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Cancer Policy Roundtable Fall 2022 November 17

Cancer Policy Roundtable

November 17, 2022 | 9:00 AM ET

Four Seasons Hotel – Washington, DC

Attendees must be fully vaccinated.

CPR Spring 22 - COVID-19 and Cancer Panel Discussion

Panel Discussion: Cancer Care During the Pandemic and Beyond (Spring 2022 CPR)

NCCS’s bi-annual Cancer Policy Roundtable (CPR) convenes stakeholders in the cancer community to discuss pressing issues related to cancer research, development of new cancer therapies, and the delivery of quality cancer care. Participants include cancer survivors, advocates, providers, payers, researchers, government officials, and industry representatives.

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Photo of Debbie Wasserman Schultz speaking at an NCCS event

Rep. Debbie Wasserman Schultz (FL-23) will speak at the Fall 2022 CPR. Photo: Leslie Kossoff/LK Photos

This year’s Fall Cancer Policy Roundtable speakers and topics include:

  • Congresswoman Debbie Wasserman Schultz (FL-23) will reflect on her personal cancer survivorship journey and discuss her forthcoming survivorship legislation.
  • A panel of health policy experts will offer their perspectives on the short-and long-term implications of the mid-term elections, with attention to how the election results will affect cancer survivors.
  • We will hear from our two Stovall Award winners, as they reflect on their careers in medicine and advocacy.
  • Noam Levey from Kaiser Health News will share his findings from Diagnosis: Debt, a reporting partnership between Kaiser Health News and National Public Radio, and a panel of experts will weigh in on how medical debt impacts cancer survivors.
  • We are also honored that the National Cancer Institute’s new director, Dr. Monica Bertagnolli, will be in attendance to deliver the closing keynote.

Meeting Agenda

Session Information

  • 9:00 AM – Registration and Breakfast
  • 9:30 AM – Opening Keynote – Congresswoman Debbie Wasserman Schultz (FL-23)
  • 10:00 AM – Mid-Term Election Update: What to Expect for the Future of Health Policy
    • Debra Curtis, McDermott+Consulting
    • Shelagh Foster, JD, Polsinelli
    • Lydia Isaac, PhD, MSc, National Urban League
    • Harry Sporidis, Polsinelli
    • Rodney Whitlock, PhD, McDermott+Consulting
    • Shelley Fuld Nasso, Moderator

  • 11:15 AM – Palliative Care is Survivorship Care – Patricia Ganz, MD
  • 12:00 PM – Lunch
  • 1:00 PM – Survivorship and Advocacy – Alicia Staley
  • 1:30 PM – Medical Debt for Cancer Survivors
    • Noam Levey, Kaiser Health News
    • Kristie Fields, PinkSlayer
    • Lauren Ghazal, PhD, University of Michigan
    • Tina Shih, PhD, MD Anderson Cancer Center
    • Shelley Fuld Nasso, Moderator
  • 2:45 PM – Closing Keynote: Monica Bertagnolli, MD, Director, National Cancer Institute

Background Reading

We have assembled some background reading materials to help you prepare for the meeting. Click a topic below to expand.
Click here to download materials in PDF format.

The midterm elections have taken place, and it is clear that Democrats will control the Senate in the next Congress while Republicans are favored to control the House of Representatives. However, vote counting continues in a number of states, with results expected in days or weeks in some cases. The final Senate race in Georgia between Senator Warnock and Herschel Walker heads for a runoff on December 6.

In the days before the midterms, policy experts and Congress watchers were busy making predictions about the potential impact of Republican control of Congress on health policy.

We are sharing below some of that pre-election reporting, as it gives a sense of the broad sweep of issues that may be addressed if Republicans have control of the House. Republican leaders had made plans to tout their agenda on Tuesday night after the anticipated red wave. When that red wave did not materialize on Tuesday, those announcements of leadership moves and agenda items did not materialize. That is another reason we’re sharing the pre-election agenda predictions.

House Republicans have already made clear their targets for investigations in the new Congress. For example, National Public Radio (NPR) reports that Representative Jim Jordan, who would be Chair of the House Judiciary Committee under Republican control, has already stated that the Federal Bureau of Investigation (FBI) and Department of Justice (DoJ) will be targets of investigations. NPR reported:

In a glimpse of what’s to come, House Judiciary Committee Republicans warned the FBI and Department of Justice that they plan to investigate both agencies if their party retakes the House of Representatives. And on Friday they released a 1,000-page report about whistleblower accounts of “a rampant culture of unaccountability, manipulation, and abuse at the highest level.”

Republicans will more than likely retake the House, and possibly the Senate, with the party heavily favored to win midterm elections in several congressional districts.

