This right here is a story of longing, jealousy, and how maybe now is the time for me to give up on the Pollyanna routine. I’m sorry it’s rather long, because it would be good if toxicologists read all the way to the end. And I know they are busy people.
About two weeks ago the mate asked me if I had some particular piece of writing he could give to one of his faculty members. He’s now the interim dean of Michigan State University’s College of Human Medicine, and the faculty member in question, Dr. Mona Hanna-Attisha, was going through rough stuff. Along with others, she had figured out that, as USA Today put it in a recent story, “Flint’s water is poisoning its children with lead.”
Hanna-Attisha had gotten pushback from various characters in the governmental system for whom this finding was upsetting and/or inconvenient. What the mate was asking me for, specifically, was anything I had written about what I’d been through with prenatal dex—about how I had also been told by government people there was nothing amiss, how I persevered, how I survived.
If you don’t know the story of dex, here’s the quick version: Along with a bunch of other people, I tried—hard—to get the federal government to stop a situation wherein the esteemed pediatric endocrinologist Dr. Maria New was pushing pregnant women to accept a fetal development-altering drug intervention (prenatal dexamethasone, starting early in the first trimester) under the claim it “has been found safe for mother and child” when New was then turning right around and getting NIH money to use those same families retrospectively to see if it was safe for mother or child.
Not only did the feds not act, the FDA official doing most of the “investigation” turned out to have a major conflict of interest and be misrepresenting facts. But I didn’t find that out until years after the people who came after me to defend Dr. New nearly killed me.
For the docs out there, let me explain briefly that prenatal dex for this use—to try to prevent intersex in female offspring affected with congenital adrenal hyperplasia (CAH)—has never been tested in an animal model. It has never been tested in a placebo-controlled trial. A single clinical attempt in the 1980s led to its adoption around the world in families at risk for CAH. Because CAH is autosomal recessive and intersex only occurs in the females, 7/8 of the fetuses hit can’t benefit from this drug, given starting as early as 2 weeks after conception. Yet dex is chosen specifically because it is known to cross the placental barrier and change fetal development. The only place it has even been studied prospectively long-term with full informed consent is in Sweden, where (after we made a big stink in the U.S.) they shut down the study due to a stunning “severe adverse event” rate of 18%, with a mental retardation rate of 7%.
I agreed with my mate that it would be unhelpful to tell Dr. Hanna-Attisha to read my book when she was actively going through her own personal dex. Only in Shakespeare does someone rouse you with poetry when you’re in battle. But I had to remind him I have never really written anywhere what I’d gone through. I told him if I talked to her, all I would find myself doing was warning her about the depression and suicide risk, marital harm risk, etc., etc., that comes with whistleblowing. What she really needed, I said, was a dean and an institution that supported her. He said I was right.
When the news broke this week that Hanna-Attisha had been vindicated—when she became (rightly) a hero in the national press—we both felt so happy. Flint is not just any city to the mate; he’s been working there for years to try to have his college be useful to the people of that beleaguered city. Indeed, he has now done years of work there, and he speaks of it as his proudest work.
But he also noticed, over dinner Sunday night, that when he showed me the USA Today article about Hanna-Attisha’s success, I started to tear up.
“You’re jealous,” he said. “She won, in a few months. You never did.”
I took a big gulp from my wine glass and wondered aloud what it would take to have evidence-based justice work like that—like it is supposed to. I mean, seriously: A bunch of researchers rather quickly confirmed the finding of lead, and people jumped in to fix it, and the state spokesperson “who a week earlier had called her work ‘unfortunate’ in a time of ‘near hysteria” actually apologized to Hanna-Attisha.
So. About the toxicologists.
Earlier in the day, before I read the USA Today piece, I’d been hearing about a case presented that morning in San Francisco at the meeting of the North American Congress of Clinical Toxicology. This was a horrifying case in which a child had been accidentally poisoned by her own mother, on bad “medical” advice.
One of my former Northwestern medical students who also earned an M.A. in our Bioethics and Medical Humanities program is now a toxicology fellow in Chicago, and I ended up following her and others’ Twitter discussions of this case, and asking various tweeting toxicologists for more details, because the case so agitated so many of them. It’s not often you see doctors angrily pushing for something immediate on Twitter.
Here’s what I’ve pieced together: In San Francisco, Eike Blohm, a toxicology fellow at U Mass, presented the case of a child who was disabled by a congenital muscular problem, genetic myopathy. The child was six years old, went to school, had no disability in terms of cognitive function.
