23 rd WPATH Symposium Bangkok, Thailand 16 February 2014

1. The Classification ofSexual Disorders and Sexual Health: Recommendations for ICD-11Geoffrey M. Reed Ph.D and Eszter Kismödi JD. LLM 23rd WPATH Symposium Bangkok, Thailand 16 February 2014

2. World Health Organization Health classifications are core constitutional responsibility of WHO, ratified by treaty with 194 member countries

3. ICD-10 Revision • Mandated byWorld Health Assembly (Health Ministers of all WHO Member Countries) • ICD-10 completed in 1990; longest time without revision in history of ICD • Covers all areas of diseases, disorders, and injuries, and health conditions; diagnostic standard for medicine and health systems • Proposal development to be completed 2014; field testing 2014 – 2015 • WHA approval expected 2017

4. ICD Revision Orienting Principles • Highest goal is to help WHO member countries reduce disease burden • Focus on clinical utility: facilitate identification and treatment options • Multidisciplinary, global, multilingual development • Must be undertaken in collaborationwith stakeholders • Integrity of system depends on independence from pharmaceutical and other commercial influence

5. Classification System Used by Global Psychiatrists(4887 psychiatrists in 44 countries) Reed et al, World Psychiatry 2011;10:118-131

6. MSD and RHR • WHO Department of Mental Health and Substance Abuse Department (MSD)responsible for revision of ICD-10 Mental and Behavioural Disorders • Has collaborated with Department of Reproductive Health and Research (RHR) to develop recommendations for revision of ICD-10 categories related to sexual disorders, sexual functioning, and gender identity currently in Mental and Behavioural Disorders • Related to RHR’s broader perspective on sexual health and human rights • Working Group on Sexual Disorders and Sexual Health jointly appointed by both Departments • To report jointly to ICD-11 Advisory Groups for Mental Health and Genito-urinary and Reproductive Medicine

7. ICD Revision Political Structure for Sexual Disorders and Sexual Health World Health Assembly Revision Steering Group G-U & Rep Med Advisory Group (Chapter N) Internal Medicine Advisory Group (Chapter E) Mental Health Advisory Group (Chapters F, Z) ... ... Sexual Disorders and Sexual Health Working Group Endocrinology Working Group ... ... ... ... Chapters designated above refer to ICD-10 chapters that may be especially relevant, which is not to say that other chapters are not also relevant. The chapter designations above relate to primary but not exclusive areas of responsibility for the different Advisory Groups. Theseare not the only responsibilities of these groups, and other Advisory Groups are also involved in developing recommendations in these areas.

8. Development of ICD-11 Proposals • WGSDSH developed draft proposals and rationale documents • WHO appointed Peer Review group of 11 global experts, reviewed all proposals • Strong support from reviewers for major changes proposed; proposals revised in response to reviewer comments • Field study protocol development meeting held April 2013 with a different set of global experts to develop plans for country-level field testing of proposals, including additional discussion of sexual dysfunctions proposals with additional global experts • Solicitation of feedback from WPATH and WAS • Group discussions with sexual health experts in Mexico and South Africa, particularly focusing on sexual dysfunctions

9. Overview of ICD-11 Proposals

10. F64 – Gender Identity Disorders

11. First Question Should we have categories to represent transgender phenomena as a part of a classification of health conditions? • To identify vulnerable/at risk populations • To define obligations of WHO Member States to provide free or subsidized health care to their populations • To facilitate access to appropriate health care services • As a basis for guidelines for care and standards of practice • To facilitate research into more effective treatments ✔ ✔ ✔ ✔ ✔

12. Second Question How should category or categories related to transgender phenomena be conceptualized? ICD-10 Definition: • Transsexualism (ICD-10 F64.0) A desire to live and be accepted as a member of the opposite sex, usually accompanied by a sense of discomfort with, or inappropriateness of, one's anatomic sex and a wish to have hormonal treatment and surgery to make one's body as congruent as possible with the preferred sex.

13. F64: Preliminary Working Group Recommendations • Gender incongruence should be retained in ICD-11, but should be moved out of mental and behavioural disorders chapter • Two categories proposed: • Gender Incongruence of Adolescence and Adulthood • Gender Incongruence of Childhood

14. Draft Definition - GIAA Gender Incongruence of Adolescence and Adulthoodis characterized by a marked and persistent incongruence between an individual’s experienced gender and the assigned sex. The diagnosis cannot be assigned prior to the onset of puberty. Gender Incongruence of Adolescence and Adulthoodoften leads to a desire to ‘transition’, in order to live and be accepted as a person of the experienced gender. Establishing congruence may include hormonal treatment, surgery or other health care services to make the individual’s body align, as much as desired and to the extent possible, with the experienced gender.

15. Draft Diagnostic Guidelines – GIC I • Gender Incongruence of Childhoodis characterized by a marked incongruence between an individual’s experienced/expressed gender and the assigned sex in pre-pubertal children, manifested by all of the following: • A strong desire on the child’s part to be a different gender than the assigned gender, or insistence that he or she is a different gender • A strong dislike of his or her sexual anatomy or anticipated secondary sex characteristics and/or a strong desire for the primary and/or secondary sex characteristics that match the experienced gender • Make-believe or fantasy play, toys, games, or activities and playmates that are typical of the experienced rather than their assigned sex   • Must have persisted for about 2 years (i.e., cannot be assigned before 5) • Can only be assigned to children before puberty

16. Third Question Where should categories related to transgender phenomena be placed in the classification? • Mental and behavioural disorders? • Separate chapter? • Sexuality-related conditions and sexual health? • Factors influencing health status and contact with health services? • Endocrine disorders, genitourinary disorders or other ‘medical’ chapter?

