Every Student. Every School. Submission on Draft NSW Personal Development, Health and Physical Education (PDHPE) K-10 Syllabus

There's no place for discrimination in the classroom-6

The NSW Education Standards Authority is currently undertaking public consultations about its draft Personal Development, Health and Physical Education (PDHPE) K-10 Syllabus.

Unfortunately, as you will see below in my submission, the Syllabus as drafted does not include LGBTI students, or content that is relevant to their needs.

Written submissions are due by Friday 5 May 2017. To find out more about the consultation process, and how you can write your own submission to support an inclusive PDHPE Syllabus, go here.

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Dominique Sidaros

Senior Curriculum Officer, PDHPE

NSW Education Standards Authority

GPO Box 5300

Sydney NSW 2001

dominique.sidaros@nesa.nsw.edu.au

 

Wednesday 3 May 2017

 

Dear Ms Sidaros

 

Submission on Draft NSW PDHPE K-10 Syllabus

 

Thank you for the opportunity to provide a submission about the draft NSW Personal Development, Health and Physical Education (PDHPE) K-10 Syllabus.

 

This is a personal submission, reflecting my interest in this issue as an advocate for the lesbian, gay, bisexual, transgender and intersex (LGBTI) community, and builds on my previous submissions to the Australian Curriculum, Assessment and Reporting Authority (ACARA) regarding its development of the national Health & Physical Education (HPE) curriculum.

 

This submission is guided by one principle above all else:

 

Any student, in any school, could be lesbian, gay, bisexual, transgender or intersex (LGBTI). Therefore, the Government has a responsibility to ensure that every student, in every school, is taught a Personal Development, Health and Physical Education (PDHPE) Syllabus that is inclusive of LGBTI students, and features content that is relevant to their needs.

 

This principle applies irrespective of the type of school involved, whether that is government, religious or otherwise independent. Importantly, the best interests of these LGBTI young people also take precedence over the views of other groups, including parents, parliamentarians, religious groups or the media.

 

Unfortunately, the NSW PDHPE K-10 Syllabus as drafted manifestly does not meet the needs of LGBTI students. It is not inclusive of students of diverse sexual orientations and/or gender identities, does not promote the acceptance of all students no matter who they are, and fails to provide adequate sexual health education for students who are not cisgender and/or heterosexual.

 

Disappointingly, some of the few occasions where the draft PDHPE Syllabus does attempt to include relevant content have been made optional (because it follows the words ‘for example’ or ‘eg’), with individual schools and teachers free to teach, or not teach, this content, depending on their own view and not the best interests of the students.

 

In this submission I will make a number of recommendations to improve the PDHPE K-10 Syllabus by making it explicitly inclusive of LGBTI students, and ensuring that they receive information that is relevant to their needs. These recommendations will be organised around the following five main areas:

 

  • Terminology
  • Inclusive Information
  • Acceptance & Anti-Bullying
  • Sexual Health Education
  • Life Skills

 

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Terminology

 

The problems with the draft PDHPE K-10 begin with the terminology that is used, and not used, throughout the document, and particularly in the Glossary on pages 132 to 139.

 

For example, the document includes the words lesbian, gay, bisexual, transgender, intersex and queer exactly once each – all in the same dot point on page 97, in Stage 5:

 

“analyse how societal norms, stereotypes and expectations influence the way young people think, behave and act in relation to their own and others’ health, safety and wellbeing eg Lesbian, Gay, Bisexual, Transgender, Intersex and Queer (LGBTIQ) health, people from culturally and linguistically diverse (CALD) backgrounds.”

 

That’s it. These terms are not used at any other point in the Syllabus, nor are they defined in the Glossary. Worse, because the words above immediately follow the use of ‘eg’, whether LGBTIQ health is mentioned in even this cursory way is entirely dependent on the views of the teacher and/or school involved.

 

As a result, the PDHPE Syllabus as drafted could mean many, if not the majority of, NSW students complete Year 10 having never heard the words lesbian, gay, bisexual, transgender or intersex used in this Syllabus, let alone having them appropriately explained. This omission is negligent, and will be detrimental to the health of future generations of young people.

 

Recommendation 1: The Glossary must include definitions of lesbian, gay, bisexual, transgender and intersex.

 

The almost complete absence of the words lesbian, gay, bisexual, transgender and intersex from the Syllabus is compounded by the, in most cases, exclusionary definitions provided for the terms that are included in the Glossary.

 

This includes the definition of ‘sexuality’ on page 138:

 

“A central aspect of being human throughout life. It is influenced by an interaction of biological, psychological, social, economic, political, cultural, ethical, legal, historical, religious and spiritual factors. It is experienced and expressed in thoughts, feelings, desires, beliefs, attitudes, values, behaviours, practices, roles and relationships.”

 

In some respects, this is an incredibly ‘inclusive’ definition, acknowledging the wide range of factors that can contribute to an individual’s ‘sexuality’. On the other hand, it is so vague that it doesn’t actually include differences in sexual orientation, from heterosexual (which is not included in the Syllabus either) to bisexual and homosexual or same-sex attracted.

 

To remedy this, an additional definition should be added for ‘sexual orientation’, one that explicitly includes the words heterosexual, lesbian, gay and bisexual (and, for the latter three, is linked to the newly-added definitions of these terms).

 

Recommendation 2: The Glossary should include a definition of ‘sexual orientation’, with links to the terms lesbian, gay and bisexual.

 

In contrast to the omission of sexual orientation, the Glossary does actually include a definition for the term ‘gender identity’ on page 135:

 

“Refers to a person’s sense of being masculine or feminine, both or neither, and how they identify. Gender identity does not necessarily relate to the sex assigned at birth.”

 

There are some positive elements of this definition, including recognition that gender identity can differ from the sex assigned at birth. However, it could also benefit from including additional detail, such as making explicit reference to ‘non-binary’ gender identities (beyond the acknowledgement of “both or neither” in the current definition) although this should be done in close consultation with trans groups.

 

Recommendation 3: The Glossary definition of ‘gender identity’ should be expanded, including use of the term ‘non-binary’ and linking to the term transgender. These changes should be made in consultation with trans groups.

 

The final term in the Glossary that requires updating is ‘diversity’ on page 133:

 

“Differences that exist within a group including age, sex, gender, gender expression, sexuality, ethnicity, ability, body shape and composition, culture, religion, learning styles, socioeconomic background, values and experience. Appreciating, understanding and respecting diversity impacts on an individual’s sense of self and their relations to others. Diversity can be acknowledged through shared activities that may involve building knowledge and awareness.”

 

It should be noted that this is the only time in the entire document that the phrase ‘gender expression’ is used – and it is not defined, meaning it does not automatically include transgender students. Similarly, the use of the word ‘sexuality’ here is based on the existing definition that, as we have seen above, does not actually include lesbian, gay or bisexual students. Finally, the exclusion of the word intersex – and the failure to define ‘sex’, here or elsewhere – means students with intersex variations are not necessarily included either.

 

In short, the current definition of ‘diversity’ in the Glossary appears to be ironic, given it does not include students who are lesbian, gay, bisexual, transgender or intersex.

 

Recommendation 4: The Glossary definition of diversity should be amended to include references to differences in sexual orientation, gender identity and intersex variations.

 

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Inclusive Information

 

The adoption of the above recommendations would be an important first step towards an inclusive PDHPE K-10 Syllabus. However, they will not have a significant impact unless the content of the Syllabus itself, and specifically the material that must be taught in its respective Stages, is also updated.

 

This means ensuring that the following concepts are introduced, and explained, at appropriate points in the Syllabus:

 

  1. Sexual orientation

 

The concept of sexual orientation, including differences in sexual orientation and the existence of lesbian, gay and bisexual people, should be introduced by stage 3 of the Syllabus (at the latest). Equally importantly, it must not be ‘optional’ to teach the fact that people can be any of heterosexual, lesbian, gay or bisexual, and that each sexual orientation should be accepted.

 

On a practical level, there are several places in the draft Syllabus where this could be achieved, including:

 

  • In Stage 3, on page 66, where it says “examine how identities and behaviours are influenced by people, places and the media, for example: – distinguish different types of relationships and their diversity”, the ‘for example’ should be removed. The words ‘including relationships between people of different sexes, and of the same sex’ should be added after ‘their diversity’.
  • In Stage 3, also on page 66, where it says “investigate resources and strategies to manage change and transition, for example: – understand that individuals experience change associated with puberty at different times, intensity and with different responses eg menstruation, body change emotional change, sexuality”, both the ‘for example’ and ‘eg’ should be removed. The term ‘sexual orientation’ should also be added after sexuality (acknowledging the different between these two concepts, as described above).
  • In Stage 4, on page 78, after it says “investigate the impact of transition and change on identities: – examine the impact of physical, social and emotional change during adolescence on gender, cultural and sexual identity” add a new point ‘- examine and discuss different sexual orientations, including heterosexual, lesbian, gay and bisexual’.
  • In Stage 4, also on page 78, the point “describe how rights and responsibilities contribute to respectful relationships: – recognise types and variety of relationships” should be amended along similar lines to the first dot point above in relation to Stage 3, page 66.
  • In Stage 4, on page 85, where it says “plan and use health practices, behaviours and resources to enhance the health, safety, wellbeing and physical activity participation of their communities: – design and implement health promotion activities targeting preventive health practices relevant to young people and those with diverse backgrounds or circumstances eg diversity of culture, gender or sexuality”, the word ‘eg’ should be removed, and the term ‘sexual orientation’ should replace ‘sexuality’.
  • In Stage 5, on page 92, where it says “evaluate factors that impact on the identities of individuals and groups including Aboriginal and Torres Strait Islander Peoples: – examine how diversity and gender are represented in the media and communities, and investigate the influence these representations have on identities” the term ‘sexual orientation’ should be added after gender (to read ‘diversity, gender and sexual orientation’).

