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Friday, June 6, 2014

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.


[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

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