Where Your Dollars Go

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Where Your Dollars Go

The accomplishments listed as “current” have been achieved in the last twelve months.

RESEARCH

Current:

  • In 2017, 23 research advocate volunteers represented FORCE through 52 placements, including DoD, AACR, AstraZeneca, EGAP and NCCS.
  • Relaunched HBOC Research Search Tool - the first research matching tool developed specifically to help people with HBOC find studies enrolling people with HBOC.
  • FDA approved the first PARP inhibitor (Lynparza) for treatment of metastatic breast cancer caused by a BRCA1 or BRCA2 mutation. FORCE was part of the recruitment effort for the OLYMPIAD clinical trial that led to this approval. 

Celebrated:

  • FORCE was part of the research recruitment strategy for the clinical trials that led to the FDA’s approval of all three PARP inhibitors for the treatment of ovarian cancer.
  • Created the ABOUT Network, the first research registry maintained by and for the HBOC community. ABOUT is part of the National Patient-Centered Clinical Research Network (known as PCORnet).  It provides a unique and comprehensive resource to help researchers find new therapies and cures. 
  • Recruited thousands of people into HBOC-specific clinical trials and research studies (including studies of new targeted therapies) to advance research/medicine.
  • Testified on behalf of our community to expedite research and FDA approval for new drugs for hereditary cancers, including Lynparza, the first targeted therapy for women with advanced hereditary ovarian cancer.
  • FORCE's Research Advocate Training (FRAT) is the first hereditary cancer program to train HBOC patients to take an active role in shaping and directing research-related activities to advance treatment and therapies and to save lives. The FRAT program provides a foundation of knowledge and tools to effectively represent the hereditary cancer community in the research arena. 

SUPPORT

Current:

  • The Peer Navigation Program supported over 1,500 participants in its first two years. Each participant was provided with 1:1 confidential phone support and a free resource guide. Testimonials have shown that participants are comforted by the opportunity to be connected with someone who understands their situation and are relieved to receive resources all at once, saving them time to focus on decision-making, rather than gathering information.
  • In 2015, FORCE created an intensive VolunteerFORCE Academy to successfully onboard volunteers who are qualified and emotionally ready to confidently support and advocate for others in the HBOC community, while having a rewarding experience. To date, 350 graduates have benefitted from the informative training to further their own education for their families and their community by representing FORCE in one or more of seven unique volunteer roles. Volunteer retention rates over the years have exceeded 80%.

Celebrated:

  • Offers the only 24/7 hotline for people seeking information about hereditary cancer and their unique situations.  We also run extensive message boards and offer the largest library of online resources on HBOC.
  • Runs a network of volunteer-led peer support groups in 50 cities nationwide, providing group and individualized support to thousands of women and men each year.  Over 100 Peer and Genetic Expert Group Leaders provide resources and support to constituents and provide materials to local health care providers.
  • In 2016, FORCE created the first Peer Navigation Program for individuals and their families who are affected by hereditary cancer by using a custom database to match individuals to trained volunteers who have faced similar experiences.  To date, over 140 Previvors and Survivors aged 23 - 75 years old, who have different genetic mutations and experiences, are trained to offer confidential personalized phone support. Participants receive a personalized expert-reviewed resource guide consisting of up to 21 topics that commonly arise during a hereditary cancer journey. The volunteer helps participants navigate their decision-making process, while providing empathy and reassurance. 

PUBLIC POLICY

Current:

  • Worked to pass the Protecting Access to Lifesaving Screenings (PALS) Act, national legislation that preserves mammograms at no cost for all women, ages 40-49, for another year--until January 1, 2019.
  • Collaborated in efforts to challenge regulations passed by the EEOC which permit employers to impose financial penalties for employees who do not participate in an employer-sponsored wellness program. A court vacated the rule effective January 2019.
  • Successfully advocated for the ability to deduct medical expenses exceeding 7.5% of one's adjusted gross income for the 2017 and 2018 tax years. 
  • Engaged in efforts to pass state and federal legislation ensuring equal access to anticancer treatments, regardless of whether they are given via IV, oral or injection. To date, 43 states have enacted laws and a federal law has been introduced.

