May 28, 2019
In the latest ASCO in Action Podcast, ASCO’s President, Dr. Monica Bertagnolli, FACS, FASCO sat down with ASCO CEO Dr. Clifford A. Hudis to discuss cancer care in rural America. Improving cancer care access in rural America has been a signature issue in Dr. Bertagnolli’s presidential year, during which she has held town halls in communities across the country to discuss the real-world challenges facing patients in rural America and their cancer care teams. The podcast reveals some of Dr. Bertagnolli’s learnings from her town halls, and she explains what rural cancer care in America looks like today and offers steps to improve rural cancer outcomes in the future.
The purpose of this podcast is to educate and to 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, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Welcome to this ASCO in Action podcast. This is ASCO's monthly podcast series where we explore policy and practice issues that impact oncologists, the entire cancer care delivery team, and the individuals we care for, people with cancer. My name is Clifford Hudis, and I'm the CEO of ASCO, as well as the host of the ASCO in Action podcast series.
For today's podcast, I am delighted to have with me today ASCO's current president, Dr. Monica Bertagnolli. And we're going to be talking about cancer care in rural America. Dr. Bertagnolli has long been a champion for improving access to cancer care in rural America, and it has been a signature issue for her throughout her presidency at ASCO. Indeed, she has held town halls in communities across the US to discuss the real-world challenges that face patients and the entire care team in these locations.
She shared some of those learnings recently at ASCO's State of Cancer Care in America event, which we entitled Closing the Rural Cancer Care Gap. Today, we're going to talk about what rural cancer care looks like in America and how we can take steps to improve outcomes in these many communities. Dr. Bertagnolli, welcome and thank you for joining me today to discuss this important topic.
It's great to be here, Cliff.
So, to kick off our discussion, I'm going to ask you to describe briefly some of the disparities that currently exist between patients with cancer in rural areas compared to those who live in urban or suburban areas.
Well, just imagine that you live in a town where most things are certainly like they are anywhere else, except the hospital is a very small one. The medical care is a primary care physician and maybe a general surgeon. They can do X-rays. They can diagnose most things. But if you have a need for anything beyond the basics of care, you have to drive three, four, six hours in order to reach it.
I think, throughout our country, we really do have a health care system that gets to most people. But particularly when it's an issue of specialty care, such as a cancer diagnosis, that's not always available.
Finally, there's a lot of our country that fits in this category. By the one government agency that looks at these things, the Federal Office for Rural Health Policy, 84% of the country, of the geographic area of the United States, is a rural location. And in that 84%, 18% of the population lives. So, we think, in oncology, it's very important that we understand more about the people who live in these locations so that we can figure out how to get them what they need.
So, starting in a quantitative way is an interesting mathematical representation, that about a fifth of the country in population is distributed over more than 4/5 of the landmass. And I think that's a way of visualizing the lack of density. But there are common challenges that patients in rural areas face that go beyond just distance and geography. What are some of those that you have uncovered and thought about this year?
You know, it's important not to overgeneralize, because certainly, there are people from every single socioeconomic status and walk of life that live in rural locations, no question. But when you go into big generalities, people who live in rural locations tend to have less education level. They tend to be less affluent. They tend to have more risky behaviors, more smoking and alcohol use. And some of the things that we know are associated with cancer development in general seem to be more predominant in rural locations. And finally, citizens who live in rural locations are, again, generally less likely than those who live in urban locations to have health insurance.
Yeah, so that's a long list of challenges that are only compounded by the geographic challenges that we spoke about before. We go and look at the most recent data that I think you shared at ASCO's State of Cancer Care in America. As we noted a moment ago, just under a fifth of the US population lives in these rural areas. But going one step further, not focusing on landmass but now focusing on the oncology workforce, fewer than 10%-- in fact, we think it's about 7%-- of oncologists practice in those areas. So, on the one hand, there's a lower distribution of American citizens into that space, but there's even proportionately a lower distribution of oncologists. How does this impact patients with cancer?
