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This article is part of 50.50’s long running series on AIDS Gender and Human Rights. It was firstly published on Open Democracy on 23 June 2014.

One of the key themes of this year’s International AIDS conference is the centrality of involving key populations in the response to HIV, and to address many of the challenges they face, especially at a legal and policy level. The World Health Organisation  defines key populations as ‘men who have sex with men, transgender people, people who inject drugs and sex workers. Most-at-risk populations are disproportionately affected by HIV in most, if not all, epidemic contexts.‘  WHO also recognises that people living with HIV have to be recognised as a key population in all HIV epidemics.

I have been going to the International AIDS Conferences since 2006 ( when I was awarded a scholarship for the first time),  however this year I am among the many women living with HIV who have found it extremely hard to find funds to attend. So I am watching it from afar and I value this opportunity to comment on it.

I find it puzzling that women are excluded from this definition of key populations, as women in some parts of the world represent 60% of those diagnosed with HIV. For example, in Sub-Saharan Africa where we have the largest populations of individuals living with HIV in the world – nearly 18 million.

If I were at the conference I would make sure to voice my view that within the key population discourse it is critical to maintain a gender analysis, and cultivate an awareness of how issues specifically impact on women. During the conferenceopening plenaryMichele Sidibe, Executive Director of UNAIDS, made a fullcommitment to ending the HIV epidemic by 2030, supported by many scientists and leaders.  One of the milestones on this  trajectory is the commitment, signed off at the UN High Level Meeting on HIV and AIDS in 2011, to halve new diagnosis among people who inject drugs. Such an ambitious goal cannot be achieved unless we look at the specific needs and rights of women who inject drugs.

I am not a social scientist, but I feel I have a special insight into some of the issues because of my direct experience. My youth was plagued by depression, low self esteem, and insecurity, I used drugs, including heroin, from my teens until the time I was diagnosed with HIV at the age of thirty. Drugs were a form of self-medication that helped me deal with the painful emotional state I was in. It is obvious to me now, looking back, how the fact of being young and a woman who used drugs in the sexist Italian society of the 80s, made me vulnerable to HIV.

However, most academic literature that deals with people who inject drugs, does not differentiate between women and men.  Still,  there is good evidence that shows that women who inject drugs have higher mortality rates. They are also often dependent on their male partners to inject them, and because of gender norms, often inject last when needles are shared. Evidence also tells us that women become dependent faster, and engage in more injection and sexual behaviours, including sex work or transactional sex, that lead them to be more vulnerable to HIV than men who use  drugs.  Women-only rehabilitation facilities are rare everywhere – even more so in low and middle-income countries, and women who use drugs often experience discrimination when accessing health care services, in spite of having the same rights as all other women to have children and access to sexual health services. We know that integrated services, which offer opiates substitution therapies, sexual health services, harm reduction and treatment for HIV, Hepatitis, and  TB – and that are not discriminatory – can be a life-saver for women who use drugs, allowing them to take care of their families and communities. However those facilities are not common.

It is incredibly hard to leave drugs behind. For me, receiving an HIV diagnosis seventeen years ago was a wake-up call. I had to decide if I wanted to live or die, and I felt an urgency to make sure the little life I thought I had left was meaningful, and worth living. I was able to survive and thrive, thanks to the excellent care and support I received in the UK. Not only did I have access to high quality medical care, including free anti-retroviral medication (ARVs),  I also had an incredibly  important source of support from the peer-led women-only services offered by Positively UK(then called Positively Women). What made the organisation special was not only that it was offering services led by women living with HIV, but that it had been set up by two women living with HIV who used drugs – Sheila and Jenny. For me it was a living example that women with HIV, including women who use drugs, can be creative, resourceful and resilient in playing leadership role in the response to HIV.

Eventually I started working for the organisation, initially offering support to women in prison and to women who use, or have used drugs. Over more than 15 years of working with Positively UK, I have seen very closely how women who use or have used drugs continue to live under the huge burden of stigma. While others could be seen as ‘victims’, we carry, in the eyes of society,  the shame of having ‘brought this horrible illness to ourselves’. The emotional impact of this shame can often be crippling, and for many of us it has taken many years to get to some sense of dignity and stability.

Last November I travelled to Russia, a country with a huge and fast growing HIV epidemic driven by drug use, and a government that refuses to address it and keeps promoting punitive and ineffective laws.  During this trip I was in St. Petersburg , working with the local women’s network EVA, training women living with HIV to facilitate peer support groups, using the SHE toolkit. Once again, I witnessed the damaging weight of shame, stigma and judgement experienced by women living with HIV. On the path to becoming leaders in their own communities, the women I was training, like me, had to fight an ongoing battle. A battle to feel that we have a right to be who we are, a right to be respected, a right to have a family, and that we are entitled to live our lives with love and acceptance. In order for us to fight this battle and stand up for our rights, we still need safe spaces to develop our confidence and voice. But those spaces are becoming rarer, as efforts and resources are channelled into promoting scale-up of ARV medications alone, without the psycho-social support programmes required to support our taking them. We need and demand access to free HIV treatment for all, however we need more than pills in order to live our lives fully and play a role in our communities.

As I watch the International AIDS Conference from afar, I am concerned that the gender lenses on key populations are not being used as much as they should be. In the list of sessions dedicated to injecting drug users, only two out of thirty-one are dedicated to women who inject drugs.

As women who use drugs, this is not about being in competition with other minorities who are also oppressed. It is in full solidarity with the LGBT community. Challenging gender norms in HIV prevention and treatment, and promoting women’s rights go hand in hand with questioning notions of femininity and masculinity.

I wish I could be at the Melbourne AIDS conference to say these things in person. Failing the funding to be there, I am glad to be able to share them here.

 

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3 thoughts on “Women who use drugs: resistance and resilience in the face of HIV

  1. Hi Sylvia
    As always, thank you for this moving view of someone who feels the “stigma and judgement experienced by women living with HIV”.

    I share your puzzlement that “women are excluded from [UNAIDS’] definition of key populations”, especially in sub-Saharan African countries, for example, Kenya.

    The 60% figure you mention may well be true when generalizing over very different country epidemics. For example, in Nairobi, there are about three HIV positive men for every five HIV positive women.

    But in Central Province there are fewer than two HIV positive men for every five HIV positive women and in the northern part of the Eastern Province there is only one HIV positive man for every five HIV positive women.

    In sub-Saharan Africa HIV is, and always has been, a higher burden on women. Yet we don’t hear enough from women’s organizations about this bias. The stigma and discrimination that HIV positive females feel is shared by all females in some of the worst hit areas. It is not limited to those who use drugs or sex workers.

    There are places in South Africa where over 40% of females of a certain age are infected with HIV. UNAIDS have not even got around to explaining how this could be so, especially considering many of them have only one, HIV negative partner.

    So it is good to hear you highlight this, even though you haven’t been privileged to attend this year’s junket! I hope you keep raising this issue at every opportunity, whether the audience is big or small.

    Thank you again
    Regards
    Simon

  2. Thanks for your kind words Simon and for continuing reading my blog. The figure of approximately 60% is for the whole of Sub Saharan Africa and indeed it is an average so in some parts it is higher and in some lower.

    Thanks for sharing more details about the epidemic in Kenya

    Silvia

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