Trans out-of-pocket medical costs

This post is part of a series looking at the unfinished business of LGBTI equality in Australia. You can see the rest of the posts here

 

One of the biggest challenges facing members of the LGBTI community – albeit one that has traditionally not received significant attention – is the prohibitive cost involved for trans and gender diverse people in accessing medical treatments related to their gender identity, including (if they wish to) transition.

 

These expenses can mean the difference between being able to affirm one’s gender identity or not, and are so high that they effectively push some trans people into poverty.

 

As this March 2018 story from ABC expands:

 

‘There’s a massive price tag on being transgender in Australia. For some, the cost of surgery and treatment for gender dysphoria will crack $100,000.

 

‘The ABC… has been following one woman’s effort to find the money she needs to transition, while living below the poverty line. Stand-up comedy has been Cassie Workman’s main income for the past seven or eight years.

 

‘Normally, it’s just enough cash to scrape by, but recently she’s also been diverting as much as she can towards an estimated $85,000 in medical, administrative and incidental costs associated with her transition to a woman.’

 

The issue of trans out-of-pocket medical costs was also included in this excellent March 2019 The Conversation article on LGBTI policy priorities by Liam Elphick:

 

‘Medicare and private health insurance do not cover many treatments that transgender and gender-diverse people may require to transition, such as surgical changes, because these are deemed “cosmetic”.

 

‘As transgender advocate and lawyer Dale Sheridan tole me: “While an approximate 10% Medicare rebate is provided for genital surgery, the treatment undertaken for most transgender and gender-diverse people is far in excess of this. For example, I have spent over $15,000 on four years of electrolysis to remove my facial hair, and there is no rebate available because this is considered cosmetic. However, having a beard does not match my female appearance and has caused much dysphoria.”’

 

Perhaps the most encouraging development in this area has been the recent release of ACON’s ‘A blueprint for improving the health and wellbeing of the trans & gender diverse community in NSW’, which has given the issue of trans out-of-pocket medical costs the attention that it deserves.

 

It notes on page 20 that:

 

‘For medical services to be covered by the public health system in Australia, they must be medically necessary, clinically effective and cost effective. For many trans and gender diverse people, the ability to alter their body is part of affirming their gender and can be an important treatment if they are experiencing distress or unease from being misgendered and/or feeling incongruence between their gender identity and their body.

 

‘Research has demonstrated that access to gender-affirming care has led to reduced mental health risks and improved quality of life for trans and gender diverse people.’

 

These reasons – better mental health and quality of life outcomes – are important reasons why trans out-of-pocket medical costs must be reduced (or better-still, eliminated). But there is an even more fundamental argument: people have a human right to live their affirmed gender identity, and that right is just as important as health, education and housing.

 

ACON’s Blueprint, the development of which was driven by the trans and gender diverse community of NSW, contains six priority areas, with the first two most directly related to the issue of medical expenses:

 

Priority A: Clear and easy pathways for accessing gender-affirming care [and]

Priority B: Affordable and available gender-affirming healthcare.[i]

 

Combined, these two priorities include seven recommendations – called ‘solutions’ – to address these issues:

 

A1: Develop plain-language resources on trans and gender diverse health and human rights and establish a peer worker program to support trans and gender diverse people in navigating the health system, including when seeking gender-affirming care.

 

A2: Provide ongoing GP training, information and support so trans and gender diverse people can access gender-affirming hormone therapy through primary healthcare, using an informed consent model, and gender-affirmation treatment plans that are based on the individual needs of the patient.

 

A3: Increase the availability of specialists who are inclusive and have expertise in gender-affirming care, for those who may need specialist care in affirming their gender.

 

B2: Cover gender-affirming healthcare as medically necessary services under Medicare and the PBS.

 

B2: Provide an exemption for trans men and non-binary people assigned female at birth from the 2015 Pharmaceutical Benefits Advisory Committee (PBAC) restrictions on how testosterone is prescribed under the PBS.

 

B3: Amend the NSW Health Waiting Time and Elective Surgery Policy to remove ‘gender reassignment surgery’ as a discretionary procedure and conduct a review to ensure that all gender-affirming surgeries are included within one of the 3 clinical urgency categories.

 

B4: Remove gendered categories in health services or programs, such as Medicare billing codes, where there is no clinical need for them.

