Asexuality, HSDD. amd DSM-5: More news

Recently, I've been blogging a fair amount about the DSM-5 and the work of the Paraphilias Subworkgroup, but I haven't spent much time on the Sexual Dysfunctions Subworkgroup--the group whose work originally got me interested in the DSM process.

The main reason for this is that there has simply been less news on that front. Well, now there is some news to report on. Previously, all but one of the reports of the Sexual Dysfunctions Subworkgroup had been published online--the ones for diagnoses for women in Archives of Sexual Behavior and the ones for men in the Journal of Sexual Medicine. The one that hadn't been published was the report on HSDD in men, which has now been published in the Journal of Sexual Medicine, along with commentary from a number of authors. The report on HSDD in men was written by Lori Brotto, who also wrote the report on HSDD in women.

Of particular interest to the asexual community is a section in Brotto's report titled "Is Loss of Sexual Desire in Men Equivalent to Asexuality?"

There has been increasing media and academic interest in asexuality, defined as the lifelong lack of sexual attraction [68,69]. Such individuals will describe limited, if any, sexual encounters, an inability to relate to others who pursue sexual activity, and little to no sexual desire [69–72]. The latter finding has raised concern that, perhaps, asexuality represents the polar low end of the
sexual desire continuum, and therefore, individuals identifying as asexual might better fit within the category of HSDD. There has been strong opposition to this suggestion from the asexuality community on the Asexuality Visibility and Education Network (AVEN; ttp://www.asexuality.org)—the largest online community of asexuals which is involved in education and advocacy efforts. In fact, an AVEN DSM Task Force prepared a 75-page document which included interviews on seven academics with expertise in human sexuality, which concluded that the DSM-5 should explicitly exclude asexual individuals from receiving a diagnosis of HSDD. Part of the rationale stems from the finding that asexuals are not distressed by their lack of sexual interest [72], unlike individuals with HSDD who are usually motivated to seek treatment to restore their low libido. Moreover, the AVEN community views asexuality as an identity, and feel that it is better placed within the different sexual orientations, and not as a sexual dysfunction [70]. Although data are extremely limited on the characteristics of asexual individuals, the available data do support this view of asexuality as not being a sexual dysfunction, and argue that a thorough assessment of the man presenting with low/no desire should be assessed to rule out asexuality.

I'm not entirely sure what "assessed to rule out asexuality" would mean. In practice, it could mean that people could be referred to the asexual community and asked whether they thing identifying as asexual would make more sense for them than being diagnosed with HSDD. The alternative would be that there is some kind of "real asexuality" and the clinician should try to identify whether the individual meets that. This latter possibility troubles me--and is my biggest reason for being wary of an exception clause for asexuals. (Everyone other than me in the "AVEN DSM Taskforce" other than me supported an exception clause for asexual. I withheld judgment on the matter, and I continue to withhold judgment on the matter.)

After I get a chance to digest these documents better, I'll be writing more about them.

Exploring the landscape of DSM-5 and the Paraphilias: Background

There has long been a certain amount of discontent with this group of diagnoses--most therapists simply ignore them, they're mostly used by groups who focus on the treatment of sex offenders, and many involved in the treatment of sex offenders ignore these diagnoses finding them useless.

In 2003, there was an issue of Archives of Sexual Behavior on the issue of pedophilia. There was an article by Richard Green arguing that it makes no sense to regard pedophilia as a mental disorder and paper on ethical issues; these were followed by a number of peer commentaries. Green's article can also be found here.

Also in 2003, the American Psychiatric Association had a symposium about the Sexual and Gender Diagnoses of the DSM, the papers from which resulted in this book which is a reprint of these articles appearing in Journal of Psychology and Human Sexuality.

In the introduction to that issue, the authors make a telling statement:

Toward that end, this volume was originally conceptualized as dialogic, with contributors from psychiatry and other mental health disciplines both criticizing and defending the existing DSM diagnoses. However, things did not work out as originally planned. Critics of the DSM abounded, but its defenders were more difficult to enlist. Furthermore, all of the criticism came from non-psychiatric contributors. Non-psychiatric criticism of the DSM is not in itself problematic; the DSM was always intended to represent the up-to-date collective wisdom of all mental health professionals. Consequently, mental health experts who are not psychiatrists have routinely participated in developing earlier editions of the DSM.

