Nov 23, 2020
Dr. Pennell and Dr. James Hammock discuss the provision of oncologic services by Project Access safety net care coordination programs.
NATHAN PENNELL: Hello, and welcome to the latest JCO Oncology Practice podcast, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insight into the world of cancer care. You can find all recordings, including this one, at podcast.asco.org.
My name is Dr. Nate Pennell, medical oncologist at the Cleveland
Clinic and consulting editor for the JCO OP. I have no conflicts of
interest related to this podcast. And a complete list of
disclosures is available at the end of the podcast.
Today, I'd like to talk a little bit about the complexities of
providing cancer care for patients who are uninsured or
underinsured, which is a relatively large percentage of patients in
the US.
How do patients without insurance receive cancer care? One way is
through community programs, including a program called Project
Access, a care coordination program connecting patients to
specialty medical care at no or reduced cost, including, in some
instances, oncology care.
But how does it work? Who does it help? And how impactful are this
and other programs designed to obtain cancer care for low-income,
uninsured, and underserved patients? With me today to discuss this
topic is Dr. Jamey Hammock, a resident in internal medicine at the
University of Alabama Birmingham.
We'll be discussing the paper from he and his colleagues titled,
Oncologic Services Through Project Access and Other Safety Net Care
Coordination Programs, which was published online July 31, 2020 in
the JCO OP. Welcome, Jamey, and thank you for joining me on the
podcast.
JAMEY HAMMOCK: Hey. Thank you, very excited to be here. I did want
to say too that I do not have any conflicts of interest or
disclosures for this particular study.
NATHAN PENNELL: Why don't we start out by talking a little bit
about how big a problem it is for providing cancer care in
uninsured and underinsured patients in the US.
JAMEY HAMMOCK: It's an enormous problem. If you look at previous
studies, they've looked at patients who are underserved,
underinsured, or even uninsured with cancer. And these patients
actually typically present with later stage disease, they
experience delays in treatment, and ultimately have worse overall
survival compared to well-insured patients.
So just that alone tells you how big of a problem that this is. I
think that when you look at cancer care for underinsured and
uninsured, you have to break those things up. And you can't really
talk about it without talking about the Affordable Care Act.
So let's take uninsured patients, for example. If you look at
pre-Affordable Care Act and post-Affordable Care Act, there's a
great study in 2017 that really broke down these two groups, pre
and post. And what they found is with the Affordable Care Act, if
you are uninsured across any income level and you lived in a
Medicaid expansion state, the percentage of patients who were
uninsured decreased from about 5% to 2 and 1/2%. So it really cut
that percentage in half, which is pretty impressive.
And then if you look at low-income uninsured patients, because they
broke that down in the study, the percentage actually dropped from
around 10% to 3 and 1/2%. So It just shows you when you talk about
absolute numbers and then those percentages, how many individuals
are really affected that have a diagnosis of cancer and are
uninsured. And it gives you a little bit of insight of what
Medicaid expansion has done for that group.
And then I want to touch really quickly too on underinsured. So
basically underinsured patients, they don't have the means to get
the care that they need, even if they have insurance. That's
important.
And patients with Medicaid, for example, they have insurance, but
they have their own challenges. For example, there's been studies
showing that they have longer wait times to see some specialists.
It's harder to find a physician that takes patients with
Medicaid.
Lastly, these providers are so few and far between that sometimes
these patients are asked to drive very long distances to get the
care they need. And you're already talking about a disadvantaged
patient population who may not have the means to drive an hour away
to get to their visit.
NATHAN PENNELL: That sounds very challenging situation, even for
people who technically have health insurance, and still don't
necessarily have what they need to access care the way it should be
given.
Can you tell us a little bit about Project Access? I have to admit,
I had never heard of that before I read this paper. And it was a
fascinating program that something like this exists. Can you tell
us a little bit about it?
JAMEY HAMMOCK: Absolutely. So Project Access, first off, they do
great work. It's a nonprofit organization that really, really works
hard to try to get patients who are underinsured and uninsured
subspecialty care.
So I want to talk real briefly about the history first because I
think it helps you understand why Project Access came to be. I
think we need primary care pretty well in the US for patients who
are underinsured and uninsured. We have things called community
health centers, which are federal qualified health centers funded
by the government.
And they really do a good job providing primary care for patients
who cannot get it elsewhere. The problem is that a lot of these
patients ultimately will end up meaning a subspecialist. And there
does not exist a community health center for subspecialty care
that's funded by the government the way that community health
centers are.
One thing to address this was Medicaid expansion. Medicaid
expansion was supposed to increase the amount of patients who got
insurance and thus wouldn't be able to obtain the subspecialty care
that they need.
But we've already talked about some of the shortcomings of Medicaid
expansion, including not all states have done that, decided to
expand unfortunately. And if you're an undocumented immigrant,
unfortunately, you don't have access many times to government
programs.
