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ASCO in Action Podcast

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The ASCO in Action Podcast provides analysis and commentary on cancer policy and practice issues. The podcast is hosted by Dr. Clifford Hudis, CEO of the American Society of Clinical Oncology. ASCO in Action, the society’s internal wire-service, provides the latest news and analysis related to cancer policy. These updates provide snapshots of ASCO’s ongoing advocacy efforts, as well as opportunities for ASCO members and guests to take action on critical issues affecting the cancer community. Music provided by gmz, via ccmixter.org.

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The ASCO in Action Podcast provides analysis and commentary on cancer policy and practice issues. The podcast is hosted by Dr. Clifford Hudis, CEO of the American Society of Clinical Oncology. ASCO in Action, the society’s internal wire-service, provides the latest news and analysis related to cancer policy. These updates provide snapshots of ASCO’s ongoing advocacy efforts, as well as opportunities for ASCO members and guests to take action on critical issues affecting the cancer community. Music provided by gmz, via ccmixter.org.

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Should be 5 stars but volume issues!

By racooncologist - Dec 06 2019
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Would give 5 stars but the ASCO podcasts are much quieter than other podcasts for some reason. Please fix this so we can listen to your great content!

iTunes Ratings

10 Ratings
Average Ratings
9
0
0
1
0

Should be 5 stars but volume issues!

By racooncologist - Dec 06 2019
Read more
Would give 5 stars but the ASCO podcasts are much quieter than other podcasts for some reason. Please fix this so we can listen to your great content!
Cover image of ASCO in Action Podcast

ASCO in Action Podcast

Latest release on Feb 18, 2020

All 38 episodes from oldest to newest

Listen Now: New Podcast Highlights Cancer Advance of the Year

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In the latest ASCO in Action Podcast, American Society of Clinical Oncology (ASCO) CEO Dr. Clifford A. Hudis is joined by ASCO Chief Medical Officer Dr. Richard Schilsky to discuss the recently released 2020 Clinical Cancer Advances report, which named the refinement of surgical treatments for cancer as the Advance of the Year. 

“A lot of the advances we’re seeing in surgical approaches now are driven by better systemic therapies for cancer. These systemic treatments have improved survival outcomes and quality of life for our patients, and have now begun to transform the role of surgery in cancer management by reducing the amount of surgery in some cases, eliminating the need for it in others, or, conversely, increasing the number of patients who could undergo surgery when it’s needed for treatment of their cancer,” says Dr. Schilsky.  

Subscribe to the ASCO in Action podcast through iTunes and Google Play.  

Feb 18 2020

25mins

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ASCO Patient-Centered Oncology Payment Model: Clearest Way to Move from Fee-for-Service to Value-based Care

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In the latest ASCO in Action Podcast, ASCO CEO Dr. Clifford A. Hudis is joined by Dr. Jeffrey Ward, a leading contributor to the society’s updated Patient-Centered Oncology Payment (PCOP) model, to discuss how PCOP can improve patient care and lower costs.   

“If we don’t find a way to bend the cost curve, we’re not going to be able to fulfil the mission to take care of our patients,” said Jeffrey Ward, MD, FASCO.  Currently the clearest way to move from fee-for-service to value-based care, notes Dr. Ward, PCOP “will invigorate our specialty and our practices” and “improve the way we give care.” 

Take the ASCO Podcast Survey and help improve our podcast program: https://www.surveymonkey.com/r/ascopodcasts 

Jan 07 2020

22mins

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How Will Your Practice be Affected by the 2020 Medicare Physician Fee Schedule?

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In the latest ASCO in Action Podcast, ASCO CEO Dr. Clifford A. Hudis, discusses updates that will affect oncologists in the 2020 Medicare Physician Fee Schedule final rule, which outlines changes to Part B reimbursement policies and the Quality Payment Program.  

ASCO’s goal will always be “to ensure that oncologists can provide the right treatment, at the right time,” says Dr. Hudis, “and we aim to help CMS implement policies that advance that goal.”    

Take the ASCO Podcast Survey and help ASCO improve its podcast program: https://www.surveymonkey.com/r/ascopodcasts

Welcome to the ASCO in Action Podcast, brought to you by the ASCO Podcast Network, a collection of 9 programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org.

The ASCO in Action Podcast is ASCO’s podcast series that explores the policy and practice issues that impact oncologists, the entire cancer care delivery team, and the individuals we care for—people with cancer.

I’m Dr. Clifford Hudis, CEO of ASCO and the host of the ASCO in Action podcast series. For this podcast, I wanted to provide a quick update on an important announcement from the Centers for Medicare & Medicaid Services, which of course we refer to as CMS on this podcast.

In early November, the agency released its final rule for the 2020 Medicare Physician Fee Schedule—commonly referred as the “physician fee schedule”—and other changes to Medicare Part B reimbursement policies, including proposed updates to the Quality Payment Program.  

Just to review, the physician fee schedule is a complete listing of fees that Medicare uses to pay doctors or other providers and suppliers. It is also a comprehensive listing of maximum fees that is updated each year and used to reimburse providers on a fee-for-service basis.

At ASCO, we always review this rule closely and assess its likely impact our members and, most importantly, our patients.

The top takeaway from the rule is that CMS estimates a zero percent overall impact for the hematology/oncology and radiation oncology specialties in 2020.

Though it’s important to note that the actual impact on individual physician practices will depend on the mix of services the practice provides, and practices in certain states may see a change due to the elimination of the 1.0 threshold previously applied to the geographic practice cost indices.

CMS also finalized provisions to align Evaluation & Management (or E&M) coding with changes laid out by the CPT Editorial Panel for office/outpatient E&M visits.

This is a welcomed update that comes after ASCO and other stakeholders expressed concerns that earlier CMS proposals to consolidate E&M codes would have diminished the resources available to care for Medicare beneficiaries with cancer.

We appreciate the fact that CMS listened to our perspective and revised its plans to better serve people with cancer.

The physician fee schedule rule also finalizes updates to the Quality Payment Program for 2020 and beyond.

A key update to the Merit-Based Incentive Payment System (or MIPS)—one of the Quality Payment Program’s two tracks—is that all four MIPS performance categories will remain at their 2019 weights in 2020, but the performance threshold, which is the minimum total MIPS score needed to avoid a negative payment adjustment will increase to 45 points in 2020 (up from 30 points in 2019).

CMS also finalized its plan to establish “MIPS Value Pathways” (or MVPs) beginning in 2021.

CMS has described MVPs as a way to reduce the burden of participating in MIPS and for CMS to collect more meaningful performance data.

The MVP framework would connect activities and measures from the four MIPS performance categories that are relevant to a patient population, a medical specialty, or a specific medical condition such as cancer.

For years, ASCO has encouraged the use of high-quality oncology clinical pathways to help ensure patient access to high-quality, high-value cancer care. We are hopeful that this provision in the CMS final rule is a move in the right direction.

We have also appreciated CMS’ recent efforts to reduce administrative burden for providers. MVPs, if implemented appropriately, may help improve the quality and accessibility of cancer care. We will continue to work closely with CMS as it implements this new provision.

I hope this summary of the updates to the physician fee schedule for 2020 was helpful to our listeners.

Our ultimate goal is always to ensure that oncologists can provide the right treatment, at the right time, and we aim to help CMS implement policies that advance that goal.

To that end we will submit detailed comments on the final rule during the open comment period, to ensure CMS understands the needs of the oncology community, and the full impact this rule is likely to have.

If you’d like more information on Medicare physician reimbursement in 2020, please visit the ASCO in Action website at asco.org/ascoaction.

Until next time, thank you for listening to this ASCO in Action podcast and if you enjoyed what you heard today, don’t forget to give us a rating or review on Apple Podcasts or wherever you listen and while you are there, be sure to subscribe so you never miss an episode.

The ASCO in Action Podcast is just one of ASCO’s many podcasts; you can find all of the shows at podcast.asco.org.

Dec 10 2019

6mins

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mCODE Could Vastly Improve Cancer Care by Standardizing Patient Records in Electronic Health Records

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CancerLinQ Medical Director Dr. Robert Miller discusses how ASCO’s new initative, mCODE (Minimal Common Oncology Data Elements), will help take the oncology community one step further to achieving interoperability in electronic health record systems.

In the latest AiA podcast with host ASCO CEO Dr. Clifford Hudis, Dr. Miller says that doctors are expected by their patients to have all their relevant medical information to ensure they receive the highest quality cancer care. mCODE is working to encourage vendors to adopt a consistent set of data elements in their EHR platforms to achieve that goal.

