It’s Sunday evening, and I’m a beer and about a hundred emails in the hole since dawn.

On Friday, as I was headed home from work on the train, my plan for the weekend was simply this: get a lot of sleep; hang out with the family; cook some food; and do a little quilting. I had just nailed another chapter for the new book, and am planning to start the next chapter on Monday. That’s tomorrow morning.

But by last night it had become clear that I suddenly needed to do battles on two different fronts.

There’s a film premiering at Sundance that, at least according to preliminary reports, has a lot errors with regard to the history of anthropological research with the Yanomamö' people. So now I’ve got to figure out how to correct the record on that, as what sounds like an utterly sensationalistic film takes off. It’s especially disappointing since the filmmaker appears to have talked to his participants, including most importantly Napoleon Chagnon, about being a devotee of science, while in fact having very low standards of evidence, if we can even call his current filmmaking that.

Meanwhile, my six friends who are back from the Miami conference on disorders of sex development (DSD) uniformly reported to me that Maria New, a senior pediatric endocrinologist out of Mt. Sinai in New York, is continuing to refuse to answer any questions about what the hell she is telling pregnant women to whom she is offering dexamethasone, a powerful steroid. “Dex” is being used to try to prevent “cosmetically offensive” (“masculinized”) genitalia in girls born with 21-hydroxylase deficiency, a form of congenital adrenal hyperplasia (CAH).

New appears to be doing this as an off-label experiment without any IRB oversight. She knows it is an experiment; she is the PI in a grant to look at what happens to the kids long-term. She knows there are safety issues, i.e., that there is a real risk of harm. She must also know there is little (if any) evidence that there is even any danger posed by the cosmetic issue of atypical genitals.

But is Dr. New doing an IRB protocoled clinical trial on the front end, with proper informed consent, while she shoots pregnant women chock full of dex? Doesn’t look like it. Heaven only knows what these poor women are being told about the risks, harms, and alleged benefits to themselves and their babies. All we know is it does not look like anyone is doing human subjects research oversight on this.

So I’ve finally decided to try to blow the whistle on that, since my clinical friends have tried and are getting nowhere. I was hoping I was fully retired from clinical intersex advocacy, but hell, I’ll come out of retirement if it means helping pregnant women know what they are being injected with, and what the “evidence” is of the necessity, safety, and efficacy of this treatment.

By the way, when Eric Vilain of UCLA asked New, in public, at the Miami conference, what she is telling pregnant women to whom she is offering this treatment, she refused to say, telling him this is “an impertinent question.”

New then apparently went on to make remarks about how she could assure the audience the dex treatment was at least not (gasp!) turning male fetuses gay.

I mean, honestly.

So I’ll work on that this week, and post here when I do more public stuff on it. I have a small army of people ready to help, and a larger army of allies I can yet call upon. People like New should learn not to fuck with my rolodex.

As I face another likely sleepless night, all I can say is...sheesh. One of these battlefronts would have been enough. I was up from two a.m. till 6 a.m. trying to figure out how best to tackle both of these evidentiary disasters. And trying to figure out what they are going to cost, and why Aron (my mate) puts up with funding all this, especially what it costs us in lost work I would otherwise be doing, work that might pay. I guess it is because he is just such a good guy. There can’t be any other explanation.

I did enjoy the conversation, over tea this morning, after I told Aron what I had been up to from two until six a.m.:

Me: I’ve got General MacArthur’s problem. I’m fighting on two separate fronts, and that ain’t good.

Aron: MacArthur didn’t battle on two fronts.

Me: Really? Who had Europe?

Aron: That was Eisenhower. MacArthur had the Pacific theatre.

Me: Oh. Right. I’m an historian, so I should probably know that.

Aron: It was Hitler who was trying to fight on two fronts.

Me: Are you comparing me to Hitler?

Aron: Favorably, I think.

Anyway, we talked about how to farm out some of this, how to delegate so that people help in ways that save me some time and effort. But then I spent the whole bloody day on the phone and on email working on getting the information and the weapons and the troops I need.

Well, not the whole bloody day. I did manage to make an excellent soup, while on the phone. And I washed and dried all the fabrics I need for the new quilt. But I think it is going to be a hell of a week, really.

I’ve told the friend who is keeping me to my book-writing schedule to show me no mercy on our agreed-upon deadlines, no matter what shows up in my life. If he can hold me to the deadlines with these things going on, he will have shown himself to be a true friend. I sure am lucky to have so many of those. Thanks, guys.

(Posted January 24, 2010)

Postscript, Tuesday, January 26, 2010, 3 p.m.:

I was trying to sneak in a nap to take a break from the frenzy of the last three days when Dr. New’s IRB head wrote to say she has IRB approval for something....but what? For her ongoing study of long-term risks, sure. But does she have IRB approval for what she’s doing with the pregnant women? I can’t figure it out. Hopefully the IRB head will tell me I’m wrong and he’ll assure me that these women are being told that 94% of the treated fetuses will get no benefit from this drug but all will be exposed to the neurocognitive risks (problems with working memory, verbal processing, and anxiety) including neurotoxicity.

Yes, people, that would mean cell death in babies’ brains. Brain cell death as an acceptable alternative to a big clit....? Seriously?

Dr. Walter Miller of UCSF Miller, who has been trying to raise red flags on this practice since 1998, has noted that prenatal dexamethasone treatment results in male and female children being exposed, in utero, to a level of glucocorticoids 60-100 times normal levels. Dr. Miller has concluded “this experimental treatment is not warranted and should not be pursued, even in prospective clinical trials.”

So if the Mount Sinai Medical Center IRB really has OK’ed this study, I’m still going to wonder (with Dr. Miller) what the heck they are thinking.

As for the Chagnon stuff, I have yet to see a copy of the film, so I don’t know what’s up with that. The reviews seem small in number and negative in response, so I suspect the film will pan. I’m taking notes for the book anyway, on how Chagnon and the historical truth have been treated throughout this.

(Next installment here.)

Battles on Two Fronts