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Bioethics – Page 7 – Life as an Extreme Sport
Life as an Extreme Sport

Contraception: The “acceptable” medical need vs “just” recreational baby prevention debate

Have you ever had that experience where you’re walking along and someone tries to hand you a religious tract, and you smile politely and say no thank you and try to keep going, but they reach out again and for whatever reason you stop, and then the following conversation happens?

“Can I tell you about Jesus?”
“Thanks, but I’m a Buddhist.”
“But have you heard the word of our lord and saviour?”
“Actually, I was raised Catholic, so—”
“Oh but that’s not a REAL Christian, let me tell you—”

And then you have to break whatever it was that made you stop, feel rude, and just walk away, because you realize that no matter what you say or do, they’re going to keep pressing because no answer but the one they want to hear is good enough?

FP_Contraceptives_225x200I often feel like that about birth control.

Almost inevitably, if the topic of birth control comes up, someone will come along to tell you that there are some really unacceptable risks to whatever birth control you’re talking about, but have you thought about these other, better birth control options? And of course, hopefully the person being this imposing is a friend (but let’s be honest, it generally isn’t) and you smile and say yes, thanks, and go back to your conversation except you’re interrupted again. “But have you tried…” and the well-meaning person goes through every birth control option they find acceptable.

In my case, since I’m utilizing a hormonal birth control (the Mirena IUS), whomever is acting critic will start asking about non-hormonal options. Sometimes, I’m nice and I’ll play along. “Yes, nasty contact dermatitis makes it not fun. Yes, with that, too. No, I don’t really trust options with failure rates that high. Yes, I’m aware of perfect vs real world use, but failure is not an option.”

Because, you see, I have that in my back pocket. Not one trump card, but two. Because even if people find my “yes, well, I was nearly hospitalized for blood loss before I had a Mirena inserted” an unacceptable medical excuse (and there are some who do), I have a final saving grace trump card, the one that says “it is medically advised that I never have children, due to my severe, degenerative nerve damage; having children could leave me permanently disabled and bedridden for life, if not worse.”

Funnily enough, that gets a pass from pretty much everyone except the very worst of the Republican politicians.

The thing is, I shouldn’t have to detail out my medical history in order to get a pass for deciding to use hormonal birth control. No one should have to detail out their medical history in order to show an “acceptable” medical need vs “just” recreational baby prevention; at most, a friend has the right to say “well, I’m concerned about the risks, are you familiar with them?” A “yes” response means drop the conversation, not run through every other birth control option out there. A “no” response means ask if more information is welcome, not immediately launch in to it.

The minute you get into dissecting out what is and is not a medical reason for birth control, you start wandering over into the territory that is labeling the choices and decisions women are making, and for hopefully understandable reasons, that makes little pro-choice, pro-birth control-as-part-of-basic-healthcare me nervous.

Are women making bad choices for themselves out there? Undoubtedly. There are shitty doctors. There are uninformed women. But taking the default position that every woman is uninformed is not the answer. No woman should have to lay out her entire medical history (or that of her partner!) in order to “get a pass” on contraceptive use.

When a woman tells you she’s utilizing birth control, don’t ask her if it’s medicinal or for contraception, don’t tell her she has better options, don’t immediately launch into the laundry list of why her choice is bad for her. We—those of us who are pro-women’s health, pro-choice, pro-birth control—are better than that.

Or, at least, we should be.

 


For a quick overview of contraception options and risks of pregnancy see this Planned Parenthood graphic.

Long-term Antipsychotics May Be a Medical Mistake

I’ve debated whether or not to post this since seeing Robert Whitaker’s lecture slides and heard about the results of his talk to NAMI from friends who were there, but ultimately decided that since this is an actual personal issue for many people, due to your own health or those of people you love, it’s worth making sure the information is available as far and wide as possible. Consent to medication needs to be informed, blah blah bioethics stuff.

Before the TLDR, the gist is this: evidence suggests that the best treatment for schizophrenia is not continual medication, and that

a significant percentage of those with schizophrenia who did not receive antipsychotics or took them for a very limited time had better long- term outcomes than those who took them on an ongoing basis.

And perhaps even more importantly, there’s significant evidence that the long-term use of antipsychotics creates a vulnerability to future psychotic episodes.

It’s important to note that Whitaker isn’t saying antipsychotics shouldn’t be taken, or aren’t needed by all people who are on them. But he’s gone over something like 60 years of data, a lot of which is from longitudinal studies spanning 20-30 years, and it looks like fully 50 – 75% of patients could make a complete functional recovery sans long-term antipsychotic use:

Medication compliant patients throughout 20 years: 17% had one period of recovery.

