Cancer Policy & Advocacy Team (CPAT)

NCCS CPAT Members advocate against health care repeal on Capitol Hill, June 2017

The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors. Driven by the energy and experiences of the CPAT Steering Committee, CPAT provides cancer survivors and caregivers with tools and training that build upon their personal experiences to become effective advocates to improve cancer care.

The webinars, e-newsletters, online forum, and conferences for CPAT members offer advocates different ways to learn and to discuss current issues, programs, and policies that affect the cancer community and to take action as appropriate.

Past CPAT Symposia

Highlights from the 2017 CPAT Symposium and Hill Day »

Highlights from the 2016 CPAT Symposium »
Read about CPAT members’ symposium experiences »

Interested in Joining CPAT?

For more information about CPAT, contact Kelsey Nepote, Manager of Advocacy.


Watch Past CPAT Webinars

2018: Cancer Care Planning and Communications Act, H.R. 5160: What It Does and How To Get Involved

March 21, 2018

Cancer Care Planning and Communications Act, H.R. 5160: What It Does and How To Get Involved

CCPC Act LogoOn March 7, Reps. Mark DeSaulnier (D-CA) and Ted Poe (R-TX) introduced the bipartisan Cancer Care Planning and Communications (CCPC) Act, H.R. 5160—legislation that holds real promise for improving cancer care for survivors and their families. The CCPC Act is a priority for NCCS and will establish a new service within Medicare for comprehensive cancer care planning.

Cancer care planning is more about the conversation and the process than the piece of paper. Care planning encourages shared decision-making between patients and their cancer care teams, and supports informed decisions as treatment choices are becoming increasingly complex.

NOTE: Due to a technical error, the first six minutes of the webinar were not recorded.

Webinar Info

During the webinar you will hear from:

  • Lee Jones, patient advocate and Cancer Policy and Advocacy Team (CPAT) Steering Committee Member
  • Jill Beavers-Kirby, DNP, MS, ACNP-BC, patient advocate and health care provider
  • Shelley Fuld Nasso, NCCS CEO
  • Lindsay Houff, NCCS Public Policy Manager

Our speakers will discuss the importance of receiving a care plan and what happens if these conversations do not take place, including increased burden on patients and families who must coordinate care, as well as, the burden on the healthcare system as uncoordinated care has the potential to result in unnecessary treatments and resources.

More than 40 patient and provider groups and cancer centers recognize the importance of cancer care planning and have endorsed the CCPC Act.

Useful links discussed in the webinar:

2017: ACA Open Enrollment Updates & Actions - November 8

November 8, 2017

ACA Open Enrollment Updates & Actions

In 2017, the ACA marketplace (HealthCare.gov) Open Enrollment period runs from November 1st until December 15. With so many mixed messages regarding the ACA, millions of Americans are confused about where the law stands now, what changes to expect during this year’s open enrollment, and what steps they need to take now.

We are pleased that Jodi Ray, Director of Florida Covering Kids & Families, and Debbie Curtis, Deputy Director of the DC Health Benefit Exchange Authority, joined us for this webinar. Topics of discussion include changes in plans this year, premium options, and how advocates can help cancer patients and survivors enroll in health care through the marketplace. A Q&A follows the presentations.

About the Speakers

Jodi A. Ray, MA

Jodi Ray is the Director and Principal Investigator for Florida Covering Kids and Families, at the University of South Florida’s College of Public Health Chiles Center for Healthy Mothers and Babies. The Chiles Center conducts regional, national and international service, research and educational programs to promote maternal and child health of underserved populations.

Ms. Ray has over 18 years’ experience in designing, implementing and evaluating outreach and enrollment efforts in Florida. Over the course of her career, she has overseen statewide efforts to connect consumers to public health coverage programs, which has led to her broad scope and understanding of the design and implementation of community-based collaborative initiatives to reduce the uninsured. Ms. Ray has been the recipient of four federal grants from Centers for Medicare & Medicaid Services focused on enrolling children into health coverage through CHIP and Medicaid and more recently, Ms. Ray has received five awards from The Department of Health and Human Services to provide Navigators throughout the entire state of Florida, to educate and enroll consumers into the Federal Health Insurance Marketplace. Ms. Ray currently oversees the largest federally funded HHS Navigator grant in the country.

