Aug 6, 2019
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Lisa Lacasse, president of the American Cancer Society Cancer Advocacy Network, speaks passionately about the critical importance of advocacy and ACS CAN’s partnership with ASCO in reducing the cancer burden, in latest AiA podcast with host ASCO CEO Dr. Clifford Hudis.
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TRANSCRIPT
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Clifford Hudis: Welcome to this ASCO in Action
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 insights into the world of cancer
care. You can find all of the shows, including this one, at
podcast.asco.org. This ASCO in Action Podcast is ASCO's 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 really pleased to have Lisa Lacasse, president of the American
Cancer Society Cancer Action Network, or ACS CAN, as my guest.
Welcome, Lisa.
Lisa Lacasse: Thanks so much, Cliff. It's really great to be with you today. I appreciate the invitation.
CH: Well, I'm really delighted that you could join me today for this discussion. And I think there are probably hundreds of topics that you and I could discuss. But I want to start with the big picture first. The American Cancer Society, of course, is a very well-known, nationwide organization with a mission of saving lives and leading the fight for a world without cancer. Can you tell our guests about the American Cancer Society Cancer Action Network, ACS CAN? What's the relationship with ACS itself? And what exactly does ACS CAN do?
LL: So thanks. That's a great question, Cliff.
So many are very familiar with the American Cancer Society, which
is a large, old organization that attacks cancer from every angle.
The Society works to advance breakthroughs in research, treatment
for patients, providing direction and information to help people
manage their cancer care, and also mobilizes volunteers at the
community level to really support patients in their fight against
cancer.
But we know that the fight to end cancer doesn't just happen in a
doctor's office or a scientific lab. It really requires the
government and all elected officials to join us to impact the
disease. And so that effort to engage government requires advocacy.
And that's where the American Cancer Society Cancer Action Network,
ACS CAN, steps in. And we are the advocacy affiliate of the
American Cancer Society.
So ACS CAN simply urges lawmakers and rallies all of our community
partners to lead in the fight against cancer. And together-- the
American Cancer Society and the American Cancer Society Cancer
Action Network-- although we're two independent organizations,
we're working towards the same mission. However, ACS CAN uses
different but complementary set of tools.
So we obviously resemble ACS in a lot of important ways. We're both
nonprofits. We are both absolutely, obviously evidence-based. And
we're both supported by a vast army of volunteers. And we all focus
on the ultimate goal of eliminating cancer as a major health
problem.
But ACS CAN advances this mission using tools that aren't fully
available to ACS. One, an electoral program called Cancer Votes,
which is really an effort to educate voters on important issues to
cancer.
And we also do a significant amount of lobbying. And that's not
just in Washington DC, but in all 50 state capitals and many, many
localities. And because of the breadth of that direct lobbying,
that's often beyond what's allowable for a charity.
So back in 2001, which is-- we're coming up on our 20th
anniversary, which is very exciting-- the American Cancer Society
Board really recognized that if we were going to achieve our goal
to reduce the cancer mission, we had to do that by improving public
policy. And so they decided to create ACS CAN.
And my job as president is really to empower this huge network of
grassroots advocates across the country. And with their staff
partners-- we have about 200 people that work for ACS CAN-- every
single day, they're imploring their elected officials, working with
administrative officials to impact the cancer burden.
CH: Well, I mean, that's a remarkable
portfolio. And I would say, obviously that ACS CAN has been a key
ally and a natural partner for us here at ASCO in our own mission
to conquer cancer through research, education, and the promotion of
the highest quality patient care.
I know that ASCO shares many advocacy priorities with your
organization, including our strong support for robust federal
funding for cancer research, improving patient access to clinical
trials, and addressing, among other things, the alarming rise in
youth tobacco use-- something listeners will recall, we discussed
in detail with Scott Gottlieb last year. So it's really a privilege
to be able to talk to you about all of this.
One of the efforts I think that many of our listeners would want to
hear more about would be the Medicare Part D, six protected classes
issue. I think earlier this year, ACS CAN mounted a very public
outcry and a very visible advertising campaign against a proposal
that would have potentially impeded or limited access to lifesaving
drugs within the Medicare Part D program, specifically in the six
protected classes.
And we were proud to join your campaign. We at ASCO couldn't have
been more pleased than we were with the impact. Can you explain why
this effort was so necessary and talk to our listeners a little bit
about how it turned out?
