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.

| More

Where’s FORCE?

May 1, 2019

This issue of “Where’s FORCE?” features an overview of the many events in which FORCE staff and volunteers participated during the past few months.


December is often a slow time due to the holidays, but the FORCE team kept busy. Our research team—Executive Director Sue Friedman, Vice President of Education Piri Welcsh, and Director of Education and Research Kelly Owens—attended the San Antonio Breast Cancer Symposium, December 4-8. 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.

On December 5, Lisa Schlager, Vice President of Public Policy, attended the 11th Annual Conference on the Science of Dissemination and Implementation in Health in Washington, DC. The sessions she attended on improving health equity in the cancer care continuum will help FORCE address health disparities in cancer screening, diagnosis, treatment, and survivorship care. The sessions featured strategies to address racial/ethnic minority, socioeconomic, and geographic disparities. On December 10, Lisa also attended the similarly themed National Comprehensive Cancer Network (NCCN) Patient Advocacy Summit: Advocating for Equity in Cancer Care.

The International Foundation of Employee Benefit Plans (IFEBP) is a nonprofit membership organization that provides education, research, and information to health plan administrators. Members include administrators from numerous self-funded plans that are exempt from many of the laws group health insurers must follow, including the Affordable Care Act. On December 13, Lisa Schlager presented a “Cancer Genetic Testing and Related Care: Costs and Benefits” webinar to IFEBP members to demonstrate the value of hereditary cancer genetic testing to patients and insurers.


January kicked off with a bang as FORCE launched its new Message Boards.  Check them out!  We also learned that a newly implemented Medicare policy curtails access to hereditary cancer genetic testing (see “February” text below).  Much of the month was spent researching the policy rationale and forging alliances with other advocacy organizations impacted by the National Coverage Determination (NCD) for Next Generation Sequencing.

The 116th U.S. Congress convened on January 3. Developing positive relationships with legislators is important in advocating for policies that benefit our community. On January 23, Lisa Schlager attended a welcome event for new and veteran members of Congress on Capitol Hill.  Executive Director Sue Friedman and Senior Vice President of Volunteer Programs Sandy Cohen then participated in the “Bold with Patients Roundtable Conversation” patient advocate and listening session convened at the Allergan headquarters in Madison, NJ on January 30.

The Personalized Medicine Coalition (PMC) is conducting a two-year project to develop a patient-centered research agenda. This work will identify evidence gaps that must be filled to ensure personalized medicine treatment strategies better align with important patient outcomes. On January 31, Lisa Schlager took part in a PMC forum to help develop a set of patient-centered principles that will inform the research agenda for this initiative.


As a member of the Defense Health Research Consortium, FORCE advocates for funding to support research under the Department of Defense (DOD) Congressionally Directed Medical Research Programs (CDMRP).  Lisa Schlager joined other consortium members on February 5 to learn more about the group’s important work.

FORCE also spearheaded a stakeholder meeting with the Coverage and Analysis Group at the Centers for Medicaid and Medicare Services on February 19. During the meeting, Lisa Schlager and representatives from fellow patient advocacy and health care provider organizations shared concerns regarding Medicare’s application of its National Coverage Determination (NCD) for Next Generation Sequencing to hereditary cancer genetic testing. The policy stipulates that only those with “recurrent, relapsed, refractory, metastatic, or advanced stages III or IV cancer” who are seeking additional treatment are eligible for coverage of NGS-based testing. Read our blog on the meeting to learn more.

On February 25, Lisa Schlager hosted an exhibit and attended the ZERO Prostate Cancer Policy Summit in the Washington, DC area. That day, she also spoke in the American Cancer Society’s Cancer Action Network “Patients’ Access to Treatments” webinar on genetic testing. Lisa talked about patient protections and access to care, including testing, screening, and risk-reducing surgeries. The following day, she participated in a BioOncology Policy Roundtable hosted by Genentech, and on February 27, she attended a STAT News event entitled “Is the new Congress ready to lower drug costs?


March was an exceptionally busy month for the FORCE team. Lisa Schlager took part in the Cancer Support Community’s Next Generation Sequencing Roundtable on March 8 in Washington, DC. Volunteers staffed a FORCE table at the Young Survival Coalition Summit on March 8-9 in Austin, TX, and on March 9, Sue Friedman spoke at the CURE patient focused sessions at the Miami Breast Cancer Conference, and local volunteers hosted an exhibit.

On March 12, we hosted a webinar on “Navigating Insurance Challenges” for FORCE VIPs. The presentation is now available in our Be Empowered webinar series library. Lisa Schlager attended a Congressional Briefing on Diagnostic Breast Imaging on March 14 and traveled to St. Louis to participate in the Metastatic Breast Cancer (MBC) Alliance’s Strategic Planning Summit held March 15-17. The MBC community was also a focus at the Tigerlily Foundation’s Metastatic Breast Cancer Listening Summit, which Lisa Schlager joined on March 20 in Washington, DC.

The FDA and its General and Plastic Surgery Devices Advisory Committee hosted a two-day meeting on breast implant safety on March 25-26. Lisa Schlager made public remarks on behalf of FORCE. More information on the meeting is available in the Current Advocacy Issues section of our website. The same week, FORCE volunteer Robin Karlin (Pittsburgh) attended the DC-based Health Datapalooza, sponsored by Academy Health. 

In addition to all of these events, FORCE volunteers were engaged in about 90 local support group meetings and events in locations, including Ann Arbor, Boise, Bozeman, Charleston, Cincinnati, Louisville, Portland, Salt Lake City, Tallahassee, and many more.  Sincere thanks to all of our wonderful, dedicated volunteers who help us make a difference!

Visit the advocacy section of our website for the latest updates on important issues, and check back for a new “Where’s FORCE?” update in a couple of months to learn more about the work we do on behalf of the hereditary cancer community.

DC Metro FORCE’s family fun night. Ledo’s Pizza generously donated 10% of sales.

Mary Stranahan Foti represented FORCE at the Komen Metastatic Conference in Ohio March 9.

Debbie Setuin, Kirstin d’Incelli and Annie Brickel at Miami Breast Cancer Conference in March.

Tags: , , , , ,

Leave a Reply

Connect with others.

Call our Helpline

Our helpline offers peer support for people concerned about hereditary cancer. All calls are confidential. Call any time.

Join a Local Group

FORCE has outreach groups throughout the United States and in Essex, United Kingdom that meet periodically to offer peer support, and share resources.

FORCE:Facing Our Risk of Cancer Empowered