
I was silenced on May 10. But I will be heard.
The director of the Advocacy and Policy Committee from the American Urological Association "fired" me May 10. It was polite and civilized.
I am not upset. I think he did the right thing from his POV to gag me. From my POV, I think of this as a gift.
I attended one meeting of one of the AUA's policy and advocacy working group last week. I was the only person in attendance who is a patient.
Everyone else there was a professional advocate representing groups such as the American Cancer Society and the Prostate Cancer Foundation, groups that do a poor job of speaking for men like me with low-risk prostate cancer or favorable intermediate-risk prostate cancer.
We make up 60% or of the 200,000+ US men a year who are diagnosed with prostate cancer. But we are treated like the minority and a lower-priority in research and in support.
I spoke up as a committee of one, not representing any organization, but feeling that I could speak candidly on behalf of millions of men like me.
I didn't identify as a journalist though I often write about prostate cancer. I wasn't there as a journalist.
But the fact I am one made some "advocates" nervous.
I did identify myself as an advocate.
I spoke for the 2,000 US men a year--five a day--who die from sepsis caused by transrectal (transfecal) biopsies. I also spoke for the men in the inner-city and the rural areas who get second-class urologic cancer treatment. I spoke for those men who have trouble staying on active surveillance because they have issues with anxiety and so undergo otherwise unnecessary surgery or radiation.
But apparently, the AUA staff and some members of its advocacy committee felt that the fact that I am a journalist would "chill" discussion and potentially could lead to the group being dissolved.
I told the director that I didn't realize I was "toxic." But such toxicity can overturn the garden party.
In fact, they are rewriting the bylaws to exclude committee members who speak as individuals. (There is only one other individual member--a past president of the AUA.)
The AUA policy director kind of beat around the bush and made it sound like the bylaws would be changed at some distant time. But I finally asked him, Are you firing me?
He reluctantly admitted that he was, preferring some word other than fire--"I'm not Donald Trump," he said.--and saying I was a "catalyst" who persuaded them to change their bylaws to exclude men like me.
So I am staying outside the tent and advocating the best that I can.