Community and Organizations Addressing Financial Toxicity - Part 2

Social Determinants of Health in Cancer Care

In this Part 2 episode guest host, Dr. Reggie Tucker-Seeley, discusses the importance of the community and organizations meant to address the social needs of patients as they navigate their cancer journey and the financial burden on the household following a cancer diagnosis. Dr. Tucker-Seeley is joined by Carla Tardif, Chief Executive Officer at Family Reach and Eucharia Borden: Vice President, Programs and Health Equity at Family Reach, whose mission is to remove the financial barriers standing between cancer patients and their treatment.

TRANSCRIPT

The guest on this podcast episode has no disclosures to declare.

Dr. Reggie Tucker-Seeley: Hello and welcome to ASCO's Social Determinants of Health and Cancer Care podcast. I am Dr. Reggie Tucker-Seeley, Vice President of Health Equity at Zero Prostate Cancer and Chair of ASCO's Health Equity and Outcomes Committee. I'm joined today by Carla Tardif, chief executive officer at Family Reach, and Eucharia Borden, vice president of programs and health equity at Family Reach.

In this episode, we will discuss the importance of the community and organizations meant to address the social needs of patients as they navigate their cancer journey. There are many needs that cancer patients face and one of the biggest is the financial burden on the household following a cancer diagnosis.

We are lucky to have two change makers from the organization Family Reach with us here today. Family Reach is an organization in Boston, Massachusetts that dedicates their work to removing financial barriers with financial education, financial planning, resource navigation, and emergency funds to patients and caregivers.

Dr. Reggie Tucker-Seeley: So there is a discussion in healthcare services research now about whether the service to meet some of those patient social needs should be within the healthcare organization or the system, or whether community organizations should address those. And so, as a patient-focused organization, how does your organization partner with healthcare practices and systems?

Carla Tardif: Yeah, so that's a great question. There is not one answer. We all have to be involved in this conversation. We all have to be able to step in with financial resources, having the conversation to normalize the conversation around finances and health. One of my north stars is to make financial health a standard of care because it affects your care so much. So, yes, patients need to hear about it in the healthcare system. We partner with over 1000 cancer care centers in this country, working with over 4000 oncology social workers in those hospitals. We give them our financial education program. They have access to an online portal to talk to my team of licensed social workers and resource navigators. That is a really critical intersection with the patient.

And we partner with nonprofits, as Eucharia shared, throughout the country who are working with patients because many patients do not feel comfortable talking about their finances in the healthcare system. How is this going to affect my care? Will I get a generic drug? Will I be invited to a trial? So they say nothing. If a parent has a child with cancer and a social worker sees that they cannot provide for their children, they could actually lose their children. The children could be removed from the home. This is the fear in talking about your finances in the healthcare system.

So the advocacy organizations outside the healthcare system play a critical role in trust, as Eucharia said as well. Many of them are under-resourced. Many of them don't have the financial interventions that we have. So that partnership is critical. Then we have our website. So many people are just googling, looking up on the internet to take matters into their own hands - “How can I get financial support? How do I figure this out? Where do I get help?” So the answer really is every one of us needs to be educated and armed with the resources and the financial assistance to support patients when they have the courage to ask for help and to raise their hand that they're in trouble.

Dr. Reggie Tucker-Seeley: Are there infrastructure needs that policymakers could address here? Because it sounds like there are just so many holes in our social safety net that people are falling through. But how can policymakers help us address this issue?

Eucharia Borden: That's a loaded question, but it's a good question and it's a question that we do need to be asking. Carla is a part of the Cancer Moonshot and this is certainly something that's being discussed at that level on a number of fronts. But also as we think about the fact that people are living in different states and different counties in different jurisdictions within those counties, one of the things that is so important but so often overlooked is the power of advocacy. I think we jump to policy immediately, but I always like to think about advocacy with a big ‘A’ and a little ‘a’ because they're different but both relevant.

So if we think about advocacy with that big A, those are those big policy initiatives, things that are moving legislation forward and that kind of thing. But there's also advocacy with a little a. But it doesn't mean that it's less important, it just means that it doesn't rise to that level, perhaps of like a big policy or legislative initiative that moves forward. But what about the advocacy that can happen in communities? Because sometimes that's the thing that we really need to be doing, even as we think about something like Medicaid expansion, not something that every state did, and so even as you try to address that, well, that's going to be state dependent.

