(Trans)Gender Identity in the ICD-11: Finding the Right Balance Dr. Geoffrey M. Reed Department of Mental Health and Substance Abuse

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(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 Health Glasgow,
Scotland, UK 13 June 2011
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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

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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

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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

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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

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Mental and Behavioural Disorders I

• Neurodevelopmental disorders
• Schizophrenia spectrum and other primary
  psychotic disorders
• Bipolar and related disorders
• Depressive disorders
• Anxiety and fear-related disorders
• Obsessive-compulsive and related disorders
• Disorders associated with severe stress or
  adversity
• Dissociative disorders
• Somatic distress disorders

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Mental and Behavioural Disorders II

• Feeding and eating disorders
• Elimination disorders
• Sleep disorders
• Sexual dysfunctions
• Disruptive behaviour and antisocial disorders
• Disorders due to substance use and other
  addictive disorders
• Neurocognitive disorders
• Personality disorders
• Paraphilias
• Other mental and behavioural disorders

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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

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ICD Revision Orienting Principles

• Highest goal is to help WHO member countries
  reduce disease burden of mental and behavioural
  disorders relevance of ICD to public health
• Focus on clinical utility facilitate
  identification and treatment by global front-line
  health care providers, especially in low and
  middle-income countries
• Multidisciplinary, global, multilingual
  development
• Must be undertaken in collaboration with
  stakeholders
• Integrity of system depends on independence from
  pharmaceutical and other commercial influence

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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)

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Lack of treatment leads to human rights abuses
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Scarcity of Human Resources(N157 to 183
countries)
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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

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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

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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

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First Question

• Should we have categories to represent
  transgender phenomena as a part of a
  classification of health conditions?
• Tracking epidemics/threats to public
  health/disease burden
• 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

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First Question

• Should we have categories to represent
  transgender phenomena as a part of a
  classification of health conditions?
• Tracking epidemics/threats to public
  health/disease burden
• 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

?
?
?
?
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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?

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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?

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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

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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_at_who.int
• Will be referred to appropriate Working Group
• Should be received no later than December 31,
  2011

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Revision Proposals
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Revision Proposals
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Revision Proposals
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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.

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Revision Proposals
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Revision Proposals
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Required Content for Each ICD-11 Category

• 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

• 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

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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

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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

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