Ohio Rep. Jim Jordan sent a letter to U.S. Attorney General Merrick Garland, who heads the DOJ, and another to FBI Director Christopher Wray requesting documents pertaining to committee investigations lurking in the not-too-distant future. The report, titled FBI Whistleblowers: What Their Disclosures Indicate About the Politicization of the FBI And Justice Department, alleges political corruption at the highest levels of the FBI, according to a House Judiciary Republicans press release. Republicans assert in the report that whistleblowers have brought to their attention, “allegations of political bias by the FBI’s senior leadership and misuses of the agency’s federal law-enforcement powers.” The report, while primarily focused on the FBI, also targets the Justice Department as well.

In an opinion piece in the New York Times, Georgetown law professor Josh Chafetz predicts broad use of investigative power by newly empowered Republicans but also offers those Republicans some warnings:

And such combativeness could tear at our already frayed political culture in ways that threaten even deeper, more destructive division.

These tools all come with political risks for the majority wielding them; much of what we think of as skillful legislative leadership is knowing when to use these tools and when to leave them in the toolbox. Used skillfully, they can greatly empower a legislative party, even if it controls only one chamber. And whether used skillfully or not, they will certainly shape the next two years of American national politics if the G.O.P. does indeed capture at least one house of Congress next week.

CNN has reported on the House Republicans’ plans to investigate Hunter Biden and many others:

What about the impact of a Republican Congress on health policy? Several health issues are typically described as bipartisan issues; these include cancer initiatives and biomedical research funding.  However, experts suggest that bipartisanship will be hard to find in the next Congress.

Sarah Owermohle and Rachel Cohrs of STAT News reported, “With Republicans on the Verge of Congressional Control, Science is on the Line.” They wrote:

In the days before the midterms, some Republicans turned their attention to Medicare and Social Security, suggesting big reforms for both programs if they are in the majority.

Jim Tankersley of the New York Times reported on possible Medicare and Social Security proposals from the Republicans:

WASHINGTON — Congressional Republicans, eyeing a midterm election victory that could hand them control of the House and the Senate, have embraced plans to reduce federal spending on Social Security and Medicare, including cutting benefits for some retirees and raising the retirement age for both safety net programs.

Prominent Republicans are billing the moves as necessary to rein in government spending, which grew under both Republican and Democratic presidents in recent decades and then spiked as the Trump and Biden administrations unleashed trillions of dollars in economic relief during the pandemic.

The Republican leaders who would decide what legislation the House and the Senate would consider if their party won control of Congress have not said specifically what, if anything, they would do to the programs.

Yet several influential Republicans have signaled a new willingness to push for Medicare and Social Security spending cuts as part of future budget negotiations with President Biden. Their ideas include raising the age for collecting Social Security benefits to 70 from 67 and requiring many older Americans to pay higher premiums for their health coverage. The ideas are being floated as a way to narrow government spending on programs that are set to consume a growing share of the federal budget in the decades ahead.

Also in the New York Times, Paul Krugman editorialized about possible Republican plans on Social Security and Medicare:

The Times recently reported that Republicans, anticipating possible victory in the midterms, are embracing plans to cut Social Security and Medicare benefits — even though such cuts would be incredibly unpopular and would make nonsense of the G.O.P.’s attempts to portray itself as the party of the working class.

Before I get to what Republicans appear to have in mind, let’s note that the push to slash major benefit programs may be the ultimate example of an elite priority completely at odds with what ordinary Americans want.

Political scientists have found several areas in which the wealthy want to see spending cut, while most voters want to see it increased. The biggest gap in views is on Social Security, where the rich, by a large margin, want to see benefits reduced while the general public, by an even larger margin, wants to see them increased.

And Republicans are taking the side of the rich.

Now, there isn’t an official G.O.P. position on Social Security and Medicare — or, actually, any policy issue. But the Republican Study Committee, a caucus of House members that often sets the party’s agenda, has released a fairly detailed set of proposals titled “Reclaiming Our Fiscal Future” that would, I suspect, raise howls of outrage from many voters if they knew about it.

Reporters from National Public Radio (NPR) and Kaiser Family Foundation (KFF) have undertaken a partnership investigating the problem of medical debt in America. In the course of their reporting, they have shed significant light on the problem of medical debt among cancer survivors. There is an obvious reason for this focus, which is that the cost of cancer care is significant and as a result cancer survivors bear a heavy burden of debt.

See below an explanation from NPR and KFF of their reporting partnership.   And read an article in the series that focuses on cancer patients: In America, Cancer Patients Endure Debt on Top of Disease:

Diagnosis: Debt is a reporting partnership between KHN and NPR exploring the scale, impact, and causes of medical debt in America.

The series draws on the “KFF Health Care Debt Survey,” a poll designed and analyzed by public opinion researchers at KFF in collaboration with KHN journalists and editors. The survey was conducted Feb. 25 through March 20, 2022, online and via telephone, in English and Spanish, among a nationally representative sample of 2,375 U.S. adults, including 1,292 adults with current health care debt and 382 adults who had health care debt in the past five years. The margin of sampling error is plus or minus 3 percentage points for the full sample and 3 percentage points for those with current debt. For results based on subgroups, the margin of sampling error may be higher.

