Not So Bloody Difficult: An Exploration of HIV and viral hepatitis

An dramatically abbreviated version of this is going to be published in my workplace's upcoming "Good Liver" quarterly magazine. A draft exploration covering some of these issues was published on an earlier blogpost of mine here. In my next blog post, I intend to discuss some of the executive decisions that were made around edits, and what that indicates about my own next steps around the work there is to be done in public health and health promotion.

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Not So Bloody Difficult: An Exploration of HIV and viral hepatitis

Leading up to the largest ever upcoming international conference on HIV/AIDS, called “AIDS 2014”, to be hosted in Melbourne this year in July, it seems a fitting time to offer this piece to consider the similarities and differences between HIV & viral hepatitis, and to apply some of the lessons from a relatively well-resourced Australian HIV sector (compared to hepatitis sector) to address the ever-increasing burden of liver disease largely attributable to living with chronic viral hepatitis.

HIV

HIV stands for Human Immunodeficiency Virus, a virus which attacks our immune system, lowering our white blood cell count and making the person extremely susceptible to otherwise innocuous diseases. When the immune system has been sufficiently enough compromised, the person may be declared to have a syndrome called the Acquired Immune Deficiency Syndrome, known as AIDS, which has famously led to too many early deaths from opportunistic infections for too many people in Australia and globally. 

In Australia, HIV is largely transmitted through unprotected anal sex between casual partners of unknown status, particularly between gay men and other men who have sex with men. Fortunately, since there has been greatly improved access to medications, it is these days extremely unlikely that HIV positive people in Australia will ever get AIDS.

Comparing HIV and Viral Hepatitis

HIV was identified about a half a decade sooner than hepatitis C (which was once known as “non-A, non-B” hepatitis). 

Also, there is a “neatness” to HIV and the way it is understood which is not so true for the many forms of viral hepatitis. For example, you either have HIV or you don’t. You are either HIV positive or you are HIV negative. If you have it, you will not clear it, either on your own or with treatment. There is no vaccine. 

On the other hand, there are 5 known types hepatitis viruses: hep A, hep B, hep C, hep D, and hep E. Each of them has different window periods for accurate testing, differing forms of transmission, different courses of treatment, variations on whether they are short-term (“acute”) or long term (“chronic”) which is partially dependent on factors such as age and gender, and different possibilities for clearance as well as reinfection. Some hepatitis viruses can be vaccinated against (hep A & B, which can impact also on D), and others you cannot (hep C and E). 

To complicate things even further, the term “hepatitis” itself is usually used as a shorthand to mean “viral hepatitis”, even though it literally just means “inflammation of the liver” which can be caused by any number of factors, of which viruses are but some. Inflammation of the liver can be caused also by abuse of alcohol and certain other drugs and medications, fatty liver, or our immune system mistakenly attacking our liver. 

From my perspective as a health professional, the dizzying complexity of hepatitis viruses also means an equally dizzying complexity of strategies for working with an extremely diverse range of communities who are affected by hepatitis in Australia. Whereas HIV, in Australia, is primarily endemic in the gay community primarily from unprotected anal sex with casual partners, viral hepatitis affects and is endemic in a much broader range of communities, including Aboriginal and Torres Strait Islander people, people who inject or who have ever injected drugs, imprisoned people, many people of Asian, African, and Southern/European-heritage from high prevalence countries, and many young people who inject or do backyard tattoos.

From my own perspective as a community member of Malaysian-Chinese heritage and as a gay man, I have certainly seen a significant amount of hepatitis B in my broader ethnic community as well as HIV in my gay community. The implications of this statement go beyond simple posturings as a health professional seeking to eradicate these viruses on a “population level”. The endemic nature of these viruses in my communities has affected the very evolution of community cultural identity and practice.

In Australia, many gay men have died from AIDS-related illnesses attributable to living with HIV during an era of extreme homophobic stigma and discrimination. Compared to a broader heterosexual community, gay men have literally lost nearly an entire generation of elders, with the consequent loss of cultural adventurism and wisdom. This is even before we consider the impacts that HIV has had on monopolising the resources of gay men not only in terms of cultural production, but for a significant time strictly in a focus on mere survival. The “gay plague”, as HIV was colloquially known, continues to have trickle down effects to this day. For example, for many straight people, the worst fears of unprotected sex, aside from a usual gamut of sexually transmissible infections, would be unwanted pregnancy, and hence, the unpreparedness about bringing forth of new life into this world. For gay men, as an inherited memory from the years of AIDS, our worst fears of unprotected sex have to do with a confrontation with individual and generational death.

