Community and Organizations Addressing Financial Toxicity - Part 1

In Part 1 of this 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. 

Thank you both for being a part of our Social Determinants of Health podcast series in this episode focused on community and organization.

Carla Tardif: Thank you for having us.

Dr. Reggie Tucker-Seeley: Let's start the conversation with the question that we like to ask all of our guests. What does social determinants of health and cancer care mean to the both of you?

Carla Tardif: It's a great question and there are so many buzzwords now around this topic, so I really appreciate the opportunity to even define some of them, like social determinants of health, like financial toxicity, like health-related social risks and how are they different and what do they mean. We talk about social determinants of health being more about societal impact on people according to where they are born, live, work, play, and pray. And we talk about financial toxicity as the financial impact that a cancer diagnosis has on a family. Financial toxicity is a word that we say often and that really is about cancer affecting your finances and your finances affecting your cancer. And what does it mean when work is stopped, income is cut, out of pocket expenses, the cost of care, and how does that affect your ability to access care and adhere to treatment which will affect your survival rate? And then I'll pass it to you Eucharia, because I love her definition of social determinants of health.

Eucharia Borden: Thank you so much for having me here today. I think one of the first things that we need to put out there is that our professional language is full of jargon, and patients often don't understand things like social determinants of health, financial toxicity, what do these things mean to them? Which is why at Family Reach, we talk about meeting their basic needs, meeting their needs in areas like food, transportation, housing, and utilities, because that is also something that's important when you're approaching patients and working with patients who really do have financial toxicity - to make sure that you're on the same page with them about what their needs are and therefore what kinds of problems you're helping them to solve.

Dr. Reggie Tucker-Seeley: My first question is for you, Carla. Can you take us to the beginning? How did Family Reach get started and what led you to work with this organization?

Carla Tardif: Family Reach was started by two families out of New Jersey who both lost their child to cancer, pediatric cancers. And they saw firsthand spending so much time in the hospitals overhearing conversations that families did not have heat, they were being evicted, they were hungry, they couldn't pay to get out of the garage after they'd been there for weeks. So the families both saw this side of cancer and when their children passed, they got together and said, we need to do something about this. And they started Family Reach. 

And how they started was they raised money. They did a golf tournament, and they took those funds back to the hospital social workers and said, this money is not for the hospital. This money is for the families that you interface with that we know are hungry, are in homes without heat, and cannot put gas in the car to get to and from treatment. That's how it started. They functioned like this as a volunteer organization, a pure labor of love for 12 years. And they had three hospital partners that they worked with in New York; New York Presbyterian, Memorial Sloan Kettering, and then Dana-Farber. 

I lost a dear friend to brain cancer not long out of college. My friend Pat Kelly played in the NFL. He was diagnosed with brain cancer. He would bring Jets players through the pediatric floors to meet the kids, as so many athletes do. And Pat would call me to say the same thing. “Carla, I just saw a husband and wife fighting at the vending machine. They're so hungry, they have enough change for one snack, and they cannot agree on the snack. Do something.” He called me once because there was a single mother crying on the curb. Her two-year-old had brain cancer and she had no money to go pick her four-year-old up at preschool. And she was just scared and lost and done. So he kept calling me to tell me to do something. 

A few weeks before he passed away, I went to say goodbye to him. I was holding his hand with a few of our college buddies in the room. He squeezed my hand, and said, “Look me in the eye and promise me you are going to fix this.” So clearly, having no idea what this was, I promised him that I would fix this. So I spent the next two years really searching, what is this? And I found Family Reach. And I approached them and said, told them my story, and said, “Can I help you? You have a model I can scale.” Work with the hospitals. They identify the families, pay bills directly, literally get in there and have a tangible impact on that day. So I spent two years meeting with families, meeting with social workers, doing grocery shopping, sitting in hospital rooms, really trying to understand this side of cancer that people don't talk about, where there is a lot of shame and a lot of fear, but clearly affects their ability to survive and affects the whole family. That was 16 years ago.

Dr. Reggie Tucker-Seeley: 16 years ago. Speaking for the cancer community, we are so grateful that you have kept your commitment to your friend at the bedside. 

