The Centers for Disease Control & Hypocrisy?

Last week, the Centers for Disease Control and Prevention released a highly contentuous new Vital Signs post on women, pregnancy, and alcohol. The main message was, essentially “don’t drink, ever, if you could possibly be using your uterus to store more than endometrial tissue, fibroids, or intrauterine devices.”

Oh, nice try CDC. I see they finally changed their graphic, a week after the uproar. Unfortunately for them, the internet is forever. This is the original, infuriating, graphic.

Oh, nice try CDC. I see they finally changed their graphic, a week after the uproar. Unfortunately for them, the internet is forever. This is the original, infuriating, graphic.

The impetus for the post appears to be the fact that roughly 52% of pregnancies in America are unplanned, and many women are pregnant for 4 to 6 weeks before they realize they’re pregnant; in that time, there’s the possibility of consuming alcohol.

Now, while studies don’t support the idea that mild drinking while pregnant will harm a fetus, the CDC (and many commentators) have latched onto this rather ludicrous THE RISK IS REAL DON’T TAKE ANY RISK approach for alcohol and pregnany, even going so far as to say it’s not worth risking a single IQ point.[note]Which makes me wonder: really? Given we know that socioeconomic status can affect significantly more than a solitary IQ point, would the recommendation be not having children if you’re below a certain SES? Hmm.[/note] Let’s say we accept this fearmongering approach, ignoring the lack of scientific support for the assertions, ignoring the victim-blaming nature of the infographic,[note]Someone abuse you while you drank? WELL WHAT DID YOU EXPECT? …yeah, the CDC went there.[/note] even ignoring the fact that the CDC conveniently forgot not only a man’s role in conception but the damage drinking can do to sperm and how that can affect fetal development.[note]Designer Chris Giganti kindly provided an updated graphic for men.[/note] Any risk is bad. Wrap pregnant women up in cotton, leave them in a padded room, and don’t let them do anything in case they happen to be in the process of 9.5-odd months of gestation.

Really don’t let them smoke, right? I mean, the risk is real! Smoking while pregnant can cause fetal death, low birth weight, preterm birth, affect the integrity and function of the placenta, is a risk factor for sudden infant death syndrome–oh my gosh! This list is just as bad, if not worse, than the risks of pregnancy and drinking for fetal alcohol spectrum disorders. Certainly with the release of new data on the risks of smoking and pregnancy–completely separate from the other known risks that smoking has on health, such as cancer, emphysema, chronic obstructive pulmonary disease, and death–the CDC has created an equally dire infographic and message saying that the risk is real, so quit smoking, why take the risk?

Yeah, nope.WaitWhatYoureKidding

We didn’t even get an infographic.

Instead, we got a very sensible, calm, factual question-and-answer style statement from the CDC explaining how smoking can harm a pregnancy and baby, the number of women who smoke while pregnant, benefits of quitting, effects of second-hand smoke, and further resouces, with various facts hyperlinked within the article itself.

It’s almost an ideal example of how to present facts about a risk in order to allow women to do an analysis of the situation based on their own agency and autonomy.

The CDC did everything right this week with their publicization of new information about smoking and pregnancy data and risks. As Sarah Richardson and Rene Almeling noted in the Boston Globe on Monday, “[w]omen are constantly bombarded with advice about what to eat and drink and how to behave during pregnancy,” and rather than add to the growing list of simplistic injunctions of an “omg if you do that you will kill the baby” variety, the CDC provided pregnant people with credible information about how to weigh reproductive risks.

And yet. And yet. In the light of last week’s NO RISK IS ACCEPTABLE message regarding women and pregnancy, it’s a stark difference in approach and messaging, and both underscores the hypocrisy of their “ABSTAIN OR ELSE” message regarding alcohol while further damaging their credibility as a trusted source of health information and regulation.


Richardson & Almeling on the CDC’s Pre-pregnancy & FASD “Guidelines”

Although it’s not the first thing you learn in ethics, the idea that you’re not going to be popular probably should be; it really does make life a lot easier. After all, a large part of the job of the ethicist is to be unpopular:

  • no, you can’t modify that flu virus so that it’s more contagious and more deadly than the lovechild of smallpox and the Spanish flu;
  • yes, it’s okay that this person wants to die;
  • no, you can’t just put fecael microbes in open brain wounds;
  • sorry, no, the science doesn’t support your claim;
  • who will the car hit;
  • you fired everyone NOW;
  • does the benefit justify risk; and so on.

