We are writing on behalf of the asexual, grey-a and demisexual community to urge you NOT to approve flibanserin, a repurposed antidepressant currently being considered as a treatment for distress due to low sexual desire.

Many legitimate concerns have been raised about the efficacy of this drug which must be taken daily, has significant and potentially dangerous side effects and drug interactions, and shows barely more effectiveness than a placebo. We share concerns about the drug’s safety, but will let those issues  be addressed by the hundreds of medical professionals, research scientists, and therapists already calling for this drug to be rejected.

Instead we would like to raise concern about the “disease” that this drug seeks to treat.  Hypoactive Sexual Desire Disorder (HSDD) is defined as low/absent desire for sexual activity accompanied by distress(1). It is this distress that is our core concern: where it comes from, how it is diagnosed, and how it can most appropriately be treated. 

During a recent hearing on flibanserin, the FDA was familiarized with this distress by flibanserin patients and other women diagnosed with HSDD who eloquently described(2) a deep sense of shame at their lack of sexuality and a fear of losing the loving relationships that sustained them.

This is a form of distress with which many in our community are intimately familiar. As individuals who experience little to no sexual attraction, many of us are made to feel broken by a society which expects everyone to experience a “normal” level of sexual desire and attraction. In a society that equates intimacy with sexuality, many of us face a deep fear of being alone, although this fear does not stop us from forming deeply intimate relationships which rely on other forms of connection.

As a sizable population(3) that has both experienced and overcome the distress that flibanserin aims to treat, we strongly encourage you to consider the following points:

• Distress caused by low sexual desire is too complex to medicate. Patients may exist for whom a psychoactive compound is a welcome and clinically appropriate treatment; however, they are vastly outnumbered by those for whom distress is a complex cocktail of shame over failing to meet social norms, fear about losing emotional intimacy, and other social factors. During the FDA public hearing, women diagnosed with HSDD who spoke described over and over their shame and guilt around no longer wanting to have sex with their husbands and the impact on their marriages and their husbands’ feelings. They spoke about feeling “broken.” Shame about failing to live up to an externally imposed standard is well outside of the bounds of appropriate pharmaceutical treatment. Medicine should not be used to impose social standards, nor to “correct” disparities between partners.

• Many therapeutic options exist. It is simply not true that there are no therapeutic options to help women with low/no desire for sexual contact and who are distressed about it. More generally, many woman-focused sexuality researchers/clinicians have long recommended focusing on the relational context of sexuality (e.g., Bellamy, Gott, & Hinchliff, 2013; Mitchell & Graham, 2008; Tiefer, Hall, & Tavris, 2002) to alleviate women’s distress (which may or may not change the level of sexual desire). The shame, fear and distress that women diagnosed with HSDD feel are best addressed through examination of that shame and open communication, possibly with the assistance of a skilled professional. Moreover, the recent International Consultation on Sexual Medicine, which establishes the guidelines for treatment for sex-related difficulties, recommended both cognitive behavioral therapy and mindfulness-based therapy based on evidence of their efficacy for women with low sexual desire. (Basson, Wierman, van Lankveld & Brotto, 2010). Approving a minimally effective “easy fix” could undermine these challenging but proven therapeutic approaches and lead to worse patient outcomes.

• The marketing of flibanserin to the general public will cause more distress than it mitigates. Distress about low sexual desire is closely tied to social norms. It is reasonable to expect that a campaign marketing flibanserin to the general public will encourage women to think of changes in sexual desire as a shameful disease(4) rather than as a natural part of the shifting experience of human intimacy. This framing of low interest in sexuality as a disease will manufacture distress where none existed before, while undermining public acceptance of those of us who experience no or low sexual attraction without distress.

• Marketing of flibanserin to clinicians will encourage misdiagnosis and mistreatment of people on the asexual spectrum. Many individuals struggling to come to terms with their identity seek clinical support, or are encouraged to do so by their families. Many more seek support for unrelated conditions. Since medical and mental health professionals are generally not educated about our community, it is not uncommon for our low sexual desire to be “treated” even when it is not the cause of our distress(5). The approval and subsequent marketing of flibanserin will exacerbate this issue, sending an amplified message to the medical community that variations in sexual desire are a condition to be treated rather than a form of natural diversity to be understood and respected.

While patients struggling with distress over low sexual desire deserve better treatment options, we believe that these options can come from proven non-pharmaceutical techniques such as mindfulness-based therapy and from therapies which seek to address the stigma associated with low sexual desire rather than aiming to explicitly change that level of desire. Shame, especially shame about failing to fit a social norm, does not warrant pharmaceutical treatment. Approving flibanserin to treat low sexual desire will hinder rather than help our ability to feel confident, connect intimately with our loved ones, and live lives free of shame.

Sincerely,

Members of the Asexual, Grey-A, and Demisexual Community and Our Allies

Endnotes:

1. Note that HSDD is a diagnosis from a previous edition of the American Psychiatric Association’s Diagnostic and Statistical Manual (i.e., the DSM-IV; APA, 2000). In the most recent revision of the DSM (i.e., the DSM-5; APA, 2013), HSDD was reconceptualised to create separate diagnostic categories for women and for men. Specifically for women, HSDD was combined with a disorder of sexual arousal to create Female Sexual Interest/Arousal Disorder (FSIAD).

2.  During the public hearing portion, the women diagnosed with HSDD who spoke at the FDA’s public hearing described over and over their shame and guilt around no longer wanting to have sex with their husbands, feeling “broken”. They (and their husbands) described how their husbands were hurt by their lack of desire to have sex and how this was negatively impacting their relationships-- to the point of “killing” their marriages (FDA Open Public Hearing, 2015).

