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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