However, none of the non-psychiatric contributors who participated in developing the DSM-IV (and who might ostensibly be willing to defend the diagnostic criteria of sexual and gender identity disorders) were willing or able to contribute to this volume. We were, however,fortunate to have two eminent psychiatrists, Paul Fink, MD, and Robert L. Spitzer, MD, provide some brief commentaries on the papers dealing
with Gender Identity Disorder (GID),

One paper, DSM-IV-TR and the Paraphilias: An Argument for Removal, by Charles Moser and Peggy Kleinplatz, as the title suggests, argued that the paraphilias should be removed from the DSM. (A another version is also available.)

The paraphilias are something of an odd collection of sexual interest in activities that are illegal and ones that are legal and essentially harmless. However, arguing for the removal of the paraphilias entail arguing for the removal of pedophilia--an extremely hot button issue. Because of this, they made a rather explicit statement about the matter:

We wish to clarify that our suggestion to remove the paraphilias, which includes pedophilia, from the DSM does not mean that sexual acts with children are not crimes. We would argue that the removal of pedophilia from the DSM would focus attention on the criminal aspect of these acts, and not allow the perpetrators to claim mental illness as a defense or use it to mitigate responsibility for their crimes. Individuals convicted of these crimes should be punished as provided by the laws in the jurisdiction in which the crime occurred. Any interpretation of our work as supporting adult-child sexual interactions is misguided and wrong.

Nevertheless, highly selectively chosen parts of their presentation were leaked to the media and to organiations like NARTH. Fear-mongering and outright deception resulted in alarm that the APA might "normalize" pedophilia. In response to this, APA issues a press-release regarding pedophilia. It opens:

Pedophilia, included in the American Psychiatric Association Diagnostic and
Statistical Manual of Mental Disorders (DSM) since 1968, continues to be classified as a mental disorder. The DSM is the standard classification of mental disorders used by mental health professionals and provides clear, objective descriptions of mental illnesses, based upon scientific research. Pedophilia is categorized in the DSM-IV-TR as one of several paraphilic mental disorders. The essential features of a Paraphilia are recurrent, intense sexually arousing fantasies, sexual urges, or behaviors that generally involve nonhuman subjects, children, or other nonconsenting adults, or the suffering or humiliation of oneself or one’s partner.

Notably absent from this is the fact that a) it's widely recognized that disorder is a value-laden concept and is not entirely scientific, and b) the scientific foundation for this group of diagnoses is much weaker than for many in the DSM. The press release included a statement from Darrel Regier saying:

“there are no plans or processes set up that would lead to the removal of the Paraphilias from their consideration as legitimate mental disorders.

In fact, in the 2003 symposium, Robert Spitzer, who has a tendency to speak candidly at times, suggested what may be the biggest reason for keeping the paraphilias in the DSM:

What are the consequences if we go the route that Drs. Moser and Kleinplatz suggest and remove the paraphilias from the DSM? First of all, it is not going to happen because it would be a public relations disaster for psychiatry. There was already a little disaster when the initial DSM-IV put in the “clinical significance” criterion that had the effect of requiring distress or impairment before pedophilia could be diagnosed. The APA wisely corrected that in DSM-IV-TR.

(He is referring to the fact that DSM-IV said that pedophilia was only a mental disorder if the person was distressed or impaired because of it. DSM-IV-TR changed that to add that it is also a disorder if the person "has acted on it.")

Moser and Kleinplatz's response was rather bluntly titled: Politics versus Science: An Addendum and Response to Drs. Spitzer and Fink

DSM-5 Controversy and the Internet

Hanna Decker, a historian of psychiatry, recently wrote a very informative and ballanced account of the controvercy surrounding DSM-5, especially with criticsms repetedly made by Robert Spitzer (chair of the DSM-III Task Force) and Allen Frances (chair of the DSM-IV Task Force): A MOMENT OF CRISIS IN THE HISTORY OF AMERICAN PSYCHIATRY

In her observations at the end of her history, she makes a remark that I certainly found relevant to my blogging efforts:

The role of the Internet in popularizing and spreading the arguments and charges made by Robert Spitzer and Allen Frances cannot be overstated. Without the Internet, the ease and rapidity of their frequent attacks and challenges would have been impossible. It is worth repeating the trite observation that the Internet is the printing press of the 21st century, well adapted to fomenting upheavals.

Allen Frances, has written a rather interesting response in which he reflects on this point.

This leads to an interesting, if unanswerable, corrolary question. Has the internet debate on balance helped or hurt DSM5- or has it had no meaningful effect at all? It is, of course, too early to tell how this very small piece of history will play out. The attention drawn to the DSM5 process has led to some improvements in its methods and a more realistic timetable. But on the larger substantive issues, it is my view that DSM5, despite all the debate, remains stubbornly lost in the wilderness.