Nov 26 2019

32mins

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Disconnect Between Attitudes and Behaviors on Cancer Prevention and Other Findings from 2019 ASCO National Cancer Opinion Survey

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ASCO CEO Dr. Clifford A. Hudis discusses findings from the ASCO 2019 National Cancer Opinion Survey, which found that only one in four Americans are taking concrete steps to prevent cancer, even though evidence exists that as many as half of all cancer cases are preventable. Further, the survey found that while 6 in 10 adults report being concerned about developing cancer, 25% believe that there is nothing they can do to prevent cancer. The survey also revealed troubling behaviors and attitudes around e-cigarette usage and end-of-life care.

If you like what you hear from the ASCO podcast, please let us know. Take our listener survey and help shape the future of the ASCO Podcast Network. Visit podcast.asco.org and click on the survey link. Once again, that's podcast.asco.org. This survey will just take a few minutes to complete and will help us get to know you better. Thank you so much for listening.

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 the 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 that offer enriching insights into the world of cancer care. You can find all of ASCO's podcasts, including this one, at podcast.asco.org.

The ASCO in Action podcast is ASCO's podcast series that explores policy and practice issues that impact oncologists, the entire cancer care delivery team, and the individuals we care for, people with cancer. I’m Clifford Hudis, CEO of ASCO and the host of the ASCO in Action podcast series. Today, I want to share some very interesting findings from ASCO’s 2019 National Cancer Opinion Survey. 

ASCO started doing this annual survey three years ago in collaboration with the Harris Poll so we could track the public’s views on cancer research and care. The poll, supported by the Mission Endowment of ASCO’s Conquer Cancer Foundation, is conducted annually to measure shifts in the public’s perceptions of a range of cancer-related issues over time. 

The findings come from a large, nationally representative sample of U.S. adults ages 18 and older that included individuals with cancer. 

As the world’s leading organization of oncology professionals who care for people with cancer, ASCO believes it is critical to understand what the public, including patients, think of, expect, and need from the nation’s cancer care system.  

So, what did this year’s survey tell us? Well, this year’s findings raise serious concerns about an area of cancer care that—as anyone who treats cancer patients would say—should be uppermost in all our minds, and that is cancer prevention in America. I’ll get into the details in just a moment, but the results tell us that much more education on cancer prevention is needed, beginning at a young age—when it can have the greatest impact. 

This year’s survey also tells us that far too many young people regularly use e-cigarettes and believe they are harmless and not addictive. And, a third area the National Cancer Opinion Survey examined is end-of-life care and, here, we found gaps in awareness about the importance of patients discussing end-of-life wishes with their doctors and family members. 

So, turning to the area of cancer prevention, the ASCO survey found that only one in four Americans incorporate cancer prevention into their daily lives. When you think about it, this low rate is remarkable since research shows that as many as half of all cancer cases are preventable. 

Interestingly, our survey also reported six in 10 adults (57%) are concerned about getting cancer. You might think more than 25% of us would care deeply about cancer prevention and take risk reduction steps every day. So, we’re seeing a disconnect between attitudes and behaviors on this point. 

We also found low levels of public awareness of known cancer risk factors such as alcohol and obesity, and misconceptions that artificial sweeteners and cell phones cause cancer in humans. Clearly, this is a larger public health issue and more work needs to be done.  For starters, we urge every American to have regular conversations with their physician about reducing their risk of cancer and other chronic diseases. 

As I’m sure most of you know, stories about the use of e-cigarettes—or vaping—have been in the headlines with reported deaths from severe respiratory illness with e-cigarette use. As an organization of cancer doctors, we’re very concerned about the potential for e-cigarettes to become a gateway for youth to use cancer-causing tobacco products and the serious side effects that are beginning to emerge. 

So, we wanted to examine this issue more deeply in this year’s National Cancer Opinion Survey and what we found is troubling:  Roughly one in five young adults uses e-cigarettes daily or recreationally, and nearly one in four believes the products are harmless and not addictive. These findings reflect survey responses from Generation Z respondents, who are ages 18 to 22, and Millennials, who are ages 23 to 38.  

But, I also want to note that there is also evidence that e-cigarette use among pre-teens and teens is on the rise. Make no mistake, this is very worrisome news. The U.S. Surgeon General has warned that e-cigarettes contain addictive and harmful or potentially harmful ingredients, including nicotine; lead and other heavy metals; and flavorants such as diacetyl, a chemical linked to serious lung disease. 

For ASCO’s part, we issued a policy statement with the American Association for Cancer Research which called for putting safety labels with a warning about nicotine addiction on all e-cigarette packaging; prohibiting youth-oriented advertising; and banning the sale of e-cigarettes containing candy or youth-oriented flavors unless there is evidence demonstrating these products do not encourage use of e-cigarettes by youth. 

We will continue to monitor this issue closely and keep ASCO members informed of developments. 

Finally, I want to touch on a notable survey finding related to end-of-life care. Our survey found that most people affected by cancer aren’t discussing end-of-life care with their doctors, even though they believe it’s important. 

As cancer doctors, we understand that it’s critical to plan ahead for end-of-life care in the advanced stages of cancer or any disease. Physicians and patients should discuss all available care options and develop a plan that reflects patients’ wishes and goals. This can ease the emotional and may even reduce the financial burden for patients and their loved ones. 

I want our listeners to know that resources for planning for end-of-life care, including a patient booklet, are available at Cancer.Net. I encourage you to take advantage of this free resource. 

If you’re interested in learning more about the ASCO National Cancer Opinion Survey, please visit asco.org and search for National Cancer Opinion Survey. 

We would like our listeners to know that resources for planning end of life care, including a patient educational booklet, are available at cancer.net. And I would encourage everyone to take a look at this and take advantage of this free resource.

I want to close by thanking our audience for taking the time to listen to this overview of our survey findings. At ASCO, the results of this survey will inform our activities as we work to conquer cancer through research, education, and the promotion of the highest quality patient care. If you're interested in learning more about the ASCO National Cancer Opinion Survey, please visit ASCO.org and search for National Cancer Opinion Survey.

And if you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcast or wherever you listen. And while you're there, be sure to subscribe so you never miss an episode. The ASCO in Action podcast is just one of ASCO's many podcasts. You can find all of our shows at podcast.asco.org.

So, until next time, thanks again for listening to this ASCO in Action podcast.

Nov 12 2019

9mins

Play

Listen to Coverage of ASCO’s 2019 Advocacy Summit on Capitol Hill

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On September 25-26, ASCO held its 2019 Advocacy Summit, during which oncology care providers from across the United States came to Capitol Hill to urge Members of Congress to support policies that will improve access to high-quality, high-value care for people living with cancer. Listen to coverage in this new ASCO in Action podcast.

Disclaimer: 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.  

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 insight into the world of cancer care. You can find all of ASCO's podcasts, including this one, at podcast.asco.org.  

My name is Clifford Hudis, and I'm the CEO of ASCO, as well as the host of the ASCO in Action podcast series, which explores policy and practice issues that impact oncologists, the entire cancer care delivery team, and the individuals we care for: people with cancer.  

Recently, ASCO held its 2019 Advocacy Summit. More than 130 oncology care providers from across the United States came here to Washington DC to meet with members of Congress and to urge support for policies that improve access to high-quality, high-value care for people living with cancer.  

This is one of the highest impact events that ASCO holds every year. There's nothing like seeing ASCO advocates hit the halls of Congress with such passion and dedication, with the collective goal of ensuring that lawmakers focus on policy changes that will improve the lives of people with cancer and the care they receive.  

ASCO president Dr. Howard, or "Skip", Burris kicked off the activities at the Advocacy Summit and spoke about why it's so important for us to be on Capitol Hill.  

Howard “Skip” Burris: ASCO's on Capitol Hill today so that our members actually get to meet with their representatives and congressmen and their staff so they understand how important cancer care is to this country, and to make sure that they understand the issues that are facing our patients that we care for who are experiencing cancer.  

The decisions that Congress makes, with regard to health care and cancer care in particular, is so important and powerful to cancer patients. Access to therapy, timely access to getting treatments initiated, making sure that there's appropriate coverage of new therapies, all those things are critical for us to implement the great scientific and clinical advances that we've made into the care and outcomes for our patients.  

Clifford Hudis: ASCO advocates asked lawmakers for their support for legislation that will make a big difference in the lives of individuals with cancer. One of those pieces of legislation is HR 913, the CLINICAL TREATMENT Act, which would guarantee coverage of the routine care costs associated with clinical trial participation for Medicaid enrollees with life-threatening conditions, including cancer. Medicaid is the only major payer, including Medicare, that is not required to cover these care costs today, and we hope to address this.  