17. Placement of Gender Incongruence • Within ICD revision political structure, receptivity to chapter on Sexual Health Conditions, which would include Gender Incongruence • Would also include Sexual Dysfunctions, to combine previously ‘organic’ and ‘nonorganic’ parts • Other categories still under discussion, but focus would be narrow • Name for chapter to be determined; e.g., Sexuality-Related Conditions and Dysfunctions • Secretariat is currently developing proposal for structure and content of chapter for provisional approval by RSG

18. F65 – Disorders of Sexual Preference (Paraphilias)

19. ICD-10 (1990) Disorders of Sexual Preference • Disorders of sexual preference • F65.0  Fetishism • F65.1  Fetishistic transvestism • F65.2  Exhibitionism • F65.3  Voyeurism • F65.4  Paedophilia • F65.5  Sadomasochism • F65.6  Multiple disorders of sexual preference • F65.8  Other disorders of sexual preference • F65.9  Disorder of sexual preference, unspecified

20. Working Group Recommendations I • Rename section to ParaphilicDisorders • Better represents content of section, which involves atypical sexual interests • ‘Disorders’ added to clarify that atypical sexual interests have to be pathological, i.e., result in action against a non-consenting individual or cause severe distress or significant risk of injury or death

21. Working Group Recommendations II • Delete diagnostic categories which consist of consensual or solitary sexual behaviour • F 65.0 Fetishism • F 65.1 Fetishistic Transvestism • F 65.5 Sadomasochism • Reasons: • No public health importance • No association with distress/functional impairment • Inclusion results in stigmatization of these behaviours and individuals practicing them, no discernible health benefit

22. F66 - Psychological and Behavioural Disorders Associated with Sexual Development and Orientation

23. F66: Current ICD-10 Categories (1990) • F66.0: Sexual maturation disorder • F66.1: Ego-dystonic sexual orientation • F66.2: Sexual relationship disorder • F66.8: Other psychosexual development disorders • F66.9: Psychosexual development disorder, unspecified • x0 Heterosexuality • x1 Homosexuality • x2 Bisexuality • x8 Other, including prepubertal • May also be assigned based on gender identity

24. F66: Rationale for Changes • Sexual maturation disorder: Distress surrounding developing a different than normative sexual orientation or gender identity is in itself normative and part of a differentiation process • Ego-dystonic homosexuality pathologizesa normal response to social stigmatization • Sexual relationship disorder is not a primary diagnosis but a consequence of relationship difficulties—it is overly broad and might include any issue that might affect a sexual relationship • Psychosexual development disorder: Lacks clinical utility, no scholarly research on the topic, now subsumed into other areas

25. F66: Working Group Recommendation Deletion of all F66 categories from ICD-11

26. Country-Based Field Testing:Sexual Disorders and Sexual Health • Field studies to be conducted with WHO support in Mexico, South Africa, Lebanon (Arab region), Brazil, India • Includes legal and policy analyses for recommendations for Gender Incongruence and Paraphilic Disorders • Additional field studies in high-income countries will be funded by the governments of those countries (Netherlands, UK, Germany, Sweden)

27. Field Studies on Gender Incongruence in Low- and Middle-Income Countries • Protocols under development, at country level to account for local policy, legal, social, cultural and health systems environment • One major study, led by Mexico with other countries participating, will involve in-depth interviews with trans* people to examine their experiences throughout their lives with gender identity and health services, to examine questions including: • Are trans* people’s experiences, in their own words, consistent with proposed diagnostic guidelines for Gender Incongruence of Adolescence and Adulthood and of Childhood • What are trans* people’s experiences of the impact of diagnosis? Helpful? Harmful? The same in adulthood as in childhood?

28. Field Studies for Mental Health, Sexual Health, and Primary Care Professionals • Global Clinical Practice Network for internet-based field studies To sign up, send e-mail to:gcpn@who.int • Clinic-Based Field Studies implemented through International Field Study Centers

29. Global Clinical Practice Network • Registry of global mental health and primary care professionals who have volunteered to participate in internet-based field studies for ICD-11 • Specific outreach to sexual health professionals and experts in transgender care, including through WPATH • Registrants provide information about training and professional background, practice activities and characteristics • Online registration available in 9 languages: Arabic, Chinese, English, French, German, Japanese, Portuguese, Russian, and Spanish • Participants are solicited to participate in studies no more than once per month, each requires no more than 30 minutes

30. 9,826 Current GCPN Registrants Globally(As of 1 February 2014) Americas North: 1,028 South & Central: 1,066 Europe 3,580 Western Pacific Asia: 2,926 Oceania: 258 Africa 167 Southeast Asia 457 Eastern Mediterranean 298

31. Global GPCN Registrants:Language of Registration

32. Global GPCN Registrants:Areas of Expertise

33. Implementation:Internet-Based Field Studies via GCPN • Participants are randomly sampled from GCPN registrants according to predetermined criteria based on study aims (e.g., must be currently seeing patients or supervising; child or adolescent experience) • All studies implemented in multiple languages • Solicit through email, track solicitation/participation • Studies use standardized diagnostic material (e.g., vignettes) in order to examine clinician decision making using proposed ICD-11 guidelines (e.g., as compared to ICD-10) • Comparison of experts (e.g., WPATH members) and non-experts to identify needs for training and practice improvement

34. Next Steps in Developing Categories, Descriptions and Guidelines • Proposals will be posted on ICD-11 beta platform for public review and comment • Comments will be reviewed, and modifications to proposals will be considered on that basis • Proposals will be field tested in 2014 – 2015, and will be modified based on results of field studies • Will continue to work with professional organizations as well as civil society organizations throughout process

35. Expected Impact • Better conceptualization of health conditions • Improved access to health services • Formulation of adequate laws, policies and standards of care • Reduced discrimination and stigma • Respect and protection of human rights of affected populations around the world