Eucharia, you are the Vice President of Programs in Health Equity, and several organizations have created senior roles to lead health equity efforts, really to address some of those examples that Carla was mentioning. We know that cancer doesn't discriminate necessarily by socioeconomic circumstances, but the issues that Carla mentioned are disproportionately impacting certain groups. So what does health equity mean to you at Family Reach and what are your responsibilities in this area?

Eucharia Borden: There are so many organizations that have created roles focused on health equity, some of them more specifically than others. Some of them are kind of rolled up into diversity equity and inclusion positions. Some are more specifically focused on health equity, and they're not the same I have to say. One of the things that I love at Family Reach is that so many people talk about doing the work, and we're actually doing the work. That's what's different about our health equity initiatives. 

In fact, through our cancer equity initiative, we're actually meeting patients where they are. And as a social worker, meeting people where they are is something that's like Social Work 101. It's one of the first things they teach us. And then through the early days of the pandemic, this phrase of ‘meeting people where they are’ was suddenly mainstream, which is kind of surreal for me and other social workers because we're like, “Wait a minute, that's what we've always done!” And unfortunately, because it has become this mainstream term to meet people where they are, it's not actually happening all the time. 

And so as I think about what health equity means for Family Reach, it means not just having actions that are performative, but to actually say, you'd like us to tell you about what our cancer equity initiative means. Let me give you the examples of how we're meeting Black and Hispanic patients in particular. Our cancer equity initiative, for example, is focused in two areas. One of those is through our community partners. And these community partnerships are partnerships that we form with organizations that are serving 90% Black or Hispanic patients with cancer. 

And trust is the other thing that I have to bring into this conversation. It's really important to establish trust with the people that you're serving. Let's face it, like, you started us off with this question, Reggie, cancer doesn't discriminate, but many of the centers where people get their care, well, they do. And so even when it comes to seeking help. People are often not doing that for a variety of reasons, but one of those reasons is because, unfortunately, their system’s involvement, even before coming into healthcare, has taught them that systems are not set up for me, they're not set up to help me, they're not here to meet my needs. 

And so what we've done is partnered in communities where people already have trust with organizations that are meeting some of their other needs, but maybe those organizations need help in meeting the financial needs that they have. And that's where we come in. So that patient or that patient and their family can still go to their trusted resource. And that organization is now working with Family Reach to meet those financial needs so that the patient may or may not ever know that they were working with Family Reach. And you know what? That's okay as long as their need was met. So that's one way that we're really meeting people where they are in those communities.

Dr. Reggie Tucker-Seeley: Thank you so much, Eucharia, for giving us that detail. You hit on so many key points here. It's also important that the leader of the organization is on board with these efforts so that the organization truly is viewed as a trustworthy partner in the community. So, Carla, as CEO of Family Reach, what do you see as your role in the effort to achieve health equity?

Carla Tardif: It's always been innovation. It's always been collaboration. It's always been awareness. This has been a lonely place to be for a long time, but now there are so many people really invested, engaged, and excited to have the conversation. So for us to go back and say, “We've been doing this for 27 years, and we are so excited to share our financial interventions and to show the proof we have that they're working and to make sure that we collaborate with everybody, anybody in this space, so that we can scale and that we can reach every patient that needs us.”

We started out just giving emergency relief grants, and that's wonderful. That is a critical Band-Aid. And for so many families, until they have that financial check to put groceries on the table or to get another few months of rent, until those basic needs are met, they can't think about cancer care. They can't think about anything else. So for many, many years, we were just emergency relief. Then we said, “Okay, now what? How do we reach patients sooner?” Patients come to us, they're calling, screaming because there's a repo guy in the driveway taking their car. They cannot get to treatment the next day. How do we reach people before that? 

So, as the CEO, awareness of this problem, helping to wipe out the shame, say, this is part of cancer, say, you did nothing wrong, and to let the cancer community know that we see them, as Eucharia said, that is our tagline. We see you. You did nothing wrong. And we're here. This is part of cancer. Financial assistance wasn't enough, financial education needed to happen. Resource navigation. Resource navigation is something we've done for a long time and we're really building right now. And we have people that work with us that say, “You don't do resource navigation, you do resource activation.” We're not here to tell patients, here's a list of resources. Best of luck to you. We are here to say we understand your needs. We are going to plug you into a resource, hold your hand, and make sure you can actualize this resource that is available. So innovation is also a really big part of what I do, and I'm thrilled at the change in the progress.

Dr. Reggie Tucker-Seeley: Can you define how Family Reach defines financial toxicity?

