Social Determinants of Health - Access to Care

This episode was originally released October 28, 2021

In this Social Determinants of Health (SDOH) episode, Dr. Deepak Vadehra (Roswell Park) moderates a discussion with Dr. Carmen Guerra (Abramson) and Dr. Daniel Carrizosa (Levine) on how access to care impacts SDOH and the available interventions and resources that can mitigate these issues for patients. View COI & Cancer.Net Podcast.

TRANSCRIPT

LORI PIERCE: Hello. I'm Dr. Lori Pierce, the 2020-2021 President of the American Society of Clinical Oncology. Thank you for tuning in for this discussion on social determinants of health and their impact on cancer care.

The purpose of this video is to educate and inform. It is not a substitute for medical care and is not intended for use in the diagnosis or treatments of individual conditions. Guests on this video express their own opinions, experiences, and conclusions. These discussions should not be construed as an ASCO position or endorsement.

For this series on the social determinants of health, we invite guests with a wide range of views and perspectives. Some of these conversations may be provocative and some even uncomfortable, but ASCO is committed to advancing equitable cancer care for all individuals, every patient, every day, everywhere.

I dedicated this vision to my term as ASCO president, and these conversations bring many voices to the table, voices that we need to hear to move forward and find solutions. We hope you learn new ways of thinking about these issues, and we invite you to join us in working toward a world in which every person with cancer, no matter where they live or what resources they have, receives high-quality, equitable cancer care. Thank you.

DEEPAK VADEHRA: Welcome to the 10th episode of the ASCO Social Determinants of Health Series. I am Dr. Deepak Vadhera, and I'm a GI medical oncologist at the Roswell Park Comprehensive Cancer Center. I am joined today by Dr. Carmen Guerra, who is Associate Director of Diversity and Outreach at the Abramson Cancer Center at the University of Pennsylvania, and by Dr. Daniel Carrizosa, Medical Director of the Disparities and Diversity Program at Levine Cancer Institute in Charlotte, North Carolina.

In this episode, we will be discussing access to care and how it impacts the social determinants of health and the available interventions and resources that clinicians can utilize to mitigate these access issues for their patients. So thank you very much to both Dr. Guerra and Dr. Carrizosa for being here.

When I, sort of, think about access to care, I intimately equate it with equity. I think that, at its core, access to care is an equity issue and that not every solution is appropriate for every patient. But I think that the important thing is that, as we move forward in our discussion and sort of as we think about things globally, that we all recognize the importance of allowing appropriate access to care and making sure it is equitable for all our patients.

So with that in mind, Dr. Guerra, one of the things that I think about in access to care are barriers, and one of the biggest areas, I think, is that we need to improve, with terms of access to care, is the access to clinical trials and the coverage of clinical trials. So I know that's something you're passionate about and so would love to hear some of your thoughts on that and other barriers you see, in terms of access to care.

CARMEN GUERRA: Thank you, Deepak. First of all, it's a pleasure to be here. Thank you for the invitation. And yes, I'm very passionate about the equitable access to cancer treatment trials, and it's a space that I've been working on.

We know there are inequities in accessing trials, because we know that the proportion of Black individuals that participate in trials is very small. In the 28 new oncology drugs approved by the FDA between 2018 and '19, If you look at all the participants, only 4% were Black.

And we saw this, as well, in our own Abramson Cancer Center. In 2014, we just presented data at the ASCO National meeting, where we saw that even though in our catchment area, the proportion of Black patients with cancer was about 16.5% in our catchment area, the patients who were coming to the Abramson Cancer Center who were Black was only 11.1%. So I call that a community-to-clinic gap.

And then we looked at who was participating on trials, and that was about 12.2% of the population was Black. And so we began, in that year, 2014, on a whole series of strategies to understand, better understand and address the barriers. And one of the barriers that we focused on was transportation. Nationally, we know that Black individuals are less likely to have a car, own a vehicle. About 20% of Black households do not have access to a vehicle. So one of the things we developed was a transportation program.

We also worked on building partnerships with faith-based groups that serve the Black communities, as well as nonfaith-based groups, to increase our ability to go out to the community and educate the community about cancer, cancer prevention, and clinical trials.

And then in addition, we also did some internal things. We worked with our PIs to show them-- our investigators-- to show them where the burden of cancer in the Black communities was. What were the cancers, and what were the trials we needed to design for them? And then we also asked them to include a minority participation paragraph in all protocols they submitted.

And so in 2018, we were able to reassess the data. And what we found was a two-fold increase in the individuals who are coming to the Abramson Cancer Center because now, they had access through transportation and information. And then we also saw a two-fold increase in the individuals who participate in on clinical trials.

And for us, that really showed us that we could do this, that we could provide the equitable access to cancer clinical trials. And so that just has continued to embolden us to continue to work on this, because I think you do have to sustain your efforts. Otherwise, we might see the same statistics that we saw back in 2014.