Those off antipsychotics by year two who then remained off throughout next 18 years: 87% had two or more sustained periods of recovery.

The data was so compelling by 1992 that Finland switched to a selective-use of antipsychotics that year… and now has the best long-term outcomes of anywhere in the world. Fully 79% of people – not just schizophrenics, but anyone who might be given a neuroleptic for psychiatric issues – are asymptomatic at five years, with 80% either in school or the workforce.

A lot of the issue appears to be what is known as “oppositional tolerance.” Anyone with chronic pain recognizes the concept if not the phrase: it’s what requires a gradual dose increase in medication to continually receive the same pain management. Essentially, the brain compensates for blocked dopamine or serotonin receptors in two ways. In the case of dopamine, postsynaptic neurons increase their receptors for dopamine as presynaptic neurons increase their firing rate. The opposite happens for serotonin: as the presynaptic neurons decrease their firing rate, the postsynaptic neurons decrease the density of receptors. In each case, the brain is trying to compensate for the effects of the drug being released into the system. Depending on the kind of drug being taken, we change the structure of the brain making it even more (or less) sensitive.

And, in fact, it’s the very recognition of concept that makes me wonder if Whitaker’s results can be extrapolated beyond neuroleptic use for management of mental health related illnesses and into chronic pain management; perhaps it’s better to treat acute instances of pain (“flares”) and then gradually decrease dosing until the patient is off medication than to continually dose the body with drugs “just in case.”Of course, I also have some admitted bias towards this idea, because it matches my experiences. We could easily call this revisionist history attempting to establish narrative control, too.

Anyhow, the very accessible and easy-to-read slides for Whitaker’s NAMI presentation can be found at this link, which includes detailed citations for those who’d like to read the journal literature. There’s also a good mother-of-patient perspective from Kathy Brandt at Mad In America. And if you really feel like having a sad today, you can read Carl Elliott’s comprehensive coverage of the death of Dan Markingson in the Seroquel studies, which should be required reading for anyone contemplating participation of themselves or a loved one in a drug study, or exposure to contemporary antipsychotics.

Rape Kit vs Abortion – Educating Jodie Laubenberg

One of the first things I saw when I got off the plane in Philadelphia Sunday night, after a trans-Pacific flight, was this statement from Rep. Jodie Laubenberg:

In the emergency room they have what’s called rape kits where a woman can get cleaned out. The woman had five months to make that decision, at this point we are looking at a baby that is very far along in its development.

This is Laubenberg’s justification for why Texas SB5, which seeks to limit abortion services even further in Texas, including banning abortion after 20 weeks (and currently being filibustered by the amazing Wendy Davis), does not have an exception for rape or incest victims.

I’ve seen a lot of statements that Laubenberg is clearly confused, and a lot of very pointed comments about her lack of knowledge on a subject she seeks to legislate – all of which are true. But what I haven’t seen is the very simple differentiation between a rape kit and an abortion. So here, let me make a tiny contribution to the growing body of evidence that Rep. Laubenberg is in no way qualified to sponsor bills on or otherwise discuss rape kits, abortions, or women’s health issues.

Continue reading

Shame, Stigma and Angelina Jolie’s Breasts

As reactions continue to race around the internet about Angelina Jolie’s double mastectomy and reconstructive surgery – the actual discussions, not the Monday-morning quarterbacking of her decision or the utterly vile “but what about her boobies” reaction from that particular subgroup of men who manage to amaze me by their continued ability to manage basic functions like breathing – I’ve been sent links. And more links. And then a few more. Most are relatively easy to dismiss because they’re quarterbacking a personal decision or they’re vile, but then you get the ones that tiptoe closer to decent – and they still have problems.

One that’s been flying around the internets today is the Maria Konnikova piece on Salon. I’m actually not terribly fond of this piece, or other pieces that hinge their complaint on the cost of testing and Jolie’s supposed privilege by virtue of her wealth. For one, let’s put the cost of testing squarely where it belongs: on the fact that Myriad owns the patent for the test (something that is being challenged in front of SCOTUS this June).

Secondly, almost no one remembers that the Affordable Care Act considers BRCA1 and BRCA2 tests to be part of preventive care, and that by January 2014, it must be covered for everyone, period. Yes, the pre-existing condition limitations and grandfathered insurance clause limitations means some women won’t have coverage for the test between now and January, but it’s not the doom and gloom exclusionary process that seemingly everyone wants to focus on when it comes to cost.