Later, he furthers his query about the role of the internet, and his decision to make his criticsms in a public forum, aiming for external pressure, rather than trying to privately influence decisions:

But the long term pluses and minuses of internet vs private influence remain unclear. The internet certainly played a large role in stimulating debate-but the resulting debate has not so far accomplished anything of lasting value. It is an open question whether things might have gone better if there were no public debate and I instead quietly proffered advice to the DSM5 leadership, the Work Group members, and the APA Trustees? In all likelihood, the private approach would not have had any influence whatever (I think all were pretty resistant and, on the down side, DSM 5 might then have gone ahead with the premature field trial). But we will never know.

It certianly gives a blogger room for reflection.

And then, as a good blogger, I left a comment:

While reading Professor Decker's history, I had this considerable urge to go blog about it and your article (which I had not yet read.) After finishing that history, and while reading your article, I couldn't help but note the irony of this impulse. So, being a good blogger, I decided to leave a comment about it.

And now I think I'll go do my blogging :-)

More on the petition about Flibanserin

Yesterday, I made a post encouraging people to sign a petition urging the FDA not to approve the drug Flibanserin, developed by Boehringer Ingelheim. I made this post after reading about the petition on Shades of Gray and reading up on it (I had already read a number of things on the matter and posted parts of a few of them here with specifically mentioning this drug.)

Feeling that this is a very important matter--and a matter that is very much relavant to the asexual community--I made a post on AVEN and another version on Apositive. I also copied a version of my blog onto the Asexuality community on LJ.

The responses have been very mixed, and I wanted to respond to a lot of the negative responses and (what I see as) the misunderstandings behind them.

I'll summarize the main arguments against my position:

1) Even though asexuals aren't distressed about not being interested in sex, many people are distressed about it. It's not our place to prevent them from getting help.

2) If the drug works, the FDA should approve it. If it doesn't, they shouldn't. Why should potentially bad consequences (especially bad consequences for a small minority like asexuals) play any role?

3) No one is going to force us to take it, so why should we care?

4) Even if this is a bad idea, why would the FDA even care about this petition?

I'll address these in reverse order.

Even if this is a bad idea, why would the FDA even care about this petition?

On the New View Campaign Website they explain the purpose of the petition:

Please go to Change.org and look for the Low Sexual Desire petition and sign it and circulate it to others. ASAP, please. We will take these petitions to the June 18 Flibanserin hearing.

It seems that the purpose of the petition is to bolster support for their position, giving them more credibility in making their arguments. I don't know how much this petition will help, but I doubt it will hurt.

No one is going to force us to take it, so why should we care?
This objection can take either one of two flavors, and, for those making it, I'm not sure which was intended. One version is a "live and let live" approach. If it's not hurting me and it helps others, great. Why should I prevent that? This version essentially boils down to (1) above (addressed below.) The other flavor this can take is, "It's not my problem, so why should I care?" If that's your position, I probably can't do much to change it.

If it works, the FDA should approve it. If it doesn't, they shouldn't. Why should potentially bad consequences (especially bad consequences for a small minority like asexuals) play any role?

I think that the social effects are a legitimate concern. Essentially, the question should be "Will approving this do more good than harm?" For the possible harm of approving it, cost, side-effects, and social consequences are all legitimate areas of concern.

Neuroskeptic copies a chart about side effects, summarizing it as follows:

100 mg flibanserin nightly caused 14% of patients to drop out due to side effects, vs 7% in the placebo group - so an extra 7% decided it wasn't worth it. It caused dizziness, nausea, fatigue, somnolence - and bizarrely, also insomnia. Notably, 50mg daily was much worse than 100 mg nightly, which suggests that taking this at night, rather than in the morning, is a good idea. But given what it is meant to treat, you'd want to do that anyway, right?

Further troubling facts about this drug have to do with how it's marketed. If you look at the site Sex, Brain, Body (with hard to read text at the bottom saying, "This content was developed with the support of a sponsorship from Boehringer Ingelheim Pharmaceuticals, Inc."), it's clear that they're painting a picture of this "disorder" that fits with what the drug supposedly does. As Dr. Petra explains:

In the past five years we’ve seen some interesting (and worrying) developments in the area of drug development for HSDD. For several years the general view was women’s lack of desire was linked to hormonal deficits (specifically Testosterone) with hormonal patches designed to ‘treat’ the problem. These performed poorly at trial and were not approved by the FDA (although did get approval for use in Europe). A systematic review of all trial data indicated the Intrinsa patch was not effective at dealing with low desire in women.