 

This document is a clear pathway forward to providing accessible and affordable healthcare to trans and gender diverse people.

 

With many of these recommendations falling within Commonwealth responsibility, that means – as with so many issues – the upcoming federal election on 18 May could make a big difference to trans out-of-pocket medical costs.

 

Indeed, this topic was covered in the recent Equality Australia, Intersex Human Rights Australia and LGBTI Health Alliance survey of the major parties, which asked:

 

Will your party ensure access to gender affirmation treatment and gender diverse people through Medicare? Will your party commit to developing a Trans and Gender Diverse Health Strategy?

 

Unfortunately, the perfunctory response from the Liberal-National Parties did not address the issue:

 

‘The Morrison Government continues to support Medicare funding at record levels and takes the advice of medical experts (the Medical Services Advisory Committee) regarding what medical treatments are listed under Medicare.’

 

The Labor Party response was somewhat better:

 

‘Many gender affirmation treatments for trans and gender diverse people are covered by Medicare. Labor will ensure that Medicare and the Pharmaceutical Benefits Scheme continue to implement anti-discriminatory policies for LGBTIQ Australians and that same sex couples and their families are not discriminated against in their access to or use of Medicare or the PBS. The health needs of trans and gender diverse Australians will be given specific consideration as part of Labor’s National LGBTIQ Health and Inclusion Strategy.’

 

Although the ALP response also linked to their National Platform, which is far more explicit on this subject [from page 144]:

 

‘Labor acknowledges the right of all Australians, including transgender and gender diverse people, to live their gender identity. For many, this includes accessing specialist health services and for some people can involve gender affirming medical technologies. Cost should not be a barrier to accessing these services. Labor commits to removing, wherever possible, barriers to accessing these services and consulting with experts in government. This should materialise in a focus on creating fair, equal and affordable access to medical care and treatments relevant to trans and gender diverse Australians.’

 

Indeed, the platform commitment to reducing costs, wherever possible, for trans-related medical expenses was highlighted in the Daily Telegraph’s transphobic front-page story on Thursday (‘Doctor Alarm at ALP Gender Agenda’, 25 April 2019):

 

‘Mr Shorten refused to answer questions from The Daily Telegraph about the policies, which also argue the cost of “gender affirming medical technologies” should be reduced because “cost should not be a barrier to accessing these services”.’

 

[Of course, if the Daily Telegraph were capable of actual journalism, they would realise this commitment on reducing costs has been in the ALP National Platform since 2015 – I should know, I helped write it[ii].]

 

Daily Telegraph transphobic front page

The Daily Telegraph‘s transphobic front page from 25 April 2019, which, in addition to targeting trans kids, criticised ALP policy to reduce the cost of ‘gender affirming medical technologies’.

 

The Greens’ survey response was longer, and included the following commitments:

 

‘Transgender and gender diverse people are best placed to determine their own transition pathways which may include gender-affirming medical treatments such as hormones and surgical interventions. Under the current healthcare model, gender-affirming treatments are approved at the discretion of medical professionals which can lead to transgender, gender diverse and intersex people being unfairly denied the right to access these treatments.

 

‘The Greens will provide a way to appeal these determinations by ensuring that all people can access a dedicated complaints body to review medical decisions regarding gender-affirming treatments and surgeries.

 

‘Finally, as part of the Greens plan to establish a national LGBTIQ+ health strategy, the Department would be tasked with investigating access to gender affirmation treatment for trans and gender diverse people, including whether such treatments could be funded through Medicare.’

 

On the basis of these survey responses, it is clear that, if the Morrison Liberal-National Government is re-elected, there will be little change to the current prohibitive expenses involved in trans medical treatments.

 

On the other hand, if the Labor Party is elected, combined with a strong Greens Senate presence, there is at least the possibility of progress on this issue.

 

Of course, this isn’t the only issue confronting trans and gender diverse Australians. As the ACON Blueprint notes [page 33], access to appropriate identity documentation remains the highest priority identified by community members:

 

‘The importance of having I.D.s reflecting trans and gender diverse people’s gender featured prominently in the community consultation process. Being able to change legal sex classification and name on NSW birth certificates or NSW recognised death certificates through a simple administrative procedure was the top ranked priority out of 28 options amongst all respondents to the online survey.’[iii]

 

However, while that policy change is essential, addressing it by itself would only fix part of the problem. Because, unless we simultaneously reduce the high out-of-pocket costs of trans medical treatments, we will continue to consign too many trans and gender diverse Australians to financial hardship and poverty. And that state of affairs is unacceptable.

