1. (Trans)Gender Identity in the ICD-11: Finding the Right Balance Dr. Geoffrey M. Reed Department of Mental Health and Substance Abuse 20 th World Congress for Sexual Health Glasgow, Scotland, UK 13 June 2011

2. Glasgow, UK | 13 June 2011 2 |2 | World Health Organization Specialized agency of UN established in 1948 Mission of WHO is the attainment by all peoples of the highest possible level of health From WHO's inception, health has explicitly included mental health Health classifications are core constitutional responsibility of WHO, ratified by treaty with 193 member countries Health classifications are core constitutional responsibility of WHO, ratified by treaty with 193 member countries

3. Glasgow, UK | 13 June 2011 3 |3 | Purposes of ICD WHO member countries agree to use ICD as standard for health information and reporting Basis for: Assessment and monitoring of mortality, morbidity, injuries, external causes, other health parameters Tracking epidemics and disease burden Identifying appropriate targets of health care resources Accountability

4. Glasgow, UK | 13 June 2011 4 |4 | ICD-10 Revision World Health Assembly Mandated by World Health Assembly (Health Ministers of all WHO Member Countries) ICD-10 completed in 1990; longest time without revision in history of ICD all Covers all areas of diseases, disorders, and injuries, and health conditions; diagnostic standard for medicine on behalf of ICD and WHO ICD revision process involves many international professional associations, scientific societies, disease- based groups; and advocacy organizations working on behalf of ICD and WHO

5. Glasgow, UK | 13 June 2011 5 |5 | MSD Responsibilities Department of Mental Health and Substance Abuse WHO Department of Mental Health and Substance Abuse responsible for revision of: –Mental and Behavioural Disorders –Diseases of the Nervous System Assisted by International Advisory Group in each area Participate in Revision Steering Group for overall ICD revision Technical work on Mental and Behavioural Disorders to be completed by end of 2013 2014 – 2015 Approval of ICD-11 by World Health Assembly expected: 2014 – 2015

6. Glasgow, UK | 13 June 2011 6 |6 | Mental and Behavioural Disorders – I 1.Neurodevelopmental disorders 2.Schizophrenia spectrum and other primary psychotic disorders 3.Bipolar and related disorders 4.Depressive disorders 5.Anxiety and fear-related disorders 6.Obsessive-compulsive and related disorders 7.Disorders associated with severe stress or adversity 8.Dissociative disorders 9.Somatic distress disorders

7. Glasgow, UK | 13 June 2011 7 |7 | Mental and Behavioural Disorders – II 10.Feeding and eating disorders 11.Elimination disorders 12.Sleep disorders 13.Sexual dysfunctions 14.Disruptive behaviour and antisocial disorders 15.Disorders due to substance use and other addictive disorders 16.Neurocognitive disorders 17.Personality disorders 18.Paraphilias 19.Other mental and behavioural disorders

8. Glasgow, UK | 13 June 2011 8 |8 | WHO ICD Constituencies Member Countries Member Countries –Required to report health statistics to WHO according to ICD eligibility and payment –Use ICD categories for eligibility and payment of health care, social, and disability benefits and services Health Professionals Health Professionals –Multiple mental health professions –Most mental disorders treated in primary care, must be useful for front-line service providers Service Users/Consumers Service Users/Consumers –‘Nothing about us without us!’ –Opportunities for substantive and continuing input

9. Glasgow, UK | 13 June 2011 9 |9 | ICD Revision Orienting Principles help WHO member countries reduce disease burden of mental and behavioural disorders 1.Highest goal is to help WHO member countries reduce disease burden of mental and behavioural disorders: relevance of ICD to public health clinical utility low and middle-income countries 2.Focus on clinical utility: facilitate identification and treatment by global front-line health care providers, especially in low and middle-income countries 3.Multidisciplinaryglobal, multilingual 3.Multidisciplinary, global, multilingual development collaboration 4.Must be undertaken in collaboration with stakeholders independence from pharmaceutical and other commercial influence 5.Integrity of system depends on independence from pharmaceutical and other commercial influence

10. Glasgow, UK | 13 June 2011 10 | The Treatment Gap Mental disorders contribute heavily to global disability and disease burden (WHO, 2008) Serious mental disorders receiving no treatment during past year: –Developed countries- 35.5 to 50.3% –Developing countries- 76.3 to 85.4% (World Mental Health Survey Group, JAMA, 2004) ‘Treatment gap’ is 32 to 78%, depending on disorder (Kohn, Saxena, Levav, Saraceno, Bull of WHO, 2004)

11. Glasgow, UK | 13 June 2011 11 | Lack of treatment leads to human rights abuses

12. Glasgow, UK | 13 June 2011 12 | Scarcity of Human Resources (N=157 to 183 countries)

13. Glasgow, UK | 13 June 2011 13 | Importance of Primary Care Worldwide, psychiatrists provide only a tiny proportion of mental health services When people with mental disorders do receive treatment, they are far more likely to receive it in primary care settings Mental health specialists alone cannot address treatment gap version of ICD-11 mental disorders classifications that is feasible and clinically useful for primary care settings A primary focus of the ICD revision is to provide a version of ICD-11 mental disorders classifications that is feasible and clinically useful for primary care settings

14. Glasgow, UK | 13 June 2011 14 | Clinical Utility as Organizing Principle and The ideal: scientific validity and clinical utility At present, neuroscience and genetics evidence does not support major changes for individual conditions or provide definitive support for specific structure utility WHO views current revision as major opportunity to improve utility of the system