DEEPAK VADEHRA: No, I couldn't agree with you more. And those are great interventions and great ideas that the Abramson Cancer Center was able to roll out.

Dr. Carrizosa, what do you see as some of the barriers to our patients being able to access the care that they deserve as cancer patients?

DANIEL CARRIZOSA: Yes, I think it's very interesting, because I think there's a lot of questions you can ask, in general, that help you think about these barriers to care. And Dr. Guerra was just talking about, almost, the what. You know, what do we do for patients so that we can get things done and help them?

So other things are, simply, the question of who is it that you're looking at? What different type of person it is-- is this a elderly person that we need to think of different options, like different trials, different therapies? Do we also have to look at how they can access information? Is telemedicine something that's very easy for them? Or are they not able to use a smartphone?

You also have to think about people with differences, such as transgender patients, who sometimes have significant, unique interactions with the medical community and unique needs, and we need to think about them.

Also, at our annual Think Academy, which is a large conference we do that looks at inequities, we had Susan Magasi, from the University of Illinois Chicago, come and speak. And she really opened my eyes, because she talked about disabled people. And I had never thought about how a disabled person gets a mammogram. So that's a who and a how.

On top of that, we also think about where. So we've talked a little bit about the transportation issue, and we have transportation issues in cities, rural, how they get telemedicine or broadband, where they might actually have a medical center close to them. They could be in parts of the country where people have to drive hours to be able to get good cancer care.

And then the why. What is it that we're trying to do for them? And importantly, how can we educate people about cancer and about what these barriers are and how we can try it overcome them.

DEEPAK VADEHRA: I think those are all very important points that you make, and things that we are all very important to think about as we move forward in both designing trials and working on improving our access for our patients.

I think one of the things that providers and practitioners, who may not be in urban centers or are community providers and not, quote, unquote, academic providers, like we are-- what resources, what practical things can they do to help, sort of, break down the barriers and break down the walls that prevent patients from getting the proper access to appropriate clinical trials and supportive care, such as that?

So Dr. Guerra, have you-- what are some practical tools out there that providers can use to help lessen the burden of access to care issues?

CARMEN GUERRA: It's an important question, and thank you, so much. One of my volunteer hats is that I am the Board Scientific Officer for the American Cancer Society. And they have programs precisely to help individuals with access issues, such as transportation, such as lodging.

One of their programs is the American Cancer Society Road to Recovery Program. And this is a program that provides transportation to patients with cancer to their appointments. It was a program initially launched back in the 1960s, but it was adopted nationwide by the American Cancer Society in 1983. And it's available to anyone with a diagnosis of cancer.

They have provided, in the past, before the pandemic, in a year, about 35,000 patients were served with almost half a million rides, and it's available, again, for free, if you go on their website, cancer.org. And there's a phone number, which I'll be happy to share with your listeners. It's 800-227-2345. And that's a general American Cancer Society number for any services that they provide.

The second resource from the American Cancer Society is the Hope Lodges. The Hope Lodges are a system of 30, maybe 31 now, lodges all across the United States and Puerto Rico that provides, again, free-of-charge accommodations to any patient with cancer.

Now, the eligibility requirements vary by location, especially during this time of COVID. But again, that same number or cancer.org a way to identify those resources for patients who need access to care or access to clinical trials.

DEEPAK VADEHRA: Great. That's very important. And I hope that everyone who's listening can recognize and be able to use those tools at their disposal.

Dr. Carrizosa, what do you think are some other ideas and resources? What has worked in your experience? And is there something, maybe out of the box we need to do? And sort of, let me-- tell our listeners, sort of, about your experience.

DANIEL CARRIZOSA: Sure, I think, bouncing off what we just talked about, organizations in the community, like ASCO, are incredibly important to use and to form trust with the community, as has been described in some of these podcasts before.

But more importantly, sometimes with these access issues, we actually need to think of new and different ways of trying to engage and bring people into cancer care or screening. And one of the things we do here at Levine Cancer Institute, is we created the first mobile lung cancer screening unit in the country.

And we saw a large number of patients with transportation issues in the rural communities that were a little bit wary of coming to, either, a brick and mortar screening area or a cancer center, and we wanted to overcome that. So we actually made this mobile unit. We actually come into the community. We do community assessments to build that trust.

And we do multiple screenings, other than just lung cancer screening. We also do head and neck screening. We're starting prostate screening through blood work. Controversial, but it was something we're looking at. And on top of that, we're also basing research studies in the community on our, what we call, Lung Bus Initiative.

And so thinking outside of the box and trying to find other ways in your community that you can look. Can you do mobile units inside an urban community? Can you then provide other options? Do we do navigation? We're very big at navigation here Levine Cancer Institute. We have a Spanish-speaking navigator just for those patients. It actually overcomes communication issues. Trying to call in to the actual Cancer Center and again, comes back to building trust.

So I think it's important to, A, take your community boards and your focus groups, all of these areas-- talk with them. Find out what is important in your community, and what are those barriers? What are those obstacles? And then sit down and think about what can we do? And sometimes, aim for the stars.

