Preventing Precaution
Editorial Note: This post by Harriet Rosenberg aims at getting some debate going about medication and birth defects. We will run a survey early next week on this issue Right-to-Know (R2K).
A recent post on RxISK, The dark is for mushrooms not for women features responses on Mumsnet to the issue of prescribing SSRIs during pregnancy.
Johanna Ryan comments at the end of the “mushrooms and women post” tell us some interesting things about the commercial ties on this site and their reach in UK society. And she also invites us to have a look at what the Women’s Health Movement in the example of Our Bodies Ourselves has to say about SSRIs and pregnancy.
What is striking about that Mumsnet thread is that feminist language is used in most of the posts to decry a message of precaution and informed consent. In other words, many of the posters seem to be arguing that information about the potential harms of antidepressants is alarmist and condescending and are associated with an anti-feminist patriarchal position.
Special attention is devoted to Dr. Stephen Pilling, an expert adviser to the National Institute of Health and Care Excellence, who on a BBC TV program stated that he was concerned about infant heart defects associated with the use of SSRIs during pregnancy. The whole show can be accessed through a couple of links given below – a BBC link which has an excerpt and a written description and also YouTube (for non UK readers).
Shooting the messenger
According to the show, advice about anti-depressants during pregnancy is about to be updated in light of concerns about the overuse of antidepressants and anti-anxiety drugs in women who are pregnant or who may become pregnant.
What I see is a pretty modest statement saying that women are discouraged from smoking and drinking during pregnancy but may not have sufficient information about potential antidepressant drug harms, especially in relation to infant heart defects. Pilling goes on to state that for women with mild to moderate depression the risks are not worth taking. There are visuals of an infant who was born with this problem, his mum who states that she was not told about the potential problems associated with the anti-anxiety drug she was taking and a voiceover comment from the drug’s manufacturer stating that depression is a serious problem. The industry position is that the risks of not taking the medication may be worse for the mother and the child.
So… how would one expect a self-defined feminist parenting website to respond to the issue of drugs associated with increased risks of infant heart defects?
Probably not with an all out “shoot-the-messenger” attack.
Use of the term ‘pre-pregnancy’
Something very curious unfolds in the way the issue is framed and the narratives that emerge after the first posting. The key story seems to be that Pilling is a sexist villain as defined by his use of patronizing language and his failure to understand how debilitating depression is in women; his intent (soon to become enshrined in new UK guidelines) to withhold needed medication from women; and his overall alarmist approach.
The majority of the comments posted excoriate Pilling for patronizing language. They are guided to this perspective by use of the term ‘pre-pregancy’ which is attributed to him and used to construct an image of a sexist male defining women only by their capacity to bear children.
NiceTabard, the “gobsmacked” poster who leads off the discussion puts the term “pre-pregnant” in quotation marks stating that Pilling “flagged up this thing that right wing US types like about females being in a ‘pre-pregnant’ state for their entire lives.” The deployment of quotation marks around ‘pre-pregnant’ is very interesting because it seems to imply that it is Pilling’s word choice and that he is just like those awful anti-women right-wing Americans.
NiceTabard in a later post states that she (I am making the assumption that the poster is female) has grappled with depression and anxiety and reinforces how “revolting” “the pre-pregnancy thing” is and how insensitive and controlling Pilling is.
Several posts weigh in with relish about how condescending, enraging and insulting he is too, until one poster finally points out that he never actually used the term ‘pre-pregnant’ (LurcioLovesFrankie.)
OK, I too fumed at this article because of the assumption that women’s mental health was trivial and unimportant compared to that of their hypothetical unborn baby, thus making us seem like incubators on legs (once more).
However, I didn’t see him use the phrase “pre-pregnant” anywhere.
This poster turns the discussion to the issue of informed consent.
And it seems to me a reasonable part of informed consent to tell a woman that certain drugs are contra-indicated in pregnancy. After all, you don’t have a statement in your medical notes saying “I intend to get pregnant in the next 6 months/ I hate the whole idea and never intend to get pregnant.” So the doctor has an obligation to consider the possibility and inform you that hypothetically, were you to get pregnant, there could be problems. I didn’t have a problem with the endocrinologist I saw telling me this about my thyroid medication many years back, and I don’t see a problem with a doctor discussing the issue with a woman presenting with depression – depression does not remove your capacity for informed consent, nor for the need for the information required in order to give or withhold that consent.