 

  1. Gender identity

 

The concept of gender identity should be introduced earlier than sexual orientation, especially given the recent (welcome) increase in children expressing their own gender identities, rather than identities that are expected of, or even imposed on, them. Ideally, this information would be featured from Stage 1 onwards, and acknowledge the diversity of gender identities that exist.

 

The concept of gender identity could also be added, or expanded upon, at several other points in the Syllabus, including:

 

  • In Stage 2, on page 55, where it says “explore strategies to manage physical, social and emotional change, for example: – discuss physical, social and emotional changes that happen as people get older and how this can impact on how they think and feel about themselves and different situations eg friendships, gender identity, appearance, interests” both ‘for example’ and ‘eg’ should be deleted, so that it is mandatory for all students to learn about gender identity at this point.
  • In Stage 4, on page 85 where it says “plan and use health practices, behaviours and resources to enhance the health, safety, wellbeing and physical activity participation of their communities: – design and implement health promotion activities targeting preventive health practices relevant to young people and those with diverse backgrounds or circumstances eg diversity of culture, gender or sexuality”, in addition to the changes proposed earlier re sexual orientation, the term ‘gender identity’ should be added after ‘gender’.
  • In Stage 5, on page 92, where it says “evaluate factors that impact on the identities of individuals and groups including Aboriginal and Torres Strait Islander Peoples: – examine how diversity and gender are represented in the media and communities, and investigate the influence these representations have on identities”, the term ‘gender identity’ should also be added (so that it reads ‘diversity, gender, gender identity and sexual orientation’).

 

  1. Intersex

 

As with gender identity, the concept of intersex – and the existence of people with intersex variations – should be introduced earlier than sexual orientation. Again, this should ideally be introduced in Stage 1, to allow students to grow up knowing that there aren’t just exclusively ‘male’ and ‘female’ bodies.

 

This recognition of bodily diversity should also be incorporated into the Syllabus in Early Stage 1 on page 35, and Stage 1 on page 45, where it includes references to learning about ‘male and female anatomy’. The discussion of intersex should then be incorporated at similar points to sexual orientation and gender identity throughout the remaining stages of the Syllabus.

 

Doing so would also help to meet one of the goals of the recent Darlington Statement of intersex organisations:

 

“54. We call for the inclusion of accurate and affirmative material on bodily diversity, including intersex variations, in school curricula, including in health and sex education.”[i]

 

  1. Rainbow families

 

The existence of a diversity of families, including children who grow up with same-sex parents, should also be included in the Syllabus. There are already multiple points in the Syllabus where this could be easily added, such as:

 

  • In Stage 1, on page 45, after “describe ways to develop respectful relationships and include others to make them feel they belong, for example: – explore kinship as an important part of Aboriginal and Torres Strait Islander cultures”, the ‘for example’ should be removed and a new point added “- explore the diversity of family types, including families with mixed-sex parents and families with same-sex parents.”
  • In Stage 2, on pages 54-55, where it says “explore how success, challenge and overcoming adversity strengthens identity, for example: – explore contextual factors that influence the development of personal identity eg family, parents/carers…” both the ‘for example’ and ‘eg’ should be removed, and the term ‘rainbow families’ should be added (so that it reads ‘family including rainbow families[ii]’).
  • In Stage 3, on page 66, where it says “examine how identities and behaviours are influenced by people, places and the media, for example: – distinguish different types of relationships and their diversity” this could also include a reference to diversity in family relationships, including mixed-sex and same-sex parents.

 

Finally, as noted earlier there is already one place where the words lesbian, gay, bisexual, transgender and intersex already appear in the curriculum – in Stage 5, on page 97. This point should also be made mandatory rather than optional, by removing the ‘eg’ (so that it reads “analyse how societal norms, stereotypes and expectations influence the way young people think, behave and act in relation to their own and others’ health, safety and wellbeing, including lesbian, gay, bisexual, transgender, intersex and queer (LGBTIQ) health, people from culturally and linguistically diverse backgrounds (CALD)”.

 

Recommendation 5: The content for the Stages of the Syllabus should be amended to ensure all students learn about sexual orientation, gender identity, intersex and rainbow families.

 

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Acceptance & Anti-Bullying

 

One of the welcome features of the draft PDHPE K-10 Syllabus is the significant focus on combating bullying, and on promoting what is described as ‘upstander behaviour’.

 

This includes introducing content around confronting discrimination from Stage 2 onwards – see page 55 (“predict and reflect on how other students might feel in a range of challenging situations and discuss what they can do to support them eg confronting discrimination) and twice on page 57 (“recognise types of abuse and bullying behaviours and identify safe and supportive upstander behaviour” and “share ideas, feelings and opinions about the influence of peers and significant others in relation to bullying, discrimination, eating habits and nutrition, drug use, online safety and physical activity levels”).

 

However, I believe there is a need to ensure this anti-bullying content explicitly addresses anti-LGBTI bullying, given both its widespread prevalence and devastating impact on thousands of LGBTI young people. There are multiple opportunities to make these changes:

 

  • In Stage 3, on pages 69-70, where it says “plan and practise assertive responses, behaviours and actions that protect and promote health, safety and wellbeing, for example: – practise safe and supportive upstander behaviour and discuss how they can prevent and/or stop bullying and other forms of discrimination and harassment” the ‘for example’ should be removed, and the words ‘including racism, sexism, homophobia, biphobia, transphobia and intersexphobia’ should be added after ‘harassment’.
  • Also in Stage 3, on page 70, where it says “recommend appropriate alternatives and take action to improve health, safety, wellbeing or physical activity issues within the school or wider community, for example: – explore initiatives that challenge stereotypes to support the diversity of individuals and communities eg racism, gender stereotypes, discrimination [and] – model behaviour that reflects sensitivity to the needs, rights and feelings of others and explore ways to create safe and inclusive schools for minority groups eg challenge discrimination, peer support” the ‘for example’ and two instances of ‘eg’ should be removed to ensure this content is mandatory. Further, either ‘anti-LGBTI prejudice’ or ‘homophobia, biphobia, transphobia and intersexphobia’ should be added to ‘racism, gender stereotypes, discrimination’.
  • In Stage 4, on pages 79-80, where it says “discuss the impact of power in relationships and identify and develop skills to challenge the abuse of power: – discuss the influence of family, media and peer attitudes to power and explore how these may lead to an abuse of power in relationships eg bullying, homophobia, intolerance, family and domestic violence [and] – recognise forms of bullying, harassment, abuse, discrimination and violence and how they impact health and wellbeing”. It should be noted that this is the only time ‘homophobia’ is mentioned in the entire document and, unfortunately, it is after an ‘eg’, meaning it is entirely optional for teachers and schools to teach. The ‘eg’ should be deleted, and either ‘homophobia, biphobia, transphobia and intersexphobia’ or ‘anti-LGBTI prejudice’ should be added.
  • In Stage 4, on page 83, where it says “investigate the benefits to individuals and communities of valuing diversity and promoting inclusivity: – explore their own and others’ values and beliefs towards issues of racism, discrimination, sexuality and investigate the impact of contextual factors on young people, particularly those from diverse backgrounds, including Aboriginal and/or Torres Strait Islander Peoples [and] – describe how pro-social behaviour, respecting diversity, challenging racism and discrimination are inclusive ways of supporting and enhancing individual; and community health and wellbeing”. Based on the existing definitions of ‘sexuality’ and ‘diversity’ in the Glossary, these points currently do not include promoting LGBTI inclusivity. Even if those definitions are updated in line with the above recommendations, these points should still be made more explicit, with the first amended to read ‘racism, sexism, anti-LGBTI discrimination’ and the second to read ‘challenging racism, sexism, anti-LGBTI prejudice and discrimination’.
  • In Stage 4, also on page 83, where it says “plan and implement inclusive strategies to promote health and wellbeing and to connect with their communities: – describe the skills, strengths and strategies required to contribute to inclusive communities and implement strategies to challenge racist and prejudicial views of diversity within the community”, it should be amended to read ‘challenge, racist, sexist, anti-LGBTI and prejudicial views’.
  • In Stage 5, on page 93, where it says “investigate how the balance of power influences the nature of relationships and propose actions to build and maintain relationships that are respectful: – discuss discrimination as an abuse of power and evaluate legislation, policies and practices that address discrimination eg past policies affecting Aboriginal Peoples such as segregation and Aboriginal Self Determination” the words ‘, or the Sex Discrimination Act’ could be added.

 

Recommendation 6: The content for the Stages of the Syllabus should explicitly include discussion of anti-LGBTI bullying and discrimination and how to address it, beyond the single – optional – reference to homophobia that currently exists.

 

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Sexual Health Education

 

Another positive feature of the draft PDHPE K-10 Syllabus is the inclusive definition of ‘sexual health’ in the Glossary:

 

“A state of physical, mental and social wellbeing in relation to sexuality. It requires a positive and respectful approach to sexuality and sexual relationships, as well as a possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence.”

 

The explicit acknowledgement of ‘pleasurable and safe sexual experiences’, and the need for sexual experiences to be ‘free of coercion’, is particularly welcome.

