The conference was, of course, wonderful. The presenters were clear (mostly) and I got some information made clear to me that I've been struggling with a bit over the last year. Some confusion was cleared up, and I learned about some exciting new things
I also got the general consensus about the miracle measles vaccine. Let's just say that the presenters, all highly qualified and active multiple myeloma specialists, were not as enthusiastic about it as one would hope.
Other than the fancy hotel (and their food lived up to the hype, certainly!) I had another 'first.' I finally met someone else who had multiple myeloma, personally. I've been exchanging posts with you guys, and have done research, but until today I'd never actually met anyone other than me who actually had this thing.
Now for the politically incorrect (or correct, you figure it out) aspect of this whole thing. I understand that, according to the statistics, more men than women have this disease, and men of African descent are more likely to have it than Caucasians. Given this, I really expected to see a far more ... uhmn ... inclusive ... audience there than actually showed up.
There were about as many men as I expected (couples, actually), and with most of the couples, the men were the patients and the women the caregivers. This wasn't universal, of course, and I certainly didn't take a poll or go around asking, but from what little I did glean, that seemed to be true.
What I did NOT see was representation from the black community. I noticed this lack and then actually counted. There were, perhaps, five African Americans at the conference, and one of them was one of the presenters from Canada, Joseph Mikhael. There were around 200 attendees at the conference, and it was free. Where were the folks who, according to the statistics, this disease hits the hardest?
...and don't look at me. My kids may be able to check the 'African American' square on the surveys if they want to, but I can't. Is there a lack of outreach? A lack of interest? A different cultural approach? Why weren't there more black men at that conference? According to 'Blood'," black men are twice as likely to get this as white men, so simple dumb math (and I'm only capable of 'simple dumb math) tells me that only having three or four black patients in conference such as this one is not a representation of the population of myeloma patients.
To put it mildly.
One of the presenters (and some of you are his patients, I think, so I'll leave out the name) really hit my "curmudgeon English teacher annoyed" button. He mentioned, in his description of some of the exciting new treatments coming through the trial process, that they may well be effective when 'the patient fails the medication" (insert name of agent in the place of 'medication').
Is that really proper medical jargon? Because if it is, I strenuously object. He said that over fifteen times, and I cringed each and every time he said it.
Look, I'm a teacher. when a student 'fails' something, it's HIS fault. He didn't study enough, he didn't do the homework, he wasn't paying attention ... something. I have never seen a student who did all his homework, who turned in his papers on time (no matter how badly written), read his assignments and paid attention in class, fail. He might get a D or a low C, but not an "F".
But every time Dr. B said 'when the patient fails the *insert agent here*," he was telling us that there is something wrong with the patient ... characterwise, as if it would have worked had the patient just taken the pills properly, or had the right attitude, or thought the wrong thoughts at the wrong time; something. The PATIENT failed.
When in reality, the patient isn't failing, the medication is. He could have put that in a number of different ways: "When the medication stopped working," for instance, or "when the medication stopped being as effective," or "when the medication failed the patient."
But NOT, for the love of heaven, 'the patient failed the medication!"
The information this doctor gave was invaluable, timely and sometimes exciting ... but I'm high risk, and will probably relapse sooner than standard risk folks, and when I do, gol durn it, it won't be because I did something wrong and 'failed' the medication, or the trial, or the experiment.
What a way to put the blame on the patient, for crying out loud!
-- OK, rant over, and I don't know what irritates me more; the fact that so few African Americans were there today, or this idea that it's the patient's fault that the medicine doesn't work --
Wait, I know what it is; it's because those two things niggled at an absolutely marvelous and information filled day.
