by Sue Friedman
I watched CSPAN with a sense of pride and awe as the House of Representatives voted on and passed HR 1522, designating National HBOC Week and Previvor Day. It is a day that has been 11 years in the making. It has been a long, exciting, sometimes frustrating and (now) gratifying journey that required tenacity and hard work. FORCE started the ball rolling, and we are proud of that.
In FORCE’s early days, fighting for awareness of HBOC and recognition of previvors as important stakeholders was a lonely effort. I remember debating and trying to articulate why our entire community, survivor and previvor alike, deserved its place at the table. Back then, I would listen in astonishment as groups that usually championed the underserved dismissed our community as being too small and insignificant to matter.
Sometimes nothing lights passion like being dismissed!
I knew something had to be done to change the language and culture of cancer to include our emerging group of stakeholders. A minority of Americans—about .2% of the entire U.S. population—carries a BRCA mutation. We represent a minority of overall population, yet we shoulder about 10-14% of the breast and ovarian cancer burden, with some of the highest cancer risk known to science. Our cancers are younger onset, when people are less likely to be screened. We are at risk for a second and even a third diagnosis. And we share genetic risk with our relatives. Ours is a community with unmet needs; we shoulder a disproportionate cancer burden. We may not be a majority stakeholder, but our community is an important cancer stakeholder nonetheless.
My commitment to uniting our community began with my own diagnosis 14 years ago. Hearing I had DCIS (early-stage breast cancer) threw me into the cancer community and survivor culture. My initial treatment was surgery. There was no discussion of genetics, hereditary cancer, fertility options, or reconstruction after mastectomy. I had a lot to feel grateful about. I also had serious personal concerns: my son was a toddler; my husband and I wanted another child. Would I ever give birth again? I attended a local support group for young women with breast cancer. After I shared my story and fears, a woman who was going through chemotherapy turned to me and said, “You have no idea what pain and suffering is.” Feeling dismissed, I left and never returned. My journey to a place of gratitude and acceptance was lonely because I did not know anyone going through something similar, and I was afraid to offend other women who were facing more serious disease. Nine months later when my cancer recurred to my lymph nodes, leading to more aggressive treatment, my fear and anguish returned. When I subsequently learned I had a BRCA2 mutation, I had my ovaries removed, ending my dreams of another pregnancy.
After my treatment, I met other women on the Internet who also had BRCA mutations. Some had cancer and belonged to the larger survivor community. But many didn’t, and they were hesitant to get the support they needed. Like other women, these high-risk individuals experienced trepidation and terror when it was time for another mammogram. Most were young women going through so much more than their peers; they were just looking for understanding. Focused on survival, the medical community referred to them as “unaffected carriers”: they carried a mutation (or were at high-risk) but they didn’t have cancer. But the decisions these women faced were difficult and similar to those of women who had a cancer diagnosis.
I watched these women reach out, sometimes almost embarrassed to ask for help. Although some communities welcomed them, too many times I saw these women’s very valid experiences dismissed. They didn’t have cancer, after all, so why did they need support? I knew in my heart that this high risk group deserved a safe haven and sense of belonging, a place to share their fears, confusion, and anguish without judgment. I knew our community MUST be united across our differences. Only then could we drive the direction of research to make sure that science looked for better answers for detecting, preventing and treating hereditary cancers.
Less than a year after my treatment ended, I founded FORCE to be that haven of support and resources for anyone at high risk; to give voice to all members. At that time, much of the public messaging about hereditary cancer was dismissive and minimizing—we were considered a small and insignificant group. In the face of this resistance, it was more critical than ever for our community to unite with a common message that our community must receive the recognition and proportionate resources we need and deserve.
We took a giant step towards our goal 10 years ago in response to one of our board members. She posted “I need a label!” articulating the need for identity for high-risk individuals who have never been diagnosed. We invented our own label—cancer previvor—a hybrid between survivor and predisposition to cancer. And the previvor movement was born.
