|Photography by Christina B. Castro|
The funeral was on a stifling January day in Sydney. The formal, stiff clothes I had put on that morning were damp and limp within minutes outside the air-conditioned car. I greeted the few people I knew who were milling outside the chapel awaiting the arrival of the family and the undertaker’s car.
The coffin, when it arrived, was white and engulfed by flowers. But I knew what was inside. The autopsied body of my friend and colleague, Laura.1 Laura had hepatitis C and died of a heroin overdose. Because of the circumstances of her death, an autopsy was standard. Because of her hepatitis C status, her body would not have been reconstructed following autopsy. I had sat in meetings with doctors and bureaucrats where this practice and the unnecessary distress it caused families was discussed.2 The contrast between my image of what may lie in this white box and the beautiful array of flowers atop it made my stomach turn.
That moment was a key part of an ongoing journey to recognize and advocate against the hypocrisy of drug policy and discourse that allows and perpetuates loss of life and many other harms. Much of what I have to say has been said many times by people who use drugs. But I also recognize that I have a different and more legitimate voice, though not as powerful as I would like.
The evening of the funeral I was slumped on the lounge, channel-surfing. I felt assaulted by the brutal irony of adverts for nicotine replacement products. How we celebrate the intentions and achievements of people trying to quit smoking cigarettes. Look, here’s a new product to choose from, designed to provide another option to suit your personal preference—and hey, we understand that those preferences may change from quit attempt to quit attempt. People who try to give up smoking are doing a positive thing for their health and society. Let’s as a society praise them and throw them resources from public, non-government, and commercial sectors.
But many people who inject drugs and who also care about their health are not so celebrated. Going to a needle and syringe program (NSP) to access sterile injecting equipment is derided in popular culture and in politics. In 2006 the then Australian Opposition Leader attacked the Minister for Health by exclaiming, “You give free needles to addicts.” It is no surprise to see the return of such blatant political posturing in the post-HIV crisis era. Government-funded safe sex campaigns designed to prevent HIV and other sexually transmitted infections among gay men use explicit, sex-positive messages and images in their campaigning. Such liberties and self-determination, however, are not extended to drug user organizations in their quest to prevent hepatitis C. The history that people who use drugs are brave and responsible and caring has been obscured. The emphasis is on the brave actions of politicians in implementing a new and controversial service amid the risk of community backlash: the priority of HIV prevention was bigger than politics. Yet HIV would be a major public health problem for the wider community today if people who injected drugs had not changed their injecting practice in response to the new HIV-risk environment.
This absence of consumers and users from public discourse plays out in many ways. Daniel Wolfe has written of the double-binds and paradoxes in systems (like drug treatment) that often create behaviors reinforcing stereotypes of people who inject drugs.3 People on methadone or other substitution treatments are derided for their lack of will power in failing to kick the habit. Their efforts in overcoming the many obstacles to accessing methadone are not noted or celebrated. People who inject drugs have to bend the truth, present in a particular way at services to get what they need. Thus when a man lost his methadone prescription with his passport, the passport was eventually replaced, but there was no other legal way for this person to access methadone. Likewise, when on another trip, a flight was delayed; the person in need of methadone was faced with the choice of painful withdrawal or scoring heroin and, very likely, unsterile injecting equipment on the streets of an unfamiliar city in a developing country in order to stave off withdrawal.
It is a tired old argument—injecting drug use is illegal and therefore not the same: drug users deserve what they get because they chose to break the law. There is a tired old response—that what we deem to be illegal today is the result of historical artifact. Remember prohibition? Remember the common sense that finally prevailed to bring to an end a costly, devastatingly harmful, and failed law. But some issues just might be evidence-proof—just politically too hard; and it is difficult to make a point on the world stage about the ugliness of such drug policy.
And where do we start in any effort to point out hypocrisy? A large proportion of people who seek treatment for drug dependence report a traumatic childhood experience. Drug use may have been a respite for them when other supports were absent or inadequate. There comes a moment in those children’s lives when they are punished, stigmatized, and often incarcerated as a result of this earlier societal neglect and failure. Drug use, drug dependence, and drug treatment are complex and variable. No one starts out as drug dependent or aspires to be so. Most people who use illicit drugs do so once, a few times, maybe a little bit more, but they keep it together enough to pass and even at times excel in mainstream society.
There are many people and families who have experienced the heartbreak of overdose and who do tremendous work in railing against these preventable losses. The time has come to recognize that our drug policies need changing, to prevent much suffering as well as unnecessary tragedies from drug overdose.
1. A pseudonym has been used to protect privacy.
2. This practice was recognized as discriminatory and finally ended by the New South Wales Minister for Health in September 2012.
3. Wolfe, D. 2007. “Paradoxes in antiretroviral treatment for injecting drug users: Access, adherence and structural barriers in Asia and the former Soviet Union.” International Journal of Drug Policy 18: 246-254.
CARLA TRELOAR is Professor, Deputy Director and Head of the Hepatitis Research Group at the National Centre in HIV Social Research at The University of New South Wales. Carla is also a member of the NSW and the Australian Ministerial Advisory Committees on blood-borne viruses and STIs and a member of numerous advisory committees for government, health agencies, and non-government organizations.