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A guy with a rare form of cancer ponders the significance of being obscure.
Having cancer is bad enough. But imagine for a moment being tagged with a cancer that confounds even the medical experts and dissuades the pharmaceutical industry from funding the research necessary to treat it.
There is no universally adopted definition for rare cancers. The US Orphan Drug Act of 1983 defined rare diseases as those affecting less than 200,000 people in the United States. Overall, approximately 20% of patients with cancer in the United States are diagnosed with a rare cancer.
Enter: Male Breast Cancer.
Granted, there are diseases much rarer than this one, but this is a cancer that more often than not receives an incredulous look and the puzzled response: "I didn't know that men could get breast cancer."
So how can I, as a male breast cancer survivor, deal with this imbalance? I'm not talking about the ratio of men to women who have it; we can't change the actual numbers of people who have been diagnosed with breast cancer. The real disproportion lies in the people of influence who for whatever reason choose not to change the dynamics of our disease; the companies and corporations and practitioners who profit in some fashion from human illness.
When I use the words "profit from," I'm not necessarily implying that something sinister is going on. Many doctors I've met over the years have a genuine drive to be of service to humanity. But in the medical world, whether it's as individuals or corporations, people benefit from illness.
With regard to those most influential participants in the world of rare cancers, there's simply no reward (other than saving lives) in developing a drug or even a clinical trial that favors men with cancer in their breasts. That will change of course. It's inevitable. But do more men than the 2,700 who annually fall prey to this disease in the U.S. have to actually get sicker before the "the people of influence" begin to contribute their resources for better reasons than just treating the population that seems to need it most?
When you think about it, why would any industry design a product to minimize its own position in a very competitive world? Of course, there are innumerable individuals who work for these companies who believe that their contributions are more important than their product; but can you imagine a multi-billion dollar drug company identifying their primary purpose for being in business as their goal to end suffering? If they can accomplish that, we all benefit. But what really comes first? Is it their accomplishment or our benefit?
Those of us who actually depend on drugs to extend our lives have a very different perspective from those whose ambition is to create the chemicals that may or may not make that possible. So what does all of this mean to cancer survivors who live in the shadow of mainstream medicine? As with any crusade in the evolution of medical equality, we ask for equal time and when that doesn't work, we hope that those who create and infuse the endless avenues of healing do so with an open eye and a compassionate heart and a virtuous objective to heal the world. And that should mean everybody in it.