LL: Absolutely. And I do want to say thank you
to ASCO's partnership on this issue. It was really important. So
this is a regulatory issue. As you mentioned, it's colloquially
referenced as the "six protected classes." But that's policy that
was established more than a decade ago to make sure that Medicare
beneficiaries had access to innovative therapies.
So really, the concept's fairly simple. If you're a health insurer
and you provide a Medicare Part D plan to a Medicare beneficiary--
so you sell a Part D plan, which is a prescription drug plan-- you
are, by definition, required to cover virtually all drug therapies
that treat cancer, epilepsy, HIV/AIDS, mental illness, and organ
transplant.
And unfortunately, late last year, the Department of Health and
Human Services proposed to alter that rule. And if the rule that
they had put forth had been finalized, we believe it would have
dramatically impacted access and affordability to critical
medications for cancer patients who are part of the Medicare Part D
program.
So the proposal, although it was put forth as an effort to save
Medicare money-- programmatically to save Medicare money-- we were
really concerned that that approach would potentially have the
exact opposite effect. We were worried that it would result in
raising costs in other parts of the Medicare program and absolutely
shifting costs to patients.
So that certainly would have happened, because the proposed changes
included, for example, excluding drugs from formularies or
increasing the use of utilization management tools, such as step
therapy. And we know that for a disease like cancer, specific drugs
are very important for specific cancers.
So if beneficiaries were unable to access their prescription drug
that was most medically appropriate for them, they certainly would
incur higher costs because it wouldn't be a covered medication. But
we also were worried that they wouldn't get physician services, or
they would need additional physician services because they weren't
getting the right medication, and/or they would end up in the
emergency room, which is all things that we know happen if you're
not on the right drug regime for your cancer diagnosis.
So had these proposed changes gone into effect, it really could
have been devastating for cancer patients and survivors. And
because of that, once we analyzed the proposed rule, we launched a
multi-pronged campaign. It's one of the things that we take a lot
of pride in, and we're able to address these issues in many
different ways.
But one of the most powerful is working in coalition. So ACS CAN
and ASCO were joined by nearly 60 other patient and provider
organizations. And we ran an advertising campaign-- a very visible
advertising campaign. We did a Twitter Day of Action, where all of
our volunteer advocates from all of our organizations directed
their concern to HHS Secretary Alex Azar. We know that he heard
from us. We got confirmation of that.
And additionally, ACS CAN and ASCO were among more than 23 patient
provider organizations actually went to the Hill for a day, did a
lobby day on the hill-- again, making sure that our legislators,
congressional members really understood the patient perspective of
this proposed policy change.
And then finally, ACS CAN did something that we actually don't do
that often, which is we shot and ran some television spots. We
really wanted to make sure that we were coming at this issue from
many different directions because we felt it was so critical to our
cancer patients and their need to have access to innovative
drugs.
So once we went through all of that, we were really proud and, more
importantly, thrilled for our cancer patients. The final rule did
not include all the proposed changes to the six protected classes
that were put forth. These plans are not allowed to impose
additional utilization management techniques such as prior
authorization and step therapy if a cancer patient already has an
established Medicaid regimen.
And we really think-- we know, actually-- that HHS and the White
House, hearing from doctors and patients and survivors in such an
incredible coalition made the agency realize that this could be a
very problematic rule. And so I want to, again, Cliff, say thank
you to ASCO providing such a critical perspective from your
physicians, your oncologists. They know firsthand what these
barriers and delays can mean. And the partnership really, really
worked. And we're proud of the outcome of that campaign.
CH: Well, again, we want to applaud ACS CAN for
your bold leadership on the issue and the wonderful success. It
does show the tremendous impact that we can have with a unified,
collective voice on behalf of people with cancer.
So another issue that I guess, in a way, relates at least
tangentially to this-- and I know is near and dear to your heart--
is federal funding, in this case for cancer research and for
clinical trials. But before you started ACS CAN, which I think is
more than a decade ago, as I understand correctly, you were the CFO
of the NIH's Cancer Research Center. So how did that experience
shape your understanding of the federal research infrastructure and
the need for increased funding for cancer research at the federal
level?