Additional research was conducted by the Urban Institute, which analyzed credit bureau and other demographic data on poverty, race, and health status to explore where medical debt is concentrated in the U.S. and what factors are associated with high debt levels.

The JPMorgan Chase Institute analyzed records from a sampling of Chase credit card holders to look at how customers’ balances may be affected by major medical expenses.

Reporters from KHN and NPR also conducted hundreds of interviews with patients across the country; spoke with physicians, health industry leaders, consumer advocates, debt lawyers, and researchers; and reviewed scores of studies and surveys about medical debt.

We previously shared some background reading that described what Republicans were saying (mostly before midterm voting actually occurred) about their legislative and investigative agenda. The emphasis was on investigations – of Dr. Fauci and others.

We are now sharing a short article from Axios’s Caitlin Owens that describes the Republicans’ health care agenda. In reading this, we realized that it was what was missing from the materials previously shared.

For the first time in more than a decade, a party without a definable health care agenda is on the cusp of a new congressional majority, all but ensuring that next year’s agenda will be driven by real-world events more than campaign promises.

Why it matters: Republicans have been eager to move on from health care for years, but a series of jarring events may draw them back in. The narrower the majority, the worse news that is for the party — and potentially for patients.

State of play: Several House races are still too close to call, but at this point, the most likely outcome is that the GOP ekes out a narrow majority.

  • Which party has control of the Senate may not be clear for another month if it comes down to who wins the Georgia seat, which is headed for a runoff.

The big picture: The Affordable Care Act — both its passage and Republicans’ attempt to scrap it — was a rallying point for both parties until 2018, when the GOP’s failed repeal attempt helped cost it control of the House.

  • Health care remained central to Democrats’ agenda over the last four years, culminating under the Biden presidency in enhancements to the ACA and a new law allowing Medicare to negotiate drug prices.
  • House Republicans’ vaguely worded health agenda references price transparency, telehealth and health savings accounts, hinting that the party’s goals are more small-bore than in the past. They’re also eyeing steps like eliminating any lingering COVID restrictions.

Reality check: Avoiding health care assumes the issue will largely be background noise to voters. But economic circumstances and policy cliffs will make it hard for a sector accounting for nearly 20% of the economy to just run on autopilot.

  • Inflation will be increasingly reflected in health care prices, particularly if hospitals successfully pass along rising underlying costs to insurers next year. Those will translate into large premium increases, borne either by patients or employers.
  • If hospitals and providers can’t pass along these rising labor and supply costs, some will experience severe financial challenges and will undoubtedly look to the government for help.
  • The lifting of the COVID public health emergency — whenever that happens — will begin a process in which millions of people will get purged from Medicaid rolls and the uninsured rate will spike.
  • New multi-million dollar drugs are already hitting the market, threatening state Medicaid program and small employers’ balance sheets.
  • The expected recession the U.S. is facing will complicate all of the above, if only because it will make paying for health care even tougher for patients.

What we’re watching: Whether some combination of factors will create enough pain to force Republicans to return to one of their least-favorite subjects.

  • That would be extremely tough for leadership to maneuver with a narrow majority. Finding consensus on any problem — let alone one as vexing as health care — may be near impossible.
  • Democrats, who are increasingly unlikely to keep the House, don’t exactly have a unified health care agenda waiting in the wings, either, after picking all of the lowest-hanging fruit this past Congress.

Yes, but: Under a GOP majority of any size, expect plenty of political noise around health care-related investigations and oversight, particularly surrounding the pandemic.

  • Republicans will also likely probe Biden administration actions like fixing the Affordable Cart Act’s “family glitch” and implementation of Medicare drug negotiations.

The intrigue: Democrats have cast congressional Republicans as intent on making cuts to Medicare and Social Security, but entitlement cuts are far from unifying among Republicans and would be dead on arrival in a majority where every vote counts.

The 2021 Annual Report to the Nation on the Status of Cancer details the economic burden of cancer care borne by cancer patients:

The announcement of the report states:

In 2019, the national patient economic burden associated with cancer care was $21.09 billion, made up of patient out-of-pocket costs of $16.22 billion and patient time costs of $4.87 billion. Patient time costs reflect the value of time that patients spend traveling to and from health care, waiting for care, and receiving care, according to the report.

The report, appearing October 26, 2021, in JNCI: The Journal of the National Cancer Institute, is the most comprehensive examination of patient economic burden for cancer care to date and includes information on patient out-of-pocket spending by cancer site, stage of disease at diagnosis, and phase of care. While this analysis is about the costs that are directly incurred by patients, which are critical to patient finances, the total overall costs of cancer care and lost productivity in the United States are much larger.