Celebrated:

  • Helped pass the Genetic Information Nondiscrimination Act (GINA), which prevents employers and health insurance agencies from making decisions based on a person’s genetic makeup. 
  • Successfully opposed patents on the BRCA1 and BRCA2 genes, ensuring genetic testing becomes more widely available and affordable across the country. 
  • Fought to improve access to genetic information and testing for everyone who needs it.  Economic barriers and outdated policies should not stand in the way of one’s health.
  • Achieved expanded Medicare coverage of genetic testing for individuals who have/had cancer consistent with hereditary cancer syndromes, including men and those affected by prostate and pancreatic cancer; coverage of multigene genetic tests panels (if more than one mutation may be indicated), and clarification of the BRCA testing policy for use of the targeted cancer therapy, Lynparza. 

EDUCATION

Current:

  • We offer the largest compilation of HBOC materials, including expert-reviewed information, research studies, articles, resources, and stories of individuals’ personal experiences.  We make this library available online to anyone who needs it (at no cost).
  • We undertake vital awareness outreach, distributing over 250,000 brochures to health care providers, health fairs, community events, temples and churches, and participating in media stories with over 50 million impressions annually.  Our social media community is growing and highly engaged.

Celebrated:

  • Held the 10th Joining FORCEs Conference in June of 2017 (the next conference is scheduled for October 2018), a one-of-a-kind annual symposium that provides opportunities for the HBOC community to learn from medical and genetics professionals, network with one another, and share personal experiences.  Since 2006, thousands have benefited from this unique opportunity to connect directly with experts and other people facing similar challenges. This conference has up to 800 attendees each year.
  • Created the CDC-Funded XRAYS program as a trusted source of information for young women with breast cancer and young high-risk women. The program translates research reports in the media into everyday language and provides young women with the context to use the information to make informed medical decisions. To date we have published over 100 XRAY reviews.
  • Updated breast reconstruction photo gallery to include categories of types of mastectomies and include photos of men who have had mastectomies.
  • Published results from our media use survey for young women with and at high risk for breast cancer in the peer-reviewed journal, Health Communication (Sept. 2017)
  • Secured funding to develop user-friendly decision-making guides to help individuals with hereditary cancer make informed medical decisions in collaboration with their health care team. 

AWARENESS

Current:

  • Forty-five quotes from FORCE were documented in 2017 via newspapers, magazines and “on air” outlets, establishing FORCE as the clear "go to" expert on hereditary cancer.
  • Distributed 99,900 brochures in 2017 at conferences, trade shows, hospitals, support group meetings, etc. in order to raise awareness of hereditary cancer.
  • 145,613 visits were made to the KNOW MORE web pages. FORCE's KNOW MORE program, funded by a grant from AstraZeneca, increases awareness of ovarian cancer and the fact that 1 in 5 women with ovarian cancer have a genetic mutation that caused her cancer.  The program provides information that may guide a patient’s treatment options.  
  • Promotion of XRAYS (“eXamining the Relevance of Articles for Young Survivors", a reliable resource for breast cancer research-related news and information) resulted in 126,711 visits to the XRAYS' web pages.  
  • Social media followers reached 49,275 in 2017, resulting in tremendous growth of our online community of members affected by hereditary cancer in order to share information and create a place for social interaction.

Celebrated:

  • Coined the term "Previvor" in 2000 to give a name to those members of the hereditary cancer community who are a "survivor of a predisposition to cancer."  Anyone who has not had cancer “but knows they have a mutation that greatly increases their risk of cancer” or comes from a family with a strong history of cancer “but no mutation has been found” is a previvor and a member of FORCE's hereditary cancer community.
  • In 2010, FORCE successfully lobbied for a Congressional resolution declaring the first-ever National Hereditary Breast and Ovarian Cancer (HBOC) Week and National Previvor Day.  The goal of HBOC Week and Previvor Day is to raise awareness about hereditary cancer.  HBOC Week marks the transition between National Ovarian Cancer Awareness Month and National Breast Cancer Awareness Month.

FORCE:Facing Our Risk of Cancer Empowered