 

However, adopting an inclusive definition doesn’t mean much when the only time the phrase sexual health actually appears in the Syllabus prior to Stage 5 (which would generally be students in Years 9 and 10), is one brief reference in Stage 4 (covering students in Years 7 and 8), on page 84:

 

“explore the relationship between various health, safety and physical activity issues affecting young people and assess the impact it has on the health, safety and wellbeing of the community:

  • examine the impact that body image and personal identity have on young people’s mental health, drug use, sexual health and participation in physical activity.”

 

This isn’t explicitly about teaching the fundamentals of sexual health, merely its connection to, and interrelationship with, ‘body image and personal identity’ (which, while important, is not sufficient in and of itself).

 

Similarly, there is only one reference in the general curriculum to ‘sexually transmissible infections’, also in Stage 4, on page 85:

 

“plan and use health practices, behaviours and resources to enhance the health, safety, wellbeing and physical activity participation of their communities:

  • identify and apply preventive health practices and behaviours that assist in protection against disease eg blood borne viruses, sexually transmissible infections”.

 

Note that the reference to BBVs and STIs here also follows an ‘eg’, meaning that the decision whether to teach students about STIs (such as HIV) is discretionary. That is simply not good enough in 2017 – all students should receive information about STIs to empower them to control their own health.

 

Recommendation 7: Stage 4 of the Syllabus should include comprehensive education about sexual health, including mandatory information about sexually transmissible infections.

 

There is more information around sexual health in Stage 5 of the draft Syllabus, although even it is problematic. On page 95, it states:

 

“evaluate strategies and actions that aim to enhance health, safety, wellbeing and physical activity levels and plan to promote these in the school and community:

  • explore methods of contraception and evaluate the extent to which safe sexual health practices allow them to take responsibility for managing their own sexual health”

 

Given ‘contraception’ is generally understood to mean prevention of pregnancy, this content is therefore skewed towards vagina-penis sexual intercourse. To address the fact there are a range of other sexual practices (not just for LGBTI students, but also for cisgender heterosexual students too), this point should be amended to explicitly discuss sexual health and STI-prevention with respect to a range of practices. To not do so means denying the stated aim for all students “to take responsibility for managing their own sexual health.”

 

Recommendation 8: The Syllabus should move beyond discussion of ‘methods of contraception’ to discuss sexual health education around a range of different practices so that all students can ‘take responsibility for managing their own sexual health’.

 

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Life Skills

 

The students who are enrolled in the Years 7-10 Life Skills version of the PDHPE Syllabus can (obviously) also be lesbian, gay, bisexual, transgender or intersex, and therefore also have the right for LGBTI content to be included throughout.

 

There are a variety of points at which the draft Life Skills content should be amended to achieve this important goal, including:

 

  • On page 113, where it says “What personal characteristics make us unique? Students recognise personal characteristics that are the same and/or different as others, for example: – gender [and] – diversity” the terms ‘gender identity’, ‘intersex’ and ‘sexual orientation’ should also be added.
  • Also on page 113, where it says “What changes do adolescents go through? Recognise visible features that undergo change during adolescence, for example: – female and male body changes” it should acknowledge the existence of intersex bodies.
  • On page 114, where it says “recognise changes in relationships that occur in adolescence, for example: – social and emotional relationships with other genders” it should be reworded to say “social and emotional relationships with people of the same or different genders”.
  • Also on page 114, where it says “understand that physical changes are a normal part of adolescence, for example: – identify the stages of the reproductive process, eg menstrual cycle, sperm production, conception, pregnancy, childbirth” it should also include discussion of sexual health, and sexual practices, that are not ‘reproductive’ in nature.
  • On page 115, where it says “recognise factors that impact negatively on relationships, for example: – bullying, coercion, harassment, violence, threats, bribes [and] –sexism [and] –racism” it should also include either ‘anti-LGBTI prejudice’ or ‘homophobia, biphobia, transphobia and intersexphobia’.
  • Finally, on page 122, where it says “identify matters associated with sexuality, for example: privacy and ethical behaviour – responsibilities associated with sexual activity for themselves and others – safe sex – contraception – fertility and pregnancy – sexually transmitted infections – sexual behaviours and expectations – appropriate sources for advice on and assistance – potential outcomes of sexual activity” once again it should explicitly include discussion of sexual health, and sexual practices, that are not ‘reproductive’ in nature.

 

Recommendation 9: The Years 7-10 Life Skills Syllabus should be amended to explicitly include LGBTI students and content that is relevant to their needs.

 

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Thank you for taking this submission into consideration as the NSW Education Standards Authority finalises the PDHPE K-10 Syllabus. Please do not hesitate to contact me at the details below should you wish to clarify any of the information provided, or to seek additional information.

 

Sincerely

Alastair Lawrie

 

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Footnotes:

[i] For more on the Darlington Statement, see the OII Australia website: https://oii.org.au/darlington-statement/

[ii] If the term ‘rainbow families’ is used at this point, it should also be defined in the Glossary.

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Submission to PBAC re Consideration of Truvada as PrEP

Updated: 11 January 2017 [NB For original submission, see below]

Unfortunately, although perhaps not unexpectedly (because most first-time major submissions are rejected or at least deferred), the PBAC decided not to support the application for Truvada as PrEP to be added to the Pharmaceutical Benefits Scheme (PBS).

In its decision the PBAC stated that it “did not recommend the listing of Truvada for HIV pre-exposure prophylaxis (PrEP) on the basis of unacceptable and uncertain cost effectiveness in the proposed population and at the proposed price.”

The PBAC also included comments questioning the expected adherence of people taking PrEP: “the efficacy of Truvada was highly dependent on adherence, and that it is not clear if subjects at high risk of contracting HIV due to self-reported low adherence to safer sex practices would also have lower adherence to medication.”

This last point was strongly rejected by HIV activists and organisations when the PBAC decision was released. From the Star Observer:

“This statement is insulting, unfair, and paternalistic. It is a given that for medications to work properly, they must be taken as directed,” Nic Holas, co-founder, the Institute of Many (TIM) – a peer-run community of people living with HIV – said.

“The reasons why a person may have a ‘low adherence to safer sex practices’ are complex and varied, and should not be the basis for withholding PrEP as a necessary addition to the prevention toolkit.”

VAC’s Simon Ruth added: “Drawing a comparison between risk behaviour and adherence to medication is illogical. It is wrong and offensive to assume that gay men would not be taking every measure to protect themselves when it comes to HIV, and we view PrEP as the most powerful tool for doing that.

“PrEP demonstration projects have shown that gay men’s adherence to PrEP is extremely high, and comments like this are unhelpful, stigmatising and homophobic.”

Interestingly, and perhaps somewhat disappointingly, a new application for Truvada as PrEP is not on the agenda for the March 2017 meeting of the PBAC meaning it cannot be considered again until July 2017 at the earliest.

Even if that application is successful, however, it would still be another 3-6 (or even potentially 9 months) from that meeting until it is finally included on the PBS – or likely sometime in the first half of 2018.

In the meantime, most Australian states and territories have commenced large-scale trials of PrEP, especially in populations at higher risk of acquiring HIV (including gay men). This includes:

  • In NSW, the EPIC trial
  • In Victoria, VICPrEP (although noting that this website states the trial is now closed to participants) and
  • In Queensland, QPrEPd

In other jurisdictions, please check with your local AIDS Council (or equivalent) for more.

Original Submission

In July 2016, the Pharmaceutical Benefits Advisory Committee (PBAC) will consider whether to recommend that Truvada (tenofovir + emtricitabine) should be added to the Pharmaceutical Benefits Scheme (PBS) for the purposes of PrEP (or Pre-Exposure Prophylaxis) for HIV.

As part of this process, the PBAC accepts submissions from relevant organisations, and from members of the community who would either be personally affected by, or who are interested in, this decision. Further details on the submission process can be found here (including the main questions that a community submission should address).

The following is my personal submission calling for the approval of PrEP as a vital HIV prevention measure to help achieve the goal of the virtual elimination of HIV transmission by 2020.

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Consumer input: Please indicate whether you are a person with this medical condition, a friend or family member, a prescriber, a representative of an organisation or other interested person:

I am an ‘other interested person’, by which I mean I am a member of the lesbian, gay, bisexual, transgender and intersex (LGBTI) community. Specifically, I am a 37 year old gay man, and therefore a member of a community that has been disproportionately affected by HIV for essentially my entire life, and continues to be disproportionately affected to this day.

That also means I am a member of a community that would particularly benefit from the availability of a proven, highly-effective HIV-prevention measure such as the use of Truvada (tenofovir + emtricitabine) for Pre-Exposure Prophylaxis (PrEP).

Therefore, while based on my personal circumstances I will likely not be a candidate for PrEP, I passionately believe it should be made available through the PBS so that other members of my community can engage in the HIV-prevention actions that would be most effective for them, and not be prevented from doing so based on factors such as geography or cost.

What comments would you like the PBAC to take into account when it considers this submission?

It was 35 years ago this week that the first medical report of a mysterious illness affecting homosexual men in New York and California was published. Within a few years the entire world knew about AIDS, and the virus that could cause it – HIV could be transmitted sexually and via other means involving blood-to-blood contact, it was potentially deadly, and there was neither a vaccine nor a cure.

Fortunately, in the decades since there have been some significant advances, not least of which was the treatment revolution from 1996 onwards which transformed HIV from a (far-too-often) lethal virus to a chronic manageable condition (at least for those who had access to these life-changing medicines).

However, at the other end of the spectrum, prevention, there has been far less progress. There is still no vaccine – and it doesn’t seem like there will be one in the short-to-medium-term either.