DEEPAK VADEHRA: No, I think that, that is definitely a great example of out-of-the-box thinking and being able to take something that's vitally important to the community. And it definitely can have a great impact on our patients being able to access the things they need, and that's not just once cancer is diagnosed. That's before the diagnosis is made and for screening. So that's a really, really wonderful example that you gave there.

So we've talked a little bit about the barriers, what we see as issues, and some practical resources that providers can use to help. But at the crux of the issue, really, is policy, and what we need to do at that policy level to try and really impact and improve the availability of care for our patients.

So I'll start with Dr. Carrizosa. Dr. Carrizosa, what are some of the policy issues that you see as being central to improving access to care for our cancer patients?

DANIEL CARRIZOSA: Well I think, ultimately, when people start thinking about policy, they start getting very worried. And how am I going to change things? I'm just one person. And so, one person can move a mountain with the right, you know, ability or leverage. And so I think you start at your local community, and we can look at things like transportation. What type of transportation is available, or where can people go and get things they need?

I think in the last podcast, they discussed food islands and food deserts. And so therefore, can you use something where you're actually overcoming that, and then increase awareness for cancer screening or trials?

On top of that, then you have to go to state levels, and then you start talking about, well, can you increase broadband? Can you do other things that can actually help? Can you just make there more education happening?

And then, obviously, the national level, people get very worried, and they try to figure out, well, how am I going to change national policy? And one great way is actually through ASCO advocacy. And so they actually are working through different telehealth modernization acts and going every year to speak with our representatives to try and change and make things better for our patients.

So I don't think, you know, you need to feel like you need to become president to change these things. You can do it in your community, you could do it at your state, or you can use an organization, like ASCO, that's actually changing policy or helping to change policy.

DEEPAK VADEHRA: Now, those are all great points. Dr. Guerra, your thoughts about what you feel like the important policy issues that we have to tackle in order to help improve access to care.

CARMEN GUERRA: Yeah, I mean the big one is, of course, the insurance, access to insurance. And we've-- I agree, ASCO and the American Cancer Society, have lobbied for expansion of insurance, first through the Affordable Care Act but now through Medicaid expansions through the state. And I think that, that is absolutely vital for, not just cancer care, but all types of health care for our patients.

I would say, there's a second policy that was just recently approved and that is an opportunity for the clinical trial space. And that's a policy that will now mandate Medicaid, starting in January of 2022, to cover the routine costs associated with clinical trial participation. And in so doing, Medicaid will join private insurers and Medicare, which already do cover those clinical trial-related costs. And so I think with that, we'll have an opportunity, as well, to expand access to the potential treatments of the future to patients who want to participate in trials.

And then the last one I'll mention is that we have been working with a foundation, called the Lazarus Foundation. And what they do is they reimburse patients for the travel-related costs, as I mentioned earlier, and that includes lodging and travel.

But in order for us to be able to do that, we first had to lobby our state Senate to actually create a law that says that reimbursing individuals for those clinical trial participation costs is not undue influence. It's not coercion. And that bill passed unanimously, and similar bills have passed in states like California and Texas and Illinois and Wisconsin, and I think, most recently, Massachusetts, in January of this year.

But doing this state-by-state is not very efficient. And so what we also need is a federal policy with that type of language that allows, potentially, pharma and other sponsors to reimburse our patients for those travel-related costs associated with clinical trial participation.

DEEPAK VADEHRA: No, I think that's absolutely paramount to being able to provide the best care to patients. You know, I think, sometimes, that we forget that clinical trial doesn't mean everything is picked up, cost-wise, in a clinical trial. And there is definitely a standard of care part that somebody has to pay for, right? And I think that is one of the most important things. And I think it's great that we are able to bring awareness and have a sense of what we can do to help advocate for policy changes. And I think that was a great discussion.

I know we could talk about this forever. All three of us are very passionate about this. We're open to doing more sessions about it, but overall, thank you, Dr. Guerra and Dr. Carrizosa for joining us.

I wanted to just mention that as a compliment to this episode, listeners may also be interested in a podcast from cancer.net with Dr. Karen Winklefield. She provides a brief introduction about social determinants of health and the resources available for patients and their families and other tips about finding resources that are available to help navigate the challenges of traversing the cancer care system. So a link to that podcast will be found in the description of this episode.

And so once again, thank you, very much for joining us for this 10th episode of the ASCO Social Determinants of Health Series. To keep up with the latest episodes, please click "subscribe" and let us know what you think about the series by either leaving a review or by emailing us at [email protected]. Thanks, everyone, for their time today.

CARMEN GUERRA: Thank you.

DANIEL CARRIZOSA: Thank you.

LORI PIERCE: Thank you for listening to this week's episode of the ASCO eLearning weekly podcasts. To make us part of your weekly routine, click "subscribe." Let us know what you think by leaving a review. For more information, visit the Comprehensive eLearning Center at elearning.asco.org.