 

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Footnotes:

[i] The other four are:

Priority C: An inclusive and knowledgeable NSW health sector

Priority D: Official government I.D.s and records that reflect trans and gender diverse people’s gender through simple administrative procedures

Priority E: Workplaces, education settings and other environments that are inclusive and respectful of the needs of trans and gender diverse people [and]

Priority F: A vibrant, resourced trans and gender diverse community advocating for its own needs and priorities.

[ii] The original 2015 commitment, which I wrote, read:

‘Labor acknowledges the right of all Australians, including transgender and gender diverse people, to live their gender identity. For many, this includes accessing specialist health services and for some people can involve gender affirmation surgery. Cost should not be a barrier to accessing these services and/or surgery, and Labor commits to removing, wherever possible, out-of-pocket health expenses for transgender people incurred in relation to their gender identity.’

[iii] This is an issue I have previously written about, including here: Identity, not Surgery.

Submission to NSW Parliamentary Inquiry into Gay and Trans Hate Crimes

Update 4 March 2019:

 

The Committee handed down an interim report on Tuesday 26 February (just before the issuing of the writs for the 2019 State election). That report can be found here.

 

The primary recommendation (Recommendation 1) is:

 

That the NSW Legislative Council re-establish the inquiry into Gay and Transgender hate crimes between 1970 and 2010 in the 57th Parliament and the terms of reference for further inquiry and report be subject to a decision of the House.

 

This is important, both because the work of the inquiry could not possibly have been completed in the short time available, and also to ensure that evidence of anti-LGBT hate crimes from regional, rural and remote NSW is gathered.

 

The other encouraging recommendation (Recommendation 4) is:

 

That, should the inquiry be re-established consistent with Recommendation 1, the committee invite witnesses to address the issue of the appropriate mechanism for independent review of past gay and transgender hate crimes.

 

Therefore, while the Committee has not agreed to support a Royal Commission at this stage (which was the main recommendation in my personal submission, published below), it has left the door open to recommending a Royal Commission or some other form of independent judicial inquiry in the future.

 

Perhaps just as interesting are the recommendations that had been featured in the draft report, but were removed at the behest of Committee members (as detailed in the minutes of the Committee published in an appendix).

 

Thus (Christian fundamentalist) Labor MLC, Greg Donnelly, moved that the following recommendations be axed:

 

That the NSW Police Force, in meeting Recommendation 3, increase the time currently allocated to the training of new policy recruits in modules relating to lesbian, gay, bisexual, transgender, intersex and queer (LGBTIQ) people.

 

That the NSW Police Force implement a program of ongoing education modules relating to lesbian, gay, bisexual, transgender, intersex and queer (LGBTIQ) people for all officers and other employees.

 

That the NSW Police Force increase the number of specialist Lesbian, Gay, Bisexual, Transgender, Intersex and Queer (LGBTIQ) Liaison Officers, particularly in rural, regional and others areas that do not currently have access to such officers.

 

That the NSW Police Force implement a new service to enable lesbian, gay, bisexual, transgender, intersex and queer (LGBTIQ) people to more readily access the services and support of a specialist officer to make it easier to report crimes or seek the assistance of police.

 

Christian Democrat MLC, Fred Nile, also caused the following recommendation to be removed:

 

That the NSW Police Force change the name of the Gay and Lesbian Liaison Officer program to the Lesbian, Gay, Bisexual, Transgender, Intersex and Queer (LGBTIQ) Liaison Officer Program.

 

Meanwhile, National MLC Trevor Khan (who is usually an ally for the LGBTI community) moved that the following recommendations be axed:

 

That the NSW Attorney General issue a reference to the NSW Law Reform Commission to require that it undertake a comprehensive review of the law of homicide and homicide defences in New South Wales to ensure that recent legal reforms have effectively removed any potential for injustice to occur.

 

That the Judicial Commission of New South Wales review the content of jury directions to ensure that they adequately ensure the fair and equal treatment of lesbian, gay, bisexual, transgender, intersex and queer (LGBTIQ) people and acknowledge the historical legacy of the ‘gay panic defence’.