The growing strength and mobilization of the previvor community improves our access to information and care. PARP inhibitor research could not have advanced as far without recognition by researchers and pharmaceutical companies that the high-risk population was now an organized community with the power and reach to help recruit clinical trials participants. It is an achievement accomplished only from our community acting together and speaking out in large numbers, survivors and previvors alike. And now, years later, as a result of our work, this year, for the first time, we received national recognition of HBOC and previvors for a week and a day.
We’ve worked long and hard for the gains we’ve made. Through In the Family, Joanna Rudnick turned the camera on herself and many FORCE members, and showed the world the poignant life of the HBOC previvor and survivor, and FORCE’s role in organizing us. These previvors demonstrated the high-risk sense of self to the world—facing their challenges head on, refusing to be delegated to the shadows, and eschewing the stigma that society places on people with diseases by normalizing words like “mutation,” “prophylactic surgery” and “genetic testing.” Our large and growing network of volunteers: our outreach coordinators, helpline volunteers, and members of FORCE and other groups have tirelessly spread the word, contacted their elected officials to support policy changes, shared their stories, and educated health care providers and the public.
Other champions have emerged from the medical and research community. Where would we be without researchers like Dr. Mary-Claire King, whose persistence and dedication led to the discovery of BRCA 1? Or Dr. Steven Narod, whose vast research has exponentially increased our knowledge of BRCA (his lab provides genetic testing related to research at no cost to participants). Drs. Judy Garber and Rebecca Sutphen are compassionate clinicians and researchers who care deeply about our community and serve on our board of directors to help assure our organization continues our work towards improved care for our community. Our volunteer advisory board members are individual champions who ensure that FORCE information is accurate and up-to-date. Over the years we found partners in other organizations, like the Coalition for Genetic Fairness, Genetic Alliance, the National Society of Genetic Counselors and Komen that rallied for passage of GINA. Other groups, including the Ovarian Cancer National Alliance, the National Ovarian Cancer Coalition, Living Beyond Breast Cancer, and the Young Survival Coalition shared our concerns about survivorship and previvorship, and early on invited us to the table as stakeholders.
Perhaps none have advocated on our behalf so articulately, passionately, persistently, and effectively as Representative Wasserman Schultz who conceived and drafted the EARLY Act that provides resources and awareness for young survivors and previvors. She also introduced and garnered support for H Res 1522. This legislation established National HBOC Week and Previvor Day, and launches a new era of awareness of our community. Perhaps no accomplishment has resonated so strongly and given us more pride. As I watched our elected officials discuss H. Res 1522, I listened as person after person described the toll that cancer had taken on their family; validating the important work of FORCE.
None of us knows where our journey will take us tomorrow. Those who are cancer free may not always be that way. And those of us who have been diagnosed may live years with our disease. Like me, some survivors are the first in two or three generations to be diagnosed. And sadly, many in our community have watched family member after family member face a diagnosis. Ours is a diverse community, and our individual circumstances could divide us…if we allow them to. We must continue on as a united community. As a survivor I recognize that we could not have achieved all that we have without previvor voices and effort. And similarly, although previvors take action to remain cancer free, some will face cancer themselves, or watch loved ones face diagnosis. They will benefit from the research and resources discovered because of survivor involvement in research.
There is a new awareness of our community. It is heartening and reassuring, and it is being bolstered by fresh voices within. FORCE members have published new books: The Previvors and What We Have, and FORCE is collaborating with previvor Claudia Gilmore on Previve, a new documentary. Through these works, and future actions, we carry on our battle for research and resources. It took a decade, but no one will ignore, minimize, or dismiss us now. Our movement is too strong and our voices are too loud!
Happy National HBOC Week and Happy Previvor Day!Tags: brca, BRCA 1, BRCA 2, BRCA1, BRCA2, breast cancer, Genetic counseling, genetic testing, ovarian cancer, previvor, prophylactic surgery