You get the idea.

So I wasn’t terribly surprised to face the typical backlash when I noted just how unscientific, shaming, stigmatizing, and plain wrong the CDC’s recent “treat every woman[note]This is one of those areas where policy work and activism clash.The CDC frames their infographic in terms of “women,” but that’s certainly exclusionary and ignorant, given the fact that there are people who identify as men who do have uteruses, and could carry a pregnancy to term.[/note] as pre-pregnant”[note]A term that is offensive all in itself-women are more than just their ability to reproduce, an idea I go into more here.[/note] declaration that no person with a uterus should drink[note]Oh hey, a day later, the CDC has changed their graphic away from “any woman is at risk of violence from drinking” to include men. Nice try, CDC, but the internet is forever.[/note] unless 100% certain there’s no uterus-crasher in residence was–but it’s always nice when folks who have the respected PhD after their name (and are at Ivy League universities) join the chorus.

I recommend reading Richardson and Almeling’s op-ed in it’s entirety, but here are the choice pieces:

The CDC’s overly broad advisory damages its credibility as a source of clear, balanced advice about health risks. A risk may be “real,” but it may not be large or well substantiated. The CDC claims that “drinking any alcohol at any stage of pregnancy can cause a range of disabilities” for a woman’s child.” Yet a balanced review of the scientific evidence does not support such unequivocal claims. In fact, medical research suggests just the opposite. For example, the Danish National Birth Cohort Lifestyle During Pregnancy Study demonstrated that moderate drinking during pregnancy carries no long-term risks.

CDCBeClearFirst, the CDC needs to be clear that science on the risk of alcohol during pregnancy is far from settled. Any advice about reproduction should respect the autonomy and intelligence of women by presenting evidence in its full context. Public health officials should provide perspective about the size of the effects relative to other common risk factors. And they should be straightforward in describing the evidentiary base for health advisories.

The CDC can regain credibility in this realm by providing information to women and men that details the relative risks of various behaviors, as well as the state of scientific debate regarding the evidence supporting these assessments

The CDC’s mission is to identify and address clear and present dangers to the public health. As such, their credibility is literally a matter of life and death … Issuing guidelines with all the nuance of a sledgehammer only damages the public’s trust in federal health recommendations.

There are possible risks to drinking while pregnant, and women should be told what those risks are. But they’re not clear-cut, they’re not well-understood, and there’s no guarantee that abstaining from alcohol means a baby won’t be diagnosed with Fetal Alochol Spectrum Disorder; like many disorders, it’s a diagnosis of exclusion, and the criteria for diagnosis does not require confirmation of alcohol consumption during pregnancy (and in fact, at least one paper in Pediatrics suggests that if a woman has a child diagnosed with FASD and says she abstained during pregnancy, she must be lying about her drinking habit).

But there are a lot of risks to women while pregnant, and unless you’re advcating that women be padded in bubblewrap and never let outside of a padded room while pregnant (which in itself is probably a risk for something), then pregnancy, like life itself, is about balancing risks, benefits, and rewards. In order to make decisions in an accurate risk/benefit analysis, women first need to know what the science, not a sledgehammer of paternalistic unscientific fearmomgering.


One Key Question: Why “Would You Like to Become Pregnant in the Next Year” is a Bad Idea

Note: I wrote this last year when the One Key Question initiative in Oregon was being discussed, and pitched it to an appropriate publication. Unfortunately, the editor of that publication somewhat maliciously string me along and sat on it until it was no longer timely, and it’s been sitting in my sads folder since. With the recent CDC recommitment to the notion of pre-pregnancy, I decided this should at least be published on my blog.


A “simple, routine question” advocated by the Oregon Foundation for Reproductive Health is a great way to alienate and further disenfranchise women who are childfree.

A new piece on Slate discusses one of the most alienating ideas I’ve read in a while, and I wrote about the Hobby Lobby SCOTUS decision last week. In a nutshell, it argues that for effective and proactive reproductive health care needs, primary care physicians should ask a woman, at every visit, if she would like to become pregnant in the next year.

