Stigma is a terrible thing. It is the basis for treating people differently based their perceived belonging to a group, rather than their individual merit. If that different treatment were an advantage, it might be a good thing but more often it is a disadvantage. In a fair society nobody should be treated differently because of perceptions about them, whether those perceptions are good or bad. We call this unfair treatment, discrimination.
Access to an effective cure for hep C is a great step forward. The next step is to encourage everyone who is affected to come forward for treatment. Fear of discrimination is disincentive for people who have been diagnosed to visit a clinic, or engage with their hepatitis C in any way. It is a major disincentive for people who may have hepatitis C to come forward for testing. In short it leads to worse health outcomes for the people who most need medical assistance. People who have been repeatedly discriminated against may shun the entire medical system.
Hepatitis C, through its intrinsic connection to injecting drug use, is also highly stigmatised. Injecting drugs is one of the most highly stigmatised activities in our society. Of course there are lots of ways in which hepatitis C is transmitted including: medical procedures in unsterile conditions, blood transfusion before the blood service commenced screening, vertical transmission from mother to child; household transmission on toothbrushes, razors and clippers; and transmission during sex (especially for HIV positive gay men involved in certain esoteric practices). But there is no getting away from the fact that the vast majority of transmissions come from sharing needles or other equipment used to inject drugs, even if that was only once, thirty years ago.
Many of those who seek treatment for their hepatitis C don’t want to talk about it publicly because they may be discriminated against. For many it reminds them of a long forgotten period in their history or painful memories of addiction. People who currently inject drugs have learnt to be cautious who they tell, because it is often not well received.
The numbers of people with hep C are huge but the silence surrounding it creates the impression that it is a rare thing. I am continually surprised by people I have known for years disclosing their hep C diagnosis to me. Because of the silence, the average person tends to have very little accurate knowledge about hep C, except that it sounds very, very scary.
Over the years I have seen attempts to “smoke screen” the role of injecting drug use in hepatitis C transmission behind some of the other more “palatable” modes of transmission. There is no doubt this is helpful to some people who don’t want to admit to injecting drugs, but does it really help to break down stigma and discrimination? I don’t think so.
Hiding behind the “smoke screen” sends a signal that we have something to be ashamed of. It suggests internalised stigma, which is really saying “I’m not like those people”. But what’s to be ashamed of? The world is full of drugs, some of which are legal and some are arbitrarily illegal. Whether we take drugs now or have in the past, whether we smoke, swallow, drink snort or inject them, does not make us a bad person and drugs are not inherently harmful. The lesson we can learn from 30 years of the HIV epidemic is not to shy away from those who seek to discriminate against us but to meet them head on and say “see me for the person I am not my disease”.
The views expressed above are mine alone and do not necessarily reflect those of my employer