The focus has now shifted to seeing women’s lack of desire as a neurological problem, with Flibanserin working in a similar way to an antidepressant (indeed it was developed as an antidepressant but was not fit for purpose). The naming of the promotional site as ‘Sex. Brain. Body’ particularly shifts attention towards female desire problems as being psychological, complex and emotional.

Intrinsa was only designed for women who had low desire following surgical menopause, whereas Flibanserin can be taken by any woman diagnosed with low sexual desire. Already we have seen practitioners associated with Boehringer Ingelheim working on Flibanserin also suggesting the contraceptive pill reduces desire which is one market which may benefit from having a pill to boost arousal.

Furthermore, the troubling social consequences of this would not be limited to the asexual community (not remotely). It is largely sex-therapists troubled by the medicaliaztion of sexuality--setting up a universal sexual norm, and ignoring relational, social, and political factors--who are leading the work against this. For an interesting perspective on a related issue, I would suggest an article by Allen Frances: Should Practical Consequences Influence DSM5 Decisions? Yes, Of Course.

Even though asexuals aren't distressed about not being interested in sex, many people are distressed about it. It's not our place to prevent them from getting help.
I am most certainly not opposed to people distressed about lack of interested in sex from getting help. In my history of Hypoactive Sexual Desire Disorder and the Asexual Community (which provides useful historical background for those interested) I explained the position members of the AVEN DSM Taskforce (as we called ourselves) found ourselves in:

[One] big difficulty is that a lot of people to see therapists complaining of low sexual desire. In the US, being diagnosed with something is an important part of getting insurance reimbursement, so simply advocating that the diagnosis be deleted did not seem a viable option. We knew we wanted a more asexual-friendly way of diagnosing low sexual desire, but we weren’t even sure what that would be.

The objection to this drug is largely that it barely does anything positive, but the negatives are considerable.

As before, I feel that this is something that we, in the asexual community, should be very concerned about, which is why I strongly encourage people to sign the petition. I would also encourage other bloggers to read up on it and blog about it.

Petition

In a post earlier today, Elizabeth encouraged readers to sign a petition to

This is a petition to advocate against FDA approval for Flibanserin, a so-called ‘female Viagra’ recently produced by the drug company Boehringer Ingelheim. It is extremely important that the FDA does not approve Flibanserin,

This petition is written by the New View Campagin.

On their website, they say:

Please go to Change.org and look for the Low Sexual Desire petition and sign it and circulate it to others. ASAP, please. We will take these petitions to the June 18 Flibanserin hearing.

I've been following the news surrounding this drug for a while, and there is much to be troubled about. Neuroskeptic has a good post about it One pill makes your libido larger:

Flibanserin was originally developed as an antidepressant, but in clinical trials against depression it reportedly failed to perform better than placebo. The standard for getting approved as an antidepressant is low, so this is quite an achievement.

After an a review of the relevant scientific information, Neuroskeptic suggests how it works:

It's obvious from the side effects data that this drug is a sedative - it makes you tired and sleepy. The animal data confirm this. It's much more likely to put you to sleep than it is to make you enjoy sex in any given month. Off the top of my head, I suspect its sedative properties are a result of its 5HT2A antagonism.

Any sedative can increase sexual desire, as anyone who has ever been to a bar will know. So whether this drug actually has an aphrodisiac effect, as opposed to just being a sleeping pill, is anyone's guess. To find out, you'd need to compare it to a sleeping pill, say, Valium. Or a couple of glasses of wine. Until someone does that, we don't know if this drug is destined to be the next big thing or a big disappointment.

Cory Silverberg reports on the effect size:

Women taking the drug also reported more "sexually satisfying events" than women taking the placebo. The increase in satisfying events was statistically significant, but it's worth considering the actual numbers. According to the aforementioned corporate press release women taking the drug had 1.2 more satisfying sexual events over 24 weeks compared to women taking a placebo who had 0.9 more satisfying events. That's 1.2 more sexual encounters they enjoyed over a six month period.

It doesn't look like this drug is going to do much, but it seems that everyone watching knows has strong reason to believe that, if approved by the FDA, there will be massive "educational campaigns" about how oh-so-distressing a problem lack of interest in and how oh-so-widespread it is. But you begin to think that the purpose is to create distress about lack of interest in sex.

A confession: There are a number of reasons that I am opposed to Hypoactive Sexual Desire Disorder (or Sexual Interest/Arousal Disorder.) But my biggest concern is that if a drug for HSDD is ever approved, there will be massive attempts to create distress surrounding low sexual desire. Conceptually, these diagnoses make no senses, and I feel that the asexual community is in a unique position to bring to the fore these problems and to create more reasoned and more nuanced discourse surrounding low/absent sexual desire.