Six key issues for intersex health

Issue 1: An end to non-consensual infant genital surgery

  1. OII opposes all cosmetic (non-essential) surgery on infants without their full and informed participation in decision-making and their agreement.
  2. There is no solid evidence that infants are advantaged by genital surgery and absolutely no long-term follow up research – long-term being more than ten years past puberty. To the contrary, recent research shows infants fare as well if not better without surgery.

Issue 2: Inflexible medical protocols and paradigms

  1. FOR example, individuals with XXY chromosomes are always regarded as male according to existing medical paradigms. This means XXY women or those who are neither male nor female have difficulty accessing medications and medical treatments appropriate to their sex and/or gender and that their intersex differences are only recognized so long as they conform to sex binary expectations. Individuals who do not conform to these expectations are relabeled as transsexual. [Author: Other examples for AIS, CAH, XO etc can be given.]
  2. FINDING papers on XXY women is nearly impossible because the world wide medical paradigm is that such individuals are always men. OII Australia has several XXY women as members and several XXY people who are neither male nor female, thus putting the lie to the paradigm. Professor Milton Diamond from the University of Hawai’i is aware of the problem.
  3. THERE are no treatment protocols for XXY women or AIS men.

Issue 3: The need for access to appropriate medication

  1. WHERE an individual presents in ways not expected by standard diagnostic paradigms access to sex and/or gender appropriate medication can be problematic. For example, XX CAH men are treated as women and cannot access testosterone or male appropriate drugs unless they are prepared to enter into transsexual standards of care.
  2. SOME intersex individuals who need androgen suppressors are forced to enlist on a potential sex offenders registry held by the Therapeutic Goods Administration (TGA) to qualify.
  3. WHERE protocols do exist and the individual falls within expectations for that protocol medications are not tailored to individual needs. The difficulties experienced by XXY men with testosterone both in terms of type and dosage are legion. Satisfactory doses of estrogen and testosterone combinations are usually arrived at by personal experimentation using off label prescription and privately sourced supplies.
  4. MANY of the most appropriate medications, particularly hormones, are not approved by the Australian Therapeutic Goods Administration (TGA) so are not available on the PBS (Pharmaceutical Benefits Scheme). The TGA has limited options for hormone treatments for intersex so that some individuals are forced to import drugs at their own expense and at some risk. TGA rules make it very difficult for intersex to get the best drugs for their needs and to take those drugs into and out of the country.

Issue 4: Lack of clinical research and evidence to support medical protocols and paradigms

  1. THERE is no substantive evidence for numbers of intersex of what constitutes outcomes, good or bad, for intersex in the long term and no agreement on what constitutes intersex or DSDs. Below are some articles that explore these issues. Anne Fausto-Sterling has produced the only comprehensive study on intersex numbers ever undertaken.

Issue 5: The need for client-centered evidence-based medicine for intersex

  1. INTERSEX people have physical differences of anatomy that are not completely understood by science. Intersex differences are extremely diverse and even within specific diagnosis groups there are significant differences between individuals.
  2. CAH for example has three main types. In the most common, 21 hydroxyls deficiency, there are ten main genetic differences from the fifty that are so far known. To complicate matters there is no XY CAH intersex reported in the literature. Many XX CAH have functioning female reproductive parts and give birth to children as female. Such individuals are considered to have a DSD by medicine however are not intersex either in their own minds or by anatomy.
  3. IF intersex is to be properly treated then individual circumstances such as sex and/or gender, reaction to medication, kinds of medications and surgeries needed have to be catered for.
  4. NARROW diagnostic paradigms based on limited research forcing people, despite their variations from expected standards, into unsuitable treatment programs are not acceptable.

Issue 6: The need to radically reassess the mental health needs of intersex

  1. INTERSEX who reject their birth assignment of male or female and who go on to live in either an opposite sex role or no sex role are currently deemed to be suffering from a mental illness. This places the responsibility for mistaken birth assignments with the victim and not the perpetrator. Successful legal cases have been brought in several countries against doctors on the basis of forced sexing of a child. David Reimer and Christiane V are two celebrated examples.
  2. THERE is a desperate need for medicine, psychiatrists and psychologists especially to stop seeing sex diversity such as intersex as being the cause of mental illness. This attitude harks back to the bad old days when variation in sexual orientation was seen as sickness.
  3. INTERSEX rejection of birth assignments, sexual orientation, gender (or genderless) presentation is not the issue and seldom has been. Intersex people suffer high rates of mental illness because of bigotry and marginalization. Intersex people struggle because they are seen as unacceptable unless the they comply with sex and gender binary roles and modify their bodies to conform to those roles. The strongest and most frequently repeated messages that intersex people are given in most cultures is that they are “unacceptable”, “freaks” or “weird.”
  4. THE primary message for intersex who have been surgically altered as infants, who have hormones and other “normalizing” treatments foisted on them as adolescents, who are told of their need to commit to normalizing treatment programs as adults, is that their bodies are sick, disordered, that they are in need of a cure. Poor mental health outcomes arise directly from this.

Update, October 2012

This article is over 3 years old. In the meantime, OII Australia has produced a number of papers around issues detailed here. Current key articles include: