Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.
by Lisa Schlager
“An important but often overlooked component of FORCE’s work is advocacy…"
As I look back on my decision to undergo genetic counseling and testing, I think my easy acquiescence was due partly to ignorance and partly to a false sense of invincibility. In 1999 my paternal aunt called to tell me that she’d tested positive for the BRCA1 mutation. I was in my early 30s, recently married, absorbed in my career, and trying to start a family. And yet, I quickly agreed to be tested. “Why not,” I thought, “It’s better to know. “ My test was positive; I too had a BRCA mutation.
Unlike many affected by BRCA, I had not watched my mother or sister battle cancer. There were few women on my father’s side of the family and although my grandmother died from cancer (presumably lung cancer), I’d never experienced the pain of watching someone close to me fight breast or ovarian cancer.
Two children and a few surgeries later, I recognized that I have been given a gift: the gift of knowledge, and the ability to make personal choices to help ensure that I remain healthy. During my 10-year journey, I discovered FORCE. I was impressed with the comprehensive information and support the organization provided as I navigated my BRCA journey.
When my youngest child started kindergarten, I wanted to do something meaningful with my free time. FORCE welcomed me as an outreach coordinator and teamed me with a wonderful partner to reinvigorate the organization’s Washington, D.C. group. Our primary focus has been to provide support and networking opportunities to local members. We’ve also made a concerted effort to educate the community about hereditary cancer.
An important but often overlooked component of FORCE’s work is advocacy, and living in the D.C. area has provided unique opportunities to make a difference. I was honored to join Congresswoman Debbie Wasserman Schultz and women of other breast cancer organizations in formulating the EARLY Act. FORCE participated in the preliminary meetings on this important legislation and continues to play a role as the bill travels through the lawmaking process.
Last fall, I testified before the Secretary’s Advisory Committee on Genetics Health and Science, an advisory panel to the Secretary of Health and Human Services on issues surrounding the development and use of genetic technologies. I spoke on behalf of FORCE about the marketing of BRCA tests to consumers and doctors who are not trained in genetics. In October, I represented FORCE at the White House as First Lady Michelle Obama and Jill Biden recognized Breast Cancer Awareness Month, with the goal of raising awareness about healthcare reform to help uninsured or underinsured women who can’t get adequate health coverage because they have a cancer diagnosis in their medical history.
The past year-and-a-half has been more rewarding than I could have imagined and I have developed a passion for FORCE and its mission. We in the BRCA community carry an unfair cancer burden, yet we’re underrepresented in the cancer community. There are many cancer organizations, but none represents us like FORCE. It is our duty to educate people about hereditary cancer. FORCE needs more people to take leadership roles to realize this goal.
Please join me in advocating on behalf of our community. Together, we can save lives.
Lisa Schlager is FORCE Director of Community Affairs and D.C. Outreach Coordinator. She recently joined the FORCE Board of Directors.
Do you have something to say that may inform our readers or ease their experience? We invite you to share your reflections or personal story about dealing with the issues of hereditary breast or ovarian cancer. Tell us how you feel, how you cope, or what you’ve learned. Email stories of 500-550 words to email@example.com or mail to FORCE, 16057 Tampa Palms Blvd. W. #373, Tampa, FL 33647. Please include your name and daytime telephone number so we can contact you if we decide to publish your story in a future issue.