 

Thus, while the interim report itself is not bad – recommending further investigation by the next Parliament, and leaving the door open to a Royal Commission or other independent judicial inquiry – it could, and indeed should, have been a whole lot better.

 

Original submission:

 

NSW Legislative Council Standing Committee on Social Issues

 

Wednesday 7 November 2018

 

To whom it may concern

 

Submission re Inquiry into gay and transgender hate crimes between 1970 and 2010

 

Thank you for the opportunity to provide a submission to this important inquiry.

 

I do so as a long-term advocate for the rights of the lesbian, gay, bisexual, transgender and intersex (LGBTI) community, including for the past six years in New South Wales.

 

However, this timeframe means I did not live in NSW during the period 1970 to 2010. I consequently do not have a personal experience of anti-LGBTI hate crimes in this jurisdiction during that period.

 

Nevertheless, I acknowledge and endorse the work of others, both individuals and organisations, who have documented the appallingly high number of gay and trans hate crimes which occurred here over the course of the past four or five decades.

 

This obviously includes the work of ACON, whose excellent ‘In pursuit of truth and justice’ report is cited in the terms of reference to this inquiry, as well as that of journalist Rick Feneley, whose stories over recent years have finally started to give these crimes the attention, and scrutiny, they deserve.

 

And it includes the work of three former NSW Police employees or consultants – Steve Page, Sue Thompson and Duncan McNab – whose work has confirmed the failure by NSW Police to adequately investigate many of these same crimes.

 

This failure can be seen as one reason, perhaps even the primary reason, why, of the 88 homicide cases identified in In pursuit of truth and justice, approximately 30 remain unsolved today.

 

I therefore welcome the initiative of the Legislative Council in establishing this inquiry, to hear from people who have been affected by these hate crimes, either directly or who have valuable information about crimes committed against others.

 

Indeed, this fits with ACON’s recommendation 1.2:

 

ACON recommends the NSW Government, in partnership with community, undertake a process to comprehensively explore, understand and document the extent of historical violence experienced by the LGBTI community.

 

And also with recommendation 4.1:

 

ACON recommends an independent investigation into the actions of the various arms of the criminal justice system to fully understand the impediments to justice during this period in history, their relevance to current practices, and to identify opportunities to finalise unsolved cases.

 

However, I would argue that, while a positive start, a short parliamentary inquiry is unlikely to be sufficient in and of itself to comprehensively address these issues. I form this view on the basis of the following factors:

 

  • The sheer scale, and seriousness, of the subject matter involved, noting that we are discussing at least 88 homicides, with more that may yet be identified through this process,
  • Remembering that figure does not include the hundreds, perhaps thousands, of additional homophobic and transphobic hate crimes that occurred during this period, including serious and violent assaults, many of which have never been properly documented,
  • The role of NSW Police in failing to adequately investigate many of these crimes (both homicides and assaults), and
  • The allegations of complicity and/or even direct participation by NSW Police members in some of these horrific crimes.

 

Given all of the above, I believe that this subject matter should be investigated through a Royal Commission, which would have the appropriate powers, resources and timeframes to fully explore the gay and trans hate crimes which occurred in NSW over the past half-century.

 

Recommendation 1: That the Committee call on the NSW Government to establish a Royal Commission into the issue of gay and trans hate crimes in NSW since 1970.

 

In terms of the ‘gay panic’ or ‘homosexual advance defence’ and the role it ‘played in the culture of LGBTIQ hate crimes between 1970 and 2010’ and how it ‘impacted the delivery of justice and the treatment of gay men during LGBTIQ hate crime investigations and court proceedings’, I believe it did contribute both to helping to incite these crimes, and in undermining their proper investigation.

 

As I wrote to the Legislative Council Provocation Committee in 2012, calling for the abolition of the gay panic defence:

 

In my opinion, there is nothing so different, so special or so extraordinary, in the situation where the non-violent sexual advance is made by a man to another man, as to justify offering the offender in such cases any extra legal protection. In contemporary Australia, a man who receives an unwanted sexual advance should exercise the same level of self-control as we expect of any other person.

 

To have a separate legal standard apply to these cases is homophobic because it implies there is something so abhorrent about a non-violent sexual advance by a man to another man that a violent reaction is almost to be expected, and at least somewhat excused. This does not reflect the reality of contemporary Australia, where, with the exception of marriage, gay men enjoy the same rights as other men, and are accepted as equals by the majority of society.

