There is still much work to do

This article originally appeared in HIV Treatment Update, a newsletter published by NAM between 1992 and 2013.
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Positively UK’s Silvia Petretti speaks up at the United Nations.

The UN High Level Meeting on AIDS (HLM) took place in New York in June, to coincide with the 30th anniversary of the recognition of AIDS. It was the third meeting of this kind; previously held in 2001 and 2006. This meeting is important because it establishes the commitment of the UN Member States to addressing the HIV epidemic. The political declarations released in 2001 and 2006 were instrumental in the introduction and scale-up of treatment and prevention across the most affected parts of the world.

As you can imagine, I was extremely excited to represent the Global Network of People Living with HIV (GNP+) at the HLM, and to speak at the closing plenary on the importance of involving people living with HIV in the response to the HIV epidemic. I profoundly believe that our meaningful involvement can make this response much more effective. However, during the HLM I started having serious doubts that an institution with so little female representation could devise a political declaration meaningful to women – nearly 52% of the 34 million people who live with HIV worldwide.

Glossary

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

generic

In relation to medicines, a drug manufactured and sold without a brand name, in situations where the original manufacturer’s patent has expired or is not enforced. Generic drugs contain the same active ingredients as branded drugs, and have comparable strength, safety, efficacy and quality.

mother-to-child transmission (MTCT)

Transmission of HIV from a mother to her unborn child in the womb or during birth, or to infants via breast milk. Also known as vertical transmission.

transgender

An umbrella term for people whose gender identity and/or gender expression differs from the sex they were assigned at birth.

opioid substitution therapy (OST)

Providing users of an illegal drug (such as heroin) with a replacement drug (such as methadone, buprenorphine or naltrexone) under medical supervision. This helps the person reduce the frequency of injections and their dependency on illegal drugs. It is part of a harm reduction approach.

 

 

During the General Assembly, I watched one male government minister or high-level official after the other making solemn declarations on their commitment to HIV; often they came from countries where I knew women and other affected populations get very little legal or political protection. One of the lowest moments was the panel session on 'Women and Girls', where four out of five panellists were men. I was wondering whether they would ever have a session on men who have sex with men, mostly run by women?

In spite of the under-representation of women in the limelight, women had prepared for the HLM by carrying out a virtual consultation; Positively UK, the organisation where I work, co-ordinated its European arm. More than 800 women replied to a questionnaire, translated into nine languages and distributed in 95 countries, in just two weeks. This global consultation made clear the wishes of women in regard to HIV: 

  • Ensure comprehensive and inclusive HIV services that address the visions, life-long needs and rights of women and girls in all our diversity.
  • Eliminate stigma and discrimination, and ensure full protection of the human rights of all women and girls, including our sexual and reproductive rights.
  • Strengthen, invest in, and champion our leadership and equality to ensure the full and meaningful participation of women and girls, in particular those of us living with and affected by HIV, in the HIV response.
  • Empower us to be catalysts of social justice and positive change, and eliminate all forms of violence against us.
  • Ensure full access to information and education, including comprehensive sexuality education for all women and girls.

As you can see, women’s demands were not surprising or unreasonable.

What seems really shocking is that, firstly, our claims are still not being addressed, and secondly, that in 30 years of AIDS, this was the first global consultation among women supported by UNAIDS and carried out by a partnership of NGOs.

In many ways, the Political Declaration to come out of this HLM is a progressive one. Its most important victories are:

  • A commitment to getting 15 million people on treatment by 2015 (80% of the 18 million people who will need it). This is new and a major victory.
  • A call on governments to optimise the use of TRIPS (trade agreements) flexibilities to increase and sustain access to low-cost, generic medicines.
  • A target to reduce transmission among people who inject drugs by 2015, including the use of opioid substitution therapy and needle exchange programmes.

But the declaration has several weaknesses, including:

  • Only four paragraphs dedicated to women, with the only numeric targets relating to mother-to-child transmission and maternal health: women are only important as ‘baby makers’. Our health and prevention needs at all stages of our lives are ignored.
  • Transgender people have not been identified as an at-risk population; funds for prevention, treatment and care for this group will still be difficult to obtain.
  • Men who have sex with men, people who inject drugs, and sex workers are only referenced in relation to their HIV risks; their human rights are not affirmed in the document. Homophobia, transphobia, and discrimination against sex workers – factors significantly heightening HIV risk – are not mentioned.

I came back from New York sad and angry: there is still much work to do. I am still convinced that unless those of us directly affected by HIV are meaningfully involved, the epidemic will not recede. It is up to us to hold our governments accountable and to continue to demand that our human rights are upheld in policy and in action.

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