And she goes on to describe what her understanding of the decision-making process might be and what it might be for other women.
The important issue is to tell women that SSRIs change the risk of congenital heart defects from (if I read the article correctly) 2 in 100 to 4 in 100, and ask her how she feels about that increased risk balanced against the risks posed to her of not having her depression treated.
The issue for feminists is to make sure that the decision making process is not taken from the women and handed over to the doctor, in the form of a blanket ban on SSRIs for pre-menopausal women (and I’ve seen nothing in the press coverage to suggest that this was being proposed). After all, even if it increased the risk from 2 in 100 to 98 in 100, it’s perfectly acceptable for a woman to say “give me the SSRIs, if I become pregnant and the 20 week scan shows a heart defect, I will have an abortion secure in the knowledge that I made the right decision for my own mental health.” (By the way, I am not saying that this is the only decision, or the decision which is right in absolute terms – I have close friends who have chosen to carry a baby with a serious heart defect to term, and that decision was right for them; I just believe very strongly that only the woman who is pregnant can make the decision about her own pregnancy).
After that posting, things calm down a bit and Pilling (and NICE) are no longer the object of vilification but NiceTabard persists in her critique.
One poster describes her anguishing personal experience of giving birth to a child with a heart defect and, in sharp contrast to the mother in the BBC video, describes being heart-broken about her child’s fragile situation but entirely in accord with her medical advisors – that there was no connection to the SSRI she took during pregnancy. Another poster (BlessThisMess) states that she had one child with a “congenital heart defect while not on SSRIs and two heart-healthy babies while on SSRIs.” There are no posts that directly associate an impaired infant with a mum who took an SSRI and who is confident there was a connection.
As Johanna points out, both Ragusa and Edam raised issues about Big Pharma’s history of hyping SSRI benefits and not disclosing important information about harm – especially suicidality. Those posters were in favour of informed consent. But they were attacked by NiceTabard who persistently invoked the talking points against Pilling.
The last word goes to a link describing the devastation of “uncontrolled depression” which comes to the conclusion that ignorance (about side-effects) is bliss:
All of this is a very long winded way of saying: we dont know at the moment. But the fact that we don’t know, in the face of how commonly used these drugs are in pregnancy, could be seen as reassuring. (http://healthydoseofskepticism.blogspot.co.uk/2013/06/antidepressants-in-pregnancy.html?m=1)
Why is Dr. Pilling accused of fear-mongering?
What left me with my mouth hanging open was the scare-mongering approach which has been instigated by Professor Pilling, and his attitude towards women.
So first he compares taking anti-depressants to smoking or drinking. While I am aware that tobacco and alcohol can be used by people with mental health problems, I really didn’t get the feeling that he was making a point related to that. It came across as if taking anti-depressants was a lifestyle choice that women did for fun. The idea that women should be “discouraged” from taking SSRIs in pregnancy is bizarre.
It is hard to know why the disparaging term “bizarre” would be used in reference to a concept of precaution. Unless….we all agree with industry that there is little to worry about in terms of harms.
The underlying argument by NiceTabard seems to be that there are no downsides to taking these medications.
It is striking that she does not mention any concerns about efficacy, harms, addiction or withdrawal and neither do subsequent posts by her supporters – all issues which have been widely discussed in public forums in recent years.
There is no mention of talk therapy. Drug therapy is the totality of the therapeutic universe and it is constructed in these postings in a very benign light which leads to their question ‘Why does Pilling (or NICE the regulator) want to deprive women of access to these beneficial meds?’
So what, he is saying that women and girls should not have access to these drugs, which are highly effective, no matter whether they are single or in a couple, trying for a baby or not, or what form of contraception they are using? That’s a really concerning attitude and a dangerous road to go down.
And why is Pilling going down that dangerous road? ….. Because he is just like those controlling right-wing American anti-feminists who see women as nothing more than child-bearing vessels.
And what will be the consequences of following this fear-mongering, patriarchal advice? Additional harm to women.
The third was the huge risk he has taken saying this that lots of women on ADs are going to suddenly stop taking their medication. A woman with anxiety on SSRIs and in her first trimester might react very strongly to this. What with having anxiety and all. From this POV I find his comments irresponsible.
This latter point is very important and very complex.