She was constipated a lot, and fed through a g-tube due to her congenital disability. Her mother read at Livestrong.comthat salt water can help with constipation and so the mother put salt water straight into the g-tube. Ingesting salt water is actually quite dangerous. If you try to drink a strong salt solution down your throat, your body appropriately rejects it; you vomit it up and usually save yourself. This child couldn’t vomit it up. She died. The authorities took away the mother’s other children while they investigated. The mother attempted suicide.
Toxicologists at the meeting who heard this case grew understandably distraught. They took to social media to push Livestrong.com—the “licensing” partner (read: content/money-mill) of the Livestrong Foundation—to take down the page. That actually happened; the page came down by the next day. A few of the toxicologists then thanked Livestrong.com.
I bristled reading the thanks. Yes, one page at this pseudo-medical site is down—but has there been any acknowledgement that a child died because of the bullshit “natural therapy” they pushed there for money? No. In fact, on Twitter, Livestrong.com questioned the case to some degree, saying they couldn’t find press stories on it.
Yesterday, Livestrong.com’s Twitter account, in conversation with me, said they were trying to hire physicians and nurses (for pay) to review their content. Good. But when I said they should take down all content that has not already been reviewed and approved by a medical professional, the conversation went dead.
So, what’s happened? So far as I can tell, the field of Toxicology has now moved on, feeling they did something good and won a battle. They did do something good and won a battle. But the rest of that site remains, and we won’t notice most of it unless someone else’s child or mother or father dies.
I know toxicology is a small and very busy field. I also know that, because it is a small and very brainy and somewhat uppity field—probably because they see more people die of dumb shit than perhaps any other field in medicine—they could actually use this “small” case as a wedge issue to shame sites that promote pseudo-medical advice. They could insist the rest of the site come down until it is reviewed for safety, and could specifically offer members of their group to be available to be paid reviewers. They could see it through, and they might actually, like Hanna-Attisha, really win.
In backchannel chatter, I found one toxicologist in this scene who is interested in trying to do this, but so far I can’t get Livestrong.com to answer my request to give me the name, phone number, and email address of a real person that that doctor can talk to.
And, to be honest, this seems like a stupid way to be going about this.
I mean, come on, Alice. With dex, before I ever came along, every major medical society that weighed in on the ongoing travesty of justice told Maria New “DO NOT DO THIS THIS WAY. IT IS TOO DANGEROUS AND THE PARENTS DON’T UNDERSTAND.” The American Academy of Pediatrics specifically invoked thalidomide and DES when they publicly chastised her in 2001. And what the fuck good did it do? What the fuck good did any of my three years of research, showing what she had pulled, really do? I heard this week from a colleague that women at risk for CAH offspring are chatting on Facebook about how they’re taking prenatal dex.
The push-me-pull-you in my gut, of bitterness and hopefulness, seems to have reached its full apex in the last couple of days. At least I hope this is the apex.
Part of me really wants to see this shit fixed, so that no other mother will ever go through what all of the mothers in this story have (injustice; unintended harm; isolation).
And part of me really wants to finally face the reality that people think social media uprisings change something more than levels of egotism and tribalism–and that that wrong belief leads them to do very, very little when they could do so much more if they picked up the damned phone.
(I sometimes think life is all about symptom management. Like any form of symptom management, it can be surprisingly toxic, even in small doses.)
I am lucky to have this mate who buys me another drink when I wonder if anything I ever do ever helps one fucking iota. And who bothers to think about how he could support a trouble-making faculty member trying to do the right thing. That said, I should probably hate him for how he keeps dragging me into believing we can make the systems better.
But you know what? Instead, I think I’ll try to use this blog more specifically to point out all the people I am meeting in my travels around the country who are working really hard to right some wrong, using evidence and good sense and the right doses of intellectual humility and personal stick-to-it-ness.
So, here’s to Dr. Mona Hanna-Attisha, who persisted; to Marc Edwards, the Virginia Tech researcher who swept in to help prove the lead in the water; to Brad Wurfel, the state spokesman who honest-to-God apologized; to the Mott Foundation, for ponying up many millions to help fix this fast in Flint; and to the toxicologists who got the deadly page taken down.
(But, please, pick up the damned phone.)
UPDATE: Livestrong.com’s Vice President for Editorial has now sent a phone number for me to convey to the physician, and I’ve forwarded it on. Hopefully this will start the process of removing from that site any material that is not reviewed for safety by a medical professional.