As we enter into these spaces where we think about policy, we need to think about the varying levels of that policy work that occurs. But also this is another place where we don't need to cut out patients and their families. They are some of our best advocates for change because they bring that human element to whatever conversation they're a part of, just like we're doing here, to humanize a term like financial toxicity. So there are so many grassroots ways that people can be involved and I think they should be involved.

Carla Tardif: We saw after COVID there were a lot of relief programs. SNAP benefits were expanded and housing relief and mortgage forbearance. So these are things that we had been talking about pre-COVID. It was a heavy lift and I was told we were out of our lane and I was out of my lane. I mean, I'm just sitting here shaking the trees saying, “This is what we're seeing. We've got to do something about it.” “We can't.” COVID hit “You can! We've seen it! There it is!” So that gives me some hope. So the data we are collecting, all of these programs, all of these intersections, we are really unearthing data to tell this story.

When they just cut the SNAP benefits back, we were inundated with cancer patients who are food insecure because they've lost that. COVID is over but cancer is not. And all of the things people were afraid of was COVID - fear of getting sick, isolation, job loss, housing insecurity, food insecurity, that's cancer. Those programs need to continue for the cancer community. It will affect survival rates. So policy is important.

Dr. Reggie Tucker-Seeley: One of the themes that's been woven through this conversation is the shame that families may be feeling as they are attempting to manage the financial burden of having cancer and the financial toxicity that comes with that. Do you find that patients are open about discussing their social needs and are they more likely to discuss their needs with their physician or do they prefer to have this discussion with a social worker or other members of the care team or administrative staff?

Eucharia Borden: No, not all patients are open about discussing their social needs. Not even just their financial needs but even their more broad social needs. However, when they are, they tend to discuss their needs with the members of their team that they feel most comfortable with. So these are people that they've started to feel like they can trust or people that they begin to understand sort of what their roles are and they think well maybe this is the person I should talk to because they've started to build relationship with them. But the reality is that different kinds of needs are discussed with different team members. It's just kind of how that works.

Some patients are very much unaware of who is actually a part of their treatment team. Because, as you think about someone bringing up a need, well, maybe they didn't know that they had an oncology social worker on their team because they didn't have a need that the other team member they were talking to thought rose to the level that they needed to talk to an oncology social worker. In fact, I often had the experience as a licensed clinical oncology social worker for people not even knowing that I'm part of the team. And when they did find out that I was part of the team they had no idea what I actually did.

Because if we go back to that conversation about systems, social workers are a part of many systems and unfortunately we are a part of systems where we're there when there are just problems. People think we're there just to take children. We're there to do those unpleasant things that are sometimes necessities. But I remember a patient coming to my office one day, quite unhappy about being sent to my office. Knocked on my door and came in, literally with her arms folded, sat down, and said, “My surgeon sent me to you, but I don't need a social worker. So I don't know what I'm here for. But why don't you tell me what you can do for me?” And I said, “Well, why don't we talk about why your surgeon sent you to me?” That's where I had to start that conversation because that's what she came in with. “I'd heard this term social worker. I don't know what it means here, but I know outside of here, I don't like it, and I don't want to have to talk to you.”

But after she told me the reasons why her surgeon sent her to me, she didn't trust me right away. It was one action after another because I kept showing up and kept showing up. But after a while, Reggie, this patient, would come and stop by my office just because she wanted to come and give me an update. Because she saw that I was a necessary, integral part of that team and she finally understood how to utilize me. That is a complete lesson.

When we think about people coming into healthcare, not only do they have to learn all of these new terms related to their treatments and medications and all of those things are brand new, but people also have to understand what the roles are in healthcare. Cancer is unlike so many other diseases because, once you have that diagnosis, you're spending a lot of time at a treatment center. The schedule alone is a lot to contend with. Between treatment and needing to come in, in between treatment and the follow-up appointments, and into survivorship, this continues. And so learning how to access what you need in health care is a lesson in and of itself. And too often we assume that people know how to do that, and they don't, nor should they.