 

Even if a small minority of people remain firmly intolerant of homosexuality, that does not mean there should be a ‘special’ law to reduce the culpability of such a person where they are confronted by an unwanted homosexual sexual advance. To retain such a provision is unjust and discriminatory, and is a mark against any legal system which aspires to fairness.

 

The above discussion outlines why the homosexual advance defence is wrong in principle. What should not be forgotten is that the homosexual advance defence is also wrong in practice, or in the outcomes which it generates. After all, the defence does not simply exist in the statute books, ignored and unused. Instead, it has been argued in a number of different criminal cases, sometimes successfully.

 

This means there are real offenders who are in prison (or who have already been released), who have had their conviction reduced from murder to manslaughter, and most likely their sentence reduced along with it, simply because they killed in response to a non-violent homosexual advance. The legal system has operated to reduce the liability of these offenders even when broader society does not accept that such a reduction is justified. As a result, these offenders have not been adequately punished, meaning that above all these victims have not received justice.

 

Similarly, the family members and friends of the victims killed in such circumstances have witnessed the trials of these offenders, expecting justice to be served, only to find that the killer is not considered a murderer under the law. Instead, these family members and friends find some level of blame is placed on the actions of the victim, that somehow by engaging in a non-violent sexual advance they have helped to cause and even partly deserved their own death.

 

The painful ‘lessons’ of the gay panic defence, which were learnt over many decades by the LGBTI community, included the following:

 

  • That the life of a gay man was valued at less than that of other victims,
  • That a non-violent sexual advance by a gay man to another man was abhorrent, and that a violent response to such an advance was at least partially justified, and
  • That the law enforcement and justice systems of NSW were not on our side.

 

These same lessons were learnt by the perpetrators of anti-gay and anti-trans hate crimes. They worked out that LGBTI people made for easy targets, both because we were unlikely to report crimes and, even if we did, that NSW Police were unlikely to do anything about it.

 

Based on the behaviour of some NSW Police officers, including reportedly in the 1989 assault of Alan Rosendale, as witnessed by Paul Simes (see Rick Feneley, ‘Erased from the records; Investigation into bashing of gay man by police in Surry Hills in 1989’, Sydney Morning Herald, 19 January 2015), it seems that they too believed the lives of gay men mattered less than others.

 

It is perhaps unsurprising that, when the law – via the homosexual advance defence – said gay men’s lives were less valuable than those of heterosexual people, some members of the law enforcement arm of government acted in the same way.

 

So, while the abolition of the gay panic defence by NSW Parliament in May 2014 was a major step forward for LGBTI rights in this state, we should not underestimate the damage it caused during its (too-many) years of operation.

 

Thank you in advance for taking this submission into consideration as part of this inquiry. If you would like to clarify any of the above, or for additional information, please do not hesitate to contact me at the details provided.

 

Sincerely

Alastair Lawrie

 

w1-truthandjustice

ACON’s excellent ‘In pursuit of Truth and Justice’ Report is available here.

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.

**********

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.

13 Highs & Lows of 2013: No 13 (Alleged) Police Brutality at Sydney Mardi Gras

As I did last year, I am going to end the year by writing about the highlights – and lowlights – of the last 12 months. As always, choosing the best and worst of the year is a subjective process, and reflects my own experiences as a cis-gender gay man, who engages in LGBTI advocacy, in Sydney. But I hope that the list I have selected is reflective of some of the major issues of 2013, at least in Australia anyway. If not, please feel free to tell me why I’m wrong in the comments section below.

No 13. (Alleged) Police Brutality at Sydney Mardi Gras

Let’s begin by remembering one of the true low-points of this year – the (alleged) actions of NSW Police officers which marred Australia’s, and one of the world’s, premier LGBTI events, the Sydney Mardi Gras, in February and March.

As we approach the end of the year, almost 2 million people, from right around the world, have watched the Youtube clip of the way Police officers treated Jamie Jackson on Oxford St on the night of the Mardi Gras Parade. (http://www.youtube.com/watch?v=wxtFtVfAeeE)

Jamie Jackson Mardi Gras

Others have read about the way long-term LGBTI activist Bryn Hutchinson was (allegedly) treated by NSW Police officers, also on Oxford St after the parade had finished. Now that all charges against Mr Hutchinson, and his sister Kate, have been dismissed by the courts, he has written about his experiences in the Star Observer. (http://www.starobserver.com.au/opinion/soapbox-opinion/my-terror-of-crossing-oxford-street-at-mardi-gras/113785)

But it is important to remember that it was not just these two isolated incidents that left a sour taste in the mouths of many after what is supposed to be a celebration of pride and diversity. Nor were instances of alleged Police brutality confined to the night of the Parade and Party, but instead occurred throughout the Mardi Gras Festival.

