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This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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Where’s FORCE? Winter 2017

January 2, 2018

by Lisa Schlager

Every month, FORCE staff and volunteers participate in a variety of conferences, workshops, steering committee meetings, and other activities on behalf of the hereditary cancer community. With the start of the New Year, we are launching our “Where’s FORCE” feature to keep you better informed about how and where FORCE represents the varied interests and concerns of our constituents.

The last few months of 2017 were exceptionally busy so we would like to provide a recap.

September

photo of Lisa Schlager and Teri Woodhull

FORCE staff member Lisa Schlager and board member Teri Woodhull participated in the AACR Rally for Medical Research Hill Day.

September was marked by participation in many events to commemorate Ovarian Cancer Awareness Month, National Hereditary Breast and Ovarian Cancer (HBOC) Week and Previvor Day.  Sandy Cohen and Diane Rose, who manage the FORCE volunteer programs, attended and exhibited at the National Society of Genetic Counselors Annual Conference in Columbus, OH, October 13-15.  Meanwhile, on September 13, FORCE staff member Lisa Schlager attended the Blueprint for Breakthroughs: Charting the Course for Precision Medicine workshop hosted by Friends of Cancer Research. Later the same day, she joined FORCE board member and ovarian cancer advocate Teri Woodhull at the American Association of Cancer Research (AACR) Rally for Medical Research Hill Day training session. Both events took place in Washington, DC. The following day, Lisa Schlager and ovarian cancer patient advocate Jill Holdren traveled to St. Louis to represent the hereditary ovarian cancer community at the Midwest Comparative Effectiveness Public Advisory Council (CEPAC) meeting where they testified regarding the Institute for Clinical and Economic Review (ICER) report on the value of PARP Inhibitors for ovarian cancer.  Later in the month, on September 25, FORCE executive director Sue Friedman participated in the National Cancer Institute’s Council of Research Advocates advisory committee meeting. Finally, the month ended with Lisa Schlager traveling to Nashville to take part in the Genetic Health Information Network Summit, September 26-27.

October

Early October marked the end of National HBOC Week and the onset of Breast Cancer Awareness Month. In addition to participation in numerous local and national events aimed at honoring survivors and raising awareness about breast cancer, on October 25 Sue Friedman represented the hereditary cancer community and ABOUT Network patient-powered research registry at the PCORnet Principal Investigator Retreat. The following day, Lisa Schlager addressed advocates and DC staff of the Jewish Federations of North America with a presentation on current public policy issues around health care, research funding, and genetic privacy.

November

Representative Leonard Lance

NJ Representative Leonard Lance said at the PEAC congressional briefing, “It’s inexplicable why drugs are covered based on how they are administered.”

FORCE kicked off November at the annual International Society of Nurses in Genetics (ISONG) conference, November 3-5 in Reston, VA.  We hosted an exhibit aimed at educating the nurses about the information and resources FORCE provides for those affected by hereditary cancers, and the health care professionals who work with them. In addition, Sue Friedman presented a session on the XRAYS program and a poster on our Peer Navigation Program was featured in the poster session. The next week, Lisa Schlager joined representatives from other cancer organizations in meetings with staff from several Senate offices to discuss the importance of passing legislation to ensure equal access to anti-cancer treatments, regardless of the form they come in—IV, oral, injections, etc.  This was followed by a Patients Equal Access Coalition (PEAC) Congressional Briefing and strategy session on the parity issue. Later that day, Lisa and representatives from a broad range of health care nonprofits joined the DC staff from Genentech for its advocate policy briefing “Advocating Together, Transforming Tomorrow,” where members of Congress spoke on a variety of topics and attendees heard about the pharmaceutical company’s commitment to the patient community. On November 9, Lisa Schlager attended the National Coalition for Cancer Survivorship (NCCS) Cancer Policy Roundtable where topic experts spoke on the issue of value in cancer care.  Diane Rose represented FORCE and the hereditary cancer community at the Metastatic Breast Cancer Alliance Fall Retreat, November 10-12 in Philadelphia.  The following week, on November 13, Lisa Schlager attended the Partners in Progress: Cancer Patient Advocates and FDA event where she and other participants had the opportunity to learn about the FDA’s new Oncology Center of Excellent (OCE) and its commitment to working with patients. A proposal to develop a new legislative pathway to FDA regulation of diagnostic tests is gaining momentum in Congress. On November 17, Lisa joined select industry partners and patient group representatives in a briefing and discussion of the proposal.

December

Piri and Sue in San Antonio

FORCE staff attend San Antonio Breast Cancer Symposium

The month began with our participation in the National Comprehensive Cancer Network (NCCN) Patient Advocacy Summit: Addressing Survivorship in Cancer Care on December 1. The following week, four staff members flew to Texas to attend the San Antonio Breast Cancer Symposium, December 5-9. With 10,000 attendees, this meeting is one of the world’s largest breast oncology conferences. In addition to attending sessions to learn about the latest research and advances in breast cancer, FORCE staff attended numerous meetings and events with leading researchers, industry partners, and other patient advocates. We made a presentation about our work on behalf of women and men affected by hereditary metastatic breast cancer at the Metastatic Breast Cancer Alliance meeting and participated in a panel at an advocate briefing where we shared informed about our Peer Navigation Program.  On December 11, Lisa participated in National Academies’ of Science Committee on Return of Individual Research Results—Community and Participant Perspectives Discussion.

In addition to all of the efforts at the national level, over 120 FORCE support group meetings and other events took place in locations including Seattle, San Diego, Cincinnati, Kansas City, Columbus, Columbia, Chattanooga, Chicago, and many more.

Stay tuned for regular “Where’s FORCE” updates in the coming months to learn more about the work we do on behalf of the millions of individuals and families affected by hereditary cancers.

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