OKQOn the surface, the One Key Question Initiative, by the Oregon Foundation for Reproductive Health, may seem like a good idea. Many women have access to a primary care provider, but do not see OB-GYNs with any regularity. And of course, discussing reproductive and contraception options with a patient should be a basic of yearly, preventive, or wellness exams. The problem is not in discussing reproductive and contraception options, but instead in the framing of the question: would you like to become pregnant in the next year?

If I heard this from my doctor at every visit, I would change doctors. I expect my doctor to listen to me, and expect my doctor, after the first time I explain that I am childless by choice, to respect my decision. Asking me, repeatedly, if I would like to become pregnant in any time frame ignores my stated preference and decision. It falls into the cultural stereotype that women must want children, and that if they’re asked enough, if they get old enough, if they just meet the right man, they’ll change their minds.

Statistics indicate that I’m not alone in my desire to not have children. In fact, a third of women in the “acceptable childbearing age” bracket of 20-44 don’t have children,[note]US Census Bureau, Current Population Survey, June 2010. Table 2. Children Ever Born per 1,000 Women, Percent childless, and Women Who Had A child in the Last Year by Race, Origin, Nativity Status, Marital Status, and Age.[/note] and 20 percent of women won’t have children.[note]Livingston G. Childlessness Up Among All Women; Down Among Women with Advanced Degrees. Pew Research Center, Washington D.C.; June 25, 2010. http://www.pewsocialtrends.org[/note] Many of these women are involuntarily childless, either for medical reasons or circumstance, but a recent survey by DeVries Global suggests that as many as 36 percent of those who are childless are voluntarily childless.[note]DeVries Global. Shades of Otherhood: Marketing to Women Without Children. http://www.devriesglobal.com/downloads/shadesofotherhood.pdf[/note] As such, medical appointments should not be used as an opportunity to emphasize the stigma of the choice not to have children.

And make no mistake: there is still a significant stigma to choose to not have children. (One of my favorite paper titles ever is “Women without Children: A Contradiction in Terms?”) Women are judged for not having children; they are selfish, immature, refuse to grow up. The crazy cat lady has become a modern boogieman to scare women with. Headlines scream “The Trend of Not Having Children is Just Plain Selfish” (The National Post), women are assured it’ll be different when it’s your child, and assured they will regret their choice to remain child-free. Some of these beliefs are so deeply engrained into culture that women under the age of 30 have a difficult time finding doctors who will tie their tubes; a persistent, paternalistic attitude that doctors know better than women about their reproductive desires, which Slate itself covered in depth in 2012.[note]Lowder JB. “Sterilize Me, Please.” Slate, July 2012.[/note]

We’ve had this conversation before, when 2006 federal guidelines resulted in women of reproductive age being labeled “pre-pregnant” and treated as if they could fall pregnant at any moment. As bioethicist Rebecca Kukla noted, the idea of pre-pregnancy literally treats the non-pregnant body as on its way to pregnancy, with non-pregnancy seen as a fleeting and temporary state; it also reinterprets primary care for women into reproductive care.[note]Kukla R. “Preconception Care” and the Transformation of Women’s Health Care into Reproductive Medicine.” Presentation, Aston University, September 16 and 17, 2009. http://www.slideshare.net/ParentingCultureStudies/kukla[/note] The One Key Question Initiative brings us right back to the pre-pregnancy focus on what some people have dubbed “bikini medicine” – all attention on a woman’s reproductive organs first and foremost – creating a strong pro-natalist, coercive discourse about women’s healthcare, and shifting the focus to future outcomes (pregnancy and children) rather than the immediate patient at the appointment.

This is not to say that the ultimate goal of the One Key Question Initiative, to “ensure that more pregnancies are wanted, planned, and as healthy as possible,” is wrong. In fact, I firmly come down on the side of every child a wanted child, and as authors Julie F. Kay and Michele Stranger Hunter note, “about 85 percent of couples not using contraception will become pregnant in the next year, whether they intend to or not.” Primary care physicians should ask their female patients about childbearing and reproduction; the physician should know the patient preference and note that in her chart. In following visits, it’s more than acceptable to ask a woman who indicated she is not interested in bearing children if her contraceptive choice is working as desired, if there are any side effects, even if the woman wants to make any changes to that contraception. What isn’t okay is to make “would you like to become pregnant in the next year” a mandated question operating from a presumption that pregnancy is always a possibility on the horizon.