Dr. Karen Winkfield, chair of ASCO's Diversity Inclusion Task Force, says that changing this policy is critical to improving the validity of clinical research data and to improving patient outcomes. Dr. Karen Winkfield joined other ASCO advocates in urging members of Congress to support this bill.  

Karen Winkfield: So the Clinical Treatment Act is really vitally important because it will allow all patients equal opportunity to access clinical trials that would be beneficial to not only them, but also other individuals who may come from the same backgrounds, including racial and ethnically diverse populations, but also those of lower socioeconomic status. We want our clinical trial to be representative of every single individual in this country.  

Clifford Hudis: The Advocacy Summit was packed with meetings with congressional lawmakers and their staff. Dr. Jason Westin, a member of ASCO's Government Relations Committee, participated in the summit and he spoke about why these direct meetings are so important.  

Jason Westin: I think advocacy is very important for cancer doctors and cancer professionals to be an advocate for our patients. I think that there are so many opportunities for us to help our patients in the clinic, in the research arena. But if we're not involved in advocacy, then others are advocating in other directions that may not benefit our patients in the way that we would like.  

Many doctors view that as somebody else's job, or they view that as something that's not important for them to be involved in. I think if we don't step up, if we're not sitting at the table, then we may be on the menu.  

Clifford Hudis: Many ASCO members are concerned with payer-imposed strategies that are designed to contain costs, but often unnecessarily, and sometimes dangerously, delay care for patients with cancer. Dr. Melissa Dillmon, chair of ASCO's Government Relations Committee, explained why these utilization management practices can be particularly harmful in cancer care, and also spoke about legislation that will help address these concerns.  

Melissa Dillmon: So, utilization management strategies, like step therapy and prior authorization, hurt our patients because they cause delays in care and cause patients to take drugs that are less effective. So, we are asking for support on two critical bills.  

One is Improving Seniors' Timely Access to Care Act, which really looks at prior authorization and simplifying the process, making sure that it's a timely approval of medications that are critical to getting them on treatment and getting them healthy again.  

The other act that we're asking for support on is the Safe Step Act, which really looks at step therapy and making sure that if step therapy is in place in an insurance program, that it does not prevent patients, especially oncology patients, from getting the best drug at the right time.  

So, as oncologists we're really fortunate in that drugs are being developed in a rapid manner, and we have many new drugs to help us fight their cancers. And so, we don't have the ability to use the cheapest drug always, because the best drug is sometimes the newest drug. And it may not be the one that's first approved on that step therapy utilization management strategy.  

Clifford Hudis: One of the highlights of the Advocacy Summit is presenting ASCO's Congressional Champion of the Year award to lawmakers whose leadership on behalf of patients with cancer deserves special recognition. This year, we recognize Congressman Ben Luján from New Mexico and Congressman Gus Bilirakis from Florida for their work. Congressman Luján addressed the attendees at the reception.  

Ben Luján: Your work and the difference you make every day saves people's lives. And it's certainly why I'm hopeful that more of my colleagues that have not had the chance to learn from you take a moment to meet with you, to spend time with you, to understand the magnitude of a difference that you're delivering for the constituencies that we all represent.  

Clifford Hudis: We also recognized ASCO volunteers whose advocacy efforts made a significant impact in 2018. Dr. Alexandra Thomas, a participant in ASCO's Leadership Development Program, was named ASCO's Advocate of the Year.  

Alexandra Thomas: Receiving this honor only makes me embrace the exciting work ahead even more. And I hope that will include extending our network so even more voices can join in this chorus, so Dr. Burris's picture of the ASCO Advocacy Summit will get bigger each year.  

But perhaps even more importantly, the virtual picture will get bigger as more and more of us join in and advocate and tell our patients' stories and realize robust and continuous government support to improve the lives of our patients with cancer.  

Clifford Hudis: The ASCO Advocacy Summit is a unique opportunity to educate members of Congress and their staff about the current realities of the cancer care delivery system and how their decisions impact real people who have cancer. The support of lawmakers is critical to ensuring that our patients have access to high-quality, affordable cancer care.  

This is why we feel it is so important that our collective voice be heard on Capitol Hill. A big thank you to all of ASCO members who participated in the summit, as well as those who participated virtually, by sending messages to their members of Congress through social media or ASCO's ACT Network.  

I encourage all of our listeners to participate in ASCO's advocacy efforts. Visit asco.org/actnetwork to learn more about how you can get involved. To stay up to date on all of ASCO's advocacy work, visit asco.org/ascoaction.  

Until next time, thank you for listening to this ASCO in Action podcast. If you enjoyed what you heard 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 episode.  

Until next time, thank you for listening to this ASCO in Action podcast. 

Sep 30 2019

9mins

Play

Get to Know Dr. Howard A. “Skip” Burris and What He Hopes to Accomplish as ASCO President

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Subscribe through iTunes and Google Play.

In this interview, ASCO President Dr. Howard A. “Skip” Burris discusses why he became an oncologist, the importance of mentors in his career, the most significant changes he’s witnessed in cancer care during the past three decades, and his vision for the coming year as he serves in this top volunteer position. Dr. Burris stresses that we can’t “divide and conquer, to conquer cancer,” a message underscored by his ASCO presidential theme, “Unite and Conquer: Accelerating Progress Together.”

Find all of ASCO's podcasts at podcast.asco.org

Shannon McKernin: Hi. My name is Shannon McKernin, and I'm 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. You can find the ASCO Guidelines Podcast series on Apple Podcasts or wherever you're listening to this show, and you can find all nine of ASCO's podcasts, which cover a wide range of educational and scientific content and offer enriching insight into the world of cancer care at podcast.asco.org.

Disclaimer: 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.

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 offering enriching insights into the world of cancer care. You can find all of ASCO's podcasts including this one at podcast.asco.org.

This ASCO in Action podcast is part of our series exploring policy and practice issues that impact oncologists, the entire cancer care delivery team, and the individuals who care for people with cancer. My name is Clifford Hudis, and I am the CEO of ASCO as well as a host of the ASCO in Action podcast series.

For today's podcast, I am delighted to be joined by Dr. Howard, or "Skip", Burris. He's ASCO's president for the 2020 term, and if we're lucky today, we'll find out why he's called Skip. In the meantime, Dr. Burris is joining me to share his vision for his presidential year. That is what he hopes to accomplish by this top ASCO volunteer leadership position is an opportunity to leave a lasting mark on our organization and indeed the larger oncology community. Skip, welcome and thank you for joining me today.

Howard “Skip” Burris: Thank you for having me. Looking forward to the conversation.

Clifford Hudis: So, Skip, every one of us comes to oncology for individual reasons and personal motivations, and I know that's true for you as well. So before we get into the details of your current role at ASCO, I think our listeners will be interested in learning why you became a medical oncologist when there are so many places to go in medicine, so many exciting specialties, what was it that drove you to choose taking care of patients with cancer for your career?

Howard “Skip” Burris: Interesting question and story. I was driven to medicine really thinking that I wanted to do something that was meaningful, something that helped others. And I was influenced by actually a number of friends whose fathers were physicians when I was in high school. And as I initially went into the medical field, I thought surgery was so exciting, and I actually spent many of my electives doing surgical sub-specialties and in particular thoracic surgery. And it was an exciting time in the '80s with heart transplantation and bypass surgeries.

And yet I also was dissatisfied with the fact that it seemed transactional. While important, and certainly lifesaving for those patients, these were surgeries and then, quote unquote, were done taking care of that patient. And then I had a seminal moment after rounds one day when we were in the intensive care unit. And I was talking to a patient, and the team moved on. And my attending yelled at me, “hey, Burris, what are you doing?” I looked at him and he said, “Come on. He's fixed. Let's go.”

And I half smiled and I thought, well, this guy's got such an interesting story and he was terribly appreciative of the care he'd receive, but he looked at that attending as somebody had truly had saved his life. And so fast forward to fumbling through internship and trying to figure out really what type of specialty I might want to go into. And two groups of folks that I ran into contact with shaped my career.

One were the oncology patients. Rounding on the oncology patients, doing that elective early in my internship, they were grateful. They were so appreciative. It was a great program in San Antonio. It was folks participating in clinical trials. And these were patients who not only wanted to help themselves but understood that what they were doing might help others. But really every person was so unique and had such a powerful story.