Well, it's a little bit of what I was referring to before. Going to see a specialist when you've got a disease such as cancer, where knowledge outside of the usual primary care physician's scope is really important, and by the fact that such a small percentage of oncologists live in rural areas and the fact that, in rural areas, distance is so great between various locations means that patients who have cancer just don't have access to the experts that they need.
To get that access, they have to travel. And there's not really public transportation that works between cities that might be 100 miles apart in some rural locations. So, the single greatest issue I hear from many patients in rural locations is the challenge of distance.
Yeah, it's really amazing. So of course, as I'm sure we're going to talk about, at ASCO, we don't enumerate these problems just to make a list. We do this to try to take action, to do something about it. And I guess the first question, and I know one that you've started to think about with ASCO volunteers and staff, is the fundamental one. How can we support the existing infrastructure, the existing oncology workforce in those areas? And taking it a step further, what can we do to possibly expand this workforce, at least bring it to parity with the population distribution?
We were really fortunate to have a very talented team of physicians within ASCO take this task to heart over the last year. And they formed a task force to look at issues of rural access to cancer care. It was led by Dr. Bhatia, who's from the University of Alabama-- Birmingham. And they produced a really great roadmap for us. The one area you're alluding to now is workforce. How do we get care providers? Or how do we get our patients in rural locations access to the care providers that they need?
There's a couple of different approaches the task force identified. The first is to think about education opportunities for rural health care providers. For example, one of the gaps that the task force identified is people with knowledge for the particular needs of cancer patients who live in rural locations.
Well, knowledge is something that ASCO is-- that's our core mission to provide. And so, the task force brought together a whole list of things like expanding ASCO meetings to locations throughout the United States, making it easier for rural care providers to attend, designing and implementing virtual tumor boards. Telephones are everywhere, either web-based or telephone-based communication networks that will allow those taking care of patients in rural locations to get information that they need specifically and support them there.
And then finally, every community is different. Every rural location is different. And one of the things we realized we needed to do as an organization is reach out more to everyone and just find out, what are the individual needs of our care providers?
So, in a way, you're raising the issue of complexity in terms of the built and available infrastructure. But that's paralleled, as was pointed out in the State of Cancer Care in America event, by complexity in terms of our understanding of cancer and how we treat it. So, what challenges does this increased complexity bring to those oncologists and other clinicians who care for patients in rural areas. That is, is it different for them or just more of the same?
So, I can give you some snapshots, because I visited seven different rural communities during my year as ASCO president. And some of the common things all have to do with distance and have to do with access to specialists. But there are other specific issues to each location. Let me just give you some quick examples.
In South Dakota, near the Pine Ridge Indian Reservation, there was a great need for programs that could help address cancer control, screening for cancer, smoking cessation, education for diet and overall wellness, and providers who could engage with the Native American population in order to educate the population and provide those services.
At the complete other end of the spectrum for that community, there was no access whatsoever to palliative care services. So the oncologists, who were about 100 miles away in Rapid City, were struggling with, what do we do when we have an elderly resident of Pine Ridge who has a terminal illness, and we don't have the ability to support them to get palliative care?
And what the community is doing is partnering with health providers that work through the tribal council to provide these services. But when someone needs advice, needs a consult, they have to have someone to reach out to. And that is networking through the teams in Rapid City. That's the way they're beginning to solve those problems, kind of a regional network of support and help.
Another quick example I can give you is in Appalachia. There is a rural community I visited with Electra Paskett in the Appalachian counties of Ohio, where, again, it's about a two-hour drive to the nearest large cancer center. There, it's a combination of regional hospitals who provide services to cancer patients and the Ohio State University, where the most acute patients with very high-level specialty needs can go for consultation.
A patient, let's say, with acute leukemia who's from rural Appalachia and needs to be treated would be transported to Ohio State. Others with more routine care are cared for by providers who are oncologists locally.
So, it's different in every location. I think the underlying theme is collaboration with whatever resources are closest, and finally, the ability to have people who really go deep into the community and problem solve. They all kind of have the whatever-it-takes attitude and come up with very creative solutions particular to the patients that they're serving.
It sounds like, as you described all that, that it's awareness, knowing your limits, and then it's networks and connections that really are the pieces of the solution. Does that make sense to you?