Debbie Curtis

Debbie Curtis serves as the Deputy Director for the DC Health Benefit Exchange Authority. She joined the Exchange staff in March of 2013. For the previous 15 years, she served in a joint position as the Chief of Staff for Rep. Pete Stark (D-CA), Lead Democrat of the Ways and Means Health Subcommittee, and as a Professional Staff Member on the Ways and Means Democratic Staff. Prior to her work for Rep. Stark, Debbie served as health legislative assistant for (then Representative) now Sen. Ben Cardin (D-MD) and Rep. Jim Moody (D-WI), both then Ways and Means Health Subcommittee members. She was the Congressional Affairs Director for Citizen Action, a nationwide grassroots consumer advocacy organization, where she lobbied for national health care reform during the Clinton health care reform years (1993, 1994). She’s also worked on the staffs of now Senators (then Representatives) Ron Wyden (D-OR) and Rep. Ed Markey (D-MA). Debbie graduated from Boston University with a bachelor’s degree in political science in 1988.

2017: Affordable Care Act Update - April 6

April 6, 2017

Affordable Care Act Update

The Republican health care replacement plan, the AHCA, failed to make it to the House floor in March. Although this was good news for those who want to keep the ACA and the protections it has provided for cancer survivors, our work is far from over. Repeal and replace legislative efforts could resurface at any time. But legislative action is not the only avenue the administration could take in dismantling the ACA; there are several tools they could use to undermine the law and leave millions of patients without access to quality or affordable health care.

Watch this webinar for an update on where the ACA stands now after the failure of the AHCA, what the law’s future could hold, and what this all means for cancer survivors.

2017: Affordable Care Act Update: What Advocates and Cancer Survivors Need to Know

January 25, 2017

Affordable Care Act Update: What Advocates and Cancer Survivors Need to Know

President Donald Trump and the Republican leadership in Congress will soon be making good on their campaign promise to repeal the Affordable Care Act (ACA). While replacement plans have been proposed, there is no consensus on an alternative. As patient advocates, we have a responsibility to rise above the politics and speak up for the needs of survivors. We are very concerned about what these actions mean for cancer survivors and their access to quality and affordable health care.

During this webinar, you will hear from the team at NCCS and Monica Bryant of Triage Cancer on where the ACA stands now, what a replacement health care plan might look like, and what this all means for survivors and advocates going forward. A recent analysis by the Congressional Budget Office shows that without a replacement plan, in the first year after repeal, there would be 18 million more uninsured and premiums would rise 20-25%. The time for education and advocacy is now.


Featured Presenter

Monica Bryant, Esq.
Monica Fawzy Bryant, Esq.
Chief Operating Officer
Triage Cancer

Monica Fawzy Bryant, Esq. is a cancer rights attorney, speaker, and author, dedicated to improving access to, and availability of, quality information on healthcare-related issues. Monica is the Chief Operating Officer for Triage Cancer, a national, non-profit organization that provides education and resources on cancer survivorship issues.

Previously, Monica was Midwest Regional Director for a national cancer rights organization she forged relationships with cancer organizations, hospitals, law firms, other community partners, and members of underserved communities. Prior to relocating to Chicago, Ms. Bryant served as Legislative Counsel for U.S. Congresswoman Linda T. Sanchez and Law Clerk for U.S. Senator Dianne Feinstein. During her time in Congress, Ms. Bryant focused on health, justice, civil rights, and women’s issues. She was also heavily involved in the nomination hearings for United States Supreme Court Chief Justice John Roberts and Justice Samuel Alito.

Throughout her career, Monica has provided hundreds of educational seminars, written articles and blogs, and appeared on community television and radio shows discussing healthcare-related legal issues. Additionally, Monica is an Adjunct Law Professor at John Marshall School of Law in Chicago, teaching a class on Cancer Rights. Monica currently serves on the Executive Committee of the American Bar Association’s Breast Cancer Task Force.

Monica received a Bachelors of Arts degree in Law & Society, with an emphasis in criminal justice, and Psychology from the University of California Santa Barbara and a Juris Doctor from The George Washington University Law School. She is a member of both the California and Illinois State Bars.