And then secondly, the attendings that were taking care of those patients, the oncologists truly seemed to love what they were doing. And it was really those two groups, I thought these are the kind of patients I'd like to take care of, and these are the types of physicians that I'd like to practice with. And I began shifting as many rotations as I could as a resident into oncology, and I've enjoyed being an oncologist now for almost 30 years.

Clifford Hudis: And so it was the patients, and it was the physicians really that in the end drove you into this specialty it sounds like, right?

Howard “Skip” Burris: Yes. I had been taught early on, and I tell some of our younger folks today, working with people that you like and working with people that you respect is such an important part of the job. And then the service that you're providing knowing that folks are appreciative and there's a teamwork in that both the doctors and the patients in the field of oncology are so special.

Clifford Hudis: So you just touched on a big part of what I think motivates or at least supports so many of our members throughout their careers and that is collaboration, working with others. And I can't help but imagine that your experience in terms of your education at West Point and your service with distinction in the Army has a relationship to that camaraderie, that connection, and that collaboration. How do you see that experience as preparing you for medicine, or maybe you think it didn't?

Howard “Skip” Burris: Actually it did, and I appreciate the question, the opportunity to comment on that. Going to the US Military Academy, going to West Point for undergrad was a decision made because I wanted to go to a great school. It was a great scholarship package, the way they handled it. And I knew I'd get a great education and was attracted, one of these kids in high school who gravitated toward leadership positions, and going to an institution that would teach leadership was attractive.

And then you realize as soon as you get to West Point, you're part of this big team. Everything you do during your years there is all about your group of individuals, your team, your squad, your company, surviving together, thriving together, and being successful. And, in fact, the motto that they teach is strength is one. And it was clear that you were at school with a talented group of folks who all wanted to be leaders, and everybody had to learn how to fit in, pick their place to lead, pick their place to be humble, pick their place to take charge.

And those sorts of teachings and the mentors and the colonels and generals that were my teachers on that led the program, they were simple things but they were things that stuck with me forever, and I think they've served me well as a physician. One was around the simple concept of you know if no one's following, you might not actually be leading. And you got to stop and take a look behind you and see if while you're heading in whatever direction you might be going, if no one's following, you got to check yourself.

I think a second thing that has stuck with me is better to be decisive than to be sure you're right. Very rarely are you sure you're right, and I think that teams even in medicine and maybe particularly in medicine really like a decisive leader. And I think that's something that is a great characteristic for physicians, gathering the appropriate data and making the decision and moving forward. But looking around and trying to emulate some of those folks who became leaders of the country was inspirational and then also gave you the opportunity to take away some of those teachings and try to embed them in terms how you carry yourself.

One thing about the army it's very hierarchical, but the generals, you know, know that those privates are what's going to make them successful. So the chain of command and that respect for each other, respect for the position, and respect for their role on the team is very similar to the role of doctor to nurse to the support staff and the like. So it actually ended up being a great foundation for my career.

Clifford Hudis: So it's interesting throughout medicine and especially in the last few decades, we have increased our emphasis on the role of mentoring. And I have I guess two questions which would be, one: how did you find mentors in your post military career given the strength of the leadership that you saw displayed there? And the other question is how did you translate that into your own service as a mentor?

Howard “Skip” Burris: Yeah, so I think important-- I think picking the right mentor-- maybe picking the mentor where you resonate with that person and think that somebody who you'd like to model and picking that mentor who can teach you something and really has your best interests at heart I think are key. Picking the wrong mentor is something that could really set somebody off on the wrong track if they're not careful.

I was very lucky. As I went into internship and residency, my chief of medicine was a fabulous mentor. He was one of those individuals who kept the patient first, was kind but firm, and just the thing I learned from him was what now we talked to as emotional intelligence, this fact that he was optimistic. He was very self-aware, and he was in control of his emotions.

And no matter what we'd done or not done and however the result went, he was the steady hand, and I always looked up and thought, I want to be that person. I want to be the person who's calm in the storm, and I want to be the person that people look to and say he's not panicking, and he's got the situation where we're going to get through this together. So that was a great mentor in my chief of medicine.

And then my other mentor during my oncology fellowship was a famous oncologist, still in the field today, in Arizona, Dr. Dan Von Hoff. I mentioned Dr. Von Hoff's name, he's been a Karnofsky Award lecturer. And Dr. Von Hoff was the one who got me interested in drug development and phase 1 clinical trials.

And I would say that Dr. Von was a great mentor for a few specific reasons. One is he always pushed us in front of him. He didn't need to take the credit. He pushed us to be presenters, pushed us to be first authors, pushed us to be the person that was in front of the clinical trial. And that was something that really was important for somebody early in their career.

And then secondly he really taught that perspective that it was a great responsibility both for the patient on the clinical trial and for overseeing that clinical trial and that while your title might be principal investigator, you might be the leader of the program that you really were beholden to those researchers that brought the drug forward and to those patients who were volunteering to participate in the study. And Dr. Von Hoff has always been a great person in that regard, and his Karnofsky Lecture was actually a highlight to and a tribute to all those patients who had participated in phase one trials through the years. So those were two mentors that really stood out and have impacted me throughout my career.

Clifford Hudis: Do you see yourself I guess echoing those styles of mentorship or expanding on them? Do you see anything in your own role as a mentor that hearkens back to what you saw in West Point and in those mentors in medicine for you personally?

Howard “Skip” Burris: I do think I've had embodied in me the patient centric, patient first approach. I am one of those physicians who has always wanted to get to know his patients, have always taken the social history as an important part. It's funny, a number of my longtime patients are comfortable calling me Skip on occasion. I actually know their stories and know who their family is, and I know what they're wanting to fight for in terms of grandchildren and trips and the like. So that I'd be really being grateful on having a relationship with the patient I think is something that has carried forward.

I will say to my chief of medicine mentor I still aspire to that. I wish I was always as calm as he was. I wish I was always as optimistic as he was and had that sort of strength, but it is still something that's front of mind for me and something that I at least strive to be as much as I can.

Clifford Hudis: So, reflecting on your career just for a little bit, I have a couple of questions. One is a general one and one more specific. But thinking generally first, you've been in medicine a long time. I guess you're around 30 years if I'm not mistaken. From your point of view, what do you see as the most significant change in the field that -- can be good or bad or whatever -- but that we have to think about and maybe help our trainees and younger members adapt to?

Howard “Skip” Burris: Well, the flow of information, the speed at which we're making discoveries and just the educational challenges there are immense. And so, I think that is something where the speed of drug development and approvals just to throw one statistic out, eight new drugs approved in 1998, 48 new drugs are indications approved in 2018, so what a change over the past 20 years.

I think the most significant change, though, is we knew early on in our careers-- you and I always knew that no two patients were alike. They might be in ERP or positive breast cancer that they really were not the same patient. They might be a adenocarcinoma, but they were really different.

And now with the advances in pathology -- advances in molecular profiling, understanding biomarkers, we do know that no patients are alike. And we know that everybody has to be approached individually. The tendency has always been to want to lump patients into groups to make broad treatment recommendations.

And that is part of the challenge with the education and information flowing forward. It is as simple as continuing to look at some of the prognostic indices that we have for some tumors, the next generation sequencing for others, whatever that test might be to really determine what's the best therapy for that patient. So those advances have really helped us in terms of looking at tumor biology and knowing whether we're thinking about an immunological approach to a patient or chemotherapy approach to a patient or whether it might be one of the new oral biologics. But that has been such a significant change.

And only a few years ago, it seems like we were giving immunotherapy in the form of drugs like interleukin 2, and now we have these fabulous new checkpoint inhibitors that are in front of us. Thinking back to really something like tamoxifen being truly a targeted therapy now thinking about the dozens of drugs that are out there now that are targeting other biomarkers on patients. That really has been an amazing advance.

Clifford Hudis: Well, I mean, I have to agree that this is certainly an exhilarating and challenging time in oncology, so maybe we can pivot to think about that and talk about your presidential year. What do you think are specifically the biggest challenges facing us? And let's call those challenges promising opportunities. Where do you think we have to focus right now?

Howard “Skip” Burris: I think one very top of mind is the oncology workforce. Physicians, leveraging up the physicians, having enough nurses and enough nurses interested in oncology, attracting young physician talent into wanting to be an oncologist, and then the other ancillary health care providers, nurse practitioners and the like, we need a bigger and more robust workforce to take advantage of the opportunity given to us with the survivors. It's incredible when we think about the advances and the number of cancer survivors in this country, individuals either under treatment or surviving with the disease where we're talking in numbers approaching 20 million over the next two years so really very amazing in that regard.