There have been some advances involving ‘treatment as prevention’, where HIV treatment resulting in Undetectable Viral Load dramatically lowers the risk of transmission, which is especially beneficial for people in sero-discordant relationships.

But the effectiveness of treatment as prevention on a population-wide level also relies on extremely high levels of HIV testing among priority populations (levels which, despite increases in some well-served areas, haven’t been achieved in all locations and harder to reach populations).

Which means the primary prevention method for people in communities that are at disproportionate risk of HIV transmission within Australia, including gay men, remains exactly the same as it was in the mid-1980s – the consistent use of condoms. While that is obviously effective for a significant number of people, and will continue to remain so for many, it has clearly never been effective for everyone.

The proof of that is in the number of new HIV diagnoses reported each year. The Kirby Institute’s 2015 Annual Surveillance Report on HIV, viral hepatitis and sexually transmissible infections found that “[t]he number of HIV infections newly diagnosed in Australia has remained stable for the past three years, with 1,081 cases in 2014, 1,028 in 2013 and 1,064 in 2012” (p11), with sexual contact between men continuing to be the main route of transmission, accounting for approximately 70% of those notifications.

However, while ‘stable’ might sound vaguely positive, the Report further notes that “[t]he number of new HIV diagnoses has gradually increased by 13% over the past 10 years, from 953 diagnoses in 2005” (p32). In fact, the longer-term trend has been one of a gradual increase, from 1999 onwards, which is obviously a concern.

The biggest concern is that, more than three decades into this epidemic, more than 1,000 people are still being diagnosed with HIV in Australia each year. That is a figure I doubt anyone would find ‘acceptable’.

Indeed, recent HIV Strategies at both Commonwealth and NSW levels have made prevention a greater focus to help address this issue. The Seventh National HIV Strategy 2014-2017 lists as its first goal to “work towards achieving the virtual elimination of HIV transmission in Australia by 2020”.

The NSW HIV Strategy 2016-2020 also aims to “virtually eliminate HIV transmission in NSW by 2020”. This is part of the overall ‘Ending HIV’ agenda pursued by the NSW Government in partnership with community organisations such as ACON.

But neither the NSW nor Commonwealth Government Strategies will be able to meet their goals without the introduction of new methods to improve HIV prevention.

One such method is the use of Truvada (tenofovir + emtricitabine) for Pre-Exposure Prophylaxis (PrEP). As has been demonstrated in multiple international studies[i], PrEP is highly (although not 100%) effective in preventing HIV transmission in sex between men.

For people at high risk of acquiring HIV, including gay men and other men who have sex with men who intend or are likely to have condomless anal sex with casual partners, or with HIV-positive partners with detectable HIV viral load, PrEP has the potential to be a ‘game-changer’.

Fortunately, for many it already is – or soon will be. This includes gay men who are accessing PrEP through direct personal importation schemes. It also covers those men who have already been or will shortly be enrolled in the PrEP trials being run by various State Governments, including NSW, Victoria and Queensland.

However, while these trials are obviously welcome, and, in the absence of PBS listing accessing PrEP online is an entirely rational personal decision to make, there are problems with the current situation – including that access to PrEP is dependent on geographical location and/or financial circumstance, and that some of the people purchasing PrEP online may not be seeing their GP regularly for appropriate monitoring and sexual health check-ups.

This is clearly not a sustainable position. And, because not all those people who would benefit from PrEP are currently able to access it, nor will they be able to at least in the short-term, the current ad hoc approach means Australia will not achieve the full HIV transmission reductions that could be possible.

The only way to make the most out of the new ‘technology’ that is Truvada as PrEP is to ensure that it is made available through the PBS to people at high risk of HIV transmission.

This would then allow gay men – members of my community – to be able to engage in the HIV-prevention measures that are most effective for them, with the potential to take PrEP for those periods in their life when their risk of acquiring HIV is higher.

I genuinely believe that, only by adding Truvada as PrEP to the overall HIV prevention mix, alongside other measures such as condoms, increased testing and treatment to support treatment as prevention, and better and more appropriate sexual health education, do the Commonwealth and NSW Governments stand any chance of achieving their goals of virtually eliminating HIV transmission by 2020. And, with notifications stubbornly remaining above 1,000 each and every year, those are goals that I hope everyone, including the members of the PBAC, will support.

How did you learn about this consumer submission process to be able to submit your comments today? Are there any other comments you would like to make about the process for submitting consumer input to the PBAC?

I learnt about the consumer submission process regarding Truvada for PrEP through my involvement in the blood borne virus sector (including viral hepatitis as well as HIV) and specifically via the advocacy for HIV prevention, including access to PrEP, by organisations such as ACON and AFAO.

truvada1

The little blue pill that will make a huge impact on HIV prevention.

[i] Including McCormack S et al. Pre-exposure prophylaxis to prevent the acquisition of HIV-1 infection (PROUD): effectiveness results from the pilot phase of a pragmatic open-label randomised trial. The Lancet, early online publication. DOI: http://dx.doi.org/10.1016/S0140-6736(15)00056-2. 2015.

Submission to Commonwealth Parliamentary Inquiry into Surrogacy

Update 19 May 2016:

In advance of the widely-anticipated election announcement by Malcolm Turnbull on Sunday May 8, a range of Parliamentary Committees handed down inquiry reports in the first week of May. This included the inquiry into surrogacy conducted by the House of Representatives Standing Committee on Social Policy and Legal Affairs, with their final report – called Surrogacy Matters – available here.

This update will provide a brief summary of that report, including consideration of whether they incorporated any of the recommendations made in my submission to the inquiry (included below).

Perhaps unsurprisingly, given the Committee was chaired by George ‘the Safe Schools program is like grooming’ Christensen, the Committee did not support any change in approach to commercial surrogacy in Australia:

Recommendation 1. The Committee recommends that the practice of commercial surrogacy remain illegal in Australia.

Nevertheless, this is still a disappointing outcome, particularly given the Committee did accept my suggestion that a body like the Australian Law Reform Commission (ALRC) could be tasked to develop best practice legislation in this area – they just decided to limit it to altruistic surrogacy:

Recommendation 2. The Committee recommends that the Australian Government, in conjunction with the Council of Australian Governments, consider the development of a model national law that facilitates altruistic surrogacy in Australia. The model law should have regard to the following four guiding principles:

  • that the best interests of the child should be protected (including the child’s safety and well-being and the child’s right to know about their origins),
  • that the surrogate mother is able to make a free and informed decision about whether to act as a surrogate,
  • that sufficient regulatory protections are in place to protect the surrogate mother from exploitation, and
  • that there is legal clarity about the parent-child relationships that result from the arrangement.

Looking at this recommendation in detail, I can see absolutely no reason why these same ‘guiding principles’ could not also be used to develop a framework for commercial surrogacy for inclusion in the model law (but that would take a Committee, and a Parliament, with more courage than the one that was just dissolved).

On the positive side, the Committee notes on page 5 that “[m]any inquiry participants also highlighted a number of discriminatory provisions that exist in relation to gender, marital status and sexual orientation” in state and territory laws (and referenced submissions from the Australian Human Rights Commission, myself, and the NSW Gay & Lesbian Rights Lobby).

As a result, one of the factors the Committee believes the ALRC should consider is “the need for State and Territory laws to be non-discriminatory” (Recommendation 3), which is obviously welcome.

However, the Committee’s recommendations around international commercial surrogacy are far less welcome – and far more frustrating.

The Committee acknowledged that the ban on domestic commercial surrogacy is a major contributing factor to Australian couples, including LGBTI couples, seeking access to commercial surrogacy in other countries. It also acknowledged that the criminalisation of this practice, by Queensland, NSW and the ACT, has so far been ineffective in stopping it.

But, instead of using this evidence to justify a reconsideration of the domestic prohibition of commercial surrogacy, the Committee decided to reinforce this ‘criminalisation’ agenda:

Recommendation 9. The Committee recommends that the Australian Government introduce legislation to amend the Migration Act 1958 such that Australian residents seeking a passport for a young child to return to Australia are subject to screening by Department of Immigration and Border Protection officials to determine whether they have breached Australian or international surrogacy laws while outside Australia, and that, where the Department is satisfied that breaches have occurred, the Minister for Immigration is given the authority to make determinations in the best interests of the child, including in relation to the custody of the child.

So, in Christensen & co’s ideal world, Department of Immigration and Border Protection officials will investigate Australian families who return from overseas with children born through surrogacy arrangements and, presumably, assist in their criminal prosecution under state and territory law.

Most worrying of all is the proposal for the Minister for Immigration to make determinations about the custody of that child, including potentially stripping their parents of responsibility. Imagine for a moment the current Minister, Peter Dutton (or his predecessor, Scott Morrison) making such decisions, including about LGBTI families? Let’s hope that terrifying reality never comes to pass.

All in all then, while the Committee’s Surrogacy Matters report does include some positive recommendations (such as supporting the principle that state and territory surrogacy laws should be non-discriminatory), its failure to reconsider the ban on domestic commercial surrogacy, and its approach to international commercial surrogacy, is frustrating and worrying, respectively.

George Christensen

George Christensen, Committee Chair.

 

**********

Original Post:

Committee Secretary

House of Representatives Standing Committee on Social Policy and Legal Affairs

PO Box 6021

Parliament House

Canberra ACT 2600

spla.reps@aph.gov.au

 

Thursday 11 February 2016

 

To whom it may concern

 

Submission to Commonwealth Parliamentary Inquiry into Surrogacy

 

Thank you for the opportunity to make a submission to the inquiry into surrogacy, being conducted by the House of Representatives Standing Committee on Social Policy and Legal Affairs.