With regard to viral hepatitis, we know that liver diseases are implicated in all sorts of individual problems, including those which affect our mental health. In Chinese medicine, the liver organ system is sometimes likened to a “general of an army”, and its associated emotion is anger. Just as every army needs a general, from this perspective, anger is not necessarily seen as an unhealthy emotion; A well-functioning liver is as a healthy “general” who commands and channels anger into its “healthy” forms; for example, in the willingness to both witness and appropriately respond to injustice, or even in the non-violent but stern responses to a misbehaving child. 

The consequent problems of having an unhealthy or damaged liver, including and especially that related to or caused by viral hepatitis, can be the correlated inability to attend to anger. What I have witnessed in those in my community with severe liver health problems from viral hepatitis is sometimes a swinging to and fro between a profound lethargy and an extreme, almost impotent rage, with no direct object of this rage. For so many marginalised communities who bear the disproportionate burden of living with viral hepatitis, the implications of this sort of “unhealthy” anger, or perhaps improperly channelled anger, can of course be disastrous. 

While the scourge of HIV-related stigma, still existent, has at least lost its edge of the illegality or criminality of homosexuality, hepatitis C continues to implicate the people living with it with illegality, criminality. One of the more challenging aspects of this too, in considering the ever-evolving climate of effective curative treatments, is that a significant part of dealing with the stigma of living with, or once living with hepatitis C, is in the individuation of behaviour change (i.e. “I used to inject”, “it is all in the past”, “I was young and foolish with my experimentation”). This differs, for example, from a good number of people living with HIV and in the broader gay community, in that there is less of a denial of the legitimacy of gay sex in itself, with a huge community-led push to decriminalise and destigmatise homosexuality, and to question the pathology of homophobia.

Moving Forward

Jeanne Ellard and Jack Wallace, two researchers from the Australian Research Centre in Sex, Health and Society, have written excellent working definitions of “stigma” and “discrimination”:

Stigma is “characterised by experiences and/or feelings of shame, social exclusion, rejection, blame and adverse social judgements about an individual or group,” while discrimination “involves actions by individuals or institutions to explicitly treat individuals or groups with particular characteristics in an unequal or adverse manner with denying someone employment or access to health care on the basis of [some characteristic or assumed characteristic of these individuals or groups, with] race and sexuality as key examples.”[1]

Elsewhere, Dr. Max Hopwood has written about the ancient Greek origins of the term ‘stigma’, “used to describe the signs that were cut or burnt into a human body to mark a person as someone of unusual or bad moral status. The bears of these stigma-signs were slaves, criminals and traitors, people to be avoided, particularly in public places.”[2]

It is incumbent upon us, given the origins of the term “stigma” and its literal associations with slavery and criminality, that we commit more fully to a program of abolition of the cultural and political environments which “enslave” people to their disease, and which criminalise people for what should be seen as more significantly a health, rather than strictly moral, issue of injecting drugs.

It is striking that, by numbers alone, viral hepatitis affects 17 times more people than HIV, nearly double the number of people with dementia, 10 times the number of people diagnosed annually with breast cancer and prostate cancer combined, and are the leading causes of the fastest increasing and preventable form of cancer in Australia (liver cancer). 

Just as decriminalisation of homosexuality (and sex work) has been highly correlated, locally and internationally, with the proper controlling, lowering and managing of the rates of HIV seroconversion in priority populations, one strategy to address the burden of hepatitis, particularly of hep C, is to speak out against the stigmatisation and criminalisation of drug use, which would include the positive consequences of this for cultures of imprisonment, both in the reduction of drug-related imprisonment, as well as in the ideal inclusion of safe injecting facilities and needle and syringe programs in correctional facilities. 

I offer this piece in order to apply some of the wisdom generated within a relatively well-resourced HIV sector in Australia (compared to working in viral hepatitis) to apply to the ever-increasing burden of chronic viral hepatitis and liver disease among marginalised communities. 

Marginalised communities need not remain marginal; we are repositories not only disease, but also of wisdom, and of possibility.