I think education, it is tough. We still have a lot of physicians particularly in the United States that are seeing multiple different tumor types during the day, and with the advances in information, it's just important that we as ASCO do our part in trying to educate and provide the information.

And then with all these new advances, it becomes the challenge of clinical trial accrual. While many of these therapies have made important differences in patients' lives, we're still not curing enough patients. And so, there is room and certainly the need for better therapies. And so, in this busy workforce and in the challenges of having everyone aware of the opportunities, how do we improve clinical trial accrual?

And then lastly, I'll just mention, of course, cost of care. That goes a little bit with patients living longer or taking therapy for a longer period of time sometimes in a chronic setting and then the cost of some of these new therapies. So those were certainly factors we're going to have to deal with. So, some big challenges for the field of oncology.

Clifford Hudis: Well, hearing you run to that list-- workforce, research, cost, patients, and survivorship, all of that-- it sounds like it builds right up to your presidential theme of unite and conquer, celebrating progress together. That sounds like a lofty and aspirational statement, but I also see immediately connections back to again all those points you just made. Do I have that right? Can you unpack the meaning of that for us at least, as you see it?

Howard “Skip” Burris: Yes, it's an interesting theme, unite and conquer, celebrating progress together. I specifically resonated with that. I have long taught my young attendings and my colleagues at Sarah Cannon that the challenge is too big and the needs too great for us to actually go with the divide and conquer mentality. We've actually got to be together as a team to get this accomplished and have the best care provided.

So I have talked about uniting and conquering for many years here at Sarah Cannon, and I think it fits nicely when we think about the oncology workforce and the members of ASCO. And then accelerating progress together, there is a great need to step things up a bit. I think that can come in a few different fashions. I am excited about the emerging opportunities and real world evidence. I do think some of the clinical trials are getting smaller and more narrow to fit specific groups of patients.

And then I think we're beginning to leverage up some of our physicians with technology, with advanced practice providers, nurse practitioners, physicians assistants, all those pieces coming together. And then I'll admit also having conquer in the phrase was important to me. The Conquer Cancer Foundation, ASCO's foundation, I think is so important. When you come back to some of these topics we just talked about, it's really one of our best ways to invest in and inspire young investigators. Some of the awards provided by Conquer Cancer and the mission it provides I think are really going to be key to ASCO's success.

Clifford Hudis: I think that's a great vision, and it's certainly one that does resonate, not just with you but I think with many in the audience. You touched in that description on that diverse expertise that we all believe we need to make faster progress. And for me, of course, this reminds us of our upcoming meeting in Bangkok, which is looking at speakers from some of the unconventional fields. How do you see that diversity coming together to drive innovation in cancer research and care?

Howard “Skip” Burris: It's an interesting opportunity for us, and I'll digress for a brief minute and then go to the Nashville Analogies. So, Sarah Cannon, based here in Nashville, and some of the things we've talked about really revolves around what it takes to put on a musical performance. So only one person might have the microphone at the time, but you've got the band and you've got the engineers and you've got the people that have setup the stage, sold the tickets. Every aspect of that's key to having that concert pulled off.

And I think Breakthrough is a meeting and when you think about the oncology ecosystem not too different. We need and have invested in information technology. I mean some of those IT individuals are so key to doing a variety of things, getting data to us, sorting and analyzing data, we were seeing telemedicine coming at us, artificial intelligence and natural language processing, all those pieces, which then moves quickly into where the engineers or participating.

Engineers and medicine, I think, are going to help make some of the greatest advances. I think certainly engineers in terms of how we're looking at robotics and surgery, how we're thinking about different techniques for radiation therapy, and even engineers getting involved in some of the drug discovery process.

And then bioinformatics and we've talked about big data and the excitement behind that. I commented on real world evidence, but this whole idea of being able to have decision support through bioinformatics and the understanding that those experts bring to the table. Those are some of the things that'll be highlighted at the Breakthrough Meeting. I think those are individuals who are going to need to be core pieces to the cancer solution and to cancer centers. And it's just an exciting time, and I think this meeting will be a great place to highlight how those groups can come together and have a conversation.

Clifford Hudis: So, we are now a few months into your presidency year. I have to ask: has there been anything that has surprised you about the experience, something that you did not expect as you entered into this leadership role?

Howard “Skip” Burris: I think the one surprise is how many individuals want you to lend an ear with email and text, that's a little bit easier. But folks that want to stop and grab you and give you a suggestion. I say surprised by that because I think these members, our colleagues, folks that are participating in the oncology care field really have ideas, thoughts, and passions.

The individuals that speak to me really want you to take their ideas seriously, think about it, and bring it forward. And I'm appreciative of that. I'm surprised that they wouldn't see me taking this role in this title as being an opportunity for them to have that conversation and want to push their idea of forward. But that's been both a surprise and yet a pleasant experience, and I've enjoyed the conversations.

I will also comment and throw some kudos out. I knew the ASCO staff was smart. I knew the ASCO staff was very hard working. But as you become ASCO President and you're seeing and signing and reading and participating in their communications that they put out in a variety of fashions, just this sheer legislative communication they have back and forth with congressional staff and answering various health care initiatives. One, it's a high volume, two, ASCO's voice and input on this is really needed and appreciated and respected, and, three, we really have a very talented ASCO staff sitting with our organization, and I think that's something that it would be great for all 40-plus 1,000 of our members to really appreciate.

Clifford Hudis: Well, you know I agree. Now I have to ask, in addition to your long history of volunteer leadership within ASCO and your current role, especially as president, you also have a busy day job. You're currently chief medical officer and president of clinical operations as well as executive director of drug development all at the Sarah Cannon Research Institute, which is a leading cancer center for clinical research in the country. You're also an associate of Tennessee oncology. Now I was once ASCO president myself, and I know how busy the role keeps you. How do you do it all, Skip?

Howard “Skip” Burris: Well, you certainly did it, and I don't mind saying I looked at folks like yourself to understand how better manage my life. I do think I've become better at scheduling. Through the years, I've learned that if I don't schedule myself in, I don't schedule a family in, and schedule a little downtime, that can be hard. So, I have become more disciplined with that through the years.

I think secondly, I've been blessed to have constant and consistent team. Same nurse practitioner for more than 15 years, same pharmacologist for more than 20 years, nurse, staff, et cetera, so that has helped and enabled me to delegate and empower them and others. And recruiting in great talent has been important.

The work energizes me, and I have really enjoyed working with really smart people. And then lastly some credit to my wife, Karen. Surely after being elected president, Karen put me on a diet, and I think that's provided a little bit of extra energy for me as well.

Clifford Hudis: And how's that working out?

Howard “Skip” Burris: Yeah, it's going pretty well. She's been a great encourager for me, and we've been able to drop a few pounds. And we can button the jacket, and so that will help me out with the pictures and being onstage.

Clifford Hudis: So that leads me to maybe a piece of low hanging fruit here, but at the end of this year when you look back on your year as ASCO president, what's the one thing you hope you've accomplished? And don't tell me it's dropping 20.

Howard “Skip” Burris: No, I won't 'cause Karen would tell you dropping 30, but I'm open for dropping 20. I hope that when we look back on my presidential year that it will be seen as a year where we bridge some gaps and connected people to begin to have some conversations to really push some advances. I think this idea of connecting people and bridging the various stakeholders is important to me, that will come in a variety of ways.

I think my educational chair Dr. Prowell, Tatiana, coming from the FDA and from Johns Hopkins and Dr. Melissa Johnson, the two of them bring a very unique perspective in. So how the committees are formed and who's engaged in planning the annual meetings and how we have various participants and speakers, I think we're hoping to engage more of the oncology workforce and care force in terms of participating in the meeting.

I also hope that we'll begin to push this idea of why all should be a member of ASCO. I think there's nothing more important than being together as an association. There has been articles out of late touting why doctors should organize, so I'm also hoping during this year we see an increase in membership for years going forward. Maybe we can set some of that platform up.

And then also really continue to energize and push the Conquer Cancer Foundation. I think it should be something that all of our members will be proud of to say that they've contributed to Conquer Cancer and that they'd invested in the future of oncology. So those are a few of the things I hope to get started. It's a fast year. I know it'll go by quickly, but I'm hoping some of those initiatives can get rolling and we can have that carry forward in years. And when we look back we'll think that I had a small part in getting some of those programs moving along.

Clifford Hudis: Well, that's great. I want to thank you again, Skip, for joining me today. It's been a great conversation. I've appreciated especially hearing more about your vision and your hopes for the coming year as well as the impact you want to leave. I have to say at the opening I teased a little bit about how you came to be called skip, and you haven't shared that. So, this is your chance if you want to let the membership know why we call you Skip. That'd be great.