Yeah, that's very well said. And one size absolutely does not fit all. The other thing that you notice is, it's about the whole community, not just the individual patients and their doctor. I heard so many stories of neighbors helping out, somebody arranging to drive someone who was ill to a doctor's visit hours away, neighbors being willing to take care of-- one situation was where the neighbors chipped in to take care of an entire family while the mother was away having radiation therapy for her cancer at a city two hours away. These are the kinds of special challenges that you see in rural locations.
Yeah, I mean, you're really just drifting back and forth in and out of conventional, mainstream medical system infrastructure into the broader community. As I think about that, everybody who's listening to this, of course, knows you because of your years of leadership in the realm of clinical research, which is another component of all this we haven't yet touched on. But often, access to clinical research is a surrogate marker for access to high-quality care-- not always, but often-- and it's certainly an indicator of access to cutting-edge care. So I wonder if you want to talk a little bit about access to clinical research in these disadvantaged rural communities?
I'm so glad you brought that up, Cliff, because we're completely in the dark without research. Like I said, I've gone around and visited these various locations and realized that even though I grew up in a rural area, very rural area of Wyoming, when I visited rural Appalachia and rural Texas and rural even North Dakota, which is very similar to Wyoming, I realized that I really couldn't fully understand the challenges in those different locations. And the only way to understand what patients really need, what they're facing, and how to best help is by research.
It's a way-- in this, I'm saying that one of the most important things we can offer our cancer patients everywhere is the ability to have their challenges addressed by research so that we truly understand them. That's the only way we're ever going to make progress.
So, one of the things that the US government, I think, has done well is the National Cancer Institute has a network of research groups under the National Clinical Trials Network that are centered within community practices and community locations. It's the National Clinical Oncology Research Program, or the NCORP. And almost all of the NCORP sites spread throughout the United States have at least significant outreach components into rural communities for cancer research.
Finally, the US Comprehensive Cancer Centers also have a really important mandate to serve their community, and their community for most of the Comprehensive Cancer Centers includes rural locations. So, it's a hub-and-spoke model that's been developed for research. I won't say that it's perfect, because it certainly could be broader and more comprehensive. But it's a very, very good start, and right now, it definitely covers a large portion of rural America.
And I'm just curious. Is it too soon, or do we yet have data that shows that there's been an uptick or a change in registration out of those rural communities to clinical research trials?
We do know that we have more-- that when you look at the National Clinical Trials Network participants, the patients who enroll on those studies, that the proportion from rural locations is higher than it is in most clinical trials that are done by, say, the industry. So we do definitely know that it's been helpful.
We still don't have the numbers of rural residents in clinical research that meet their population needs. I mean, the patients who live in rural locations are still vastly underrepresented in clinical research. But this goes along with the multifactorial issues of being in a rural location. We know that it's harder for uninsured patients to be in clinical trials. It's harder for anyone who has to travel to participate in clinical trials. And it's certainly harder for individuals of lower socioeconomic status to be in trials. So we've still got a long way to go.
Well, you raised the one that's always in these discussions, the 800-pound gorilla, and that's insurance. Residents in rural areas are less likely to have employer-sponsored health insurance. They're more likely to live in states that have not chosen to expand Medicaid. And the issue, of course, is that when we don't have adequate insurance, that puts a strain on the system in terms of access to care and reimbursement to those who are in the area trying to care for them. So how does that reality affect patients? Is that just another layer on top of everything we've said? Or are there specific places where you see that impact?
Oh, it's another part of this very multifactorial problem of citizens living in rural locations. And it translates into something very, very real. So one of the best data that I've seen recently is that from 2011 to 2015-- I believe this is the last time it was looked at comprehensively-- the CDC looked at death rates from cancer and compared death rates in cancer between urban and rural areas. And the death rates in rural areas were 180 deaths per 100,000 patients, persons, people-- sorry-- to cancer compared to urban areas where it was 158.
So there's a significantly higher death rate from cancer for citizens who live in rural areas. So it's not just access to research. It's not just the availability of specialists. It truly is access to care in a way that translates into survival.