LL: So it's a great question. And it is true. I
was at NIH for nearly a decade, a decade ago. I have been at ACS
CAN for just a little over 10 years now. And NIH is really a
fascinating place to work. And I learned so much when I was on the
NIH campus just up the road in Bethesda.
And I would say most importantly and what has been most impactful
is really through that time understanding that the pathways to
discovery, particularly in cancer, are very long, and they're very
complex, and they are extremely resource-intensive. And all parts
of that journey-- every single step has to work well together from
the very early scientific discoveries at the bench to ultimately
bringing those discoveries to the bedside of patients.
And the government has a critical role to play in that journey.
Because a lot of that initial science, as you know, is risky, you
really have to take a long view. And the very, very early clinical
trials, which is what the clinical center focused on-- really phase
0 and phase 1, a few phase 2 trials, natural history trials-- those
can only be done in certain types of facilities that have a lot of
resources like the NIH Clinical Research Center.
And then the other thing that I think about often as I'm doing my
work is the many, many patients that I met while I was there at the
Clinical Center. We had a 200-bed hospital, a huge outpatient
center. And they really are the true heroes. I really think a lot
about the many patients who knew that they were enrolling on trials
that may or may not benefit them, but would potentially move us
forward in the fight against cancer.
And so I'm very passionate about the resources that are needed for
NIH and NCI. And a lot of that is driven because of this, what I
consider, a really transformative experience for me while I was at
NIH.
CH: Well, many listeners will remember that I
occasionally talk about when I was president of ASCO back in 2013
and '14. And that was the end of an era-- about a decade-long era--
where we had flat funding in dollars. And that, of course, with
inflation meant a relative loss of purchasing power and missed
opportunities. And this really rallied our broad community.
And this is a bit of a little detour, but one of the things that
ultimately helped, I think, increase the enthusiasm of many of our
members for political engagement and reduce some of our cynicism is
that the last few years, we've seen, instead, a steady rise and
consistent support for federal funding. And it's crossed party
lines. It's clearly been bipartisan.
I wonder-- I mean, we like to take some credit for it-- but, of
course, I was one of thousands of people knocking on doors and one
of many thousands of people repeating the message. But why do you
think that we currently are enjoying a period of such steady and
reliable bipartisan support? And as you answer that, I would ask
you to think about the future. Do you think that support can
continue?
LL: Yeah. Look, I think it's a really important
question. And I do think that one of the important things that we
collectively lend to this discussion is a bipartisan lens. I mean,
cancer does not discriminate. It is not political. We ran a big
campaign, as you might remember, a few years ago that we dubbed the
"One Degree Campaign," because if you are not your own cancer
story, you are certainly not more than one degree away from a
cancer story.
I think there are a couple reasons why we've been able to rally
support from a bipartisan standpoint. One is, I do think that
people can clearly understand the important role government has in
the fight against cancer.
But also, just that our patients are very compelling storytellers.
They are there, talking to their lawmakers on both sides of the
aisle in Washington DC when they're in district about their
experiences-- their own, personal experiences about their fight or
their engagement with someone else in the fight against cancer, and
how critically important federal investment is in what their
experience has been.
And I do think that when members hear those stories from people
who've been directly impacted, or maybe they've experienced it
themselves or seen it themselves, it's compelling. I think
collectively, as a community, we're getting better at continuing to
show the incredible impact that NIH has.
And the statistics sort of bear this out, right. There has been
incredible progress in diagnosing cancer, treating cancer, caring
for people who have cancer. And in the last 50 years, every major
medical breakthrough in cancer can be traced back to NIH and the
NCI.
So I think when we tell those stories, we remind so many people
that people that they love are alive today because they have helped
fuel that discovery. And they do that by appropriating money for
NCI.
And so to that end, we would like to call it an evergreen issue.
Getting appropriations every year from Congress is something that
we can never let up on. It is a sustained effort. And we must
continue to really coordinate well among partners-- so between ACS
CAN and ASCO and many, many of our cancer partners-- so that we're
sure to be bringing a concerted, collective voice to this
issue.
And we certainly know, because we see it every day in our political
lives, that Congress definitely has a habit of reacting to the
latest crisis. And so we want to make sure that we don't want
cancer to continue to be such a huge crisis. We want continued
forward movement. And that's why it's so critical that we bring the
patient voice to this issue.