Among adults aged 65 years and older who had Medicare coverage, average annualized net out-of-pocket costs for medical services and prescription drugs, across all cancer sites, were highest in the initial phase of care, defined as the first 12 months following diagnosis ($2,200 and $243, respectively), and the end-of-life phase, defined as the 12 months before death among survivors who died ($3,823 and $448, respectively), and lowest in the continuing phase, the months between the initial and end-of-life phases ($466 and $127, respectively). Across all cancer sites, average annualized net patient out-of-pocket costs for medical services in the initial and end-of-life phases of care were lowest for patients originally diagnosed with localized disease compared with more advanced stage disease.

“As the costs of cancer treatment continue to rise, greater attention to addressing patient medical financial hardship, including difficulty paying medical bills, high levels of financial distress, and delaying care or forgoing care altogether because of cost, is warranted,” said Karen E. Knudsen, M.B.A, Ph.D., chief executive officer, American Cancer Society. “These findings can help inform efforts to minimize the patient economic burden of cancer, and specific estimates may be useful in studies of the cost-effectiveness of interventions related to cancer prevention, diagnosis, treatment, and survivorship care.”

Speaker Biographies

Click a speaker name to read more.

Monica BertagnolliMonica Bertagnolli, MD, began work as the 16th director of the National Cancer Institute (NCI) on October 3, 2022. She previously served as the Richard E. Wilson Professor of Surgery in the field of surgical oncology at Harvard Medical School, a surgeon at Brigham and Women’s Hospital, and a member of the Gastrointestinal Cancer Treatment and Sarcoma Centers at Dana-Farber Cancer Institute.

Throughout her career, Dr. Bertagnolli has been at the forefront of the field of clinical oncology, in particular, advancing current understanding of the gene mutation that promotes gastrointestinal cancer development and the role of inflammation as a driver of cancer growth. As a physician–scientist, she led gastrointestinal science initiatives from 1994 to 2011 within the NCI-funded Cooperative Groups Program (now known as NCI’s National Clinical Trials Network), and from 2011–2022 served as group chair of the Alliance for Clinical Trials in Oncology, a National Clinical Trials Network member organization. In addition, from 2007–2018, she served as the chief of the division of Surgical Oncology for the Dana-Farber Brigham Cancer Center.

Dr. Bertagnolli has championed collaborative initiatives to transform the data infrastructure for clinical research and is the founding chair of the minimal Common Oncology Data Elements (mCODE) executive committee. She also is a past president and chair of the board of directors of the American Society of Clinical Oncology and has served on the board of directors of the American Cancer Society and the Prevent Cancer Foundation. In 2021, she was elected to the National Academy of Medicine, having previously served on the National Academies National Cancer Policy Forum.

A native of southwestern Wyoming, Dr. Bertagnolli graduated from Princeton University and attended medical school at the University of Utah. She trained in surgery at Brigham and Women’s Hospital and was a research fellow in tumor immunology at the Dana-Farber Cancer Institute.

Debra CurtisDebra Curtis is a highly-respected health policy authority who helps clients advance their missions in Congress and beyond. With more than three decades of experience working both on the Hill and with the health insurance exchange marketplace, she helps clients execute payment strategy, see around the corner on policy and regulatory changes, and pursue effective advocacy. In addition, Debbie has deep experience working closely with payers, industry stakeholders and government officials at the federal, state and local levels.

During her 24 years as a Congressional Staffer, Debbie served most recently in a joint position as Chief of Staff to US Representative Pete Stark (D-CA), and as a professional staff member on the US House of Representatives Committee on Ways & Means, Health Subcommittee. Debbie was integrally involved in the creation and movement of health legislation through the committee, with a focus on improving and protecting Medicare. She was a key staffer in the development of the Affordable Care Act, and worked closely with the Administration and other Congressional committees and Leadership on the implementation of the law.

Debbie joins McDermottPlus from the DC Health Benefit Exchange Authority, where she was part of the founding team that established and operated DC Health Link, the District of Columbia’s online state-based health insurance exchange marketplace. In that capacity, she worked closely with stakeholders, advocates and government officials at the local and federal levels and led the Authority’s interactions with the Centers for Medicare and Medicaid Services.

Kristie FieldsKristie Fields is a breast and colon cancer survivor. After battling cancer, Kristie received her BS in Business Management and a Master’s in health science. Her goal was to be an administrator at a local hospitals or cancer centers. However, she was not able to get a fellowship because of COVID. Kristie then completed paperwork to become a nonprofit, advocating for at-risk populations and veterans. She goes into neighborhoods to educate people about how to communicate with health care professionals. She provides training sessions, motivational speaking, and navigates clients through the health care system. Kristie is a veteran and provides training programs for veterans as well. She teaches others how to get through their diagnosis and thrive. She would like to connect with CPAT participants to learn how to expand her organization and do more for her community.

Visit the website of Kristie’s non-profit, Pinkslayer.

