the social work team make sure we're connecting up patients to those resources.

The other thing, and patients can find out their health system has the same thing, we also have a telehealth task force. The Jefferson Health Enterprise invested pretty early in telehealth, surprise, and it really has turned out to be a good investment. But everybody is not technologically savvy. We have individuals who can reach out to walk people through setting up their electronic medical record on their MyChart account, helping them to figure out how to actually view a telehealth visit, how they work their camera, and work through any of the technology that we're able to give them through some of these private foundations.

It's been really, really helpful and we’ve been able to make sure that we're getting patients connected even when a technology isn't always available or they did not have it prior to the crisis.

Tiah Tomlin (22:22):

Awesome. That's really great. One of the things that we have in Atlanta and I'm sure it's elsewhere, is our public libraries. They're offering routers or hotspots that they are given out for about 2 weeks for people to check in and check out. This is great information and I hope that the people who are listening to this share this information with the communities that they support so we can make sure that we get the information into people's hands.

Ms. Vaughn Briggs, I want to thank you so much for speaking with me today.

For those who are still tuned in, to continue the conversation about race, breast cancer, and COVID-19 please join our closed Facebook groups: Breast cancer support, all ages, all stages, and Breast cancer support for young women. We'll keep you updated on plans for our symposium and plans for future conversations about breast cancer and black women in the future. Thank you for tuning in.