The U.S. Centers for Disease Control and Prevention have a public awareness campaign for the five most common types of gynecologic cancer. That’s admirable, and I support it. Last year, however, I complained that there was no mention of gyn sarcoma, the rare and aggressive cancer I have. (I've written about that, with an analogy to feminist politics.)
At a recent medical conference, when I mentioned sarcoma to the two women at the CDC table, they looked annoyed. In a patronizing tone, they told me that experts had decided what was important.
Later, a CDC researcher talked about how women with ovarian cancer had pushed for the awareness campaign. If women with sarcoma wanted inclusion, they needed to push just as hard, he said. I couldn’t get across the idea that it’s unfair to ask a group with much fewer numbers to be just as vocal and do just as much work.
Women with gyn sarcoma represent 1-2 percent of all gyn cancers (although we may be undercounted). In comparison, Jews make up a similar percentage in the U.S. population, while people who identify as American Indian are even less. At what percentage point do we judge people not worthy of our attention?
I talk about women with rare cancers, in regard to racial and religious minorities, not to suggest our discrimination is the same, but to address how society makes use of its resources. Should we focus on the majority to get the biggest bang for the buck? On the people most likely to do well? On those with the greatest needs? On those who have gotten the least help in the past?
We're lucky that we have experts to make these decisions for us.