So people coming into healthcare who are novice at what's happening, and we expect sometimes that they're just going to be open about their social needs and their financial needs and just become this open book, and that's not realistic. So if a patient opens up to their physician, fantastic. If they talk to the nurse, amazing. As long as they are talking to someone on that team so that whomever they disclose their issues to knows how to triage what they're saying, to say, “You know what? We've got a social worker. Let me put you in touch with her.” Preferably while they're on-site so that they can put a face to a name. So no, patients are not open. This is why. And we have to do a better job of helping them to understand how to utilize their team.

Carla Tardif: I also have to step in and say, Eucharia has told me stories about seeing patients who ‘don't need help’ visiting them in their room, visiting when they're in a hospital, they ‘don't need help’. But walking around in her big lab coat pockets with $100 grocery gift cards or prepaid Visa cards and just going in to say, “Oh, I'm just handing these out today. Here you go.” So it's not somebody asking for help. It's almost not even somebody being on the receiving end of help. It's just this kind gesture because this isn't charity. This is humanity. And it's this human moment where she says, “I see you. You matter. Here's some food.”

Dr. Reggie Tucker-Seeley: I think you both have just raised some really critical points here. And so one of the questions that I asked in the podcast series with our president-elect, Dr. Lori Pierce, around this notion that physicians are used to being the quarterback of the healthcare delivery team, that they have to lead it all, but perhaps this isn't a place where they are necessarily the leader. Sounds like what you're recommending is that perhaps all members of the healthcare delivery team should be prepared to gather this information. And then, Carla, in the example that you provided, maybe it is this notion that sort of help is just provided.

Eucharia Borden: When you think about treating the whole person, it means that, okay, look, I'm not going to do surgery. That's not what I do. That's not what I'm trying to do. There are some roles that have to be for specific members of the team. But treating the whole person means that perhaps in this moment, meeting with this professional, this is the time that feels right to disclose something. And I would like, if I'm the person disclosing, for the person in front of me not to get so flustered and not know what to do and seem really uncomfortable that I exposed my truth to them. So it's really about how we assess people, how we're meeting them, so that they begin to feel, through our behavior, even our nonverbal behavior, that we've heard this before, and we know what to do about it. We know how to get you to the people who can help you with this.

Dr. Reggie Tucker-Seeley: Many organizations that are trying to do this are concerned about sustainability. So how has Family Reach been able to be successful in this space for so long?

Carla Tardif: Sheer determination, will, and refusal to stop. We are just trying so many different things. We keep innovating. Putting a social worker into the hospital. What are we learning? Having her sit in the waiting room, have her milling around the infusion room, handing out grocery gift cards. What are we learning? Educating the social workers in the hospitals throughout the country. How can we help them? This isn't what they learned in social worker school. This was not addressed. Let's help fill that gap for you.

So I think it's just this ability to keep trying new ways to intersect with the patient and keep talking about it. For the past 15 years, I've said, I want a Super Bowl ad. I need to normalize this conversation about finances and cancer so that we can all feel comfortable talking about it. And I think people in the healthcare system haven't felt comfortable talking about it because, once they know, what are they actually going to do about it? It's better not to know.

So if we can come out and talk about our corporate partnerships with Zipcar or Hilton or all of these wonderful partners that we have, utility companies, we're not just doing this alone. We are building this ecosystem because we have a deep understanding of that patient's nonmedical journey. And we know that that nonmedical journey is being far outpaced by science. So if we keep talking about this, we can normalize the conversation and encourage patients to speak up sooner, because there are a lot of resources, Reggie. There's a lot of help out there.

Dr. Reggie Tucker-Seeley: One of the things that I learned from my research in this area is that it really is important for the people having the conversation to feel comfortable talking about this issue. And we all have grown up in different families with different values around who and when and how we can talk about finances. So how do you approach this topic for cancer patients just so that they don't feel helpless and lost as they're navigating this very, very challenging process?