2016: Cancer Moonshot: Symptom Management & Funding

November 2, 2016

Cancer Moonshot: Symptom Management & Funding

Just a few days before the 2016 Presidential Election, NCCS hosted the latest CPAT webinar, Cancer Moonshot: Symptom Management and Funding. The featured presenters were Deborah K. Mayer, PhD, RN, AOCN, FAAN; and MK Holohan, JD. Dr. Mayer is the Director of Cancer Survivorship at the UNC Lineberger Cancer Center and a member of the Cancer Moonshot Blue Ribbon Panel. Ms. Holohan is the Director of Government Relations at the National Cancer Institute (NCI).

In the webinar, Dr. Mayer walked through the process and structure of collaboration in the Moonshot initiative and described in detail her work on the Moonshot initiative’s Blue Ribbon Panel. Dr. Mayer highlighted the Blue Ribbon Panel’s recommendations, specifically focusing on the recommendation to minimize treatment side effects and what that means for cancer survivors. Ms. Holohan detailed how the Cancer Moonshot initiative could be funded in Congress, as well as potential barriers to achieving that funding. Ms. Holohan also talked about the 21st Century Cures Act, and the possibility it will be considered in the lame-duck session.

After their presentations, the speakers engaged in a short Q&A.

Additional Resources and Links

Deborah K. Mayer’s Presentation

Dr. Mayer’s Presentation Slide Deck [PDF]
Dr. Mayer discussed a couple of online resources in her presentation. These items include:

  • Cancer Moonshot Task Force Report: This report describes activities and an implementation plan for achieving the Cancer Moonshot’s goals.
  • Blue Ribbon Panel Report: This report was presented to the National Cancer Advisory Board in September. The final report describes 10 transformative research recommendations for achieving the Cancer Moonshot’s goal of making a decade’s worth of progress in cancer prevention, diagnosis, and treatment in just 5 years.

MK Holohan’s Presentation

MK Holohan’s Presentation Slide Deck [PDF]

2016: Social Media Strategies for Patient Advocates

September 21, 2016

Social Media Strategies for Patient Advocates

Facebook, Twitter, Instagram, Snapchat… We’re all familiar with the incredible impact these and other social media platforms have in our society. That impact applies to advocacy as well. Three patient advocates, AnneMarie Ciccarella, Alicia Staley, and Lori Marx-Rubiner, in addition to NCCS Communications Director Dan Weber, address how to use social media to increase your effectiveness as a patient advocate. Further, they talk about how to use the strengths of different social media platforms to engage the political community, scientific community, and patient advocate community.

Watch the Webinar

 

Speaker Bios

AnneMarie CiccarellaAlicia StaleyLori Marx-RubinerDan Weber
AnneMarie Ciccarella

AnneMarie Ciccarella
@chemobrainfog

AnneMarie Ciccarella is a breast cancer patient, ten years post treatment who remains actively involved in many areas of advocacy. She serves as a consumer reviewer on the Department of Defense CDMRP and was appointed Scientific Review Office for METAvivor Research and Support commencing with their 2015 grant cycle. AnneMarie reviews manuscripts for The BMJ. A three-time participant in the AACR Scientist – Survivor program, she now serves as an advocate mentor.

She has presented posters at annual AACR annual meetings focusing on the role social media plays in facilitating the work of patient advocates and highlighting the importance of patient partners throughout the entire continuum of care. She was an invited speaker at a several high profile meetings including AACR and SWOG and is currently serving as a patient advocate on a number of ongoing grants.

Understanding the complexity of navigating a cancer diagnosis and the difficulty that may be associated with the decision making process, AnneMarie has lobbied on the Hill to be sure every patient has access to quality information. Many things can affect outcomes, but geography and lack of adequate information should never be part of that equation. In an effort to close this gap, she shares information via her blog and on social media. Sandwiched between her mom, who was diagnosed with metastatic disease decades after her initial primary diagnosis, and her daughter, who recently had her first scare and is now being followed very closely, AnneMarie is uniquely poised to appreciate the need for of patients across the entire spectrum.

Alicia Staley

Alicia Staley
@stales

Alicia Staley is the Patient Advocacy & Product Manager at Cure Forward, a start-up company based in Boston, MA. She works at Cure Forward to help cancer patients find clinical trials based on the patient’s genomic data. Helping cancer patients use social media and social networks to build powerful relationships with their care teams is her focus.