In fact, Sydney Mardi Gras and ACON received at least 58 complaints about the way people had been treated by NSW Police over the entire Mardi Gras season. These complaints included allegations of intimidation and aggression by Police on Oxford St after the Parade had finished, reports of homophobic language and behaviour at the main Party, of intimidation, violence, excessive physical force and coercion during drug operations at both the Harbour Party and main Party, and other aggressive and intimidating behaviour in LGBTI venues along Oxford St during the Festival.

Since March, Sydney Mardi Gras, ACON, the Inner City Legal Centre (ICLC) and the NSW Gay & Lesbian Rights Lobby (GLRL) have been attempting to work through these issues in consultation with the LGBTI community. They recently released an advocacy document outlining 12 recommendations to the NSW government, although, with just 2 months left til the 2014 season gets underway, it is currently unclear how many will be accepted by Premier Barry O’Farrell, Police Minister Michael Gallacher and others. (http://glrl.org.au/images/stories/Publications/20131115_policing_at_lgbti_events_and_venues.pdf)

What is likely is that NSW Police will be much better behaved – at least for the 2014 Mardi Gras Festival, Parade and Party. They will be told by their superiors that to repeat what happened this year would reflect badly on the Government (in the media), as well as potentially jeopardising the money that is brought into the NSW economy by Mardi Gras and associated events. They will also be keenly aware that all eyes will be on them come February and March 2014, to see if their poor behaviour is repeated (on camera).

Nevertheless, the real test will come in 2015, 2016 and beyond, when the immediate controversy has died down, media interest has waned, and the temptation will emerge for some elements of the Police (because it should always be remembered that not all Police act poorly) to slip back into the (alleged) intimidation and outright aggression of 2013.

If the majority of the Mardi Gras, ACON, ICLC and GLRL recommendations are adopted (especially recommendations 1-3), then we may see some positive long-term cultural changes within NSW Police, meaning that future Mardi Gras patrons may not suffer in the same way that Jamie, Bryn and others did this year.

But, in my opinion, the two best recommendations for helping to ensure that NSW Police are ‘well-behaved’ at future Mardi Gras events are perhaps the two that are least likely to be adopted by the NSW Government.

The first, recommendation 7, calls for an end to drug detection dog operations. The evidence against the use of sniffer dogs has piled up since legislation was first passed authorising their use, without warrants, in NSW public places in 2001. The 2006 Ombudsman’s Report was damning in terms of their lack of effectiveness, as well as the risks, including health risks, of their ongoing use. In 2011, just 20% of drug dog indications resulted in Police actually finding drugs on the person searched.

The 2013 Mardi Gras experience, especially for attendees of the Harbour Party, simply confirmed the vagueness of what constitutes ‘reasonable grounds’, as well as the gross invasion of civil liberties and indeed bodily integrity involved in a subsequent drug search.

The use of drug detection dogs should end, end of story. And yet, with both the current Coalition, and previous Labor, Governments seemingly addicted to ‘law & order’, that outcome seems incredibly unlikely.

Something which is slightly more feasible is the subject of the other key recommendation (11), which calls for the establishment of a “transparent, representative civilian-led police complaints and investigatory body with the appropriate resources, capabilities and knowledge” to oversee NSW Police. Obviously, such a body would help remedy issues experienced, not just by the LGBTI community, but also by other vulnerable groups across NSW, including Aboriginal and Torres Strait Islanders, young people and people from Culturally and Linguistically Diverse (CALD) backgrounds.

It should be acknowledged that the NSW Government has taken a small step down this path, by appointing the former Commonwealth Attorney-General, Robert McClelland, to review the investigation and oversight of police critical incidents (those where police actions have resulted in the death or serious injury of a member of the community). But this represents just a small sub-set of police actions which should be subject to independent review, and it is undeniably a long, and hard, road from this narrow review to the introduction of a broad-based, independent complaints body. We’ll see what happens on this in coming months (and, I suspect, years).

