Cancer screening disparities in the LGBTQ+ community
The LGBTQ+ community faces unique barriers when accessing the health care system. Both preventive and essential care are affected, which can result in disparities in cancer risk and treatment.
As the Prevent Cancer Foundation® works toward its mission is saving lives across all populations through cancer prevention and early detection, we must address cancer screening disparities in the LGBTQ+ community. At the 2022 Advocacy Workshop, we are bringing together patient advocacy organizations and LGBTQ+ community and health experts to discuss what needs to change.
Mandi L. Pratt-Chapman, PhD, Associate Professor, Medicine, School of Medicine and Health Sciences, Associate Professor, Prevention and Community Health, Milken Institute School of Public Health, Associate Center Director, Patient-Centered Initiatives and Health Equity, GW Cancer Center The George Washington University
A Patient-Centered Approach to Multi-Cancer Early Detection Testing
The Prevent Cancer Foundation® Advocacy Workshop is a forum for patients, providers, advocacy organizations and other stakeholders to engage in a dialogue around emerging technology in cancer prevention and control with a focus on multi-cancer early detection screening tests.
Anne Marie Lennon, MD, PhD, Johns Hopkins University School of Medicine
This primer will give attendees the background necessary to understand the components of multi-cancer early detection tests and the opportunities to enhance access to screening, reduce delays in diagnosis, and improve early detection and diagnosis.
11:15 am | Panel Discussion: Acceptance, Access, Affordability, and Accountability
Advocacy organizations are committed to ensuring patient needs and preferences inform the development, planning, and implementation of novel innovations like multi-cancer early detection tests. As these tests emerge into an already complex cancer screening landscape, there is a need to discuss access, acceptance, affordability, and accountability.
Moderator: Jody Hoyos, MHA, Prevent Cancer Foundation
Panelists:
Phylicia Woods, JD, MSW, Cancer Support Community
Anna Schwamlein Howard, American Cancer Society-Cancer Action Network
Rebekkah M. Schear, MIA, University of Texas at Austin, Livestrong Cancer Institutes at the Dell Medical School
Robin Richardson, MA, University of Texas at Austin, Livestrong Cancer Institutes at the Dell Medical School
Minetta C. Liu, M.D., Mayo Clinic
12:30 pm | Lunch
1:15 pm | Breakouts
Attendees will break out into groups to discuss concerns and opportunities addressed by the speakers, brainstorm ideas and propose solutions. The breakouts and remaining activities will be limited to 50 attendees/organizations.
2:15 pm | Report outs
Breakout groups will return to present their proposed solutions to the rest of the attendees.
2:45 pm | Building a consensus
Based off feedback from the breakout groups, attendees will discuss the solutions and come to a consensus on key issues on which to focus our collective efforts.
The Prevent Cancer Foundation hosted its annual Advocacy Workshop on Wednesday, September 9, 2020 with a focus on genetics and cancer prevention. The afternoon was full of great conversations about genetic testing and its role in helping identify hereditary conditions and their associated cancers, as well as providing tumor testing to develop targeted treatments for patients. Access barriers to testing were a recurrent theme throughout the event. To address those barriers, attendees joined breakout sessions to discuss potential solutions and reported back to share with the entire group.
If you were unable to join us, the entire program was recorded and is available here.
Prevent Cancer Advocacy Workshop 2020
“Genetics, Genomics and Biomarker Testing”
Virtual Workshop Agenda
September 9, 2020
The workshop will serve as a forum for patients, providers, advocacy organizations and other stakeholders to engage in a dialogue around issues regarding genetic testing for hereditary cancers, somatic mutations and biomarkers. Attendees will leave with a better understanding of the role these factors play in prevention and early detection and solutions to improve patient awareness and engagement.
12:30 pm | Welcome and Overview
12:40 pm | Genetics/Genomics 101
Heather Hampel, Associate Director, Division of Human Genetics; Associate Director, Biospecimen Research; Professor, Internal Medicine; Licensed Genetic Counselor
The Ohio State University Comprehensive Cancer Center
This primer will give attendees the background needed to understand the components of genetics and what it means for cancer patients.
1:10 pm | Brief break and transition to panel discussion
1:15 pm | Panel Discussion: Access Barriers and Challenges Impacting Genomics, Genetic Testing and Biomarker Testing
As innovation in genetics has led to major breakthroughs in screenings, patients can learn so much about their genetic profile and cancer type. However, these screenings are not available or understandable to all. Panelists will discuss pressing concerns regarding hereditary cancers, tumor profiling and biomarkers and the practical impact they have on patients.
Moderator: Lisa Schlager, Vice President, Public Policy, Facing Our Risk of Cancer Empowered
Panelists:
Heather Hampel, Associate Director, Division of Human Genetics; Associate Director, Biospecimen Research; Professor, Internal Medicine; Licensed Genetic Counselor
The Ohio State University Comprehensive Cancer Center
Jennifer R. Leib, Founder, Innovation Policy Solutions, LLC
Nikki Martin, Director of Precision Medicine Initiatives, LUNGevity
Becky Nagy, Vice President of Medical Affairs, Guardant Health, Inc.