Discontinuing an SSRI cold-turkey can lead to devastating outcomes and supervised, knowledgeable support in tapering is essential. But Pilling didn’t call for pregnant mums to immediately go off their meds, he seems only to have been guilty of asking that women be informed about potential harms.
So what is going on here?
Seems like the right moment to introduce the concept of appropriation of voice. In this context it describes manipulating a set of ideas and terms and creating a language of credibility to sell something – in this case using feminist words to advance an industry agenda.
This strategy turns out to be an old story and to be present right at the beginning of the founding of the Public Relations industry. In your ample spare time have a look at the PR campaign crafted by Edward Bernays, to sell cigarettes to women in 1929.
Bernays, who US Supreme Court Justice Felix Frankfurter later called the “professional poisoner of the public mind,” staged-managed a seemingly feminist demonstration at the 1929 Easter Parade in New York City. Led by a woman, who I think was his secretary, a group of young ladies, suddenly disrupted the genteel event by lighting up. It was illegal for women to smoke in public in many jurisdictions and Bernays, who had just landed a major account from the American Tobacco Company, found he could score big time by associating the hard-won gains of the women’s suffrage movement with the “right” to light up on the street. Those weren’t cigarettes – those were “torches of freedom!”
Mrs. Taylor-Scott Hardin parades down New York’s Fifth Avenue with her husband while smoking “torches of freedom”, a gesture of protest for absolute equality with men.
So maybe some of the discourse on Mumsnet is a “third party” narrative – a story that comes to an audience without an obvious connection to real source.
In the universe outside of Mumsnet there is a patient safety and Women’s Health Movement mobilization deeply concerned about the use of SSRIs during pregnancy and the relentless downplaying of the risks of these drugs. For example, have a look at “Taking SSRI Antidepressants During Pregnancy: Considerations and Risks” from the Canadian Women’s Health Network.
That document provides a lot of information about the risks associated with SSRI-exposure, the myth of brain chemical imbalance to market SSRIs, the hype around SSRI efficacy, and social factors and non-drug supports and therapies of dealing with depression. In addition, the CWHN documents grapples with the complexities of depression and the rush to medicalize and pharmaceuticalize.
Some women may not be affected by social isolation, economic factors, worry, have histories of violence or have chronic health problems and may still feel depressed for reasons that seem unexplainable. This points to how complex the human mind can be in relation to moods, emotions and daily functioning and how the hope that one pill may be the only or the best answer needs re-examining.
What about drugs during pregnancy?
For women’s health advocates the lessons learned from DES and thalidomide frame the current debate about SSRIs during pregnancy. The CWHN document makes these links and goes on to consider what we know so far about the in utero risks of SSRI exposure and how little we know about what might be emerging in terms of long-term cross-generational risks.
There is a lot more in that document including the importance of tapered withdrawal.
I urge readers to have a look at the whole thing and to keep it on hand. There are likely to be more and more controversializing publications in support of the industry position coming our way.
Finding out more
If you want to know more about the side effects of SSRIs, RxISK.org makes available to you for free over 4.5 million adverse event reports on all marketed drugs. You can explore any issue of interest.
Anyone wishing to see the risks linked to antidepresssants in pregnancy can take the following steps:
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Go to Drugs A-Z and type into the Search box (e.g. Paxil or paroxetine or Seroxat).
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From there you will be taken to a page where you can view reported side effects.
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In the side effect filter, put in the word Withdrawal – you can explore the age and sex of reports you will find.
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After doing this, type in Congenital to search for reported birth defects. Again you can explore each of the items that comes up in greater detail.
You can repeat the exercise for Prozac, Zoloft, Efexor, Celexa – Cipramil, Lexapro – Cipralex.
This title Preventing Precaution comes from a chapter in a 2002 book by Stauber and Rampton Trust Us, We’re Experts who analyze industry, PR companies and democracy. The chapter is about third party PR campaigns to discredit environmentalism and the environmental health movement.
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A few interesting little things I noticed but didn’t include in my original post.
The reason I found this particular discussion on Mumsnet was down to a Google search for the keywords ‘Panorama ssri’s pregnancy’.
No matter the combination of related keywords, RCPsych tend to dominate the first page with their response, either from their own website, or one of the many others that carries their statement or at least parts of their statement. Their SEO guys rock!