15. Glasgow, UK | 13 June 2011 15 | Clinical Utility: WHO Working Model Clinical utility Clinical utility of concept relates to: communicating Value in communicating (e.g., among practitioners, patients, families, administrators) Implementation Implementation in clinical practice: Goodness of fit (accuracy), ease of use, time required (feasbility) selecting interventions management Usefulness in selecting interventions and for clinical management decisions clinical outcomes health status Improvement in clinical outcomes at individual level and health status at population level

16. Glasgow, UK | 13 June 2011 16 | First Question Should we have categories to represent transgender phenomena as a part of a classification of health conditions? 1.Tracking epidemics/threats to public health/disease burden 2.To identify vulnerable/at risk populations 3.To define obligations of WHO Member States to provide free or subsidized health care to their populations 4.To facilitate access to appropriate health care services 5.As a basis for guidelines for care and standards of practice

17. Glasgow, UK | 13 June 2011 17 | First Question Should we have categories to represent transgender phenomena as a part of a classification of health conditions? 1.Tracking epidemics/threats to public health/disease burden 2.To identify vulnerable/at risk populations 3.To define obligations of WHO Member States to provide free or subsidized health care to their populations 4.To facilitate access to appropriate health care services 5.As a basis for guidelines for care and standards of practice ✔ ✔ ✔ ✔

18. Glasgow, UK | 13 June 2011 18 | Second Question categories How should category or categories related to transgender phenomena be conceptualized? Transsexualism? (ICD-10 F64) 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. Gender identity disorder? Gender incongruence? Gender dysphoria? Effects of social oppression related to transgender identity? Same for adults and children?

19. Glasgow, UK | 13 June 2011 19 | Third Question Where should categories related to transgender phenomena be placed in the classification? Mental and behavioural disorders? Factors influencing health status and contact with health services? Signs and symptoms? Reproductive health? Sexual health? Other?

20. Glasgow, UK | 13 June 2011 20 | Working Group WHO Department of Mental Health and Substance Abuse WHO Department of Reproductive Health and Research Working Group on Sexual Disorders and Sexual Health The WHO Department of Mental Health and Substance Abuse and the WHO Department of Reproductive Health and Research will appoint a Working Group on Sexual Disorders and Sexual Health as part of the ICD revision process Advisory Group for Mental and Behavioural DisordersAdvisory Group for Reproductive Health Working Group will appoint jointly to the ICD Advisory Group for Mental and Behavioural Disorders and the Advisory Group for Reproductive Health Will also provide liaison to the Pediatric Advisory Group and other classification areas as appropriate Charge is to review evidence, submitted proposals, and develop draft of ICD-11 classification for consideration by Advisory Groups, public comment, and field testing

21. Glasgow, UK | 13 June 2011 21 | Revision Proposals Can be made by anyone Proposal form and guide available in English, Spanish, and French Proposals may be submitted in these languages Submit to reedg@who.int Will be referred to appropriate Working Group Should be received no later than December 31, 2011

22. Glasgow, UK | 13 June 2011 22 | Revision Proposals

23. Glasgow, UK | 13 June 2011 23 | Revision Proposals

24. Glasgow, UK | 13 June 2011 24 | Revision Proposals

25. Glasgow, UK | 13 June 2011 25 | Revision Proposals To reflect changes in the social understanding or view of diseases or disorders (e.g., removal of stigmatizing terms): This option applies in situations in which terms used in the ICD-10 are stigmatizing and may be considered demeaning by service users. Examples include the terms ‘mental retardation’ and ‘dementia’. It also may apply in situations where behavior that was previously considered inherently disordered is now more broadly considered to be normal variation in response and behavior, such as may apply to some of the categories included under Disorders of sexual preference (F65). It may also apply to proposals from various consumer groups to move particular conditions out of the chapter on Mental and Behavioural Disorders to another part of the ICD.

26. Glasgow, UK | 13 June 2011 26 | Revision Proposals

27. Glasgow, UK | 13 June 2011 27 | Revision Proposals

28. Glasgow, UK | 13 June 2011 28 | Required Content for Each ICD-11 Category I. Category Name II. Relationship to ICD-10 III. Primary ‘Parent’ Category IV. Secondary ‘Parent’ Category V. ‘Children’ or Constituent Categories VI. Synonyms VII. Definition VIII. Diagnostic Guidelines IX. Functional Properties X. Temporal Qualifiers XI.Severity Qualifiers XII. Differential Diagnosis XIII. Differentiation from Normality XIV.Developmental Presentations XV. Course Features XVI. Associated Features and Comorbidities XVII. Culture-Related Features XVIII.Gender-Related Features XIX. Assessment Issues

29. Glasgow, UK | 13 June 2011 29 | Conclusions – I Major advances in scientific understanding and changes in social attitudes over the past two decades regarding transgender issues Strong grass-roots and human rights movement Suggestions that ICD-10 has been misused WHO is not invested in maintaining a conceptualization of transgender-linked health conditions as mental disorders Most proposed alternative conceptualizations are still pathological, and none is entirely satisfactory

30. Glasgow, UK | 13 June 2011 30 | Conclusions – II We need a serious alternative proposal that: facilitates appropriate access to non-coerced health care Helps to protect human rights Is scientifically defensible and grounded in evidence, broadly defined Has a reasonable chance of being broadly acceptable to transgender people, to health care professionals, to researchers, and to Member States