 

In this submission, I will not be addressing all eight terms of reference of the inquiry in detail.

 

Instead, I propose to focus on the following three issues:

 

  • Surrogacy and lesbian, gay, bisexual, transgender and intersex (LGBTI) parent(s)
  • National consistency and
  • Commercial surrogacy, including international commercial surrogacy.

 

These three issues are of particular relevance to the first three terms of reference of the inquiry:

 

  1. the role and responsibility of states and territories to regulate surrogacy, both international and domestic, and differences in existing legislative arrangements
  2. medical and welfare aspects for all parties, including regulatory requirements for intending parents and the role of health care providers, welfare services and other service providers [and]
  3. issues arising regarding informed consent, exploitation, compensatory payments, rights and protections for all parties involved, including children.

 

For context, I am writing this submission as an LGBTI advocate and activist, and as someone who is in a long-term same-sex relationship, but not as someone who intends to enter into a surrogacy arrangement at any point in the foreseeable future.

 

Surrogacy and LGBTI parents

 

While I am not an expert in surrogacy policy and/or law across Australia, I am aware that different jurisdictions have adopted different approaches to the eligibility of LGBTI people to access surrogacy.

 

Specifically, it is my understanding that, while most Australian jurisdictions now allow non-discriminatory access to altruistic surrogacy (including my current state of residence, NSW), some jurisdictions continue to prohibit same-sex couples solely on the basis of their sexual orientation – including both South Australia and Western Australia.

 

There can be no justification for this discrimination.

 

The overwhelming majority of credible research shows that children raised in same-sex parented families are as healthy, and as happy, as those raised by mixed-sex couples.

 

As Deborah Dempsey found in the 2013 research paper “Same-sex parented families in Australia”[i]:

 

“[o]verall, research to date considerably challenges the point of view that same-sex parented families are harmful to children. Children in such families do as well emotionally, socially and educationally as their peers from heterosexual couple families” [emphasis added].

 

This conclusion was supported by research in the following year, by Dr Simon Crouch and others, that:

 

“children with same-sex attracted parents in Australia are being raised in a diverse range of family types. These children are faring well on most measures of child health and wellbeing, and demonstrate higher levels of family cohesion than population samples.”[ii]

 

These findings accord with reputable studies from overseas, with evidence consistently revealing that children from same-sex parented families experience the same levels of physical and mental health as their peers, if not better.

 

Given this, I believe that it is time for the remaining Australian jurisdictions to remove any outstanding discrimination against LGBTI people seeking access to surrogacy. To support this objective, the current inquiry should express its support for the equal treatment of LGBTI parents and prospective parents, and encourage remaining jurisdictions to amend their laws.

 

Recommendation 1: The Committee should expressly support the principle that there should be no discrimination against LGBTI people seeking access to surrogacy and should encourage jurisdictions that currently discriminate against LGBTI people in this area to remove such discrimination as a matter of priority.

 

National Consistency

 

The above issue (LGBTI eligibility) is just one area where there is significant inconsistency in the legislative approach to surrogacy across Australia.

 

There are a variety of other inconsistencies, including the very different treatment of international commercial surrogacy by different states and territories (which will be addressed in more detail below).

 

There seems to be little justification for Australian jurisdictions to adopt such widely divergent approaches.

 

Moreover, the differences in legislative approach can have significant impacts on people who may be mobile, moving regularly between jurisdictions, who are contemplating becoming parents and where surrogacy is one, or even the most likely, method in which this may occur.

 

Alternatively, the differences in legislative approaches to surrogacy may induce, or in some cases compel, people to move between states and territories, especially to avoid possible criminal sanction.

 

As someone who has already lived in four different jurisdictions for extended periods (and twice in one of those jurisdictions), it seems illogical that at different points in time I would not have had access to altruistic surrogacy due to where I lived at the time, or that currently accessing international commercial surrogacy would make me a criminal in some of those places, but not others.

 

Wherever possible – and provided that LGBTI people are not denied access to surrogacy because of their sexual orientation, gender identity or intersex status – I believe that the laws regulating surrogacy should be consistent across all Australian jurisdictions, and that the current inquiry should adopt this as a principle for proposed reforms.

 

Recommendation 2: Provided that LGBTI people are not discriminated against, the Committee should expressly support the principle that the laws regulating surrogacy should be uniform across Australian states and territories, wherever possible.

 

Commercial Surrogacy, including International Commercial Surrogacy

 

The first two parts of this submission have covered issues that should be uncontroversial for most people – that LGBTI parents, and prospective parents, should be treated equally, and that, wherever possible, there should be national consistency on the laws which apply to surrogacy.

 

There is no denying, however, that the third issue is inherently controversial – and that is the question of whether, and if so how, commercial surrogacy should be allowed in Australia.

The current response by Australian states and territories has been to prohibit domestic commercial surrogacy in all circumstances, with three jurisdictions[iii] going one step further and criminalising participation in international commercial surrogacy arrangements as well.

 

My approach to this issue is informed by the following four observations:

 

  1. Surrogacy arrangements, and especially commercial surrogacy arrangements, contain a risk of exploitation of the surrogate
  2. The risk of exploitation significantly increases in the absence of appropriate regulatory oversight
  3. There are some women who perform the role of surrogate, who wish to be paid for this service and who would not be exploited by doing so, and
  4. There are many prospective parents, including but not limited to LGBTI (and especially gay male) people, for whom commercial surrogacy is their most likely avenue to become parents and who are therefore willing to participate in these arrangements, domestically or internationally and, in some cases, irrespective of its potential illegality.

 

Based on these observations, I do not believe that the current approach adopted by the states and territories on this issue is the correct one.

 

Instead, it is my view that it would be preferable for commercial surrogacy to be made lawful within Australia, but only within a regulatory framework that includes appropriate safeguards and oversight to minimise the risk of exploitation of surrogates.

 

As I have submitted previously to the NSW Government[iv], and to the National Health & Medical Research Council[v], I believe that the NSW and/or Australian Law Reform Commissions could be tasked with investigating this issue, and proposing a regulatory framework that significantly reduces the risk of surrogate exploitation.

 

This framework could then be considered by the respective Parliaments, rather than debating the issue of commercial surrogacy in the abstract, which is too often the case, and which too easily leads to blanket bans rather than a more considered approach.

 

Indeed, as I wrote to the NHMRC:

 

“While I agree that commercial surrogacy raises a variety of complex ethical issues, I do not necessarily agree with… broad-sweeping and all-encompassing statement[s] against commercial surrogacy. I do not believe there is sufficient evidence to assert that in every single situation commercial surrogacy is ‘unethical’ or ‘wrong’.

 

“Of course, I am, like most people, sensitive to the very real potential for commercial surrogacy to result in the exploitation of women for their reproductive capabilities. This has to be a major, if not the major, consideration in determining whether to allow commercial surrogacy and if so what form of regulation might be appropriate.

 

“However, I am also aware that the current legal situation – where commercial surrogacy in Australia is banned, and as a direct result of these laws an increasing number of Australian individuals and couples are engaging in commercial surrogacy arrangements overseas – may in fact cause a far greater degree of exploitation of women, certainly in developing countries and/or countries which do not closely regulate surrogacy arrangements.

 

“It may be that a domestic ban on commercial surrogacy has, contrary to the intended outcome of those who introduced it, in fact resulted in greater exploitation of women when considered as a whole. It may also be that, creating a domestic commercial surrogacy scheme, which would allow for direct oversight by Commonwealth (or State and Territory) authorities, could lead to a significant reduction in the potential for such exploitation…

 

“I… believe that this is an issue that requires further investigation, and could be the subject of a comprehensive review by the Australian Law Reform Commission, or their State and Territory equivalents.

 

“The ALRC could be asked not to review whether such a scheme should be adopted but to determine, if commercial surrogacy was to be allowed in Australia, what the best possible scheme (with the least potential for the exploitation of women) would look like. The Parliament, and the wider community, could then discuss and debate the option that was put forward and make an informed choice about whether such a model was preferable to the ongoing domestic ban on commercial surrogacy (and the corresponding trend to overseas surrogacy arrangements).”

 

It is my view that this process has the potential to produce a regulatory framework to allow commercial surrogacy within Australia that would significantly reduce the risk of surrogate exploitation and therefore allay the concerns, and garner the support, of a majority of stakeholders.

 

Recommendation 3: The Committee should recommend that the Australian Law Reform Commission be asked to review the issue of domestic commercial surrogacy and develop a regulatory scheme that significantly reduces the risk of exploitation of surrogates and which is then presented for the consideration of Parliament.

 

The above discussion obviously focuses on the issue of domestic commercial surrogacy, leaving the even more vexed question of international commercial surrogacy unanswered.

 

To some extent, I would hope that, were commercial surrogacy to be allowed within Australia, the demand to engage in international commercial surrogacy arrangements would be significantly reduced.

 

However, the introduction of such a scheme, either nationwide or in some states and/or territories, is likely to be years away. In the meantime, Australian individuals and couples will continue to seek to participate in international commercial surrogacy arrangements.

 

I think it is undeniable that some of these arrangements have already led, and will continue to lead, to the exploitation of the surrogate involved. There have also been very public examples of such arrangements where the child involved has been abandoned.

 

But I also believe that there are other examples where no such exploitation has taken place, and that the arrangement has demonstrably been to the benefit of all parties concerned, including the parents, the surrogate and the child(ren).