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[1] Ellard, J. and Wallace, J., Stigma, Discrimination and Hepatitis B: A review of current research, Australian Research Centre in Sex, Health and Society, La Trobe University: Melbourne (2013), p8-9

[2] Hopwood, M., “Stigma: an overview”, paper presentation at ‘Workshop 19: Equitable access? Acting on structural and organisational discrimination faced by people affected by hepatitis C and HIV’, at Consortium for Social and Policy Research on HIV, Hepatitis C and Related Diseases, 30 May 2007, Cockle Bay, Sydney

HIV Prevention for Gay Men (in Australia)

I wrote this piece October 2010...

So the situation around the industrialised world
is that HIV seroconversion rates are generally rising again
in gay men (and other men who have sex with men, or "MSMs," to use HIV Educator parlance...)

I reckon that HIV prevention work has become stuck in a bit of a defeated, lethargic deadlock...
Our work needs to become more 'holistic'...
in that, even though we understand that the biological transmission of HIV
occurs within the context of specific ACTS,
and often confined disproportionately to specific 'at-risk' groups of people (MSMs, injecting drug users, sex workers (though not so much in Australia), and migrants from high-prevalence countries),
we cannot remain oblivious to the contexts and social circumstances
which condition the possibility for these acts to occur,
and indeed, precipitate the emergence
of even the desire to act in the ways we do...

In other words, we need to question the biological reductionism/determinism
implicit in hegemonic forms of HIV prevention,
which pay only lip service
to the idea that interventions should come in ways
that would be 'culturally appropriate' for the communities targeted

We know:
Unprotected anal sex with casual partners is increasing among gay men...
This is correlated with a rise in HIV infections,
though they have stabilised in the past few years here in NSW...

There is a lack of vision, I believe,
among the 'old guard' of HIV educators,
who see a reduction in HIV seroconversions as too lofty a goal
and who are content to celebrate the stability of seroconversions
at a rate that is EXTREMELY low, by world standards.

Yet, I believe:
If gay men are increasingly choosing not to use condoms,
our JOB as HIV educators is not only to help look for or name
other methods of HIV Risk Reduction Strategies (RRS)
to assist these men in making safe(r) choices about their sex lives
given their CURRENT sexual decisions in the contexts and cultures they exist...

It is ALSO our job to question and interrogate
the cultures in which unsafe behaviours become desireable
the cultures which precipitate and give rise to the
desireability of these behaviours...
in particular, and especially
unprotected anal sex with casual partners.

No, our job is not to be moral police, of course...
However, we do need to start talking ethics.
Our work needs to be informed by ethical conversations.

Should we remain forever amoral about gay men's sexuality?

I suspect that many of us have become wedded
in significant and unacknowledged part
to the continuing existence of HIV
to justify continuing in the line of work that we have become most familiar with.
many of us have had the experience of being sexually active gay men
synonymous with HIV
and, as such,
may well perceive the discontinuation and eradication of HIV
as a legitimate threat to community.

I write this not to mock or to belittle
...
this is not a cultural trend that is unique to gay people;
it does not make us uniquely pathological...
the experience of victimhood-as-identity is a real, complex reality for many of us,
and indeed, there is even an intelligence in this:

For one, and this is the most obvious one,
we have been and are often still victimised...!
We are victimised by homophobia, internal, interpersonal, and institutional
that make it such that the unique health concerns we have
are stigmatised, marginalised, or ignored completely.
For some of us, perhaps even a whole generation of us,
many of our partnerships, friendships, and even the experience of full participatory citizenship
have been based on organising around this victimhood, and in spaces that existed BECAUSE we were marginalised.

There are REAL, psychological traumas that we can and will face
should we be willing to question this weddedness...
Though I believe that the time is right to do just this,
and rigorously,
we need to do it with a lot of patience,
naked honesty, compassion.

Should we be able to do this,
and by this, I reiterate to mean:
rigorously addressing our ressentiment identities with
patience, honesty and compassion;
we may arrive at some interesting insights.
I will share some that I have come to:



1. As gay men, we are male-socialised

This means that we are socialised into patterns of self-understanding and behaviour
which often take on the form which we believe
will legitimate our claim to rightful masculinity
this can look like
having a lot of diverse sexual experiences
with a lot of different people
which we may associate not only with physiological pleasure,
but also with masculine-gender approval... and these two pleasures
are not necessarily separable...
Some of our risk-taking behaviours
may conform with our own deepest notions and expectations
of ourselves as men...

