I just received an email from the National Breast Cancer Coalition. I am a staunch supporter of NBCC. Because of the advocacy summit last May, I have had many opportunities to make a difference. This year, I hope to see far more advances than ever before. In part, this is what the email says:
“The NBCC Board of Directors will establish our 2013 Legislative and
Public Policy Priorities during the January meeting. We are
seeking your input as to what priorities NBCC should advocate for in
“The plan focuses on primary prevention, stopping women from getting
breast cancer, and understanding and preventing metastasis (the spread
of cancer), which is responsible for 90% of breast cancer deaths.
Recommendations for 2013 should take into account how the proposed
priority moves our plan towards meeting the overall goal of Breast
Cancer Deadline 2020-ending breast cancer by January 1,
“As a reminder, NBCC always has chosen those priorities that will have
a major impact on breast cancer. The issues must be overarching.”
I am a member of NBCC, I support and believe in the Deadline 2020 initiative. However, I am disturbed by the glaring omission from “the plan” which appears to be two-fold:
- Primary prevention. That would be most helpful to my daughter and one of my sisters. Neither of them has had a breast cancer diagnosis.
- Understanding and preventing metastasis. That would be most helpful to me as a breast cancer patient presently NED but with the full understanding that tomorrow, the cancer could present as a distant recurrence.
There is no mention in that plan of those patients already diagnosed with metastatic disease. Their lives are hanging in the balance. I would like to understand how (or if) they fit into the plan. Neither disease nor metastasis can be prevented in this group of women and it is well established that close to 40,000 of them will die this year. That number remains primarily unchanged for decades.
Advances have been made in many areas, and while I am often met with tremendous push-back, I find the advances to represent little meaningful progress. As I recently stated, surgery is still surgery, chemotherapy is still toxic and endocrine therapy comes at a price only exceeded by the potential price of radiotherapy.
I think it is imperative for NBCC to step up and include a third point in the plan. Specifically, I would like to see something like this included:
- Prevention of death from metastatic disease
I believe it is essential to spell out separately, using clear and direct language, how the patients whose disease has already metastasized fit into the NBCC plan. Too many have died, too many continue to die and too many more endure debilitating treatments hoping the research catches up before they run out of treatment options.
This is simply unacceptable. We can not keep leaving the metastatic patients out of the discussion. They are a separate and distinct group whose needs are largely ignored and whose diagnoses are an inconvenience because it taints the illusion of progress.
While “understanding metastasis” may impact some, we need to have a plan for ALL metastatic patients. I firmly believe any breast cancer organization with broad objectives should be allocating a set amount of assets directly for metastatic disease and solely for the benefit of metastatic patients.
I hope NBCC will take a leadership position in such an initiative and that many others will follow. I hope that we can soon dispense with the need for a moment of silence at the commencement of each meeting. THIS is what it means to change the conversation.