We are good partners, again, united with ASCO, ACS CAN, and others
in One Voice Against Cancer, which we fondly call "OVAC," which is
our coalition that continues to make the case on a regular basis to
lawmakers and their staff. But I'm really seeing-- and, Cliff, I
know you probably have through your career, as well-- but if we get
the patient voice to an elected official, it's not hard for them to
support our cause and to understand why these funds to NIH are so
critically important to changing the face of this disease.
CH: Well, one of the ways-- I mean, one of the
most tangible, obvious ways that we do that and the patients see
it, of course, is through clinical trials. Those advances you
describe at the NIH have to lead to clinical trials before they can
actually change a standard of care.
And this is another policy area where we've been working together,
in particular advocating for the passage of the Clinical Trial Act.
This is legislation that would federally require Medicaid to cover
those routine care costs that come with participating in clinical
trials, which would bring Medicaid into line with every other major
payer, including Medicare, for example.
Can you talk a little bit about what impact this bill would have on
patients with cancer? And I ask that, reminding everybody that we
will shortly post another podcast where we discuss this in detail
with Melissa Dillmon, who is the current chair of our Government
Relations Committee and on the front lines.
LL: And a shout-out to Dr. Dillmon, because she
actually worked with us on a congressional briefing around the six
protected classes. And she is a fabulous leader. So congratulations
for getting her to work with you. Because her voice needs to be
heard in these fights, as well. And I want to do a shout-out to
ASCO for your leadership in this particular piece of
legislation.
So specifically with Medicaid-- I mean, Medicaid by definition
obviously serves people facing financial challenges. So right now,
it is, as you mentioned, the only major category of insurance where
routine costs in cancer clinical trials aren't covered.
And so just to be clear, there's the experimental part of a cancer
trial, but there are also maybe just regular standard of care that
a patient would be getting even if they weren't enrolled in the
trial. And those are the costs that you're talking about in this
piece of legislation, and that when we talk about the financial
challenges of enrolling on a clinical trial, it's not the
experimental part of the trial itself. It's really the care around
that.
So currently, only 12 states and the District of Columbia have
state requirements that Medicaid cover these routine trial costs.
So that means 38 other states, if a patient wants to enroll in a
trial, they're responsible for 100% of that routine costs out of
pocket, which we know very few Americans could afford, much less
those on a limited incomes.
So to us, we see this as essentially a ban on participation by
Medicaid patients, which really doesn't make any sense since, by
definition, those routine costs would certainly be covered if they
were seeing a doctor just on a regular visit. And we also don't
want to exclude this whole cohort of millions of patients that we
want to have participate in these clinical trials, since that is a
critical success factor, as you noted, getting discovery out there
that can impact a cancer diagnosis.
CH: Well, while we're on the topic of Medicaid-- and here we were focusing on coverage of its beneficiaries' participation in clinical research-- but can you talk a little bit about your Medicaid Covers Us campaign? How does that relate to this, if it does at all? Or what direction does that take us in?
LL: So Medicaid Covers Us-- I really hope that
people that are listening to the podcast can take a minute and go
to our URL, which is medicaidcoversus.org. And this is a campaign
that we launched last year.
And although ACS CAN has a very long history of advocating for
Medicaid, Medicaid is just an insurance coverage, right. It just
happens to cover a lower level of income for patients. But really,
the focus of that program is to improve access to screening,
diagnosis, treatment, which happens if you have insurance
coverage.
So when the Affordable Care Act was passed, there was an
opportunity to expand Medicaid, although it is optional for a
state. ACS CAN has worked hard with many partners to actively
advocate for expanding and really educating the public on how
important Medicaid is in the insurance landscape.
And so part of that-- what we realized is that we really wanted to
make sure that people understood what Medicaid truly is. And one of
the ways we are doing that is through this campaign.
And this is a public education campaign that's really trying to
create a dialogue for everyone who touches health care, which is
really an entire community, to understand the importance. If you
want to achieve a healthy community, healthy economy, health care
is a really important part of that. And Medicaid plays an important
role in health care.
So we decided to pursue kind of this larger educational effort, and
it's really been an exciting project. We have gotten a lot of
opportunity to have many members of a community have this
conversation. And we're excited about the role that we're able to
play in continuing to make sure that people understand that quality
cancer care needs access to insurance. And access to insurance for
many, many people means access to Medicaid.