There is one final comment which I feel compelled to make. In the aftermath of the incidents during this year’s Mardi Gras, some members of Sydney’s LGBTI community focused on the possible involvement of Police officers from outside the Surry Hills Local Area Command. Specifically, they argued that if we could somehow return to a (simpler) time when Surry Hills Police were sufficient to patrol the Mardi Gras, supplemented by others from around Sydney who volunteered to be on duty, then the problems of 2013 would somehow disappear.

To me, that ignores a much deeper problem. If a Police officer is going to behave in an allegedly homophobic and aggressive way on the busiest gay night of the year, on Oxford St, in front of thousands of people, then how are they going to treat an individual LGBTI person, when nobody is looking, in other parts of Sydney, or indeed elsewhere in the state?

I am not interested in just having an LGBTI-friendly Police force serving the inner-city enclaves of Surry Hills and Newtown, while simultaneously ignoring the potential for homophobia outside those supposedly safe borders. Any officer, from any part of the State, should be able to be called up for duty around Mardi Gras and behave in a responsible and respectful manner.

Above all, every single officer, in every single station across NSW, must be able to deal with, and respond appropriately to, the concerns of LGBTI people. If they can’t, they should have their badges taken off them, because they’re not fit to be a Police officer.

Rainbow Crossings? What else have you got?

The City of Sydney held its Rainbow Flag/Crossing public consultation on Tuesday night (July 16th) at Paddington Town Hall.

While I am not the world’s biggest fan of a Rainbow Flag (I think that it would be a ‘nice’ thing for Sydney to have to commemorate the LGBTI history of the city, but there might be better options to do that as well – see discussion below), I went along because the forum also included a panel looking at the most important issues confronting Sydney’s LGBTI community today.

The following are my four main observations about the forum:

1. Who knew that butcher’s paper, hastily scrawled ideas and scribes reporting back to the broader group was still a thing, especially in a room full of more than 100 people? It was certainly not what I expected when I walked in the door (and I still don’t know whether it worked or not).

2. The forum, including a presentation from the person who ‘led’ the Rainbow Crossing movement, probably demonstrated the limitations of that particular form of activism. While chalking is/was a great opportunity to engage different people from across the wider community (and extend the message of acceptance to straight allies), its moment may have passed. And showing photos of Chinese children chalking a rainbow outside rubble, or Vietnamese orphans living with HIV jumping behind a rainbow, might not be as inspiring as you think – it might instead lead audience members to wonder about the much bigger problems which these people face, and which will not be overcome with temporary distractions.

3. There are probably better, although admittedly more expensive, ideas for celebrating the LGBTI community of Sydney than either a Rainbow Flag or Rainbow Crossings. Our table’s (entirely unoriginal) idea was to provide for a permanent LGBTI museum, which could provide an ongoing reflection on the history of LGBTI Sydney, and Australia. I think something might have been lost in the translation of our notes to what ended up on the City of Sydney website on this – whereas we wrote ‘permanent LGBTI museum’ the website describes it merely as ‘permanent space for a museum and exhibitions’. To put it bluntly, we don’t just want the space, we want the funding to help make a museum happen (link to Have Your Say consultation here: http://sydneyyoursay.com.au/GLBTI?module=news#tool)

4. The discussion of the issues confronting the LGBTI community in Sydney today was probably the most interesting part of the night. A lot of worthy ideas were raised (including youth suicide and mental health, discrimination in schools, religious exceptions, transgender services etc). But one issue which was apparently not raised outside our table, and which certainly wasn’t reported on by anybody back to the group (we weren’t asked) was the issue of rising HIV notifications. Less than 2 weeks since the release of figures showing a 24% rise of HIV notifications in NSW in 2012, and an 18% rise in notifications resulting from sex between men (which still accounts for 81% of transmissions in the state), it seemed that HIV notifications, and the enormous challenges which lie beneath it, wasn’t worth much of a mention. I was a little bit shocked by that result (although some older, more cynical heads around the table described it as disappointing but not surprising).

In any event, the failure of rising HIV notifications to register at a community event like this, and especially less than 2 weeks since the data was released, means that there is a lot of work for groups like ACON to do. But just as importantly, I think it means there is a collective responsibility for the gay male community of Sydney to consider why we don’t think increasing HIV notifications is a major issue for our community in 2013.