Shelagh Foster, JDShelagh Foster, JD strives to meet client public policy goals and objectives based on the client’s needs and capabilities. Shelagh has more than 20 years of experience in public policy, political strategy and execution, and advocacy at both the federal and state level. She has experience in emerging health care policy issues as well as developing and launching an array of advocacy programs, including a state advocacy program, a grassroots program and a political action committee. Shelagh’s holistic approach to client issues utilizes her experience with a wide array of policy levers to achieve successful outcomes.

Prior to joining Polsinelli, Shelagh honed her health care policy expertise during the two decades that she led the advocacy activities for the American Society of Clinical Oncology (ASCO), the national medical society representing oncology providers. During this time, Shelagh led the organizations efforts on Capitol Hill, with federal agencies and in state legislatures. Her previous experience also includes advocacy on home health, durable medical equipment, and civil rights issues.

Patricia GanzPatricia A. Ganz, MD, a medical oncologist, has been a member of the faculty of the UCLA School of Medicine since 1978, where she serves as Distinguished Professor of Medicine. She has also been a faculty member at the UCLA School of Public Health since 1992, serving as Professor of Health Policy & Management. She was a founding member of the National Coalition for Cancer Survivorship (NCCS) in 1986. Since 1993 she has been the Associate Director for Population Science at the Jonsson Comprehensive Cancer Center. In 1999 she was awarded an American Cancer Society Clinical Research Professorship for “Enhancing Patient Outcomes across the Cancer Control Continuum.” Dr. Ganz was elected to the Institute of Medicine (IOM) in 2007, now National Academy of Medicine (NAM). She served on the National Cancer Institute Board of Scientific Advisors from 2002-2007 and on the American Society of Clinical Oncology (ASCO) Board of Directors from 2003-2006. She received the American Cancer Society Medal of Honor in 2010. Dr. Ganz received the Komen Professor of Survivorship Award 1999-2000, and was a Komen Scholar from 2009 to 2019.

Dr. Ganz was privileged to work closely with the late Ellen Stovall in multiple activities including as co-chairs of the Cancer Quality Alliance (2005-2010) and as members of the IOM/NAM National Cancer Policy Forum, co-leading several workshops. Dr. Ganz has served on three NAM consensus committees: From Cancer Patient to Cancer Survivor, 2005; Cancer Care for the Whole Patient, 2008; Delivering High-quality Cancer Care, 2013; and Diagnosing and Treating Adult Cancers and Associated Impairments, 2021. Dr. Ganz is a pioneer in the assessment of quality of life in cancer patients, and has focused much of her clinical and research efforts in the areas of breast cancer and its prevention. At the Jonsson Comprehensive Cancer Center, she leads Cancer Control and Survivorship Program. Her major areas of research include cancer survivorship and the late effects of cancer treatment, measurement of patient reported outcomes in clinical treatment trials, and quality of care for cancer patients. In July 2017, Dr. Ganz became Editor-in-Chief of the Journal of the National Cancer Institute (JNCI).

Lauren GhazalLauren Ghazal, PhD, FNP-BC, is a family nurse practitioner and post-doctoral research fellow at the University of Michigan – Ann Arbor. She is affiliated with the Center for Improving Patient and Population Health at the School of Nursing and the Rogel Cancer Center. Dr. Ghazal completed her PhD at the Rory Meyers College of Nursing at New York University, where she was a T42 pre-doctoral fellow in Occupational and Environmental Health and received grant support from the National Institutes for Occupational Safety and Health. Her dissertation focused on work-related challenges and financial toxicity in adolescents and young adult (AYA) cancer survivors. Her broader program of research builds on her background in economics, clinical, and personal experiences to address cancer survivorship disparities in adolescents and young adults.

Lydia Isaac, PhDLydia Isaac is the Vice President for Health Equity and Policy at the National Urban League. Dr. Isaac has a faculty appointment at the Johns Hopkins University in the Department of Health Policy and Management. She most recently served as the Executive Director of the RWJF funded Health Policy Research Scholars Program (HPRS) program where she was responsible for the day-to-day operations and curriculum development for the program. Previously, she was the Director of Policy and Health Systems Analysis in the Office of Policy, Planning and Strategic Data in the FirstDeputy Commissioner’s office at the NYC Department of Health and Mental Hygiene.

Dr. Isaac has worked in local and state government throughout her career and in academia where she has taught classes on community health assessment and the social disparities in health. She has a bachelors’ degree in Ecology and Evolutionary Biology from Princeton University, a Master of Science degree in Health and Social behavior from the Harvard School of Public Health and a doctorate in Health Policy and Management from the Johns Hopkins Bloomberg School of Public Health.Dr. Isaac’s research interests include advancing Health Equity through translating research into policy and practice, investigating the mechanisms that lead to racial and ethnic health disparities, the social determinants of health and the neighborhood environment and its role in health promotion.

Noam LeveyNoam N. Levey, Senior Correspondent, joined KHN in January 2021 after 17 years at the Los Angeles Times, the last 12 as the paper’s national health care reporter based in Washington, D.C. Noam has reported on health care issues from more than three dozen states and four continents and won numerous honors, including the prestigious NIHCM award for his 2019 series “Inside America’s High-Deductible Revolution.” He has also been published in Health Affairs, JAMA, and The Milbank Quarterly.