Eucharia Borden: As we think about financial toxicity, going back to something Carla said earlier, which was cancer affects finances and finances affect cancer, it's really that bi-directional relationship there. It's about what cancer does to your finances in terms of your bank account. I had a patient say to me once, "Do you know what my credit score used to be and what it is now? I had a credit score that was above 800 before I was diagnosed with cancer." And he said, "I don't know if I'll ever get back to that place, and that's something that mattered a lot to me.” So for him, he measured financial toxicity, really looking at what his credit score looked like and what it took for him to get to that place. 

If we think about another patient, it might not be their credit score. Some patients said to me it really meant a lot to them that they had built up a savings for an emergency, especially when they had families. And to now look at how they were depleting their savings—I mean, they really felt like they were in crisis. I come from a long history of working in hospitals directly with patients, and financial toxicity, the way that experts talk about it does tend to be an umbrella term. But I like to think of it in terms of these concrete terms and what it means in the life of a cancer patient because I think that it just clearly illustrates what we mean even more. It is a crisis. It is something that is not that person's fault, but let's face it, people often feel like it is their fault. “This is happening, yes, because I got cancer, but I should have managed my finances better.” They start to "should" on themselves. “I should have planned for an emergency,” when maybe they didn't even have the resources to do any of that emergency planning like they're talking about now. 

So as we think about what it means, I think we also have to keep in mind that the way we talk about it at that professional level may not be the same way that the patients we serve talk about what financial toxicity means to them, and what it means to them is having to now live a life that is very different than the life they were living before they heard those words that they have cancer.That matters. It matters whether you’re a single person, whether you have a family, or what that family makeup is. What it means is that you’re doing life differently. Cancer, not only does it show up in a life that’s already happening, when there are already issues that a person is facing, so in this case, finances, it tends to exacerbate any of the problems that were there or widen the gaps that people were already experiencing. If you’re living day to day, to have something like cancer show up in your life uninvited, it really turns everything upside down. This is what we’re talking about when we talk about financial toxicity. 

What we’re seeing as we talk to the patients that come to us for help or the professionals they come to us on their behalf, we’re looking at people who are making it through the day on one can of food. They’re trying to figure out ‘how I’m going to go to a hospital today and get six or eight hours of chemotherapy and I didn't eat well yesterday. And I’m going to be in a hospital all day and I don’t have money to bring a lunch with me or to pay for the food at the hospital.’ These are the things that people are thinking about. 

31% of patients we find that come to us are cutting their medications in half. So as we think about even the impact of financial toxicity, this really has an impact on a patient’s ability to even adhere to this treatment regimen. We’ve got all these advances in cancer treatment, but it’s not really accessible fully if your basic needs are not met.

Dr. Reggie Tucker-Seeley: A story I often tell related to financial hardship in cancer is that when I used to travel all over the country as an academic researcher doing research in this area, everyone I met on planes and airports had a story about how navigating our health care delivery system in this country caused them or someone they knew substantial financial loss. So do you think most people are aware of just how prevalent financial hardship is for families managing a cancer diagnosis?

Carla Tardif: No, because people don't talk about it. They're ashamed to talk about it. And I also think you said you're thrilled that the financial toxicity word has caught some popularity, and that took a while because the term used to feel like a cost of drug conversation, so people would think, financial toxicity, drug costs. We have beat this drum for years to really share the formula—loss of income. If you are a single parent with cancer or one of your children has cancer, you cannot work. You have no income. You have all of these out-of-pocket expenses, child care for your other children, transportation back and forth to the hospital, the cost of care. And so to be able to let people know that this financial toxicity is far more robust than a cost of care conversation, I think is what has allowed it to catch wind. 

Reggie, all of our families will tell us that it's the financial crisis that scares them more than cancer. Every single one of our families that I have talked to over the past 16 years has said that. The cancer is taken care of. There are great healthcare systems, the science, the healthcare providers - there are people, educated, smart, caring people, taking care of the cancer. But when they leave the hospital and they go home to that life that you said was there before they were a patient, now they're a parent, now they're a child, whatever their title is outside the hospital, there is nobody there, and a lot of shame and a lot of fear. That is the crisis that scares them more than cancer.

The purpose of this podcast is to educate and inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.  

Guests on this podcast express their own opinions, experiences, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.