Amanda points out that, if you actually read the CDC report cited in that godawful WaPo article “Forever Pregnant” (which Jill discussed here), you can easily discern that the Post has an anti-female autonomy agenda (reflected also in stories such as the one about how they sorta heard that college guys are losing erections because college girls are too easy) and that the CDC’s report itself is fairly neutral (or as neutral as an agency that changes the lineup of a panel on STDs to placate the abstinence-only crowd can be) and the advice it gives sound.
Leaving aside the still-icky implications in the argument that the guidelines can actually be viewed as a fairly progressive effort to increase health care and access to contraception for poor and minority women by using the Trojan horse of treating women as the walking womb-ed, I’m still uncomfortable with the long-term implications of these guidelines, and how they’ll be used.
What I’m concerned about is that the guidelines will provide more cover for doctors who already do things like withhold effective treatments from their non-pregnant patients on the grounds that the treatments are harmful to a hypothetical fetus, even when the alternative, fetus-safe treatment does not adequately control the condition or has more severe side effects for the patient than the fetus-harming treatment. To wit:
But the words “federal guidelines” and “pre-pregnant” are not just sending up red flags, they’re sending out a fireworks show and a marching band.
I have been unable to obtain adequate medical care for my epilepsy because I am what they’d call pre-pregnant. As my neurologist puts it, I am a woman of child-bearing age. As such, they flat-out refuse to try me on any medicines other than the ones proven least likely to affect a fetus (read: the ones that are paying off my neurologist). Despite the fact that I have declared my belly a no-fetus zone.
My neurologist does not trust me to not get pregnant. My neurologist puts a potential fetus’s potential health over my health.
And now the government wants to officially sanction that.
Oh HELL no.
I should not have to get my fucking tubes tied in order to not have seizures and/or get medication that at least doesn’t have me dropping weight. (90.5 on the Craftsman’s bathroom scale; even taking into account that it’s a different scale from my doctor’s, it’s a significant enough difference that I have to look at it. I’m 89 on my scale right now. Which slips, but – still.) To get off a medication that’s caused what’s essentially a whole-body crash.
Pre-pregnant? Hell no. I am post-pregnant by 11 years. Pregnancy and me do not belong in the same sentence.
Screw that noise.
EDIT: When I first posted this, I was writing just for myself and my friendslist, so I didn’t put in a whole lot of background. Now this post has been linked all over LJ and in DailyKos. So. Background for people who have not been reading me since the dawn of time, quick-and-dirty version: I was diagnosed with epilepsy in October 2003. My first neurologist put me on Lamictal, which caused some pretty untenable side effects, including the first 2/3 of what became a catastrophic weight loss – 50 pounds in total, to a low of 85 pounds.
She tried me on Keppra, which was worse – then gave up for the sake of the potential fetus. I switched neurologists and medications, trying Topomax and Trileptal, the latter of which (plus Zonegran) I’m still on. The weight loss continued. Uncontrollably.
There are medications that have, as their side effects, weight gain. I have begged for these medications, but been refused. Direct quote from my neurologist: “You’re a newlywed. You’ll want a baby.” I’m a newlywed with an 11-year-old daughter and a body that’s falling apart. Trust me. I do not want a baby. But my stated desires are irrelevant – I cannot get prescribed a medication that will keep me from losing weight and may control my seizures better than the one I’m on now, due entirely to increased risk of birth defects.
Bolding mine, italics in original.
Let’s unpack that doctor’s attitude, shall we? We have here a patient who says that she’s done having children, but the doctor not only doesn’t trust her, but has the gall to tell her that because she’s a newlywed, she’ll want to provide her new husband with a baby, since the old one isn’t his.
She’s lost weight, way too much weight, so much it’s unhealthy and highly distressing, but the doctors won’t give her drugs that can treat her condition and cause weight gain. Probably because she’s a newlywed (and she might ruin her looks if she got fat!) and we need to please the husband, not the patient.
But more importantly, the doctors are choosing to place the potential health of a potential fetus (and to cover their asses in the event of a malpractice suit based on fetal defects) over the current health and treatment of the existing patient. Why they are unworried about a malpractice suit from a patient who’s being undertreated based solely on her childbearing potential probably has to do with the idea that prevailing medical standards are to undertreat such patients for that very reason. And, hey, once the CDC starts formally recommending such a course of action, there’s nothing to worry about!
As Bitch, Ph.D. shows us, the guidelines do specifically address the epilepsy drugs that are teratogens, and do NOT recommend that epileptic “pre-pregnant” women be treated as such.
Isotretinoins. Use of isotretinoins (e.g., Accutane®) in pregnancy to treat acne can result in miscarriage and birth defects. Effective pregnancy prevention should be implemented to avoid unintended pregnancies among women with childbearing potential who use this medication (65–67). . . .
Anti-epileptic drugs. Certain anti-epileptic drugs are known teratogens (e.g., valproic acid). Recommendations suggest that before conception, women who are on a regimen of these drugs and who are contemplating pregnancy should be prescribed a lower dosage of these drugs (74–78).
Shadesong’s problem is that her doctor is refusing to even give her the drugs which are teratogens, even though she has made it clear that she is NOT contemplating getting pregnant. The danger is that the doctor will seize on the “treat all women as pre-pregnant” part of the guidelines and ignore the “with epileptics, treat as pre-pregnant only if they’re contemplating pregnancy and work with them not to have unplanned pregnancies” part. The doctors’ attitudes certainly reflect cultural biases rather than sound medical practice already.