According to the World Health Organization (WHO), health is
. . . a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.
Living as opposed to surviving. Wholly well rather than declared NED (No Evidence of Disease), the state commonly used to describe a patient’s status after treatment. Breast cancer surgeon, Dr. Deanna Attai, explains that, “we can never truly say a patient is cured of cancer – the best we can do is say that we find no evidence of it … NED is not perfect (very few things in life are), but still a good place to be.”
Day 5 of the Health Activist Writers Monthly Challenge asks us to consider what we might do as health activists, if we were not limited by money or time. I would begin by asking how to make sure the WHO’s definition of health, is more than words set down on paper; rather, that it drives every health care decision and policy. Those of us who live with breast cancer surely aspire to more than NED, but until there are radical changes at the policy level, many of us must settle for “good enough” health. Many patients, breasts amputated, bodies scarred, minds muddled by medication, with hearts that beat a little faster with the terror of recurrence, believe they have little choice but to acquiesce to grueling regimens that include radiation and chemotherapy, the complications of which may even kill them. Treatments can be as formidable as the cancer itself, and we should worry that profit interests of the companies who manufacture them may take precedence over the well-being of the patients subjected to them.
I agree with Dr. Matthew J Edlund who argues that “absence of disease is an impoverished vision of health.” He suggests we aspire to a definition of health that recognizes us as social beings, that includes spirituality, so important to the overall well-being of so many of us. Working towards such a view of health or wellness might prompt the policy changes that are urgently needed to address the epidemic of breast cancer, the approval of kinder treatments, the lack of access to quality health care choices for families who live in poverty, the contaminants in our environment, and the right of every human being, regardless of race, ethnicity, and social status to good health and good health care. Ediland suggests we strive for a definition of health as “Complete physical, mental, social and spiritual well-being for individuals and populations.”
Imagine how much better our world would be for us and for our children if we demanded this standard of health for everyone. The sobering reality is that we have been forced, by circumstances often beyond our control, to settle for “good enough,” just another statistic in Nixon’s War Against Cancer which shows little sign of ending after 40 years in the trenches and billions of dollars.
In 1992, legislation made mandatory the reporting of cancer in Arizona, where I live. Arizona Revised Statute §36-133 also required Cancer Registries to conduct lifelong follow-up of cancer patients. To that end, over a year ago, I received a letter from Scottsdale Healthcare. Initially, I slid it under a pile of junkmail, anticipating the obligatory pink statement, its itemized charges as confusing as the explanation of benefits that strangely never seem to apply to me. By the time I returned to it, my checkbook at the ready, I was surprised to find not a bill, but a straightforward request for information about my health from the Cancer Registry and a postage paid return envelope. Believing that maybe, just maybe, my “data picture” might help us find out what causes and how to prevent all cancer, I completed the form with every detail about my surgeries and treatment and sent it off.
But how accurate is that data about me given that no one could ever tell me with surety how long I’d had cancer before I detected the lump myself? My breast cancer had evaded detection by three mammograms, camouflaged by dense tissue. Along with my health, I suppose my data picture is “good enough.”
So what are the implications for data within the context of early detection and survival? Is it possible that data may be manipulated? My view, as a layperson with breast cancer and not a statistician, that major players such as the Susan G. Komen foundation have artfully used statistics to place the onus on women not only to detect their own breast cancer, but also to “survive it.” By manipulating statistics to claim that ”The five-year survival rate for breast cancer when caught early is 98 percent. When it’s not? 23 percent.“ Komen overstates the power of mammograms and, once again, distracts us from the horrible reality that metastatic breast cancer kills approximately 40,000 breast cancer “survivors” annually.
With all the billions of dollars and mountains of data available to us, why is that statistic not changing? Why are we so far from the World Health Organization’s definition of health? Perhaps we can get just a little closer by taking a giant collective step towards accepting the premise of Sir Austin Bradford Hill, pioneer of the randomized clinical trial:
Health statistics represent people with the tears wiped off.