Howard “Skip” Burris: Well thanks, Cliff. Howard A Burris, III and, of course, Howard, Sr lived down the street and Howard, Jr was in the same house with me. So, when I first came home from the hospital, my mom called me Skip. I have had that nickname since I was born. And I always talked about switching back to Howard when I went to college or after medical school or when I turned 40.

And for whatever reason, personality, friends, I've always stayed a Skip. There is no middle name, Howard A Burris. A is just the initial. So, there's been no middle initial to fall back to. So, I think Skip's what it's going to be and that seems to be what's sticking with me through the years. So that's the story.

Clifford Hudis: That's great. Well, I want to thank you again and want to remind our listeners until next time. We appreciate your taking the time to join us for this ASCO in Action podcast. If you enjoyed what you heard today, don't forget to give us a rating or a review on Apple podcast or wherever you listen. And while you're there, be sure to subscribe so you never miss an episode.

The ASCO in Action podcast, remember, is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org.

Sep 17 2019

31mins

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Removing Barriers to Clinical Trial Access for Patients with Medicaid

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Dr. Melissa Dillmon, the Chair of ASCO's Government Relations Committee, joins ASCO CEO Clifford A. Hudis to discuss improving access to clinical trials for patients with Medicaid. Medicaid covers 20% of Americans, however unlike Medicare or private insurers, Medicaid is not federally required to cover the routine care costs associated with clinical trials. 

Find all of ASCO's podcasts at podcast.asco.org

Transcription Shannon McKernin: 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.

You can find the ASCO Guidelines Podcast series on Apple Podcasts or wherever you're listening to this show, and you can find all nine of ASCO's podcasts, which cover a wide range of educational and scientific content and offer enriching insight into the world of cancer care, at podcast.asco.org.

Disclaimer: 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.

Clifford Hudis: 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 most importantly, the individuals who care for-- people with cancer. My name is Clifford Hudis, and I'm the CEO of ASCO, as well as the host of this ASCO in Action podcast series.

For today's podcast, I am really delighted to be joined by Dr. Melissa Dillmon-- Missy-- the chair of ASCO's Government Relations Committee, and a longtime dedicated ASCO volunteer.

Now, regular ASCO in Action podcast listeners may remember that just a few months ago, I spoke with one of our colleagues, Dr. Beverly Moy, the issue of financial barriers to clinical trial participation, and we focused on ASCO's work to address those barriers to try to make it easier for patients to enroll in clinical research studies.

Today, we're going to follow up on that. Dr. Dillmon is going to join me as we drill down deeper into one of the barriers that we've touched on previously-- in this case, the lack of coverage of routine care costs that are associated with clinical trials, but very specifically, the challenges that are faced by patients who have Medicaid.

Dr. Dillmon, welcome, and thank you for joining us today.

Melissa Dillmon: Thank you, Cliff, for having me and discussing what I think is a very timely and important issue.

Clifford Hudis: Since it's something I know you care deeply about, maybe you could start off at a high level and give us a little bit of background. What is it exactly that we're talking about here, when we talk about clinical research and coverage for patients with Medicaid?

Melissa Dillmon: So Cliff, you know that in many cases, clinical trials provide the best or sometimes the only treatment option for our patients with cancer. And we live in a time when there is an incredibly rapid pace of development, with new investigational treatments that are dramatically altering the course of cancer for the better. Patients with Medicaid have a unique barrier to accessing clinical trials because Medicaid is the only payer that is not federally required to cover the routine cost of clinical trial participation.

So Medicare and major commercial payers are required to have coverage for routine costs of clinical trial participation. Medicare provided this coverage beginning in the year 2000 after the Medicare National Coverage Determination Act protected their beneficiaries. The Affordable Care Act also requires insurers to cover routine patient care costs for trials participation. But Medicaid was not specifically called out or included in this requirement.

So today, commercial payers and Medicare are paying for the routine cost of clinical trial participation, but Medicaid is not required in any of the states by the federal government to cover these costs. And we know that these patients have financial barriers to accessing basic medical care and preventative services anyway. So this lack of mandated coverage makes it even harder for some Medicaid patients to participate in potentially life-saving treatment trials.

Clifford Hudis: I remember from, obviously in my days of doing clinical studies, there was often a lot of discussion about what was a routine cost of clinical care and what was a research cost. Can you expand a little bit on which parts of this are covered, or are they all covered, by these requirements?

Melissa Dillmon: So routine care costs are the regular doctor's appointment or E&M charge, radiology exams, drugs to manage side effects, supportive care medications, laboratory tests. It is not the cost of the drug or anything specifically related to that, it's just the routine care costs that go along with cancer treatment care, whether that patient was on a trial or on a regular, on-label drug.

Clifford Hudis: And in an ideal world, when this is working efficiently, this dovetails neatly with the fact that the non-routine care costs-- those things that are being required only because the participants involved in a very specific research study-- those costs are generally borne by a sponsor, right?

Melissa Dillmon: Correct. So perhaps if there is a genomic sequencing that was required, or a special laboratory test to assess a response in a marker that was not a routine care cost, that's usually covered by the sponsor of the clinical trial.

Clifford Hudis: And so just to make sure every listener is following, the irony here is without this requirement, in a sense, a person with good commercial insurance historically could find themselves not covered for the exact same costs that normally would have been covered solely because they're getting some treatment that is part of a clinical trial. And that seems like a perverse incentive in the wrong direction for all of us across all of society, right?

Melissa Dillmon: Exactly, especially at a time when it's challenging to get enough people on clinical trial, and we're trying to get more people on clinical trials. We're trying to remove those barriers.

Clifford Hudis: Right, and I would go even a step further and say it's a little bit of a paradox because it doesn't actually cost the insurer any more money for a person to be on a clinical trial and be covered for routine care. It's not as if they're getting an increased charge back because the patient's on a clinical trial. The research study is typically covering the non-standard research components of care anyway, right?

Melissa Dillmon: Correct. And then oftentimes, if there's an investigational drug, they're taking the cost of the drug out of the picture. So in some ways, you're actually saving the insurer that money.

Clifford Hudis: So it's funny, as well, a little paradox that Medicaid is the only major payer not federally required to cover their costs. Yet at the state level, I think-- and I just heard about another one today, I'll tell you-- some states have taken half steps or full steps to require Medicaid to cover the costs of clinical trial participation for patients, right?

Melissa Dillmon: That's correct. About a dozen states have taken action, through written statutes, or regulations, or policies, to require their Medicaid plan to cover these costs. But that's only a dozen states. That leaves about 42 million Medicaid patients who do not have guaranteed ability to participate in clinical trials.

Clifford Hudis: You know, I think some listeners may be surprised that you get that big number-- 42 million. And of course, that raises some basic questions about the reach, and scale, and extent of Medicaid. I think we should talk about that for a moment. So who has Medicaid as their primary insurance? That is, who is covered by Medicaid-- what kinds of patient populations and so forth?

Melissa Dillmon: So Medicaid covers about 20% of Americans. Patients on Medicaid are often lower income. It's usually children, older adults, patients with disabilities, and some patients in rural areas are more likely to have Medicaid. So depending on where those dozen states are that have those statutes, those may be states that don't have as large rural populations or lower income patients.

So racial and ethnic minorities are also overrepresented in Medicaid. For example, African-Americans represent about 12% to 13% of Americans, but 21% of patients receiving Medicaid are African-American. Hispanics represent 18% of the American census population, but 25% of patients on Medicaid are Hispanic.

Clifford Hudis: So this is the same old issue, where certain racial features, as it were, are surrogates for lower socioeconomic status, and that's what you're describing, unfortunately. Right?

Melissa Dillmon: Correct.

Clifford Hudis: OK. And so we take this group of patients that are, in general, a little bit disadvantaged-- lower socioeconomic status as an average, perhaps more rural, which itself represents a barrier to care-- and then you add on the limitation in terms of clinical trial participation coverage. So how does this translate into an increased burden for this special population, as opposed to everybody else?

Melissa Dillmon: Well, we already know that cost is a major barrier to participation in clinical trials. Patients who have larger income are more likely to participate in clinical trials, or be offered a clinical trial, or live in an area where there is a clinical trial available for them. Patients who have a lower income-- less than $20,000 per year-- have a much lower participation rate in clinical trials, and we are therefore missing a lot of patients who could be benefiting from those clinical trials and who could be contributing to the science.

And these patients don't have the financial resources to pay for their routine cost of care. They cannot afford to pay the E&M visit, or for a chest x-ray, or a CAT scan on their own. So that would pose a huge barrier for them to even consider participating in a clinical trial.