So it doesn't do anything for those populations. There's been some
other strategies, Dr. Pennell, to try to address subspecialty care
in these populations, things like telehealth, and which you would
need the technology, things like subspecialists actually coming to
community health centers, let's say, every other Friday to see a
patient who needs a cardiologist or an oncologist.
But the problem with that is it's a little sporadic, it's
inconsistent. And sometimes these patients can't be that flexible
and come in the only day that the specialist is going to be there.
And so really, here enters Project Access to say, you know what,
let us negotiate-- pre-negotiate with subspecialists in the
community that surround these community health centers and find
subspecialists that agree to see x amount of patients a year.
And when it comes time to refer a patient to a specialist, you
contact us, and the work has been done. And so they sort of broker,
if you will, or negotiate between some specialists in primary care.
And they do a lot of the groundwork that it takes to get these
patients the subspecialty care they need to get the results of the
subspecialty visit back to the primary care. They do all of that
legwork. And so they really are an incredible, incredible
service.
I do want to mention, they're more of a local solution. So Project
Access Birmingham, for example, it serves the residents of
Jefferson County. It's not meant to be a statewide solution.
They're very good at serving the patients who are near, who are in
the county.
And in fact, a lot of them have requirements that you be a resident
of the county that they operate in. But they do a wonderful job
getting these patients the subspecialty care that they need.
NATHAN PENNELL: Well, I have more questions about Project Access.
But I think you're going to answer some of them when we start to
talk about your paper. So why don't you just start off by talking
us a little bit about, what was the purpose of the project that you
did and how did you design your quality project.
JAMEY HAMMOCK: This project started out as a genuine question I had
working as an intern in internal medicine. I would see patients
come into our hospital who were uninsured who had a malignancy or
cancer. And I would just ask, where do these patients get their
care. How are they suppose to get outpatient clinic follow-up?
So that's when I learned about Project Access locally here in
Birmingham. And as you just mentioned, I had a ton of questions. So
I actually went and met with Project Access and just asked them all
of these questions.
How do you work? How is your funding? Who do you see? What
specialties do you provide, et cetera, et cetera.
And I decided I wanted to really take an in-depth study and look at
our Project Access here in Birmingham. When I began doing the
literature review for that, I realized that there was not much out
there in terms of this Project Access model. I was told that many
other ones exist across the country, but there had not been a lot
done in the medical literature describing these places and the
wonderful work that they do. And so at that point, I began to zoom
out a little bit and look at all of the Project Access centers that
exist in the country.
NATHAN PENNELL: What did you find out when you started calling and
checking in with all of the different Project Access programs?
JAMEY HAMMOCK: To kind of bring things back to home, I really was
particularly interested in how these Project Access centers offer
oncology care because oncology care is a little bit different than
other subspecialties in terms of the resources needed to provide
such care. And my interest was, how do programs who are nonprofit
who are trying to work with underinsured/uninsured patients provide
care that require so much resources. So that was really one of my
objectives is to tailor my approach to oncology care, specifically,
while also describing the programs in general.
And so what I found was that out of about 30 programs that I found,
roughly 2/3 offered care medical oncologists. And then out of those
2/3, about 1/2 of those programs actually offered chemotherapy.
Fortunately, everyone offered radiographic studies, such as MRI,
CT, PET scan. So they could at least assist in diagnosing or
helping to diagnose suspicion for a malignancy. Obviously, that
doesn't include a biopsy, but could at least sort get the ball
rolling, if you will.
And then the other thing I discovered is, as I mentioned previously
in the podcast, there was a lot of heterogeneity between the
programs. So some programs offer transportation, some programs
offered interpreter services, while others did not. Some programs
required small co-pays. It seemed that everything was really
tailored to their respective local community and what worked best
for that community.
In terms of Medicaid expansion, which was sort of another thing we
were looking at with this study, what we found is about 2/3 of the
states that have not expanded Medicaid have a Project Access
center. And if you compare that to states that have expanded, only
about one third of those have Project Access centers.
And so our study suggests that the need for pro bono care is a
little higher in Medicaid non-expansion states. And I think that
that's intuitive. The percentage of uninsured patients with cancer
in a non-expansion state is as high as 13%, depending on what their
income is. And that's compared to about 2% to 3% in a state that's
expanded Medicaid. So those are drastically different numbers and
drastically different needs for patients, depending on if they
reside in a state that has expanded Medicaid.
NATHAN PENNELL: But it seems as though the difference between areas
that had programs that offered cancer care and those that didn't
probably revolve around whether they're able to find practitioners
who are willing to provide those services. And it looks like you
did some investigating of programs that did and did not offer
cancer care. So what were the differences between those?
JAMEY HAMMOCK: The next step of my project was to interview those
program coordinators of the centers who were not able to offer
medical oncology care. And three common themes emerged as I talked
to these program directors.
The first of those themes was cost. And I think that that's
intuitive. And it did not surprise me. Medical care is expensive.
