Back in the 1980s (1981 or 1982) I was watching The Phil Donahue Show with the topic of the day the disease AIDS. It was the first time I heard of the disease and recall being shocked that, one, it was so pervasive in the gay community, but, two, it was becoming pervasive in the heterosexual community. I consumed the entire hour and wanted to know more. The reactions of the some bigots in the audience floored me; one woman stood up and declared with palpable hate: “This is your gay disease. Who cares about your gay disease?” I didn’t fully understand AIDS by any means, but I knew that any disease had to be taken seriously and this unforgiving and deadly disease even more so. What difference did it make that gay men were more likely to contract it than anyone else (at that time)?
I learned a lot more about AIDS after that show and it wasn’t long before it dominated the national consciousness. ACT UP! staged what many characterized as militant demonstrations because it was, frankly, the only way to demand action and demand research dollars toward understanding and destigmatizing the disease, increasing access to experimental therapies, and curing it. The disease was (and remains) a world-wide scourge. If radical demonstration wasn’t your thing, then others put their energy into awareness and acceptance and made quilts.
The quilts traveled the country and the world and served a dual purpose: they raised awareness and destigmatized the disease by promoting tolerance and acceptance of people first. With public policy pressured on both sides, awareness grew, research dollars were committed, and in the thirty-plus years since we all heard of HIV/AIDS not only have great strides been made in the management and treatment of the virus, but the world was made aware and a world-wide strategy was developed to make a difference.
Like any Op-Ed, this all seems rather simplified and finer points can be debated, but my point is this: mortality made a difference here. Human beings were being cut down by a disease that didn’t discriminate against race, age, religion, or ethnicity. And while the bigots kept equating it with the gay community, it didn’t discriminate on the basis of sexual preference either. Better tests were developed to detect, treat, and manage the disease. And people are closer to a cure today than they ever were. But still too many are lost to this unforgiving disease every year.
Sew, I was wondering, where is our quilt for metastatic breast cancer? We have awareness out the ears: mission accomplished. And for all the money raised for awareness, early detection, and refined treatment, men and women are dying of breast cancer. One estimate puts Komen for the Cure funding for MBC research at 2%. And “an analysis of cancer organizations from the Western world suggests that only about five percent of total cancer research funding goes toward metastatic disease of any cancer type.” What the hell is up with that?