 

Given this, there are a range of options that could be explored, including the introduction of ‘mutual recognition’ laws, where, provided appropriate safeguards and oversight exist, the commercial surrogacy schemes of specific countries are deemed to be accepted under Australian law. However, I will leave it to experts in this area to provide submissions on how such options might be drafted.

 

What I do want to comment on is the approach of Queensland, New South Wales and the Australian Capital Territory in criminalising those people who currently engage in international commercial surrogacy arrangements.

 

While, as indicated above, I understand the motivations behind such prohibitions, I question whether in practice they have been successful. Specifically, it is my understanding that individuals and couples from all three jurisdictions continue to engage in international commercial surrogacy.

 

Even if the overall number who do so has been reduced from before the respective bans were introduced (which may not be verifiable, and therefore may or may not be true), there are nevertheless negative consequences for children who are born through such arrangements.

 

This can include increased uncertainty of their legal parentage when their families have returned to Queensland, NSW and the ACT, as well as the obvious risk of criminal sanctions being imposed on their primary caregiver(s) were the international commercial surrogacy arrangement involved to come to the attention of authorities. As a general principle, it is difficult to see how criminalising the parents involved in such cases would benefit the child(ren).

 

In this context, and given the laws in all three jurisdictions have been in operation for some time, I believe it would be useful for Queensland, New South Wales and the Australian Capital Territory to specifically review their criminalisation of international commercial surrogacy arrangements, including the potential detriment of these policies on the children born as a result of such arrangements.

 

Recommendation 4: The Committee should recommend that states and territories that have introduced criminal sanctions for people engaging in international commercial surrogacy arrangements should review the effectiveness of these laws, including investigating their impact on the children born as a result of these arrangements.

 

Thank you again for the opportunity to make a submission to this inquiry. I can be contacted at the details provided with this submission should the Committee wish to obtain additional information, or to seek clarification of any of the above.

 

Sincerely

Alastair Lawrie

 

 

[i] Dempsey, D, “Same-sex parented families in Australia”, Child Family Community Australia, Research Paper No. 18, 2013.

[ii] Crouch, S, Waters, E McNair, R, Power, J, Davis, E, “Parent-reported measures of child health and wellbeing in same-sex parented families: a cross-sectional survey”, BMC Public Health, 21 June 2014.

[iii] ACT (Parentage Act 2004, s45), NSW (Surrogacy Act 2010, s11) and Queensland (Surrogacy Act 2010, s54).

[iv] Submission on Review of the NSW Surrogacy Act 2010, April 23 2014.

[v] Submission on NHMRC Review of Ethical Guidelines for Assisted Reproductive Technology Stage 2, September 17 2015.

Submission on NHMRC Review of Ethical Guidelines for Assisted Reproductive Technology Stage 2

Project Officer – ART Public Consultation

Ethics and Governance Section

Evidence, Advice and Governance

National Health and Medical Research Council

GPO Box 1421

CANBERRA ACT 2601

ethics@nhmrc.gov.au

Thursday 17 September 2015

Dear Project Officer

ETHICAL GUIDELINES ON THE USE OF ASSISTED REPRODUCTIVE TECHNOLOGY IN CLINICAL PRACTICE AND RESEARCH

Thank you for the opportunity to provide a further submission to the National Health and Medical Research Council (NHMRC) review of Part B of the Ethical guidelines on the use of assisted reproductive technology in clinical practice and research, 2007 (the ART guidelines).

The following submission builds on my earlier submission, in April 2014, to this review (a copy of which is available here: https://alastairlawrie.net/2014/04/20/submission-on-nhmrc-review-of-ethical-guidelines-for-assisted-reproductive-technology/ ).

Overall, while I note that there have been some positive outcomes from the previous round of consultation – including the recognition in para 5.1.2 that “[c]linics must not accept donations from any donor who wishes to place conditions on the donation that the gametes are for the use only by individuals or couples from particular ethnic or social groups, or not be used by particular ethnic or social groups”, and the revised approach to transmissible infections/infectious disease at para 5.2.5  – there remain a range of areas where the ART guidelines should be improved.

First, I believe that the ‘principles and values’ outlined on pages 12 and 13 of the draft ART guidelines should include a specific principle of Non-Discrimination, and that the explanation for this principle should explicitly acknowledge that there should be no discrimination on the basis of sexual orientation, gender identity or intersex status in the provision of assisted reproductive technology services.

Second, and on a related matter, in the chapter “Application of ethical principles in the clinical practice of ART”, the discussion under point 3.5 on page 15 should be updated to reflect contemporary best practice.

Specifically, the sentence “[t]here must be no unlawful or unreasonable discrimination against an individual or couple on the basis of:

  • race, religion, sex, marital status, sexual preference, social status, disability or age”

reflects out-dated terminology and does not recognise all necessary groups.

The term ‘sexual preference’ should be replaced by ‘sexual orientation’, and the additional terms ‘gender identity’ and ‘intersex status’ should be added, to ensure that all members of the lesbian, gay, bisexual, transgender and intersex (LGBTI) community are protected from discrimination, and also to ensure that the ART guidelines are consistent with the protected attributes covered under the Sex Discrimination Act 1984.

Third, consistent with my previous submission, I disagree with the discussion under point 3.6 on page 16 regarding commercial surrogacy.

In particular, I do not support the blanket statement that “[i]t is unethical for individuals, or couples, to purchase, offer to purchase or sell gametes or embryos or surrogacy services” or the equally unequivocal blanket ban at para 8.7.1 (“[c]linics and clinicians must not practice, promote or recommend commercial surrogacy, nor enter into contractual arrangements with commercial surrogacy providers.”)

As outlined previously, I believe that the Australian Law Reform Commission (ALRC) should be asked to investigate the issue of commercial surrogacy, including consideration of what a best practice scheme would look like, before determining whether all commercial surrogacy services should be deemed unethical and therefore illegal.

From my previous submission:

“While I agree that commercial surrogacy raises a variety of complex ethical issues, I do not necessarily agree with such a broad-sweeping and all-encompassing statement against commercial surrogacy. I do not believe there is sufficient evidence to assert that in every single situation commercial surrogacy is ‘unethical’ or ‘wrong’.

 Of course, I am, like most people, sensitive to the very real potential for commercial surrogacy to result in the exploitation of women for their reproductive capabilities. This has to be a major, if not the major, consideration in determining whether to allow commercial surrogacy and if so what form of regulation might be appropriate.

 However, I am also aware that the current legal situation – where commercial surrogacy in Australia is banned, and as a direct result of these laws an increasing number of Australian individuals and couples are engaging in commercial surrogacy arrangements overseas – may in fact cause a far greater degree of exploitation of women, especially in developing countries and/or countries which do not closely regulate surrogacy arrangements.

 It may be that a domestic ban on commercial surrogacy has, contrary to the intended outcome of those who introduced it, in fact resulted in greater exploitation of women when considered as a whole. It may also be that, creating a domestic commercial surrogacy scheme, which would allow for direct oversight by Commonwealth (or State and Territory) authorities, could lead to a significant reduction in the potential for such exploitation.

 I do not expect the review process considering these Guidelines to come to a conclusion about these difficult matters. Nor am I willing, or in a position, to even attempt to suggest what a domestic commercial surrogacy scheme would look like.

 However, I do believe that this is an issue that requires further investigation, and could be the subject of a comprehensive review by the Australian Law Reform Commission, or their State and Territory equivalents.

 The ALRC could be asked not to review whether such a scheme should be adopted but to determine, if commercial surrogacy was to be allowed in Australia, what the best possible scheme (with the least potential for the exploitation of women) would look like. The Parliament, and the wider community, could then discuss and debate the option that was put forward and make an informed choice about whether such a model was preferable to the ongoing domestic ban on commercial surrogacy (and the corresponding trend to overseas surrogacy arrangements).

 I believe that such a debate, informed not just by a practical proposal but also by the real-world consequences of the current ban, is vital before we can truly come to grips with and possibly resolve whether a permanent ban on commercial surrogacy is ethical or otherwise.”

Fourth, I continue to oppose ‘Conscientious objection’ provisions (under point 3.7 on pages 16 and 17) that would allow a member of staff or student to refuse to treat an individual or couple on the basis of that person’s sexual orientation, gender identity or intersex status, or on their relationship status.

The refusal to provide a medical service on these grounds is, and always should be considered, unethical.

Again, from my previous submission:

“While I note that the provision of ART services may, for some staff members of students, raise ethical concerns, I believe that the drafting of this provision is far too broad, and allows for conscientious objections even when such objections are themselves unethical.

 For example, the provision as drafted would allow an individual member of staff to refuse to provide ART services to a person on the basis of that person’s sexual orientation, gender identity or intersex status (if that person believed that ART services should not be provided to such persons) or on the basis of relationship status (if the person believed that only ‘opposite-sex’ married persons should have access to ART).

 With the increasing acceptance of LGBTI Australians (as evidenced by the long-overdue introduction of federal anti-discrimination protections in 2013) and of different relationship statuses (including the 2008 reforms to federal de facto relationship recognition), none of these objections – while potentially genuinely held by the individual – should be allowed as the basis for refusing to provide ART services. Nor should conscientious objections on the basis of any of sexual orientation, gender identity, intersex status or relationship status be recognized as acceptable or ‘ethical’ in the context of these Guidelines.

 If [point 3.7] is to be retained in the Ethical Guidelines, I recommend that it be amended to specifically note that conscientious objections do not apply, and are not accepted, with respect to the sexual orientation, gender identity, intersex status or relationship status of the intended recipient of the ART procedure or service.”

