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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Beyond Awareness: Working to Improve Outcomes for People Facing Hereditary Cancer

September 27, 2015
HBOC Week Previvor Day Logo 2015

HBOC Week Previvor Day Logo 2015

This week we mark National Hereditary Breast and Ovarian Cancer (HBOC) Week, and on Wednesday, National Previvor Day. This awareness campaign acknowledges the over one million people and families in the United States affected by hereditary cancer, due to a BRCA, PALB2, PTEN, ATM or other mutation linked to these cancers or a strong family history of cancer. HBOC Week honors hereditary cancer survivors, and previvors – people who are living with an increased risk but have not been diagnosed with cancer.

Unfortunately, the majority of individuals – both men and women – who carry cancer-causing mutations are unaware that they are at increased lifetime risk for various cancers. Less than 30% of people who meet national guidelines have undergone genetic counseling and testing. And, although the media continues to bombard us with articles about the “Angelina Jolie effect” and BRCA testing, increased awareness has not necessarily improved public understanding of genetic counseling, genetic testing, gene mutations beyond BRCA, hereditary cancer, or the medical options for managing cancer risk. Public misperceptions about HBOC abound.

Clearly, awareness is not enough.

Fortunately, raising awareness is just one small facet of FORCE’s role within and beyond our community.

FORCE’s programs are organized around four pillars:

Education: In order to make informed decisions about their health care, people need access to credible, trustworthy information. Although it is helpful for people to learn about genetic testing for cancer risk, they also need to know about national guidelines, medical options, and research on the benefits and risks of each medical option available. Through our website, publicationsvideos and webinars, conference, XRAYS – Making sense of cancer headlines program, we equip people with credible, expert-reviewed information so they can make difficult medical decisions with confidence.

Research: FORCE’s commitment to research includes building our ABOUT Network Research Registry to conduct comparative effective research and answer research questions that are critical to medical decision-making, collaborating with researchers focused on HBOC research, promoting enrollment into HBOC clinical trials, and reporting research findings back to the community. These efforts have, and will continue to improve options and health outcomes for members of the HBOC community today and for future generations.

Support: Our network of peer support leaders generously share their time, knowledge, empathy, and many experiences to ensure that no one faces a hereditary cancer journey alone. These specially trained volunteers schedule, organize, and facilitate regular support meetings in communities throughout the country, as well as provide one-on-one support to individuals dealing with emotional and physical effects of hereditary cancer. In all their endeavors, peer support leaders create a soft landing and compassionate space for all members of our community.

Advocacy: Our advocacy efforts include work on legislative, regulatory, and research initiatives, addressing issues that impact our community. We work to close gaps in protections and access to care, so that people with HBOC can receive the services to which they are entitled. FORCE was active in facilitating passage of the Genetic Information Nondiscrimination Act (GINA) and working toward the 2013 Supreme Court decision that struck down gene patents. Today FORCE continues our work to protect our rights; fighting efforts to weaken GINA, challenging inequities in access to health care, advocating for more research and better medical options, and training consumers to participate in research advocacy.

All of these programs would not be possible without the continuing support of our community, our network of dedicated volunteers, and our staff. Together we continue to change the landscape of HBOC and improve health outcomes for ourselves and future generations. We ask that you do one thing this HBOC Week; help FORCE in our efforts by joining our For Our Children fundraising campaign to help us sustain our important work.

To everyone affected by hereditary cancer in any way; may happiness and good health be yours; not only during HBOC week, but every day throughout the year. Be empowered, and be well!

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  1. […] Source: Beyond Awareness: Working to Improve Outcomes for People Facing Hereditary Cancer – Facing Our… […]

  2. Diane Carr says:

    Are you aware of any research looking at whether or not behaviors that have been linked with lower risk of breast cancer in the general population can also notably lower risk in people with BRCA1 or 2 mutations?

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

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

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