Hobby Lobby, Contraception, & the Supreme Court Ruling

The Roberts CourtAs expected, the last case ruled on before the Supreme Court of the United States adjourned until October was the Hobby Lobby/Conestoga case. For those unaware, this case is based on the Affordable Care Act’s contraception mandate, classifying contraceptives as preventive healthcare required under all insurance plans without a co-pay. Hobby Lobby and Conestoga Wood both objected to this, saying that covering some forms of birth control, like the IUD/IUS or Plan B, violated their religious beliefs by requiring them to fund abortive medications.We’re just going to sigh and ignore proper science right now, okay? Because otherwise we’re going to go nowhere but to the nearest hard surface. With our heads.

Unfortunately, SCOTUS ruled for Hobby Lobby/Conestoga, agreeing that the contraception mandate of the Affordable Care Act violates the Religious Freedom Restoration Act.

Now, before we get into the particulars,I am not a lawyer; let’s just get that out of the way up front. let’s go over the generals:

  • NO, SCOTUS did not overturn the contraception mandate.
  • NO, SCOTUS did not rule companies do not have to provide contraception to employees.

This is a limited ruling that does not affect publicly-held corporations, or privately or closely-held corporations that do not also have sincere religious beliefs.

So what did happen? SCOTUS ruled that closely-held corporations owned by people with sincere religious beliefs do not have to provide contraception coverage that violates those sincerely-held religious beliefs.

It’s important to note that this is a very, very narrow ruling. In the majority rule, Justice Alito noted that this particular ruling would not give companies room to discriminate; for example, a closely-held corporation owned by folks whose religion finds gay people an abomination would not be allowed to freely discriminate against gay folks. This ruling does not overturn federal protections for suspect or quasi-suspect classes.

…your eyes just glazed over, didn’t they? At the end of this post, you’ll find a treatise on legal vocabulary that might help the above make sense. For now, let me put it into English for you: highly religious families that own large businesses that employ lots of people but don’t share that stock love around are allowed to deny female employees certain types of contraception based on scientifically incorrect notions of what an abortion is, but that’s all they’re allowed to do.

In line with the Citizen’s United ruling that says corporations (are people too) have free speech, this ruling says that a small, small group of companies in the United States are protected under the RFRA, because they have a religion.

In the run-up to this decision, I’ve quipped (repeatedly) that I’ve never seen a corporation in a church before. SCOTUS would reply: when that company is held by five or fewer related family members with shared sincere religious beliefs, if you’ve gone to church with that family, you’ve seen that corporation in church.

In other words, there is no firewall between the religious beliefs of a family and the company that the family runs. (This also would apply to a small group of people who share a sincere religious belief but are not related.)

The reason for this is that the ACA mandate fails the Sherbert Test. Justice Kennedy said that he believed that the option for religiously-affiliated organizations, such as Catholic hospitals, to opt-out of contraception coverage meant that the government could not prove that requiring Hobby Lobby and Conestoga Wood (or other closely-held corporations with sincere religious beliefs) to include contraception coverage in the health policies they contribute to was the least restrictive or burdensome option. In the case of the religiously-affiliated non-profit organizations, women are able to receive contraceptive coverage through separate health policies provided by the federal government at no charge; Justice Kennedy clearly feels that this will be extended to women who work at closely-held corporations with sincere religious beliefs against some contraceptives.

Of course, as SCOTUSblog noted, there are a couple of issues here. The bigger one is whether or not the Department of Health and Human Services has the authority to extend the non-profit contraception exemption to closely-held corporations; I expect we’ll see the Obama Administration clarify this quickly (and most people seem to think that HHS has the authority to do this, including SCOTUS).

The smaller issue is an interesting one. There are some non-profit groups that have argued that even signing a certificate that says they object to providing contraception coverage for their female employees is a violation of the RFRA. Today’s Hobby Lobby/Conestoga ruling seems to imply that SCOTUS does not find the process of certifying beliefs an undue burden under RFRA, which could effectively shut down some 20-odd cases around the country.Emily Bazelon has more about these cases over at Slate.

So in sum, closely-held corporations can express religion and are protected under RFRA as long as it’s a sincerely-held religious belief, but the expression of their religious beliefs does not go so far as to allow discrimination; women employed by these companies should still be able to receive free contraceptive coverage from HHS, like women who work for religious non-profits do; and signing a piece of paper to indicate that your company’s sincerely held religious beliefs is probably not going to be viewed as an undue burden by SCOTUS.