You don’t have to go off the first page of results to the see a pattern emerge. I see it as a two pronged approach.
1. A general ‘scientific/expert’ defence that is carried out by Lundbeck and RCPsych. To me this appears to be coordinated, with both citing evidence from ‘recent well designed trials’ (as opposed to all those old badly designed ones that Professor Piling is reviewing), and both also go on to reassure women that the risks are very low, uncertain even, before finishing with the very real risks to mum, baby and family if depression goes untreated. I have found this argument replicated dozens of times since the panorama program from both Lundbeck and RCPsych.
2. The womens rights approach. Mumsnet isn’t the only place this argument has been added. Still on page one of my search is the Daily Mail. Slightly different readership demographics and so a slightly different approach to the issue, with the rights of women with mental health problems to have children taking centre stage here.
http://www.dailymail.co.uk/health/article-2347383/Common-antidepressants-double-risk-child-born-heart-defect-taken-early-pregnancy-expert-warns.html
Best rated comment. 102 likes
actually zenia, some of us are unable to control our serotonin production in the body and need the medication to function…granted being depressed isnt a great thing to bring a baby into but are you seriously telling me because i was born with a disability i do not deserve to be a mother?? having a disabilty such as depression is something that is hard enough without being told your not good enough to be a parent i have been taking my medication through out my pregnancy but have been very closely monitored via the hospital and i have done everything i can to protect my daughter to ensure nothing will hurt her so grow up you silly silly women or child which ever you are. being a mother is any ones right not something you have to earn through perfect genes the next time you feel your perfect enough to comment on such matters firstly
“2nd best rated..100 likes
Yay something else for depressed mums to feel guilty about. I am of course being sarcastic.
Back on to mumsnet and some other things I noticed.
That particular thread wasn’t the only one on mumsnet talking about panorama, just the only one to appear in my google search. I didn’t spend much time looking but found a few others. One was in the antenatal section, as you would expect and had a mere 8 replies. http://www.mumsnet.com/Talk/antenatal_postnatal_depression/a1793102-panorama
Another was in the chat area
http://www.mumsnet.com/Talk/_chat/a1793060-Panorama-pregnancy-and-pills-anyone-watching
Here you can read an interesting set of posts by opensesame74. You can follow her through this discussion and then to the feminist one. One thing I noticed was how quick she got an appointment to see her cardiologist at GOSH. Sometime between her first post at Tue 02-Jul-13 18:51:13, and her post at Wed 03-Jul-13 14:08:05, she managed to secure an appointment, go see her cardiologist and log on again to share the good news. Impressive…the NHS should use this to show how good the health service is.
And yet another was an official post of a guest blogger added by Kate at Mumsnet HQ.
http://www.mumsnet.com/Talk/bloggers/a1794554-Guest-blog-pregnancy-and-antidepressants-a-womans-right-to-choose
This discussion…OP and responses, reads very like the one in the feminist section, covers all the same points, but the language is much softer and it carries the impression of being an officially sanctioned part of mumsnet, with a nice graphic, pale blue background and a long, well written guest post. Of course it is cross linked to the unofficial harsh version by NiceTabard.
Once again the star of this discussion is edam, who gives me some hope.
Its not hard to find evidence of a link between pharma marketing departments and websites like mumsnet. I obviously can’t prove anything without GCHQ or Prism type powers, but I can show how plausible it is.
If you want a peek at how pharma think about websites such as mumsnet, you can go to the pharma marketing society website…even mumsnet gets a mention!
http://www.pmsociety.org.uk/article/trust-reputation-and-social-media-in-healthcare-the-patients-view-report
Some interesting stuff here, there is even a list of software to help you identify, listen, engage and respond to influential people on these social networking platforms.
If you had the time to read all that, and have digested the different strategies pharma marketing use to engage with these social networking sites, then take that back with you to mumsnet and do an internal search for popular antidepressants to see how often they are discussed… you get some interesting results.
Citalopram – About 2,570 results (0.16 seconds)
Celexa – About 122 results (0.11 seconds)
Effexor – About 90 results (0.14 seconds)
Venlafaxine – About 377 results (0.29 seconds)
Seroxat – About 490 results (0.19 seconds)
paroxetine – About 206 results (0.14 seconds)
And there you have a plausible link with Lundbeck… Like I said, it proves nothing but it is interesting.