CH: So really, in the last few moments we've talked about Medicaid from two perspectives. One is coverage for a substantial bloc of Americans at about 42 million, if memory serves me correctly. And the second is specific coverage of a vulnerable subset that is those beneficiaries who need access to clinical research for advanced cancer or cancer at all. Is that a fair summary of the two prongs of this effort?
LL: 100%, 100%. And I think that we want
comprehensive coverage. And Medicaid provides, again, a lifeline
for so many patients. And we really want to work to address a
couple of big challenges right now in Medicaid.
One is that there still 15 states that have not fully expanded
their Medicaid program. So that means that there are low-income
parents, adults that are not able to access affordable health
insurance. And we've seen through a significant amount of research
that we've done on our end that there are a lot of cancer patients
in the Medicaid program. So that program itself is very, very
important to our mission.
And then another issue that we're paying a lot of attention to and
trying to make sure through ACS CAN that we're having influence on,
our policy changes that are creating some barriers if you actually
are in Medicaid-- things like what are known as 1115 waivers that
are introducing things like work requirements, or maybe some other
types of barriers like a lockout period that really create a
significant barrier in a pathway for patients to make sure they
continue to be able to seek care.
So we want to make sure that for all Medicaid enrollees with
serious conditions like cancer, that they're able, one, to continue
to work-- if they are unable to work, though, that they don't lose
their coverage. So we are continuing to work on many, many
components of Medicaid, so both the public education and awareness,
but also a lot of these very direct lobbying issues.
CH: You know what's interesting, I was thinking
as you described all that, the ability to understand the system and
then help to constructively shape it is, in fact, the reason--
personally, I can tell you-- that I was so interested in making the
career change to go from breast cancer doctor to ASCO CEO. You've
been at ACS CAN in total, as we heard already, for just about a
dozen years. But recently you stepped into the role of president
for the organization.
So thinking about all of this, I wonder, has your view of the
organization and its role and potential changed over these years?
And what are the things that you want to focus on, going forward
with this tool that you now have at your disposal?
LL: Yeah. So that's a great question. I'm
almost at my six-month mark, so that's very exciting. And it's
certainly interesting and always very, very different to work in an
organization from a different vantage point.
But as president, the first thing I'll say as I continue to be
unbelievably impressed with our partnerships and our staff and our
incredible volunteers nationwide and their ability to impact policy
through very deliberate approaches that we have trained people on--
and when we're clear about the impact that we can have and we talk
to our legislators about that impact, we've found a lot of
champions. I continue to be very proud, but also convinced that the
role of advocacy is critically important to the future of cancer
and changing that future for more and more people to have more
opportunities to successfully fight their diagnosis.
And for organizational goals, I think we obviously want to continue
to grow ACS CAN. The bigger our organization is, both from a
network of volunteers to resources, the more influence I know that
we can have.
And then finally, a personal passion of mine is to make sure that
our organization is relevant to the entire cancer ecosystem, but
particularly everyone who is going to face a cancer burden. And we
know that cancer burden is unequal in many, many segments of our
population. So I feel a great responsibility and drive to work with
my many colleagues, including you, Cliff, and ASCO, to do
everything we can to very deliberately reduce the disparity of
cancer.
CH: Well, that's an inspiring way, I think, to
wrap up this conversation. I can't thank you enough for joining me
today for this ASCO in Action Podcast.
ASCO and ACS CAN share so many common goals, as I'm sure everybody
will hear through this conversation. And we are both dedicated to
helping people whose lives have been affected by cancer.
And when patients, survivors, families, cancer care providers work
together the way we do, and so many others, it's clear that the
results can be tremendous in terms of impact and change. So thanks
again for leading this charge with us.
LL: Well, Cliff, it really was my pleasure to do this today with you. And I look forward to many years of productive partnership between ASCO and ACS CAN. Thanks for having me today.
CH: Sure. And for all of you listening, if you want to keep up with ASCO's advocacy efforts, I encourage you to visit our website. This is ascoaction, written as one word, .asco.org. And there's more information about ACS CAN and Medicaid Covers Us available at fightcancer-- that's written as one word-- .org. And, Lisa, I think you previously told us that there's a special website for Medicaid Covers Us. What's that URL again?
LL: Medicaidcoversus.org.
CH: I don't know how I forgot it. So until
next time, thank you for listening to this ASCO in Action Podcast.
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