It’s an interesting ruling, and one that I suspect isn’t going to make too many people happy, even while people will incorrectly make absurd statements on what the ruling means.

My personal take is a bit more esoteric: I actually think this Supreme Court is laying the groundwork for a robust federalized healthcare for everyone; clearly, they have established that it is appropriate for the government to offer and require insurance. This shifts another bit of the burden away from companies and towards the federal government, and I suspect that these tiny shifts are what it’s going to take to end up in a system of basic healthcare services provided by the government, with the option for additional insurance offered by companies as hiring incentives or purchased on the market for those interested. The question then becomes: is this intentional by Justice Alito and the other conservatives judges, or is this just happy coincidence as they strive to protect the rights of corporations to be people?

 


Let’s talk about vocabulary, everyone’s favourite subject! In specific, let’s get some definitions for SCOTUS vocabulary and legal language out and down on paper, so that we’re all on the same page.Remember, I am not a lawyer.

Closely-held corporation
A closely-held corporation is a private company owned, directly or indirectly, by a small group of people; the majority of the shares are held by five or fewer people.So sayeth the IRS. These are not publicly traded companies; if a shareholder wants to sell, it must be to an existing shareholder.

Religious Freedom Restoration Act
The RFRA is a 1993 law, signed by Bill Clinton, that prevents laws that substantially burden a person’s free exercise of religion. RFRA applies to the federal government, not state governments. As ACA is also a federal mandate, it is subject to scrutiny under RFRA. The law reinstates the Sherbert Test to see if an individual’s right to free expression of religion has been violated by the government, and mandates that any challenge involving the Free Exercise Clause of the First Amendment be subject to strict scrutiny.

Sherbert Test
This is the test used to determine whether or not the government has violated free expression of religion. For an individual, (and remember, corporations are people, too!), the court must determine:

  • whether the person has a claim involving a sincere religious belief, and
  • whether the government action is a substantial burden on the person’s ability to act on that belief.

If these two elements can be established, the government must then prove that it:

  • is acting in furtherance of a “compelling state interest,” and
  • it has pursued that interest in the manner least restrictive, or least burdensome, to religion.

Strict Scrutiny
This is the most stringent standard of judicial review available, and is generally invoked in situations that either involve suspect classifications or constitutional challenges.

Suspect and Quasi-Suspect Classification
A suspect classification is any group of people that meet criteria suggesting they have been or will be the subject of discrimination. This criteria includes a history of discrimination, hostility, prejudice, and stigma against the group in question, which can be based on stereotypes; immutable or highly visible traits; little to no political power; their distinguishing features do not render the group unable to meaningfully contribute to society.

The Supreme Court recognizes race, national origin, religion and alienage (not being citizen of the United States) as suspect classes. Gender, parentage (legitimacy), and sexual orientation are recognized as quasi-suspect classes.

Sincere religious beliefs
First, let’s be clear: a religious belief does not necessarily mean a belief in God(s). In Welsh v. United State, SCOTUS ruled that “the definition of “religion” is not dependent on a belief in a “Supreme Being.” A person’s beliefs may be deemed “religious beliefs” if those beliefs occupy in the life of that individual a place parallel to that of God in traditional religions.”All referenced court cases in this section are from the document “Selected Cases on Religious Discrimination” prepared by the Office of Legal Counsel for the US EEOC.

In Brown v. Pena, SCOTUS cited three things to determine whether or not a belief is a religious belief:

  1. whether the belief is based on a theory of “man’s nature or his place in the Universe;”
  2. which is not merely a personal preference but has an institutional quality about it; and
  3. which is sincere.

Unique moral preferences thus are not also religious beliefs. (So, for example, being a vegan without also being a member of a religious order whose institutional and accepted religious texts required a vegan diet, would not be a religious belief.)

And finally, how do you determine if said religious belief is sincere? There are multiple cases that discuss what a sincere belief isEEOC. v. Ilona of Hungary, Inc; EEOC v. Union Independiete De La Autoridad De Acueductos y Alcantarillados De Puerto Rico; Hussein v. Waldorf-Astoria; Bailey v. Associated Press; etc. and determined that elements of sincerity for the purpose of religious belief includes following the rules and restrictions of the religion in question, attendance to appropriate worship services, acknowledgment of religious holidays, association with other people of the same religion, and so on.

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.