Eucharia Borden: Reggie, we approach them with dignity and respect. It really goes back to that. I think about a patient who was diagnosed with stage a III gastric cancer that quickly progressed to stage IV. He is no longer with us. At the time that I met him, he was so proud, so proud to talk about how his home was paid for: "I always wanted to do that for my family," he would say. “So I made sure I worked hard all these years to make sure that if I was never here, they never had to worry about having a place to live." He had this fantastic plan in the marketplace, the healthcare marketplace, a platinum plan in the marketplace. This plan was so expensive. $1400 a month this plan costs. When he was working, he made it work, but suddenly he was no longer working. But he was the person providing for the members of this household, which was him and his wife.

One day while he was getting his treatment, I'm doing the math in my head just after a few meetings with them, and I thought, they've got this expensive plan. Yes, the house is paid for, but they've got utilities. They're coming here every day. Now, he doesn't have that income, and she's got her Social Security. The math just doesn't add up here. But it's not something they had ever brought up. And so after building relationship with them, a few appointments in, I said, "You know, you've talked to me about how important it was for you to pay for the house. You're here every day. But I have one question, “How are you eating every day?" And literally, his wife's eyes welled up with tears. It was the question that no one had asked because on the surface, why do we need to ask? They have insurance, so their bills are paid. They're here on time. They're not complaining, they're not raising their hand, as Carla said, so they're good. And they weren't.

So it's really thinking about how sometimes we focus on the people that we assume have the issues, and maybe we're right, maybe we do know the people who need us, but it's thinking about how we assess to make sure that people aren't falling through the cracks because of our own assumptions. So how do we approach patients? Well, we approach them equitably, first of all, to put our own assumptions aside and ask the questions that we need to ask because in this case, had we not asked, I can't even imagine what this would have been like. This is a person getting some very serious drugs, and if a body is not well nourished or nourished at all, how are we expecting treatment to be effective or for someone to be set up for success to even get through that treatment in the first place?

And also keeping in mind that getting to know this patient meant dignity and respect were the things that he cherished and so many of our patients do. So it's meeting them in that place and understanding that when we think about things like cultural humility, we need to bake that into our approach to patients, and that's what really matters.

Carla Tardif: And I would also add, a lot of hospitals are saying they do an assessment in the beginning or social determinants of health screening in the beginning, and that's wonderful, but the patient does not know in the beginning what their reality is going to be. So as we're talking about checking in and assessment at Family Reach, and I would encourage everyone to do that, keep checking in. Check-in in three months, check-in in six months. Ask the question differently. What has changed? Everything. So it's not just a one-time first-appointment assessment check-in. It has to be consistent because that journey changes dramatically over the years of treatment.

Dr. Reggie Tucker-Seeley: Well, this has been an amazing conversation. I've learned some things about financial toxicity, and again, I was an academic researcher in this space, and I thought I learned all that I was going to learn. But you two have taught me a lot about ensuring that we hear this from the patient's perspective. And so do you have any final thoughts you'd like to leave our listeners with?

Carla Tardif: Thank you. And thank you for opening your podcast to us so that we can shed light on what we see every single day. As you can tell, we are passionate about it, we are determined about it. We have devoted our professional lives to it. And I can say Family Reach has been around for 27 years. I've been doing this for 16 years and I can honestly say I feel like we're just getting started.

Family Reach has proven our financial interventions work. We are collaborators. We are innovators. I would encourage anybody in this space that wants to learn more, wants to work with us, knows patients that need help, please reach out to Family Reach. We are here to do this together. It is the only way we're going to make a dent in financial toxicity. One out of three adult cancer deaths in this country could be prevented by removing socioeconomic barriers. That's what we do and we can't do it alone. So thank you.

Dr. Reggie Tucker-Seeley: How can folks find you on the web?

Eucharia Borden: We can be found at familyreach.org.

Dr. Reggie Tucker-Seeley: Great. Thank you both Carla and Eucharia for joining us for this episode of the ASCO Social Determinants of Health and Cancer Care podcast.

Eucharia Borden: Thank you so much for having us.

Carla Tardif: Thank you, Reggie.

Dr. Reggie Tucker-Seeley: And a special thanks to our listeners for being a part of this conversation on the importance of community and organizations being a necessity for cancer patients after diagnosis. Please join us for the next episode where we talk to a panel on the importance of community organizations' capacity and infrastructure when addressing food insecurity.

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