Fifth, in response to the discussion of “Sex selection for non-medical purposes” on pages 55 to 58 of the consultation draft, I submit that sex selection should not be allowed on these grounds.

There are three reasons for this:

  1. Based on evidence from the submission of OII Australia (Organisation Intersex International Australia, see their submission here: https://oii.org.au/29939/nhmrc-genetic-selection-intersex-traits/ ), it appears that sex selection is already being used to select against embryos on the basis of intersex variations. This practice is entirely unethical, intending to prevent the birth of children on the basis of where they sit along the natural spectrum of sex variation, and should cease.
  2. Allowing sex selection for non-medical purposes also sets a negative precedent, opening the door in future to selecting for (or more likely against) embryos on the basis of gender identity or even sexual orientation if and when genetic testing emerges which can accurately predict the existence of, or even pre-disposition towards, these traits.
  3. As acknowledged by the consultation paper on page 55, there is a strong “possibility that sex selection for non-medical reasons may reinforce gender stereotyping, and create pressure on the person born to conform to parental expectations regarding gender.” This practice will be particularly harmful towards children born as a result of such procedures where those children express a different gender identity to that which the parents ‘choose’, and also may negatively impact children who are homosexual or bisexual.

On this basis, I do not believe that sex selection is appropriate in any of the case studies presented on pages 56, 57 and 58, and submit that it should not be included as an ‘ethical option’ under the ART guidelines.

Sixth, and finally, I would like to express my support for the submission by OII Australia to this consultation. Specifically, I endorse their recommendations that:

  • “Information giving and counselling must include non-pathologising information, aimed at supporting a philosophy of self-acceptance”
  • Pre-implantation genetic testing (PGT) should not be used to prevent the births of intersex babies and that
  • “The practice of sex selection should not be permitted for social, child replacement, or family balancing purposes.”

Thank you again for the opportunity to provide a submission to this consultation process. Please do not hesitate to contact me, at the details below, should you which to clarify any of the above, or to seek additional information.

Sincerely,

Alastair Lawrie

Submission to NSW Parliament Inquiry into False or Misleading Health Practices re Ex-Gay Therapy and Intersex Sterilisation

Earlier this year, NSW Parliament’s Committee on the Health Care Complaints Commission called for submissions to an inquiry into the promotion of false or misleading health-related information or practices.

I wrote the following submission, looking at two practices in particular which negatively affect the lesbian, gay, bisexual, transgender and intersex (LGBTI) community: the practice of so-called ‘ex-gay therapy’ or conversion therapy, as well as the involuntary or coerced sterilisation of intersex people.

At this stage, while the Committee has chosen to publish 63 of the submissions it has received, it has not published mine, so I am reproducing it here. As always, I would be interested in your thoughts/feedback on the below.

Committee on the Health Care Complaints Commission

Parliament House

Macquarie St

SYDNEY NSW 2000

Friday 7 February 2014

Dear Committee

SUBMISSION TO INQUIRY INTO THE PROMOTION OF FALSE OR MISLEADING HEALTH-RELATED INFORMATION OR PRACTICES

In this submission, I would like to address two areas of ‘health-related practices’ which negatively affect the lesbian, gay, bisexual, trans* and intersex (LGBTI) communities.

Specifically, with respect to term of reference (c) “the promotion of health-related activities and/or provision of treatment that departs from accepted medical practice which may be harmful to individual or public health”, I believe the Committee should examine:

i)              ‘ex-gay’ or ‘reparative’ therapy, and

ii)             the involuntary or coerced sterilisation of intersex people.

Ex-gay or reparative therapy

I can think of few ‘health-related practices’ which so clearly fall within term of reference (c) of this inquiry than so-called ‘ex-gay’ or ‘reparative’ therapy.

This practice, which although more common in the United States is nevertheless still practiced in New South Wales, involves organisations, usually religious, offering ‘counselling’ to help transform people who are lesbian, gay or bisexual into being heterosexual, and in some cases to attempt to transform people who are trans* into being cisgender.

In short, ex-gay or reparative therapy involves attempting to change a person’s sexual orientation or gender identity, based on the belief that being lesbian, gay, bisexual or trans* is somehow ‘wrong’ or ‘unnatural’.

There are three main problems with ex-gay or reparative therapy.

First, there is absolutely nothing wrong or unnatural with being lesbian, gay, bisexual or trans*. Differences in sexual orientations and gender identities are entirely natural, and this diversity should be accepted and celebrated. Any attempts to prevent people from being LGBT simply demonstrate the homophobia, biphobia and transphobia of the people running ex-gay organisations.

Second, there is absolutely no scientific evidence to support these practices. Sexual orientation and gender identity cannot be ‘changed’ through these interventions. Indeed, the Australian Psychological Society, Royal Australian and New Zealand College of Psychiatrists and Pan American Health Organisation all note that reparative therapy does not work, and recommend against its practice.

Third, and most importantly, not only is ex-gay therapy based on homophobia, and discredited ‘pseudo-science’, but it is also fundamentally dangerous. Reparative therapy takes people who are already vulnerable, tells them that they are inherently wrong, and asks them to change something about themselves that cannot be changed. Inevitably, it leads to significant mental health problems, including self-hatred, depression and tragically, in some cases, suicide. The people that run ex-gay organisations are guilty of inflicting psychological and sometimes physical damage on others.

Given the level of harm that is perpetrated by these people, I believe it is incumbent on the NSW Parliament to introduce a legislative ban on ex-gay or reparative therapy. This should include the creation of a criminal offence for running ex-gay therapy, with an aggravated offence for running ex-gay therapy for people under the age of 18. This is necessary to send a signal that these homophobic, biphobic and transphobic practices are no longer tolerated in contemporary society, particularly in the case of minors.

Finally, while at this stage there is no evidence linking registered medical practitioners with these discredited practices in New South Wales, there is evidence overseas that some counsellors, psychologists, psychiatrists or other registered medical practitioners either practice ex-gay therapy themselves, or will refer patients to ex-gay organisations. The Committee should consider additional appropriate sanctions for any practitioners caught doing so in NSW, including potential de-registration and civil penalties.

Involuntary or coerced sterilisation of intersex people

In contrast to ex-gay therapy, which is largely performed by people who are not registered medical practitioners, some abuses perpetrated against intersex people in Australia are undertaken by the medical profession themselves.

As outlined by Organisation Intersex International Australia (OII Australia), in their submission to last year’s Senate Standing Committee on Community Affairs Inquiry into Involuntary or Coerced Sterilisation of People with Disabilities in Australia (dated 15 February 2013, pages 3-4):

“Every individual member of OII Australia has experienced some form of non-consensual medical intervention, including the following:

  • Pressure to conform to gender norms and to be a “real man” or “real woman”.
  • Involuntary gonadectomy (sterilisation) and clitorectomy (clitoris removal or reduction) as an infant, child or adolescent.
  • Medical and familial pressure to take hormone treatment.
  • Medical and familial pressure to undertake genital “normalisation” surgery.
  • Surgical intervention that went outside the terms of consent, including surgery that was normalising without consent.
  • Disclosure of non-relevant medical data to third parties without consent.”

While I understand that the terms of reference state that “[t]he inquiry will focus on individuals who are not recognised health practitioners, and organisations that are not registered health service providers”, given the significant levels of harm involved in these practices against intersex people, I would encourage the Committee to nevertheless examine this subject.

I would therefore recommend the Committee take into consideration the 2nd Report of the Senate Standing Committee on this topic, as well as OII Australia’s submissions to that Inquiry. I have also attached my own submission from that inquiry with this submission (link here: <https://alastairlawrie.net/2013/07/01/submission-to-involuntary-and-coerced-sterilisation-senate-inquiry/ ).

Thank you for considering my submission on these important topics.

Sincerely,

Alastair Lawrie

No 3 Senate Report on Involuntary or Coerced Sterilisation of Intersex People in Australia

Another development during 2013 which was, frankly, far more important than anything related to marriage equality was the Senate Standing Committee on Community Affairs’ Report on Involuntary or Coerced Sterilisation of Intersex People in Australia, handed down on 25 October (link here: http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Involuntary_Sterilisation/Sec_Report/~/media/Committees/Senate/committee/clac_ctte/involuntary_sterilisation/second_report/report.ashx).

For people unaware (as, being perfectly honest, I was until around this time last year), the vast majority of intersex children are subjected to involuntary surgeries shortly after birth, designed to ‘normalise’ them according to the expectations of either their parents, their doctors, or society at large (or, more likely, a combination of all three) that they should conform to a man/woman binary model of sex.

These surgeries, obviously performed without the infant/child’s consent, can involve sterilisation, as well as other ‘cosmetic’ (ie unnecessary), largely irreversible surgery on genitalia to make it fit within the idea of what a man or woman ‘should’ be (completely ignoring the fact that the infant doesn’t fit into that model, nor should that model be imposed upon them, and certainly not without their informed consent).

The fact that these surgeries continue to the present day is a major human rights scandal. The idea that people are having such major, lifelong decisions made for them by doctors and parents (who are often persuaded by the views of the medical profession) is a horrifying one.

It is something that groups like Organisation Intersex International Australia (OII Australia), and others have been campaigning on for some time. And in 2013 the members of the Senate Standing Committee on Community Affairs were listening.

They commenced an inquiry on September 20 2012, looking at the general topic of involuntary or coerced sterilisation of people with disabilities in Australia. Through the course of this inquiry, and the advocacy of groups like OII Australia, they came to see the significance of the continuing violation of the rights, including the bodily integrity, of young intersex people.