And one of the things that frequently is stated is, of course, this means that if you can't participate in a clinical trial, that they might be missing out on life-extending or life-saving therapy. And we have to admit that that, of course, is uncommon, but not impossible. But there are also more subtle ways that clinical trial participation can benefit the individual.

Clifford Hudis: They may enjoy a higher quality of life with some experimental therapies sometimes. And the other thing, of course, is that we all, as a society, benefit it clinical research studies are concluded more quickly. We get an answer faster and we can move on to the next big thing or build upon what we've learned. So it isn't as if the cost of this is limited solely to people with Medicaid. It's something, I guess, we all pay, right?

Melissa Dillmon: As a society, I think we suffer when patients are not able to participate in these studies.

Sep 03 2019

21mins

Play

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.

Find all of ASCO's podcasts at podcast.asco.org

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. You can find the ASCO Guidelines Podcast Series on Apple Podcasts or wherever you're listening to this show. And you can find all nine of ASCO's podcasts, which cover a wide range of educational and scientific content, and offer enriching insight into the world of cancer care at podcast.asco.org.

Disclaimer: 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.

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.

Aug 06 2019

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Policy Program Helps Oncologists Advocate for Their Patients, Fellows Say

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Dr. Joanna Yang and Dr. Robert Daly join ASCO CEO Dr. Clifford A. Hudis to discuss the Health Policy Leadership Development Program (HP-LDP). As former fellows, Drs. Yang and Daly provide insight as to how the program has made them better advocates for their patients.

TRANSCRIPT

Disclaimer: 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.

Clifford Hudis: 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 be joined by not one, but two of ASCO's rising leaders, Dr. Robert Daly and Dr. Joanna Yang. Both Dr. Daly and Dr. Yang are recent participants in ASCO's Health Policy Leadership Development Program, formerly known as the Health Policy Fellowship Program. This is a professional development program designed to build health policy and advocacy leadership expertise among our members. It's a one-year program where fellows get practical experience working with our policy and advocacy staff and council to craft policy positions and statements, along with other educational sessions on communication, leadership, and advocacy. Starting this year, participants will be able to participate as well in ASCO's Leadership Development Program, which offers mid-career oncologists the opportunity to improve their leadership skills and gain valuable training to set them up to be future leaders in oncology. Dr. Daly and Dr. Yang, welcome, and thank you for joining me today.

Joanna Yang: Thank you so much for the opportunity.

Robert Daly: Yes, thank you so much for having us.

CH: So Dr. Yang, I'm going to start with you. You were an ASCO Health Policy Fellow in 2017-2018. And I want to kick off our discussion by talking about what brought you to the program. Why were you interested in developing special expertise in policy work?

JY: Sure. So I've always been interested in health policy. And I had the opportunity to study health policy and health economics during undergrad. But of course, studying health policy is very different than creating or influencing health policy. When I started residency, I saw many ways in which health policy on a national level or even state level affected the patients I was caring for. And I felt compelled to do more. But the issue is that there is never any clear way for me to get involved or even to learn how I could learn how to shape health policy. And that's why the ASCO program is so great. I feel like it came at exactly the right time. I was looking for a way to learn more to develop the skills I needed to influence health policy. And ASCO came out with this structured and immersive experience where I could take the things that I had studied in school, and also the things that I'd seen in practice, and use them to actually have an impact on the patients I take care of.

CH: So Dr. Daly, you as well were one of our inaugural Fellows. What prompted your interest in applying for the program, especially given I think you were the first year?

RD: Yes.

CH: Right, so you took a leap off of the ledge there and said, I'll go first.

RD: Yeah, I'm similar to Dr. Yang. I had a real interest in cancer care delivery research during my fellowship at the University of Chicago. And I was lucky enough to be mentored by Funmi Olopade and Dr. Blase Polite. And Dr. Polite was really fundamental and helped developing the ASCO Health Policy Fellowship. And so I really saw this as an opportunity to augment that training but really gain skills in leadership, advocacy, and health policy, areas that I hadn't had exposure to in the past. So this seemed like the perfect program for me at that point in my career.

CH: I have to say parenthetically that I'm jealous of both of you, because while I was personally drawn, especially in later years in my career to the policy and advocacy aspects of work with ASCO-- and it truly is the reason that I moved from my traditional academic career to this role as CEO at ASCO-- I never, of course, had the opportunity to be trained and to learn how to do this professionally as you two have. So I am in awe of your accomplishments, as well as the opportunities that are going to continue to unfold in front of you because of this. So given that, and given that this is really the beginning, we hope, of a career with impact, we should talk a little bit about what you actually did. The program, as I mentioned earlier, lasts for a year. And during that time, Fellows worked very closely with our policy staff on a mentor project. So I'll start again with Dr. Yang. Can you talk about the project you worked, what it entailed, what you learned, and where this is going?

JY: Sure. So I worked on a two-part project with Alex Chen, who was my co-fellow during the past year. And as you hinted at, the work is actually still ongoing. So the first part was we looked at whether a bundled payment model could work in oncology. And this really culminated in a white paper for us. But the second part of the project, which built on the first part, was really the most fascinating. In the second part, it was really asking, if not bundled payments, then what? And we actually built on some of the work that Dr. Daly did that he'll probably describe in a little bit. But we actually worked on designing a pathway-based alternative payment model. And of course, going into this, I had no experience designing alternative payment models at all. But the beauty of the program is that from the very beginning, Deb Kamin, said, we will not be having you do any work that is not necessary. So all the work that you do is important to ASCO, is important to our patients. And that was really true for our project. So we were able to work with the ASCO staff, and our mentors, Ray Page, and Linda Bosserman, and a whole team of experts to create an alternative payment model that we thought would allow oncologists to prescribe the right drug at the right time, without being penalized by the high drug costs.

