20 th world congress for sexual health glasgow, scotland, uk 13 june 2011

(Trans)Gender Identity in the ICD-11: Finding the Right Balance

Dr. Geoffrey M. Reed

Department of Mental Health and Substance Abuse

20th World Congress for Sexual HealthGlasgow, Scotland, UK

13 June 2011

Glasgow, UK | 13 June 20112 |

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


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


ICD-10 Revision

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

Covers all areas of diseases, disorders, and injuries, and health conditions; diagnostic standard for medicine

ICD revision process involves many international professional associations, scientific societies, disease-based groups; and advocacy organizations working on behalf of ICD and WHO


MSD Responsibilities

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 Approval of ICD-11 by World Health Assembly expected:

2014 – 2015


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


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


WHO ICD Constituencies

Member Countries – Required to report health statistics to WHO according to ICD– Use ICD categories for eligibility and payment of health

care, social, and disability benefits and services

Health Professionals– Multiple mental health professions– Most mental disorders treated in primary care, must be useful

for front-line service providers

Service Users/Consumers– ‘Nothing about us without us!’– Opportunities for substantive and continuing input


ICD Revision Orienting Principles

1. Highest goal is to help WHO member countries reduce disease burden of mental and behavioural disorders: relevance of ICD to public health

2. Focus on clinical utility: facilitate identification and treatment by global front-line health care providers, especially in low and middle-income countries

3. Multidisciplinary, global, multilingual development

4. Must be undertaken in collaboration with stakeholders

5. Integrity of system depends on independence from pharmaceutical and other commercial influence


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)


Lack of treatment leads to human rights abuses


Scarcity of Human Resources(N=157 to 183 countries)


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

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


Clinical Utility as Organizing Principle

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

WHO views current revision as major opportunity to improve utility of the system


Clinical Utility: WHO Working Model

Clinical utility of concept relates to:

Value in communicating (e.g., among practitioners, patients, families, administrators)

Implementation in clinical practice: Goodness of fit (accuracy), ease of use, time required (feasbility)

Usefulness in selecting interventions and for clinical management decisions

Improvement in clinical outcomes at individual level and health status at population level


ICD DSM

Produced by global health agency of UN

Produced by single national professional association

Free and open resource to advance public good

Provides large proportion of APA revenue

For: 1) countries; and 2) front-line service providers

For psychiatrists

Global, multidisciplinary, multilingual development

Dominated by US, Anglophone perspective

Approved by World Health Assembly

Approved by APA Board

Covers all health conditions Covers only mental disorders


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

burden2. To identify vulnerable/at risk populations3. To define obligations of WHO Member States to provide

free or subsidized health care to their populations4. To facilitate access to appropriate health care services5. As a basis for guidelines for care and standards of

practice


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

burden2. To identify vulnerable/at risk populations3. To define obligations of WHO Member States to provide

free or subsidized health care to their populations4. To facilitate access to appropriate health care services5. As a basis for guidelines for care and standards of

practice

✔✔✔

✔


Second Question

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?


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?


Working Group

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

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


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 [email protected] Will be referred to appropriate Working Group Should be received no later than December 31,

2011


Revision Proposals


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.


Revision Proposals


Required Content for Each ICD-11 Category

I. Category NameII. Relationship to ICD-10III. Primary ‘Parent’ CategoryIV. Secondary ‘Parent’

CategoryV. ‘Children’ or Constituent CategoriesVI. SynonymsVII. DefinitionVIII. Diagnostic Guidelines

IX. Functional PropertiesX. Temporal QualifiersXI. Severity QualifiersXII. Differential DiagnosisXIII. Differentiation from NormalityXIV. Developmental PresentationsXV. Course FeaturesXVI. Associated Features and ComorbiditiesXVII. Culture-Related FeaturesXVIII. Gender-Related FeaturesXIX. Assessment Issues


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


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

20 th world congress for sexual health glasgow, scotland, uk 13 june 2011

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