Alicia is a three-time cancer survivor, first diagnosed with Hodgkin’s disease as a sophomore at Syracuse University. Ms. Staley actively shares what she learned throughout her cancer journey to improve other patients’ experiences.

She is a member of the Tufts Medical Center Patient & Family Advisory Council and Quality Care Committee.

She regularly speaks at conferences throughout the US. She has presented at Livestrong’s Rev2014, American Society for Breast Surgeons Annual Meeting, South by South West Interactive Conference (SXSWi), 140 Boston, and Social Media for Pharma. As an inspirational speaker, Alicia reaches many different audiences, providing insight into life as a 25+ year cancer survivor and support in efficient, effective ways.

Lori Marx-Rubiner

Lori Marx-Rubiner
@regrounding

Lori Marx-Rubiner was first diagnosed with breast cancer in 2002. As a young woman and mother of a three year old, it was clear that finding connections and resources was going to be a challenge – she simply didn’t fit the mold. After completing primary therapy, Lori was committed to using the experience as a breast cancer advocate, in hopes of helping others. In 2011, after nine years of being NED (no evidence of disease), Lori was diagnosed with metastatic breast cancer that had spread to her bones. Despite returning to treatment, she has redoubled her efforts to change the face of breast cancer.

Lori earned her Masters of Social Work and Masters of Communal Service in 1990, and has worked in non-profit management for over 25 years. Her advocacy spans individual support for patients, scientific review, and public policy efforts. She is also a graduate of the National Breast Cancer Coalition’s Project LEAD Institute. She has served as an advocate peer reviewer for the Dept. of Defense Breast Cancer Research Program and PCORI. She is Vice-Chair of the California Breast Cancer Research Program, is one of the founding advocates for CancerBase – a direct-from-patient global data collection effort, works with the Dr Susan Love Research Foundation, and is a member of the steering committee for #BCSM (twitter’s Breast Cancer Social Media chat group).

She lives in Los Angeles with her husband of nearly 30 years, John, and their almost 18 year old son Zachary, and marvels that the complex systems of our bodies work at all.

Dan Weber

Dan Weber

Dan Weber joined NCCS as the Director of Communications in February 2016. In this role, he guides the strategy regarding outreach to the media and other stakeholders, and ensures that the communications, website, and public relations messages consistently articulate NCCS’ mission and priorities. He also works closely with other senior members within the organization as the communications partner to support the fundraising and policy objectives.

Prior to joining NCCS, Dan served as the Director of Communications for Congresswoman Donna F. Edwards (MD-4) for over eight years, where he gained experience on political campaigns and on Capitol Hill that involved all aspects of communications and public relations. Dan is excited about the opportunity to apply what he has learned to help build upon and expand NCCS’ communications outreach. As a cancer survivor himself, Dan understands first-hand the importance of the NCCS mission for patients, survivors, caregivers, and families.

2016: A Conversation Around Shared Decision-Making and a Patient Revolution—And the Role of the PACT Act

May 25, 2016

Victor Montori, Webinar Speaker

Featured Speaker
Victor Montori, MD, MSc
Professor of Medicine
Mayo Clinic

The theme of the April 2016 issue of Health Affairs was Patients’ and Consumers’ Use of Evidence, but one article in particular stood out: “Shared Decision Making: The Need for Patient-Clinician Conversation, Not Just Information,” written by Ian Hargraves, Annie LeBlanc, Nilay D. Shah, and Victor M. Montori of the Mayo Clinic in Rochester. An expert in shared decision-making, Dr. Montori speaks in this webinar about their article, which is consistent with NCCS’ work on shared decision-making and resources such as our Know Yourself worksheet. Dr. Montori is also joined by his colleague Maggie Breslin, and together they speak about The Patient Revolution, a project whose website helps patients talk to their healthcare providers more effectively in order to get the care that they want.

To learn more about Dr. Montori’s efforts, you can visit these webpages:

In addition, Adriane Casalotti, deputy chief of staff for Congresswoman Lois Capps of California who has championed the Planning Actively for Cancer Treatment (PACT) Act, provides an update on the legislation and the atmosphere on the Hill as we prepare for our Hill Day around the PACT Act on Tuesday, June 28.