Well, as I mentioned earlier, enumerating all of these challenges is just a first step. And I want to talk a little bit about what we can do to start to address them. Before I make that pivot with you, I just want to make sure that we don't leave anything important behind.
You've been in communities all around the country. You've interacted with patients, other caregivers, oncologists about the challenges of delivering care in rural communities, and you've already detailed a lot of this. Is there anything that we haven't touched on that you want to essentially put on the board before we pivot to solutions?
Only that the overwhelmingly positive thing I found in all of my travels is that the communities-- the rural communities-- truly value the interaction with their care providers. And it is very moving to see how medical care providers in a rural setting are absolutely essential components of the community.
We take it for granted when you live in an urban location that if you have appendicitis or you have a cancer diagnosis, somebody's going to be there to take care of you. That is never taken for granted in these rural locations. And it's very moving and very special as a physician to be able to witness that.
Well, so we'd like to have more of those places, in a sense, where they're lucky enough to take care for granted. And to that end, last fall, ASCO convened a group of our volunteers and board members-- you alluded to this already-- to take a closer look at the issue of rural cancer care. The group identified four primary areas where ASCO could better support rural oncology providers and their patients. And these included-- you touched on this already-- provider education and training, but also workforce development, a tighter embrace, if you will, of tele-oncology, and a focus on rural cancer research.
Further, as you know, during the recent State of Cancer Care in America event, we kicked it off with an announcement that ASCO was convening a Rural Cancer Care Task Force. This is different from the board task force earlier in the year. This one is going to focus on building on that work and making recommendations for specific tools and projects that we can launch.
So knowing what a priority this has been for you throughout your presidential year, I have a question for you, which is, where do you think ASCO can best serve patients in rural areas? That is, what resources would be most useful to our members, the providers who are serving those populations?
So I think ASCO is in a wonderful position to be in a forum, to listen to and enlist the help of those providers who really work with patients from rural locations, and to be able to hear from them directly what they need to better support their patients.
In South Dakota, I heard it was better support for palliative care and better support for access to preventive cancer prevention and cancer control programs. In Laredo, Texas, it was about figuring out how to get people health insurance coverage for the very expensive medications that were involved in cancer care. In other places, it was about being able to have someone available for consultation when they needed it, either by a telemedicine approach or by something as simple as being able to know exactly who to pick up the phone and contact when someone on the front lines had a specific patient need.
Finally, there are a lot of problem-solving strategies that certain providers and provider groups are implementing that are working well for them, but they seem to be still in a bit of a vacuum. Getting providers from across the United States to be able to come together and talk about these issues and share what's working for them, I think, will be very powerful for everyone else in this field.
It sounds like at least part of this is something I've taken to calling ORFA, which is organized resources for access. That is fundamentally what I think we find is a repetitive, recurrent need across all communities, but maybe even more pointed in rural communities in America. Is that fair?
I think that's very fair. And I think there are going to be some things that are truly unique to the rural locations, that are decisions that are going to be made that will be different than medicine practiced in more urban locations. For example, there are different ways to deliver radiation therapy. That may be a trade-off that someone who lives in a very rural location will pick rather than someone who lives in an urban area, where they have the ability to have five weeks of radiation therapy.
Some of the brachytherapy approaches, for instance, to breast cancer or to prostate cancer would be more-- might be chosen by patients who live in rural locations more than they would someone who lives in an urban area. I mean, there are even very specific modalities such as this that we may end up seeing practiced differently in a rural versus an urban setting.
Well, I can't thank you enough for taking the time to talk to me and enlighten our listeners on the topic of cancer care in rural America. As I've remarked throughout the year, your presidential year has been both consequential and engaging. And you manage to not only focus on, I think, critical problems, but also on plausible solutions. And I think that's the mark of a real leader, and we're very grateful to you for that.
Cliff, thank you so much. It's been a great honor, and I really enjoyed talking to you today.
I want to encourage our listeners to go and watch a recording of the State of Cancer Care in America event Closing the Rural Cancer Gap. The full-length recording is available on our Facebook page, or you can find it directly at ASCO.org/stateofcancercare. Until next time, thank you for listening to this ASCO in Action podcast.