Brandi Preston, Founder, Kamie K. Preston Hereditary Cancer Foundation
2:25 pm | Break and transition to breakout sessions
2:40 pm | Breakouts
Attendees will break out into pre-assigned groups to discuss concerns addressed by the speakers, brainstorm ideas and propose solutions. *Note – all sessions will be recorded, so attendees can hear discussions from other breakouts.
3:25 pm | Report outs and voting
Breakout groups will return to present their proposed solutions, and attendees will vote on the ideas on which to focus our collective efforts.
4:15 pm | Recap and next steps
4:30 pm | Adjourn
Materials:
The materials below will provide you with additional information about topics discussed in the Workshop:
Genetic Testing Terminology
For more information on the pan cancer initiative that focuses on increasing adoption of consistent, common testing terms for patient education, please visit www.commoncancertestingterms.org. You will find the white paper from above on the issue and recommended terms, an infographic, an HCP education card, as well as the ASCO 2020 abstract published in May.
PSA on Biomarker Testing
Guardant Health is harnessing the power of blood to change the trajectory of cancer and making advances that move us closer to a blood test that screens for cancer. We hope you enjoy this informational video about the company and their mission to conquer cancer with data. Please feel free to contact us if you have any follow-up questions about the webinar or Guardant Health.
The Prevent Cancer Advocacy Workshop is an annual conference that convenes stakeholders to discuss pressing issues that impact cancer prevention and early detection, as well as novel approaches to address these issues through policy and advocacy. The Workshop is an open forum that allows participants to immerse themselves in engaging presentations and facilitated conversations, and to build capacity for creative solutions through collaboration with other attendees.
Wednesday, April 24, 2019
9:30 am | Registration Opens
10:30 am | Welcome — Jody Hoyos, Senior Vice President, Prevent Cancer Foundation
10:35 am | Overview — Lisa Berry Edwards, Managing Director, External Affairs, Prevent Cancer Foundation
10:45 am | Keynote — Inside the Case Against Big Tobacco Speaker:Sharon Eubanks, Lead Counsel, United States v. Phillip Morris USA
11:30 am | Access Barriers in Care Delivery Panelists will discuss emerging barriers to care and potential solutions to increase access to patients, such as step therapy, co-pay accumulators, Medicaid waivers, and more. Moderator: Chad Ramsey – Vice President of Policy, Ovarian Cancer Research Alliance Panelists: Lindsay Houff – Senior Policy Manager – National Coalition for Cancer Survivorship Anna Hyde – Vice President of Advocacy and Access, Arthritis Foundation Kristen Santiago – Senior Director of Public Policy Initiatives, LUNGevity
12:30 pm | Networking Lunch
1:30 pm | The Economics of Prevention
Listen to a facilitated conversation focusing on factors contributing to the rising cost of health care and ways in which prevention can offset those costs to reduce the burden on patients and the health care system. Facilitator: Jim Mulshine, Vice President and Associate Provost for Research at Rush University Medical Center Guest Speaker: Bruce Pyenson, Principle and Consulting Actuary, Milliman, Inc.
2:30pm | Prevent Cancer Advocacy Toolkit
Taylor Patton – Director, Policy and Advocacy, Prevent Cancer Foundation
The Foundation held its annual Advocacy Workshop on Wednesday April 11, 2018, where participants heard from advocates, policy experts, patient navigators and researchers about the issues barring minorities and other underserved populations from accessing quality health education and care.
Panelists addressed issues facing these communities, not just for those affected by cancer, but for those affected by chronic conditions like diabetes, heart disease and arthritis. The panelists see many of the same issues affecting health disparities, such as access to transportation, child care and other resources that patients need to get to appointments. They also discussed a need for better patient-provider communication and called on insurers to help patients understand their coverage.
Welcome and Opening Remarks
Carolyn Aldigé, President and Founder, Prevent Cancer Foundation
Workshop overview
Taylor Patton, Director, Advocacy and Policy, Prevent Cancer Foundation
Panel 1: Health Disparities in Chronic Disease Prevention
Moderator:
Deanna Darlington, Director, Patient Advocacy and Allied Development, Amgen
Panelists:
LaShawn McIver, Senior Vice President, Government Affairs & Advocacy – American Diabetes Association
Jennifer Jabson, Assistant Professor, University of Tennesee – Knoxville
Elizabeth Glidden, Patient Navigator, American Cancer Society, Northeast Region
Lunch Keynote
April Bankston, Team Lead, Racial and Ethnic Approaches to Community Health (REACH) Program, Centers for Disease Control and Prevention
Panel 2: Policy Solutions to Address Threats in Chronic Disease Prevention
Moderator:
Jack Rayburn, Senior Government Relations Manager, Trust for America’s Health
Panelists:
Elizabeth Franklin, Executive Director, Cancer Policy Institute, Cancer Support Community
Anna Hyde, Vice President, Advocacy and Access, Arthritis Foundation
Katie Berge, Government Relations Manager, American Heart Association
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