2015: Strategies for Cancer Survivors to Implement When Choosing Health Insurance

November 19, 2015

In response to requests from members of our Cancer Policy & Advocacy Team (CPAT) for information about finding health insurance plans that can meet the needs of cancer survivors, on November 19, 2015, just as open enrollment for marketplace plans under the Affordable Care Act began, NCCS hosted the webinar “Strategies for Cancer Survivors to Implement When Choosing Health Insurance” with three experts on the topic.

Anne Kirchhoff, PhD, MPH is an Assistant Professor of Pediatrics at the University of Utah and an Investigator at the Huntsman Cancer Institute in the Cancer Control and Population Sciences Research Program. Dr. Kirchhoff’s research program focuses on health care needs and financial issues, and she has led several studies on late effects, employment, and health insurance coverage after cancer.

Elyse Park, PhD, MPH is an Associate Professor of Psychiatry at Harvard Medical School and an Assistant in Health Care Policy at the Mongan Institute for Health Policy/Medicine within Massachusetts General Hospital. Committed to the quality of care of cancer survivors, Dr. Park conducted a national study to examine underinsurance issues among adult survivors of childhood cancer as well as survivors’ familiarity with the Affordable Care Act.

Lynn Quincy, MA serves as the Director of the Health Care Value Hub at Consumers Union. An expert in health care who works on variety of health policy issues, including health insurance reform at the federal and state levels, Ms. Quincy is particularly interested in how people find affordable health coverage and make good health insurance choices.

Dr. Kirchhoff and Dr. Park presented their research on how cancer survivors consider health insurance, and Ms. Quincy provided insights into how cancer survivors can choose a health insurance plan.

In addition to the resources provided in the slides, below are resources that address webinar participants’ questions:

 
2015: Strategies for Designing a System for Survivorship Care

June 3, 2015

This webinar focuses on the design of a health care system to deliver quality survivorship care. The program reviews a number of issues, including where survivors should receive survivorship care, how they can manage transitions in care, and whether clinical practice guidelines can help them with managing their care. In addition, we will also discuss insurance coverage of survivorship care.

Furthermore, the Planning Actively for Cancer Treatment (PACT) Act is also discussed. The PACT Act will ensure that every Medicare-eligible cancer patient has access to cancer care planning and coordination to improve patient health and reduce inefficiencies in the system. NCCS has championed this legislation for ten years and we are working with members of Congress to introduce the PACT Act in the coming weeks.

Smita Bhatia, MD, MPH, Co-Director of the Center for Outcomes and Effectiveness Research and Education at the University of Alabama Birmingham Comprehensive Cancer Center is the featured presenter.

View Webinar

2015: Patient-Care Team Communication

April 29, 2015

Deborah Mayer, PHD, RN, Professor in the Adult and Geriatric Health Division at the University of North Carolina (UNC) and the UNC Lineberger Director of Cancer Survivorship was the feature presenter of the “Patient-Care Team Communication: How Can the Survivor Prepare to Manage a Lifetime of Care?” Webinar.

Dr. Mayer is an advanced practice oncology nurse who has consulted with organizations on issues to improve cancer care and has over 30 years of cancer nursing practice, education, research, and management experience. Dr. Mayer earned a PhD from the University of Utah, her MSN from Yale University, her BSN from Excelsior College, her Nurse Practitioner Certificate from the University of Maryland, and her diploma from Pennsylvania Hospital School of Nursing.

View Webinar

2014: Current Issues in Cancer Care
The National Coalition for Cancer Survivorship (NCCS) hosted a webinar titled, Current Issues in Cancer Care on Wednesday, September 17, 2014 from 3:00pm-4:30pm EDT as part of our new Cancer Policy Advocate Training (CPAT) program.

Peter Bach, MD, MAPP, Director of Memorial Sloan Kettering’s Center for Health Policy and Outcomes was the featured presenter. Dr. Bach is a physician, epidemiologist, writer, and recognized expert in healthcare policy whose work has been regularly featured in major scientific and lay press outlets such as the New England Journal of MedicineJournal of the American Medical Association, and The New York Times. His articles are known to be thought-provoking and address the difficult questions in cancer care today.

View Webinar


2018 CPAT Program Supporters

Genentech
2018 CPAT Partners