Dear Dr. Oransky,
I recently watched your TedMed presentation and I share your concerns about medical overtreatment of certain conditions and the importance of weighing risk and harm when considering medical interventions. I agree with your point that not all medical tests and interventions have clinical value. I also agree that all stakeholders should share the responsibility for appropriately applying medical technology based on evidence and outcomes. However, I disagree with some of your statements, and I feel compelled to correct what I believe is a misunderstanding on your part about the term “previvor,” and the intent of the advocacy group FORCE in coining and using the term.
In my opinion, your assertion that advocacy groups use “previvor” to make more people feel they are at risk and raise more funds is incorrect. I founded FORCE in 1999, not to make money, but to ensure that people have access to credible information about hereditary cancer, that hereditary cancer research continues to provide better options, and that no one must face it alone. FORCE does not inflate people’s risk. We refer people to genetics experts based on professional consensus guidelines published by the National Comprehensive Cancer Network (NCCN).
Further, previvor is a term developed for a group of people who carry a mutation that confers a high cancer risk in their lifetime. FORCE is a national non-profit organization with a mission to serve individuals and families with a BRCA gene mutation or hereditary cancer. We coined the term to refer to individuals who are genetically predisposed to cancer but have not been diagnosed. The term was a response to a plea by one of our members who lost her mother to cancer at a young age. Learning that she had inherited a BRCA1 mutation and potentially faced the same fate, she sacrificed her own breasts, ovaries, and fertility to reduce her very high risk. Yet she felt dismissed and marginalized by people who did not understand her situation. She articulated what many in our community felt: they needed and wanted a way to collectively organize, support each other, and advocate for resources to address their unmet needs.
My own breast cancer was diagnosed at age 33 and recurred the year following my initial treatment. I endured chemotherapy, radiation, and an increased likelihood of an early death from cancer. My son was only two years old at the time. I was forced to take a leave of absence from my work during treatment and went into medical debt to pay hospital and treatment costs. Had I known of my inherited predisposition at the time I would have taken steps to avoid cancer or detect it earlier. My experience is just one illustration of the financial, emotional, and physical costs of not knowing about a genetic predisposition to disease. These burdens impact entire families and can affect long-term quality of life. Many women pay with their lives.
Too many hereditary cancer families have watched their loved ones battle and too often lose their lives to the disease. They want to know what they can do to avoid the same fate for themselves and their own children. They face lifetime risks for cancer as high as 90%. Their risk-management options—preemptive surgery, risk-reducing medications, and heightened surveillance—are not without side effects or other risks. complex information about risk and risk-management and using it to make informed decisions. Although risk-management options are not ideal, most genetics professionals concur that hereditary cancer risk assessment and associated interventions have clinical utility. Research from peer-reviewed journals demonstrates that risk-management options can lower cancer-associated and overall mortality in the highest-risk cohort.
As an organization whose mission includes education, FORCE understands the challenges of presenting complex information in a balanced, understandable, compelling, and humane fashion. We take this responsibility seriously and we frequently consult with our expert advisory board for guidance. It is my opinion that your representation of previvors and our advocacy for the community was neither balanced nor accurate. Your baseball analogy illustrated your point about overtreatment of pre-conditions, but you neglected to mention inherited cancer risk, the situation for which the term was established. You cited “pre-acne” as an example of the absurdity of treating a precondition, even though the consequences of a diagnosis of acne and a diagnosis of cancer are not remotely the same. Women with BRCA mutations have elevated lifetime risk of developing breast and ovarian cancer that is many times higher than the general population. They are more likely to develop aggressive cancers and at a younger age when they are less likely to be screened. Thousands of women die from these cancers annually. Given these facts, the example of pre-acne is not a realistic comparison to inherited cancer risk and in my opinion insults a group of people with a very serious set of medical concerns.
Members of our community have an inherited mutation that leads to changes on a cellular level, which put them at very high risk for disease. Although our genetic differences may not be obvious on the surface they cause challenges that separate us from other people who do not possess these mutations. Ignorance and ridicule directed at people with medical challenges of any type are inappropriate.
I hope that you will provide a clarification of your statements about the meaning of the word previvor to include the fact that it was coined to describe and empower a specific group of people at very high risk for a deadly disease like cancer. Further, I encourage you to use your role as an experienced medical journalist and professor to delve more deeply into the difficult issues of people with BRCA mutations. In doing so you have the potential to make a positive impact on a lot of people.
I am not a baseball player, Mr. Oransky, but I do play tennis. In tennis when you do not swing at the ball, you lose the point. People with a BRCA or other inherited cancer-predisposing mutation face extraordinary risk for a disease that is too often fatal. Many of us have lost so much to cancer. Not swinging at a disease that has a high likelihood of coming our way is not a wise option.