So much so, that they separated out the issues surrounding intersex people and, after handing down their general report on 17 July 2013, devoted a second report entirely to these issues. In their conclusion, they made some very encouraging observations about the need to break down the barriers of thinking around sex. In particular, they noted:

“ 6.29      Least well understood is the challenge that intersex variation presents to the rest of society. It is the challenge involved in recognising that genetic diversity is not a problem in itself; that we should not try to ‘normalise’ people who look different, if there is no medical necessity. It is the challenge of understanding that everyone does not have to fit into fixed binary models of sex and gender, and that nature certainly does not do so.

6.30      A key example of our lack of understanding of how to respond to intersex diversity can be seen in the clinical research on sex and gender of intersex people. The medical understanding of intersex is so strongly focussed on binary sex and gender that, even though its subjects have some sort of sex or gender ambiguity, the committee is unaware of any evidence to show that there are poor clinical or social outcomes from not assigning a sex to intersex infants.[19] Why? Because it appears never to have even been considered or researched. Enormous effort has gone into assigning and ‘normalising’ sex: none has gone into asking whether this is necessary or beneficial. Given the extremely complex and risky medical treatments that are sometimes involved, this appears extremely unfortunate. [emphasis added]”

 

Which is a pretty radical sentiment for a cross-party group of Senators to put their names to. The Committee also made recommendations designed to at least reduce the incidence of coerced sterilization (and surgery on genitalia), as well as increasing the support available to parents of intersex children. Specifically:

3.130    The committee recommends that all medical treatment of intersex people take place under guidelines that ensure treatment is managed by multidisciplinary teams within a human rights framework. The guidelines should favour deferral of normalising treatment until the person can give fully informed consent, and seek to minimise surgical intervention on infants undertaken for primarily psychosocial reasons. [emphasis added]

 

Recommendation 11

5.70    The committee recommends that the provision of information about intersex support groups to both parents/families and the patient be a mandatory part of the health care management of intersex cases.

Recommendation 12

5.72    The committee recommends that intersex support groups be core funded to provide support and information to patients, parents, families and health professionals in all intersex cases.”

These recommendations, and the Report more broadly, have been received positively by the National LGBTI Health Alliance, and by OII Australia, who released a statement responding to the report on 29 October (link here: http://oii.org.au/24058/statement-senate-report-involuntary-or-coerced-sterilisation-intersex-people/). OII President Morgan Carpenter said:

“This report represents the first opportunity, after many years of campaigning, to place our most serious human rights concerns before Parliament. Medical interventions on intersex infants, children and adolescents have been taking place in Australia with insufficient medical evidence, and insufficient emphasis placed on the human rights of the child and future adult. Genital surgeries and sterilisations create lifelong patients and there’s significant evidence of trauma.

At a first view, many of the headline conclusions and recommendations are positive – accepting our recommendations on minimising genital surgery, concern over the lack of adequate data, insufficient psychosocial support, and concern that decision making on cancer risk is insufficiently disentangled from wider concerns about a person’s intersex status itself; we also broadly welcome the recommendations relating to the prenatal use of Dexamethasone” and, went on to say:

 

“OII Australia warmly welcomes this crucial report. It addresses the main concerns of the intersex community. We welcome that this is a joint report with cross-party support, and we would like to thank the Committee members and staff for their hard work.

We also give particular thanks to our friends in the Androgen Insensitivity Syndrome Support Group Australia (AISSGA), the National LGBTI Health Alliance, and the other people and organisations who took time to make relevant submissions to the inquiry, or who participated in the hearing on intersex issues.

We look forward to working with clinicians, Commonwealth and State and Territory Health Departments, and the Commonwealth Attorney General’s Department, to improve health outcomes for intersex infants, children, adolescents and adults.”

Which is I guess the crucial point – it is up to multiple levels of Government, and the health profession, to implement the Committee’s recommendations, and make substantial (and long overdue) improvements in this area. And it is up to groups like OII Australia – together with support from their allies throughout the LGBTI, and wider, community – to make sure that they do.

Submission to Involuntary and Coerced Sterilisation Senate Inquiry

Last week, in amongst the craziness of the Sex Discrimination Amendment Bill, and the US Supreme Court marriage equality decisions, the Organisation Intersex International (OII) Australia put out the call for people to make submissions to the Senate Community Affairs Committee Inquiry into the Involuntary and Coerced Sterilisation of People with Disabilities in Australia.

So, on Saturday afternoon I put together the below submission. Given the rush it is admittedly not my best work, but I am glad to have put something in with respect to this important inquiry, and today OII Australia tweeted that they appreciated my effort, so that’s good enough for me. The submission was published on the Senate’s website this morning, so here it is:

I would like to make a brief submission in relation to this important inquiry.

Specifically, in my submission I will address the second term of reference for the inquiry, namely:

2. Current practices and policies relating to the involuntary or coerced sterilisation of intersex people, including

a) sexual health and reproductive issues; and

b) the impacts on intersex people.

In doing so, I will be drawing heavily on the submission provided by the Organisation Intersex International Australia.

I am writing this submission as a gay man, and someone who does not have any personal experience of what it is like to be an intersex individual. However, that does not mean I cannot recognise the fundamental human rights of others, or support broad principles according to which each and every person should be able to live their life.

These principles include the right to personal autonomy – to have physical control over one’s body – including the right to determine whether to consent, or not to consent, to medical procedures (wherever possible). This is especially important for procedures which can have long-term, and often permanent or irreversible, impact on core matters such as sex and reproduction. These principles also include the right for individuals to be different, including differences of sexual orientation, gender identity and intersex status, and for these differences to be respected by the medical profession, the Government and society at large.

Sadly, it seems that for far too many intersex Australians they have been unable to live their lives with the benefit of these principles or rights.

It is disturbing to read the following quote from pages 3 and 4 of the OII submission dated 15 February 2013:

“Every individual member of OII Australia has experienced some form of non-consensual medical intervention, including the following:

  • Pressure to conform to gender norms and to be a “real man” or “real woman”.
  • Involuntary gonadectomy (sterilisation) and clitorectomy (clitoris removal or reduction) as an infant, child or adolescent.
  • Medical and familial pressure to take hormone treatment.
  • Medical and familial pressure to undertake genital “normalisation” surgery.
  • Surgical intervention that went outside the terms of consent, including surgery that was normalising without consent.
  • Disclosure of non-relevant medical data to third parties without consent.”

For any individual to experience any of these interventions is disturbing. That every member of OII Australia has experience of at least one (and possibly more than one) is genuinely shocking.

That is why I have no compunction in backing the recommendations made by OII in their submission. In particular, I support their Medical protocol recommendations on pages 20 and 21, namely:

“1. Medical intervention should not assume crisis in our difference, nor normalisation as a goal.

2. Medical, and in particular surgical, interventions must have a clear ethical basis, supported by evidence of long term benefit.

3. Data must be recorded on intersex births, assignments of sex of rearing, and of surgical interventions.

4. Medical interventions should not be based on psychosocial adjustment or genital appearance.

5. Medical intervention should be deferred wherever possible until the patient is able to freely give full and informed consent; this is known as the “Gillick competence.”

6. Necessary medical intervention on minors should preserve the potential for different life paths and identities until the patient is old enough to consent.

7. The framework for medical intervention should not infantilise intersex, failing to recognise that we become adults, or that we have health needs as adults.

8. The framework for medical intervention must not pathologies intersex through the use of stigmatising language.

9. Medical protocols must mandate continual dialogue with intersex organisations.”

I also endorse their call for a review of terminations on the basis of intersex differences – as intersex status should not be used as the basis for an otherwise undesired termination (in the same way that, if pre-natal tests were to become available at a later date to determine homosexuality, bisexuality or transgender status, I would ethically object to these tests being used as the basis for terminations).

Similarly, I support OII Australia’s call for a review of the use of off-label use of dexamethasone (and note with concern the possibility that this steroid could be used to prevent physical masculanisation and to “prevent homosexuality” – as highlighted on page 11 of the OII Australia submission).

I also have no qualms in supporting their Legal recommendations on page 21:

“We wish to live in a society where we are not obliged to conform to binary sex and gender expectations, where our biological distinctiveness is not treated as it it’s an errant behaviour, where we are protected despite our innate differences, and where intersex people are also not singled out or “othered” as a class. We wish to live in a society where our sex assignments are mutable, and not problematized, and where we (and others) can choose to remain silent on the matter of our sex, through an “unspecified” sex classification.

We seek recognition that our treatment by the medical profession and by the state is a human rights issue. We seek explicit inclusion in human rights and anti-discrimination legislation on the basis of our biological distinctiveness, without our having to submit either to medical intervention, nor a requirement that we “genuinely” identify as one gender or another.”

Of course, it is pleasing to observe that at least some of these recommendations have been achieved since that submission was written, with the passage this week of the Sex Discrimination Amendment (Sexual Orientation, Gender Identity and Intersex Status) Bill 2013, as well as the recent release of the Australian Government Guidelines on the Recognition of Sex and Gender. But other work, especially with the medical profession, remains to be implemented.

Finally, I would like to strongly endorse the Community support recommendations of OII Australia on page 21 of their submission. The recent history of OII Australia demonstrates that it has had incredible success in firstly, drawing attention to some important, but hitherto largely ignored, human rights issues and secondly, to achieving some key victories (such as the recent passage of federal anti-discrimination protections, which was a world first at federal level).

The fact that it has done so as a small, member and volunteer-run organisation, with no government funding, is truly impressive. With many issues yet to be resolved, hopefully the Commonwealth can see fit to provide an ongoing funding source for OII Australia.