ACS CAN President Lisa Lacasse Discusses Advocacy Priorities, Partnership with ASCO

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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

Ad: Hi. My name is Shannon McKernin. And I am the host of the ASCO Guidelines Podcast Series. When a new ASCO guideline publishes, we release a podcast episode featuring an interview with one or more expert panel members. Each episode highlights the key recommendations and the implications for patients and providers.
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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. If you enjoyed what you heard here today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. And while you're there, be sure to subscribe so you never miss an upcoming episode.
The ASCO in Action Podcast is just one of ASCO's many podcasts. And you can find all of them at podcast.asco.org.