CH: So I guess, based on that, we really should have started with you, Dr. Daly. But your mentor project was centered around clinical pathways. And I understand that ends up being the foundation for the alternative payment model that Dr. Yang just described. So can you talk a little bit about that process, what you did as an inaugural fellow in this and what you learned as you went through the work? RD: Absolutely. So I was lucky enough to be able to serve on the ASCO Task Force on Pathways. So that was an incredible experience for me because I really got to interact with leaders on this issue, including Robin Zon and Ray Page, who are very active in cancer care policy, both at the state level in Indiana and Texas, but also on a national level. So to be able to gain their mentorship that early on in the fellowship was really a great asset for me. And we were looking at, how do we write the criteria for what constitutes a high-quality pathway? So I really got to see, from soup to nuts, how do you write a policy statement? How do you solicit input from those important stakeholders? So the stakeholders in this case were fundamentally the patients, but also providers, ASCO's Government Relations Committee and State Affiliate Counsel, ASCO's board, the vendors-- get all of their input together to create a policy statement that can really influence change. And then lastly, I played the part of representing ASCO and in discussions with the pathway vendors about these criteria for high-quality pathways. So I learned about the important role ASCO can have on influencing the development of products and services that impact patient care, but also the impact ASCO can have on legislation. So in California, Connecticut, and other states, they started to look at policy around pathways, policies around implementing the criteria that ASCO had developed, so that those pathways that were being used in their state were high quality. So it really showed me the reach of ASCO and the impact of ASCO on patients and providers. CH: That is amazing because it really is a reminder-- and I'm going to come back to this idea-- about how much impact one person and one project can ultimately have. And I think that in these sometimes cynical times, people forget that. I alluded to this before about my own engagement with ASCO was accelerated by my experience as an advocate on Capitol Hill-- again, an amateur to your professionalism. So I wonder if you would reflect on your experience during the fellowship program. I understand you were both frequently called on to join in advocacy meetings on Capitol Hill. And this is with federal agencies, as well as, I assume, with representatives, senators, and their staff. Did either of you have any experience doing this before ASCO took it to Capitol Hill? RD: I had never had any experience doing advocacy meetings. So it was really-- the fellowship really helped me learn how to do that and how to do that effectively. CH: What was the first meeting like? RD: My first meeting was here in Manhattan. It was at the office of Senator Gillibrand. And I was accompanied by Heather Hilton, who is an ASCO advocate and someone who's served on the Government Relations Committee. And I was really nervous. I didn't know what to expect. But we met with one of her health policy staffers and really had an engaging discussion about an ASCO advocacy issue where we really felt heard. We were able to share patients' stories and also deliver data that ASCO had collected to help support our view. So it was really an exciting experience for me. And then I got to replicate that experience on Capitol Hill, meeting with congressional representatives from New York in their offices, but then also, as you said, going to government agencies, which was a different experience as well. So I really got to see a broad perspective of how you can advocate for policy issues for ASCO. CH: Dr. Yang, how would you describe your initial advocacy meetings for someone who hasn't participated before? What does it feel like to walk into that first meeting and begin that first discussion? JY: Sure. I've done that for my friends before. I've described these meetings. And they always say, it's really not at all what they expected. And I think that Dr. Daly's description is exactly right. So you go with your group-- usually it's by state-- to the member's office. And then depending on how much room there is and how many meetings are being held that day, your meeting is either going to be in a conference room in the member's office or even, more frequently, in the hall or any room that's available. And the member is not always there, but one of their staffers is, or sometimes multiple staffers, who are always really young but super, super, super knowledgeable about the issue. Basically, you go around, and you introduce yourselves and then describe the issues that you're here to discuss. And it's interesting because ASCO always does a great job of making you exceedingly well-prepared with the facts. But the truth is that most members and most staffers are most interested in hearing the patients' stories, which is why it's so important that oncologists come to the Hill to have these meetings. I think that no matter how well you try to prepare, ultimately, it really just comes down to engaging with the staffer and finding some area of common ground. And cancer is so common that most of the time in these meetings, I find that staffers or members will say, I have a family member or friend or some other loved one who has cancer. And it's really great that you guys are here. CH: My own experience-- I mean, I'm here to talk to you. And the listeners want to hear from you. But I just can't help but share. When I got involved in this before you all were, the key issue that we were confronting was the decade-long flat-- in dollars-- flat funding of the NIH and the NCI. And my first trips to Capitol Hill consisted of virtually beating on doors and explaining why this was a mistake for the country and for our people, and getting what felt like the cold shoulder. Over and over again, the same arguments seemed to fall on deaf ears. But-- and this is an important "but"-- what I have learned is that repeatedly making rational, evidence-based, and appealing anecdotal arguments, just as you describe, can ultimately move the needle. And it does. And so my personal cynicism with regard to politics and making a difference has gone down, not up, with aging. And I think listeners should think about this. You will never go to a congressional office and change a mind in one quick phone call. But when dozens and hundreds of people do it repeatedly over months and years, we actually do have the chance to positively influence policy and legislative actions and regulations in the United States. And you should forgive me for waxing so poetic. You should be proud that you've committed to doing this early. And I hope you start to see the rewards. So I'm sorry to carry on about my own experience here. But it really is part of what has helped motivate all the staff to get behind this program and launch it and support it. Looking back, I'll turn back to you Dr. Daly. You're a couple of years removed now from the program. Can you identify one or several key learnings from your time as an ASCO Policy Fellow that have stuck with you, that you find yourself coming back to in your daily life? RD: Yeah, I mean, I think what you've just said, Dr. Hudis, about how you can really have an impact is something that I learned during this fellowship. It wasn't something that I had been aware of in the past, because I had never done advocacy work before in the past. So I think what this fellowship really trained me to do is to be an effective advocate. And that is something that I can use in a multitude of different areas as an oncologist. So combining the patient stories that we talked about that are so visceral and so needed when you're trying to get through to those legislators or policymakers that you're trying to reach-- but also backing that up with data, and I think ASCO really equipped us well as advocates to have the data, as well as the personal stories, to influence change. So using tools like CancerLinQ to be able to look at broader data sets and say, we know this is impacting our patients. We can see that. And now we need to think of a solution for change. And I think being involved in helping to create some of those solutions was also really valuable for me. So with the pathways, creating the policy paper, but also serving on committees during that fellowship year on MACRA and other issues, like opioid legislation, that were really affecting our patients, and seeing how ASCO is effecting change in those areas, was something that will stay with me throughout my career. CH: And how about you, Dr. Yang? Do you see any practical day-to-day impact, for example, in your work with patients from your time in the fellowship? JY: Yeah, absolutely. I think because I spent most of the past year thinking about high drug costs, both for chemotherapies, immunotherapies, and supportive drugs, I'm much more thoughtful about the costs that are passed on to our patients. And that can actually be really significant. And one of the things that I do much more often is I ask about cost to my patients when I prescribe medications. And that I really attribute directly to work that I was doing with ASCO. The other thing is that working with patients actually often gives me ideas. So I'll see patterns emerging. And I'll think, we really need to work on a policy that addresses this. And the great thing about the Health Policy Fellowship is that you remain involved with ASCO. So when I see these issues, I'm able to take them back to ASCO and to the committees. CH: Well, speaking of the committees, after you and all of our Fellows complete the one-year program, you were automatically added to one of ASCO's relevant committees. And I think you're both members of the Clinical Practice Committee. I'm curious-- I'll start with you, Dr. Daly-- has your time as a Health Policy Fellow helped you in your work on the CPC, and how? RD: I think, absolutely. It's made me more fluent in the issues that the CPC is confronting, the sort of things like the Oncology Care Model, rural cancer care. I now have a foundation where I'm able to contribute in a way on that committee that I never could have before or without the Health Policy Fellowship. CH: Yeah, I think it's often the case that sometimes-- or I shouldn't say often-- I think sometimes it's the case that people get onto committees and really do have a steep learning curve. It seems like maybe this could have accelerated your start on the committee. Is that your experience, Dr. Yang? JY: Yeah, I think so. I think that the Health Policy Fellowship, that first year is a really steep learning curve. But it does, as Dr. Daly said, provide a great foundation to just be aware of all of the issues that affect cancer doctors and cancer patients. CH: So I'm going to go to a little bit of a speed round, if you will, and ask you both to think about the other members of our community who have not had the opportunity to do this and might not ever have thought about it. Dr. Yang, finishing the program last summer of course-- so it's fresher, I think, for you-- why do you think it would be important for oncologists to be aware of and engaged in policy discussions, rather than nose to the grindstone, thinking about their clinical and research responsibilities on a daily basis?

JY: Mainly, I really think that the reason for oncologists to be involved in this is that regardless if you are thinking about it or not, health policy affects you. And it affects oncologists. It affects how they practice. It affects how they are able to care for their patients and the type of care that they're able to provide. And if oncologists aren't involved, their voice is going to be lost. And oftentimes, they're the most important voice for their patients. CH: And Bobby, what would you say to the old version of me, the cynic, who says, this is a waste of time-- I'm not getting involved?

RD: Well, I do think it really makes your career more exciting to be involved in health policy issues. It really broadens your view of how you think about patients and how you think about cancer care, and makes coming to work every day, I think, more exciting because you have this other lens that you're looking at issues with. CH: And looking back more specifically, and not intending to turn this into a sales job for the Policy Fellowship-- we only have two slots a year-- but I wonder what each of you would say to young colleagues thinking about this. What's the best reason to get involved in the Health Policy Fellowship at ASCO? I'll start with you, Dr. Yang. JY: I think that if you're interested in quality of care, the costs of care, access to care, then this fellowship is the right fellowship for you. And I think that being interested in those things doesn't necessarily provide you with the skill set you need to actually do meaningful work in that realm. And I think that the fellowship program really does provide you with tangible skills that you can then use to write policy briefs, to hold meetings, to be an advocate, all of which are really, really, really important. CH: Dr. Daly, is there anything you can add to that? Or does that pretty much sum it up? RD: I think that's absolutely right. I would just add the mentorship of the fellowship is really incredible, so getting to interact with the ASCO leaders, like Robin Zon, or Ray Page, or Blase Polite, but also the ASCO staff as well, who are incredible in the policy area, like Deb Kamin. I think I learned so much from being in their presence for a year and just absorbing all of their knowledge that they had, an experience they had. And when I was at the annual meeting just a couple of weeks ago, it was just such a fun pleasure to be there and see all of them and know that those relationships are something that will be with me throughout my career. And they really influenced me. CH: Wow. I think that's great. And I am so proud of both of you and all the participants in these and the other development programs that we offer. I will share with you that from the perspective of the board of directors, these programs really represent the crown jewel, something that the board members take the light in. And you should be proud to have contributed the way you have. So Dr. Daly, Dr. Yang, I want to thank you again for joining me today for this ASCO in Action podcast.

RD: Thank you so much for having us.

JY: Thank you.

And for all of our listeners, if you want to learn more about ASCO's Health Policy Leadership Development Program, please visit us at asco.org and search for "policy leadership." The application period for the 2020-2021 year is now open, and it will be open through the end of September. So there is time to get those applications in. And with that, until next time, I want to thank everyone for listening to this ASCO in Action podcast.

Jul 09 2019

22mins

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