At the same time, there is an increasing over-reliance
on certain types of technologies and discourses
in order to bolster this sense of our gendered selves
which may actually, in my opinion,
be becoming incredibly toxic.

For example, the increasing abuse of viagra to treat erectile dysfunction,
the chronic abuse of alcohol and other mind-altering substances in order to engage a sexual freedom/release from the social constraints that hold us back from what we believe to be our gendered/animal-authenticity,
in order to be and remain hard,
in order to associate our "presence" in sex to be deeply associated with hardness,
vigour,
athleticism,
etc.

Yes, these lead to high risk behaviours.
I believe we need, AS HEALTH PROMOTERS, to interrogate and question the ways that our culture has been forming around androcentrism, misogyny, and an unhealthy over-fetishism of hard, racist and sexist masculinity.
It is not enough to simply state, "these are the acts that men are engaging in... now how can we ask them to do it more safely?"
It is important for us to ask questions of Why?
and to not accept that the typical qualitative responses of "for pleasure" are enough...
We must be willing to dig deeper,
"And what is the role of pleasure in our lives? What, if any, is our entitlement to pleasure? Where does that come from? Is pleasure the most central goal in our sex lives?"


If we interrogate ourselves in this manner, we may find out some things, which will require further interrogation...:

a. As human beings, we are typically fettered by our attachments to pleasure and avoidance of pain. For gay men (in Sydney), these attachments express themselves in certain patterns unique to our experience here... We can trace patterns of consumption, attitudes, behaviours that may well indicate the nature of these attachments.

Are there institutions, spaces, and health promotion ideas that can be uniquely suited for gay men to address this issue in a safe way?


b. This interrogation is OUR JOB IN OUR OWN LIVES AS GAY MEN. We need to do this for ourselves first and foremost, and in an ongoing way, before we can even consider this as a viable stance for others.


c. This is also our job as HIV Educators.



2. The strategic mobilisation to promote the use of condoms among MSMs was revolutionary.

This revolution was based on a number of different circumstances:
--> People were dying of AIDS(-related illnesses),
and this was debilitating and confronting...
--> Condom use was NOT ALREADY NORMATIVE in our sex lives
--> Culture at large was not particularly accepting of homosexual sex in the first place.

Mobilising around condom use amidst these circumstances has led to several equally revolutionary outcomes:
--> Fewer and fewer people getting infected with HIV
--> The concept of the gay community increasingly being taken seriously by government (at least in Australia)
--> The concept of "gay health" being more accepted as a legitimate concern not only to public health officials, but also to gay men ourselves (that our health was worth thinking about and mobilising around)
--> A proliferation of the discourse of gay sexuality and non-normative gay relationships being taken more seriously

Given that this original mobilisation around HIV/AIDs and condom use was disproportionately headed by gay men ourselves (along with our wonderfully supportive allies), this was truly the synthesis and formation of a powerful new ethics and politics of sexuality.

We noted:
Our sexual behaviours, in their current, unfettered forms,
are killing us.
We need, thus, to CHANGE OUR BEHAVIOURS
and fuck what society thinks, we NEED THE MONEY TO FUND THIS MESSAGE.


Now that is some powerful stuff.

However, at this point, at least here in Sydney, I believe we have grown lethargic and complacent, even "impotent" in our efforts.
Now that HIV is less of a death sentence,
and, at least here in Australia, free/extremely cheap and highly subsidised anti-retroviral treatments mean living longer, healthier lives with HIV,
this is correlated with increasing risk-behaviour among gay men...
More and more gay men are engaging in unprotected anal intercourse with casual partners (UAIC) at least some of the time.

In Australia, although seroconversion rates have remained stable since 2007 (around 1000 a year),
they are about a third higher than they were at their lowest point in mid 2000s (the highest ever was in the mid-1990s).

What we do know is that gay men have been engaging a wide variety of different non-condom-based HIV Risk Reduction Strategies (RRS) to inform our sexual decision making around unprotected anal sex.