Noam started his career at newspapers in Duluth, Minnesota; Montgomery, Alabama; and the United Arab Emirates. Before his stint at the L.A. Times, he was an investigative reporter for the San Jose Mercury News. Noam has a degree in history and Near Eastern studies from Princeton University.

Shelley Fuld NassoShelley Fuld Nasso, MPP has served as Chief Executive Officer of NCCS since October 2013. Prior to joining NCCS, Shelley served in leadership roles at Susan G. Komen, where she leveraged Komen’s grassroots network in Washington, DC, and in state capitals. Under her leadership, Komen successfully secured $80 million in state funding for cancer screening and treatment for uninsured and under-insured women.

Shelley has also served as Director of Community Philanthropy at The Dallas Foundation and held management positions at communications and technology enterprises. She is a graduate of Rice University and holds a Master of Public Policy from the Harvard Kennedy School.

Shelley’s commitment to the work of NCCS is strongly tied to the experiences in the cancer care system of her dear friend, Dr. Brent Whitworth, a beloved physician who was diagnosed with stage IV cancer days before his 42nd birthday and who passed away 19 months later. Through Brent’s experiences, Shelley witnessed the strengths and flaws of the cancer care system and embraces the notion that policy change can make cancer care better for patients and caregivers.
Shelley and her husband Michael live in Maryland and are the parents of three young boys.

Harry SporidisDrawing on over 20 years of public policy and advocacy experience, Harry Sporidis provides clients with senior level proficiency in crafting solutions to legislative and regulatory challenges. He has worked closely with House and Senate Republicans and Democrats over his career on a wide range of issue areas including the environment, health care, transportation, trade, energy, and financial services.

Harry began his career on Capitol Hill, providing policy counsel to several members of the House of Representatives. Shortly after Republicans gained control of the House in 1994, Harry served as senior legislative assistant to Congressman Jim Greenwood (R-PA). Congressman Greenwood was the chairman of the House Energy and Commerce Subcommittee on Oversight and Investigations, a panel with broad jurisdiction. Harry provided counsel on policy issues before the committee and subcommittee, assisted in managing the office’s legislative staff, and provided strategic advice regarding institutional knowledge of Congress and the federal legislative process.

From 1991 to 1995, Harry was Legislative Assistant to Congressman Mike Bilirakis (R-FL). Congressman Bilirakis was the chairman of the House Energy and Commerce Subcommittee on Health. Harry developed much of his early legislative knowledge while working for Congressman Bilirakis.

Harry began his career in the office of Congressman E. Clay Shaw (R-FL), who was the chairman of the House Ways and Means Subcommittee on Trade.

Since 1998, Harry has represented clients in the areas of pharmaceuticals, medical devices, health care delivery, energy, and telecommunications. Clients include Pfizer, Amgen, Sanofi Pasteur, Novartis, Theragenics, Mentor, the American Society of Clinical Oncology, Cox Communications, Dunn-Edwards Paints, Exelon Generation, and Florida Power (now Progress Energy).

Alicia C. StaleyAlicia C. Staley serves as vice president of Patient Engagement at Medidata. She oversees the Patient Insights Program and the Patient Insights Board. She works to infuse the patient perspective throughout the product development lifecycle and help engage patients in novel ways. She created Patient Centricity by Design (PCbD) in 2018 as a way to provide structure and governance for developing patient-centric technical solutions.

Alicia is also a three-time cancer survivor, first diagnosed with Hodgkin’s disease as a sophomore during college. With an extensive network of patient advocates and non-profit organizations, she collaborates with a wide range of stakeholders to help improve processes and policies that impact cancer care.

As a champion of patient advocacy and engagement, she understands the critical issues facing patients seeking to engage in clinical research.

Alicia has more than 20 years of experience in software design and information systems management. Prior to joining Medidata, Alicia worked at Cure Forward leading their patient engagement and community initiatives to help advance clinical research. An early adopter of social media, she co-founded #BCSM, which attracts over 250 global participants each week to its scheduled online discussions. Since its launch in July 2011, #BCSM has been showcased at SXSW in 2013, 2014, 2015, and again in 2017. This foundational online social media support channel is recognized as the gold standard for disease-specific social media networks.

She is the 2019 eyeforpharma Patient Champion award winner for her extensive patient advocacy and engagement work. She truly understands the critical issues facing patients seeking to engage in clinical research. With a keen focus on improving access to clinical trials, Alicia is passionate about making a difference for patients seeking clinical trials.
In 2021, Alicia won the CHI SCOPE Participant Engagement award for her work on Medidata’s Patient Centricity by Design initiative. Leveraging the classic design thinking framework, Alicia and her team developed a methodology for surfacing key insights from a patient’s clinical trial journey and transforming those insights into software development elements. This methodology is utilized to deliver world class experiences to patients on Medidata supported clinical trials.