Finally, and most importantly, the notion of reducing stigma and shame by simply talking about these things – and in Jolie’s case, taking ownership of a body that has been extremely sexualized in media and popular culture – is incredibly important. In particular, even though we’ve moved society to a point where people talk about breasts and cancer together, it’s still in a “race for the cure” dialog, rather than in mastectomies and surgeries and things that shame. For example, within a day of Jolie going public about her mastectomies, Zoraida Sambolin (CNN) announced her own breast cancer and the mastectomies she’ll be having in June – and she credits Jolie for her decision to go public with her own health concerns.

This is dialog that’s important. It continues to de-stigmatize and remove shame from very basic aspects of women’s biology, and doing so is only a good thing: we need people to be able to talk openly and honestly about medical issues, illnesses, and diseases that affect women, not just men, and the sooner we can normalize aspects of the dialog that include frank discussions of biology and body parts in non-sexualized terms, the sooner we can embrace the idea that a woman – and her sexuality – is more than her breasts.

You Should Watch This SCOTUS Case, Just in Case Your Skin Sloughs Off

We’ve all been in the situation where we do something – crash a bike, step wrong on thawing ground, trip over a damnedbeloved pet – that leaves us with a painful injury that doesn’t go away. And when that happens, we go to the doctor to verify we’re not badly injured, and possibly pick up some anti-inflammatories. For most of us, when this happens, our skin won’t slough off, we won’t end up in a burn unit for treatment, and we won’t be in a medically induced coma for months.

Most of us aren’t Karen Bartlett, who suffered a rare side effect of NSAIDs when she took sulindac: toxic epidermal necrolysis. Aside from the extreme trauma of seeing your skin shed off you like wet tissue, Ms. Bartlett suffered permanent damage to her esophagus and lungs, and was left legally blind.

Rather understandably, Ms. Bartlett sued the manufacturer of sulindac, Mutual Pharmaceutical Company, the manufacturer of the generic formulation she took. She argued the drug design was defective and dangerous, and she won both the case and the appeal. Mutual Pharmaceutical Company, apparently attempting to live up to the reputation of pharmaceutical companies everywhere, has continued to appeal the decision against them, and this month the Supreme Court of the United States will hear the case.

At crux, Mutual Pharmaceutical Company is arguing that because they have no control over the design of the drug, they are not liable for any injuries sustained from taking it; they say this is the same as a recent SCOTUS ruling that does not allow patients to sue generic manufacturers for warning labels, as the company has no control over that information.

The problem I have with this argument is that we know that this is patently false. In October of 2012, the FDA removed approval of Budeprion XL 300, a generic version of Wellbutrin XL 300 manufactured by Impax and marketed by Teva. Why? Because their formulation was not therapeutically equivalent, and likely never had been.

The Impax/Teva Budeprion XL 300 was approved in December 2006; given that 80% of prescriptions filled in the United States are generic, it’s safe to say that quite a few generic prescriptions for Wellbutrin XL 300 were filled in that time. Almost immediately, the FDA began receiving reports that the generic form of the drug was not therapeutically equivalent; patients experienced reduced efficacy. Reduced efficacy is a polite way of saying that patients, many of whom were severely depressed, weren’t receiving any benefit from taking the drug, something I think we would all agree is a harm. And yet patients were taking this ineffective drug for six years, because the FDA was unable to quickly move to investigate the bioequivalence of Budeprion XL 300 to Wellbutri XL 300.

Clearly, generic manufacturers have the ability to change formulations, whether they should or it’s legal aside.

Generic manufacturers say that allowing juries to award damages to patients harmed by generics trumps the authority of the FDA, and the FDA is grudgingly siding with manufacturers on this. The problem here is that this argument presumes two things:

  1. that the FDA always has all information regarding a pharmaceutical, something that Vioxx alone clearly indicates isn’t true;If you want to read more about pharma behaving badly, hiding clinical trial results, etc, check out Carl Elliott’s White Coat Black Hat and Ben Goldacre’s Bad Pharma.
  2. that the FDA has the ability to move quickly to protect patients, something the Budeprion XL 300 example shows is not the case.

Lawsuits are one of the few ways it seems that patients have any ability to advocate for themselves – and, as Ms. Bartlett’s lawyer notes, force pharmaceutical companies to reveal information that they often take effort to squelch. Hopefully SCOTUS recognizes both the limitations of the FDA and the need to give patients a venue wherein they can hold manufacturers accountable for damages inflicted by the product they produce.