3. Approximately 1% of participants from a British national probability study (N >18,000) of sexual practices indicated that they had never experienced sexual attraction to anyone, though might or might not have self-identified as “asexual” (Bogaert, 2004). More recently, the University of California conducted a Campus Climate Survey of students, faculty and staff across its many campuses (N > 100,000 ), and 4.6% of respondents self-identified as “asexual” in terms of sexual orientation. (Rankin & Associates Consulting, 2014).

4. It is not unheard of to encounter arguments like “HSDD may affect all women” at some point in their lives (Kingsberg, Simon & Goldstein, 2008, p.183, emphasis added), framing both women’s sexuality and low sexual desire as inherently pathological. Women tend to rely more on popular notions about “normal sexuality” based on this medical model than they rely on their everyday enjoyment of sex and their sexuality in order to make judgements about whether or not to classify themselves as sexually dysfunctional (Nicholson, & Burr, 2003). In fact, women’s rejection of sexist attitudes and traditional notions about women’s role in (hetero)sexuality is positively related to women’s sexual satisfaction (Schnic, Zucker, & Bay-Cheng, 2008).

5. Even when the low sexual desire is the source of our distress, several asexuality scholars (e.g., Brotto & Yule, 2011; Chasin, 2014) have argued that appropriate therapeutic intervention focuses on alleviating the distress without trying to change the level of sexual desire. Brotto & Yule in particular have cautioned against attempts to medicate asexual women’s low sexual desire, while acknowledging that in practice, people who might easily identify as asexual (but are unaware of that possibility) may be “impossible to distinguish” (2011, p. 623) from those meeting the diagnostic criteria for HSDD. Nevertheless, comparisons between asexual-identified people and [non-asexual-identified] people diagnosed with HSDD indicate that the groups are meaningfully different (Brotto, Yule, & Gorzalka, 2015).

References:

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th edn. text rev.). Washington, DC: Author.

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th edn.). Arlington, VA: American Psychiatric Publishing.

Basson, R., Wierman, M. E., van Lankveld, J., & Brotto, L. (2010). Summary of the recommendations on sexual dysfunctions in women. The Journal of Sexual Medicine, 7 (1-2), 314-326.

Bellamy, G., Gott, M., & Hinchliff, S. (2013). Women’s understandings of sexual problems: Findings from and in-depth interview study. Journal of Clinical Nursing, 22 (23/24), 3240–3248.

Bogaert, A. F. (2004). Asexuality: Prevalence and associated factors in a national probability sample. Journal of Sex Research, 41 (3), 279–287.

Brotto, L. A., & Yule, M. A. (2011). Physiological and subjective sexual arousal in self-identified asexual women. Archives of Sexual Behavior, 40 (4), 699–712.

Brotto, L. A., Yule, M. A., & Gorzalka, B. B. (2015). Asexuality: An extreme variant of Sexual Desire Disorder? The Journal of Sexual Medicine, 12 (3), 646-660. Text available here: http://brottolab.com/wp-content/uploads/2015/03/Brotto-Yule-Gorzalka-2015-Asexuality-An-extreme-variant-of-sexual-desire-disorder-.pdf

Chasin, C. D. (2014). Making sense in and of the asexual community: Navigating relationships and identities in a context of resistance. Journal of Community & Applied Social Psychology, 25 (2), 167-180.

Food and Drug Administration. (2015, June 4). Open Public Hearing, first afternoon session. Webcast & transcription available here: https://collaboration.fda.gov/p5ssammqatc/

Gelland, F. D., Flynn, K. E., & Alexander, G. C. (2015, July 6). Evaluation of flibanserin: Science and advocacy at the FDA. Journal of the American Medical Association. [online first]. doi: 10.1001/jama.2015.8405. Full text available here: http://jama.jamanetwork.com/article.aspx?articleid=2389384#jvp150113r4

Kingsberg, S. A., Simon, J. A., & Goldstein, I. (2008). The current outlook for testosterone in the management of hypoactive sexual desire disorder in postmenopausal women. Journal of Sexual Medicine, 5 (4), 182-193.

Mechcatie, E. (2015, June 4). FDA panel supports approval of flibanserin for hypoactive sexual desire disorder. PM 360 online. Full article available online here: http://www.pm360online.com/fda-panel-supports-approval-of-flibanserin-for-hypoactive-sexual-desire/

Mitchell, K., & Graham, C.A. (2008). Two challenges for the classification of sexual dysfunction. Journal of Sexual Medicine, 5 (7), 1552-1558.

Nicholson, P., & Burr, J. (2003). What is ‘normal’ about women’s (hetero)sexual desire and orgasm?” A report of an in-depth interview study. Social Science & Medicine, 57 (9),1735-1745.

Rankin & Associates Consulting. (2014, March). University of California System Campus Climate Project Final Report.  Full text available here: http://campusclimate.ucop.edu/_common/files/pdf-climate/ucsystem-full-report.pdf

Schick, V.R., Zucker, A.N., & Bay-Cheng, L.Y. (2008). Safer, better sex through feminism: The role of feminist ideology in women’s sexual well-being. Psychology of Women Quarterly, 32 (3), 225-232.

Tiefer, L., Hall, M., & Tavris, C. (2002). Beyond dysfunction: A new view of women’s sexual problems. ˆ, 28 (s), 225-232.