Alicia has co-led numerous research studies on how patients share information in online forums and has published numerous research papers on patient engagement and the need for patient-centric approaches to the design and development of clinical trials. She has a Mechanical Engineering Degree from Syracuse University and a Masters of Information Systems and an MBA from Boston University.

Rep. Debbie Wasserman SchultzDebbie Wasserman Schultz has dedicated her public life to serving South Floridians and standing up for justice, equality, and opportunity wherever and whenever it is threatened. As Florida’s first Jewish Congresswoman, she has earned the respect of her colleagues for working tirelessly on behalf of seniors, children, and families for nearly three decades.

After announcing her own battle with breast cancer in 2009, Wasserman Schultz introduced the EARLY Act, a piece of legislation designed to increase breast cancer education and awareness. The EARLY Act became law as part of the Affordable Care Act, signed by President Barack Obama in 2010. Wasserman Schultz also worked with Republican Congresswoman Renee Elmers to write and pass the PALS Act, which helps increase young women’s access to mammograms.

Congresswoman Wasserman Schultz attended the University of Florida where she served as president of the Student Senate and graduated with a Bachelor’s Degree in Political Science in 1988 and a Master’s Degree in 1990. She has been married to Steve Schultz for more than 20 years and together they have three children.

Ya-Chen Tina Shih, PhDYa-Chen Tina Shih, PhD, is professor and Chief of Section of Cancer Economics and Policy, Department of Health Services Research at the University of Texas MD Anderson Cancer Center. Her research applies health econometric methods to study technology diffusion in cancer and modeling methods to evaluate cost-effectiveness of screening strategies. Dr. Shih is associate editor of Journal of the National Cancer Institute and is a member of the American Cancer Society Guidelines Development Workgroup.

Rodney-WhitlockRodney Whitlock, PhD, is an accomplished health care advisor with more than two decades on the Hill where he specialized in rural health, the health care safety net and disability policy.
With more than 25 years of experience, Rodney possesses and offers clients the kind of knowledge that is uniquely available to those who have drafted and advanced legislation. He strategically guides clients through dense Medicare and Medicaid issues that have significant business impact.

While working in Congress, Rodney served as former US Representative Charlie Norwood’s (R-GA) health policy director where he managed the Patients’ Bill of Rights (S.1890), among other notable health policy matters. Rodney then went on to serve Senator Chuck Grassley (R-IA) in the Senate. He first joined the Senate Finance Committee Staff as a health policy advisor to Chairman Grassley, and ultimately joined the Senator’s personal office as health policy director. During his time in the Senate, Rodney served as the lead Republican staffer for Medicaid legislation from 2005 to 2010, and continued to serve Senator Grassley on all health-related issues through 2015. During his time in the Senate, Rodney helped staff Republicans in the Senate on such prominent and important legislation as the Deficit Reduction Act of 2005, Tax Relief and Health Care Act of 2006, CHIP Reauthorization Act of 2007 and 2009 and Affordable Care Act of 2010.

For the last 20 years, Rodney has been an adjunct faculty member at the George Washington University Milken Institute School of Public Health’s Department of Health Policy and Management, and the Graduate School of Political Management’s Department of Legislative Affairs. Hundreds of students have taken Rodney’s courses and have gone on to pursue careers in Washington, DC.

Social Media Information

We encourage speakers and participating organizations to engage with NCCS on social media throughout the Fall 2022 Cancer Policy Roundtable. Please contact NCCS Communications and Marketing Manager Kara Kenan at with any questions or concerns.

Social Media Toolkit with Sample Posts

We’ve put together a social media toolkit below with sample posts to help you engage with us during the meeting.

Social Media Toolkit – PDF

Engage with NCCS on social media by:

  • Following us.
  • Taking photos. Please email Kara Kenan ( photos you’d like shared by NCCS.
  • Posting about sessions throughout the day, including posts using the sample copy below.
  • Like, share and comment on NCCS social media posts.
  • Using the hashtags below.

NCCS’s social media handles:


  • #CPR22
  • #cancersurvivorship
  • #canceradvocacy

Sample Social Posts

We have provided some sample posts below for each social platform.