These include:
Serosorting (choosing partners of the same HIV sero-status as yourself)
Negotiated Safety (HIV negative partners choosing to have agreements in their relationship to have unprotected anal sex with just each other, conditioned also by getting tested both during and after the window period of their last unsafe sexual encounter, and with a commitment to ongoing communication and re-negotiation of the agreements in their relationship)
Strategic Positioning (choosing to top instead of bottom, as this poses a marginally lower risk of getting HIV)
The use of Undetectable Viral Load (in HIV+ guys),
and Withdrawal from fucking before ejaculation
in order to lower the risk of a seroconversion happening between partners.

This is all fine, and good, and important to engage and talk about as health educators.

But I believe that it is pathetic that we imagine, as health educators, that this is going to be either especially revolutionary, or even especially efficacious in our efforts.

Why?

One...
Gay men have been doing this from the beginning, albeit without naming these strategies with the 'industry' terms as I have defined them above. By simply naming these strategies as a reality, we are not exactly calling for a shift in behavioural patterns en masse into lower risk behaviours.

Two...
While the correct use of Risk Reduction Strategies may lower our collective risk for another explosion of seroconversions in our communities, I do not believe that this is a brave enough goal. Nor, if it is true that gay men are ALREADY employing these strategies, is this even a GOAL for HIV educators.

Of course, I recognise that circumstances have changed since we first mobilised around condom use:
--> Fewer and fewer people are getting, let alone dying of AIDS(-related illnesses) in Australia
--> Condom use IS NORMATIVE (a majority of gay men use condoms a majority of time with a majority of their partners)
--> Culture at large is increasingly accepting (though not fully) of homosexuality

It is NO SMALL FEAT that seroconversions are not only stable in New South Wales, but also at an incredibly LOW level... (at a rate of about 1:14, when we compare with what is going on in the USA)

Still, I believe we can have loftier goals for HIV education.

When Michel Sidibé, the Executive Director to UNAIDS, came to visit Sydney recently, he praised the Australian response to HIV for both our grassroots movement as well as our government's swift cooperation with gay activists and commitment to harm reduction.

Sidibé ended his speech by suggesting a goal for New South Wales:
To completely eradicate seroconversions.

I take this very seriously.

Is this possible?

Let us dream this.

What would it take?

It would take a revolution in our community, and this is, as I said before, not only about addressing sexual behaviours, but also interrogating the cultural reasons we are wedded to specific behaviours as some of the most authentic expressions of selfhood.

I am expediently taking the stance:
OK, let's not immediately make a commitment to behavioural change as a community.
But let us promote and FUND dialogue, not just in our gay communities,
but with EACH OTHER as health educators,
around the issue of ethics and pleasure.
Let us stop fetishising either extreme of sexual conservatism or sexual liberalism as inherently appropriate approaches to sexuality. We also know that condom-based harm reduction alone is no longer the middle way for health promoters.

So now what?

I believe we need to start focusing on advocating for many other things.
HIV should be one of a whole gamut of health concerns that we should consider in a broader umbrella idea of "gay health."

This means we need to address, AS HIV Educators, not only high risk BEHAVIOURS,
but also high risk CONDITIONS & CIRCUMSTANCES.
We need to dare to devote a lot more of our $ that is being designated to HIV prevention into SOCIAL JUSTICE and holistic health needs.
We need to address bullying, homophobia, legal barriers to full equality (in marriage, military, property laws, etc.).
We need to address our drug addictions, our sex addictions, our ressentiment.
We need to address ongoing oppressions from within and from without our own community, including homophobia, transphoba, sexism, ableism, adultism, racism, classism, and so on.
We need to address white supremacy, male supremacy, capitalist/bourgeois supremacy, etc.
We need to listen to the voices of young gay men
who are saying, quite loudly,
that we want not only the sexual freedom and liberation that we are grateful to previous generations for having won for us, in terms of the liberalisation of sexual choices,
but we also want emotional security, friendship, intimacy.
We are upset about the ways that urbanised, consumer gay culture is intoxicated by sex. We are upset about how young men's beautiful bodies are exploited for marketing and selling us gay badges. We are angry about entering a working world which demands our physical, emotional, and intellectual labour but promises us not satisfaction but exhaustion and intoxication.

If we are serious about HIV prevention
we must recognise that preventing HIV is only of marginal interest for most gay men in our lives. HIV no longer = Death, which is AMAZING.
At the same time, No-HIV does not = MORE LIFE either.

Far more important to me, as an HIV Educator
to promote a life worth living,
not just a disease worth preventing.