Oncology care is expensive. And these programs, they're mostly
nonprofit and rely on donations and such.
And so the first barrier to offering this is cost. The patient see
the medical oncologist, and they prescribe chemotherapy, someone
has to pay for that chemotherapy.
And a lot of Project Access centers were not prepared to do that.
One in particular I spoke with, they had actually considered it.
And when they ran the numbers, it would account for over half of
their annual budget. So it just was not feasible.
The second barrier that emerged while I was talking to these
program directors was the concept of continuity and a longitudinal
commitment. So for example, if I'm a medical oncologist and I
decide that I want to take part in this and donate some of my
services, and I see a patient that has a new diagnosis of cancer,
and we treat the cancer, what happens if they relapse or what
happens in five years that they need a medical oncologist
again?
And I don't think many oncologists were comfortable committing to a
situation that had no clear end date. That's in contrast to a
patient that has COPD and the primary care physician is referring
them to a pulmonologist to get recommendations on maintenance
inhalers and what might work best for this patient. That's more of
a one and done visit.
The third area barrier emerged as I talked to these patients was
the concept of multiple physician buy-in. And so, as you're aware,
many patients that have a cancer may require care from multiple
subspecialties, whether that be surgical oncology, medical
oncology, radiology, diagnostic radiology, and even palliative
care. And so it really is a disservice to a patient if you can
offer them not the full scope of oncological care that they need. A
lot of Project Access centers were not comfortable providing some
of the care without providing all of the care, if that makes
sense.
NATHAN PENNELL: I mean, all of those make perfect sense. I mean,
although in some ways they relate partly back to the first issue,
which is that things cost more if they take a long time and have to
continue indefinitely over time.
So I'm curious, for the places that did offer chemotherapy, and
actually even though it was a relatively small percentage, it was
not trivial, chemotherapy is extremely expensive. As you mentioned,
some of them looked at it and decided it was going to be something
like half of their revenue for the year would be taken and
providing this. How did those that covered chemo actually cover the
cost of that?
JAMEY HAMMOCK: That's a great question. I had the same question.
And so what we found is that most of the programs who were able to
offer medical oncology and then services, and then taking the next
step to offer chemotherapy, they were affiliated with very large
hospital systems in the area.
So I'll give you an example. Here in Birmingham, our Project Access
center works with UAB. And they're able to offer these services
because UAB takes the baton, if you will, and carries the care
forward, offers that chemotherapy that is needed. So it's done
through large affiliated hospital systems. If that does not exist,
or if that relationship is not there, then what my study has shown
is that it's not feasible.
NATHAN PENNELL: Right. That makes sense. I mean, individual
oncology offices that order their own chemotherapy could probably
never afford to just donate that, whereas large systems have other
ways to do that. And of course, the large nonprofits also have to
give back to the community and may just consider that part of their
community service.
What's the next step to extend this? I guess, the larger question
is, it'd be great if perhaps everyone had health insurance. But
until that happens, what steps can be taken to provide something
like this more broadly?
JAMEY HAMMOCK: Yeah, so that is exactly what I was thinking.
Medicare for all is the answer. And ultimately I think we need a
centralized universal health insurance policy. But that's not the
topic of this podcast.
So until then, Project Access is stepping into the gap and doing
this great work. And I really wanted them to be recognized just as
a organization, broadly speaking, and then on an individual basis.
They are on the ground doing the hard work, making the phone calls,
making the partnerships, raising the money. They're really doing
incredible, incredible work for people out there who have no other
options.
It's not enough. As I mentioned earlier, these are local solutions
to statewide issues. If you look at Alabama, it's a non-expansion
state, unfortunately. The patients in Jefferson County here where
Birmingham is, they benefit from Public Access, but the patients in
Shelby County might not. So it's a statewide issue for the states
that don't have Medicaid expansion, and then even a small
population in the states that do.
One thing that we can do is we can look at the examples that have
been set by Project Access centers who have partnered with these
hospitals and collaborate and say, listen, we're a Project Access
center that has not had any luck. Please share with us how you were
successful in providing oncology care to your patients.
My hope is that this project provides a list where collaboration
can begin. And these places can learn from each other.
NATHAN PENNELL: Well, I think that this is fantastic. And I'm
really happy that we're going to be able to highlight Project
Access and your manuscript so more people are aware of this and
hopefully can start shining lights on their own local Project
Access programs.
JAMEY HAMMOCK: Right, right.
NATHAN PENNELL: Well, Jamey, thank you so much for joining me on
the podcast today.
JAMEY HAMMOCK: Thank you for having me. I thoroughly enjoyed it and
love talking about Project Access and access to care. And I really
appreciate it.
NATHAN PENNELL: Until next time, I also want to thank our listeners
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The full text of this paper is available online at
ascohubs.org/journal/op. This is Dr. Nate Pennell for the JCO
Oncology Practice signing off.
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