by Lisa Schlager
This issue of “Where’s FORCE?” features an overview of the many events in which FORCE staff and volunteers participated in recent months.
Supporting those affected by cancer is collaborative effort. The Cancer Community (C2) Awards honor a diverse and indispensable group, the unsung heroes of cancer care. This year, FORCE Executive Director Sue Friedman had the honor of serving as a judge to select finalists and winners in the Catalyst for Change, Catalyst for Care and Catalyst for Precision Medicine categories. Lisa Schlager, FORCE Vice President of Public Policy, attended the C2 Awards Ceremony & Celebration in New York on May 2.
The following week, the entire FORCE staff convened in Washington, DC for a multiday strategic planning meeting. As cancer and genetics evolve, so must our organization, and exciting changes are on the horizon. Stay tuned for more info about this by early 2020. On May 15, Lisa Schlager participated in the National Patient Advocate Foundation Policy Summit, “Barriers & Solutions to Access to Genomic Medicine: Realizing Benefits of Genomic Medicine for All.” The next day, she took part in a Personalized Medicine Coalition forum aimed at developing patient principles for a personalized medicine research agenda.
Sue Friedman presented at the C.A.R.E. Women’s Cancer Conference on May 18 in Cocoa Beach, FL, and the month finished with Capitol Hill meetings regarding efforts to reform Section 101 of the Patent Act and regulation of the diagnostics industry.
June kicked off with FORCE staff—Sue Friedman, Piri Welcsh and Diane Rose—along with volunteers Katrina Wells and Jill Holdren traveling to Chicago for the American Society of Clinical Oncology (ASCO) annual meeting. They attended lectures and educational sessions on the latest cancer research, participated in patient advocate events, and networked with other attendees.
Lisa Schlager presented and exhibited at the FDA Center for Devices & Radiologic Health (CDRH) Patient & Caregiver Connection (P&CC) Town Hall on June 18. She also participated in a National Comprehensive Cancer Network (NCCN) policy summit titled, “The State of Cancer Care in America: The Impact of State Policy on Access to High-Quality Cancer Care” in Washington, DC on June 27.
On July 12, Lisa Schlager attended a workshop on Clinical Outcome Assessments in Cancer Clinical Trials co-hosted by the FDA and ASCO in the Washington, DC area. Meanwhile, FORCE volunteers hosted an exhibit at the Ovarian Cancer National Conference, July 12-14 in Seattle.
The following week, Schlager presented and participated in a “Roundtable on Balancing Privacy with Health Data Access” hosted by the Office of the Chief Technology Officer at the Department of Health and Human Services (HHS) and the Center for Open Data Enterprise (CODE). This invitation-only event explored how to balance the privacy of sensitive health information with data access for public good, bringing together patients and HHS leaders with over 60 experts in health data from other government agencies, industry, academia, legal and patient advocacy organizations.
FORCE Vice President of Volunteer Programs Diane Rose represented the organization at the NRG Oncology Semiannual Meeting, July 18-20 in Philadelphia.
Sue Friedman and Lisa Schlager took part in a Global Patient Advocacy Exchange hosted by biopharmaceutical company AstraZeneca in its Gaithersburg, MD headquarters, August 14-16. The multiday summit drew cancer advocacy representatives from the U.S., Canada and Europe to discuss the use of precision medicine and targeted therapies in breast, ovarian, pancreatic and prostate cancers. On August 27, Sue Friedman gave a presentation on Project COGENT and patient engagement in research at the University of Florida Gainesville Cancer Center.
Lisa Schlager joined representatives from a broad range of organizations—patient advocacy organizations, medical professional associations, academic institutions and more—in Capitol Hill meetings on September 18 to encourage reauthorization of the Patient-Centered Outcomes Research Institute (PCORI). Sue Friedman spoke about the importance of engaging patients in all phases of research at the 5th Annual Clinical Trials Patient Experience Summit in Lawrence Township, NJ on September 19.
The Association for Molecular Pathology (AMP) is a nonprofit membership society for molecular diagnostics professionals (molecular diagnostics identify or confirm genetic variants associated with certain diseases). On September 20, AMP hosted a Molecular Pathology Economics Summit to explore the economic challenges faced by stakeholders in getting coverage/reimbursement for diagnostics including testing for hereditary cancer, tumor makeup, prenatal health, etc. Lisa Schlager represented FORCE and spoke about the challenges faced by members of the hereditary cancer community.
Local volunteers staffed a FORCE exhibit at the annual Living Beyond Breast Cancer Conference in Philadelphia, September 20-21. Also on September 21, Sue Friedman was the keynote speaker at the Michigan Department of Health and Human Services’ HBOC & Lynch Syndrome Family Day at Western Michigan University in Kalamazoo, MI.
In addition to these events, FORCE volunteers were engaged in nearly 100 local support group meetings and events in Atlanta, Houston, Indianapolis, Louisville, Minnesota, Phoenix and many more locations. Sincere thanks to all of our wonderful, dedicated volunteers who help us make a difference!
Visit the Current Advocacy Issues section of our website for more information on specific policy topics.Tags: cancer advocacy, FORCE, HBOC, hereditary cancer, hereditary cancer research, ovarian cancer