Excited to attend @CancerAdvocacy’s Fall 2022 Cancer Policy Roundtable. I look forward to learning from the speakers’ discussions on pressing issues related to cancer research, therapies, and care delivery. #CPR22

I’m proud to represent [organization] at @CancerAdvocacy’s Fall 2022 Cancer Policy Roundtable. This is a time of hope for the future of cancer care. #CPR22

Thank you, @CancerAdvocacy, for hosting the Fall 2022 Cancer Policy Roundtable. I’m excited for the future of cancer care. #CPR22

Excited to attend the National Coalition for Cancer Survivorship’s Fall 2022 Cancer Policy Roundtable. I look forward to learning from the speakers’ discussions on pressing issues related to cancer research, therapies, and care delivery. #CPR22

I’m proud to represent [organization] at the National Coalition for Cancer Survivorship’s Fall 2022 Cancer Policy Roundtable. This is a time of hope for the future of cancer care. #CPR22

Thank you, National Coalition for Cancer Survivorship, for hosting the Fall 2022 Cancer Policy Roundtable. I’m excited for the future of cancer care. #CPR22

Excited to attend @cancersurvivorship’s Fall 2022 Cancer Policy Roundtable. I look forward to learning from the speakers’ discussions on pressing issues related to cancer research, therapies, and care delivery. #CPR22

I’m proud to represent [organization] at @cancersurvivorship’s Fall 2022 Cancer Policy Roundtable. This is a time of hope for the future of cancer care. #CPR22

Thank you, @cancersurvivorship, for hosting the Fall 2022 Cancer Policy Roundtable. I’m excited for the future of cancer care. #CPR22

Excited to attend @cancersurvivorship’s Fall 2022 Cancer Policy Roundtable. I look forward to learning from the speakers’ discussions on pressing issues related to cancer research, therapies, and care delivery. #CPR22

I’m proud to represent [organization] at @cancersurvivorship’s Fall 2022 Cancer Policy Roundtable. This is a time of hope for the future of cancer care. #CPR22

Thank you, @cancersurvivorship, for hosting the Fall 2022 Cancer Policy Roundtable. I’m excited for the future of cancer care. #CPR22

For Organizations:

[Speaker] is a panelist at today’s Fall 2022 Cancer Policy Roundtable. We’re excited to support @CancerAdvocacy in advancing the #cancersurvivorship cause. #CPR22

[Speaker] is a panelist at today’s Fall 2022 Cancer Policy Roundtable. We’re excited to support the National Coalition for Cancer Survivorship in advancing the #cancersurvivorship cause. #CPR22

[Speaker] is a panelist at today’s Fall 2022 Cancer Policy Roundtable. We’re excited to support @cancersurvivorship in advancing the #cancersurvivorship cause. #CPR22

[Speaker] is a panelist at today’s Fall 2022 Cancer Policy Roundtable. We’re excited to support @cancersurvivorship in advancing the #cancersurvivorship cause. #CPR22


For Speakers:

I’m joining @CancerAdvocacy for its Fall 2022 Cancer Policy Roundtable. I look forward to discussing pressing issues related to cancer research, therapies, and care delivery with an incredible group of cancer survivors, advocates, and health care professionals. #CPR22

Looking forward to sharing my thoughts on [subject] at @CancerAdvocacy’s Fall 2022 Cancer Policy Roundtable. #CPR22

Thank you, @CancerAdvocacy, for inviting me to speak at today’s Fall 2022 Cancer Policy Roundtable. I’m excited for the future of cancer care. #CPR22

I’m joining the National Coalition for Cancer Survivorship for its Fall 2022 Cancer Policy Roundtable. I look forward to discussing pressing issues related to cancer research, therapies, and care delivery with an incredible group of cancer survivors, advocates, and health care professionals. #CPR22

Looking forward to sharing my thoughts on [subject] at the National Coalition for Cancer Survivorship’s Fall 2022 Cancer Policy Roundtable. #CPR22

Thank you, National Coalition for Cancer Survivorship, for inviting me to speak at today’s Fall 2022 Cancer Policy Roundtable. I’m excited for the future of cancer care. #CPR22

I’m joining @cancersurvivorship for its Fall 2022 Cancer Policy Roundtable. I look forward to discussing pressing issues related to cancer research, therapies, and care delivery with an incredible group of cancer survivors, advocates, and health care professionals. #CPR22

Looking forward to sharing my thoughts on [subject] at @cancersurvivorship’s Fall 2022 Cancer Policy Roundtable. #CPR22

Thank you, @cancersurvivorship, for inviting me to speak at today’s Fall 2022 Cancer Policy Roundtable. I’m excited for the future of cancer care. #CPR22

I’m joining @cancersurvivorship for its Fall 2022 Cancer Policy Roundtable. I look forward to discussing pressing issues related to cancer research, therapies, and care delivery with an incredible group of cancer survivors, advocates, and health care professionals. #CPR22

Looking forward to sharing my thoughts on [subject] at @cancersurvivorship’s Fall 2022 Cancer Policy Roundtable. #CPR22

Thank you, @cancersurvivorship, for inviting me to speak at today’s Fall 2022 Cancer Policy Roundtable. I’m excited for the future of cancer care. #CPR22

Registration Form

We have reached capacity for this event.

If you were invited to attend and have questions about registering, please contact Elena Jeannotte at

Please contact Haley Smoot at with any questions you may have.

Cancer Policy Roundtable 2022 Sponsors

(as of 9/15/2022)

2022 CPR Sponsors 6-6-22

CPR Sponsors Fall 2022