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AIDS and adolescents: denying access to health

With a 50% increase in AIDS-related deaths among young people, AIDS is now the second leading cause of their deaths. At the conclusion of the AIDS 2014 Conference, Alice Welbourn is left wondering whether anything is going to change in the HIV world for young women - and their children.

This is the 10th article in 50.50's series on the World AIDS 2014 Conference which concluded in Melbourne, July 25th.

The 13,600 delegates at the 20th International AIDS Conference have all now packed up and gone home. The Melbourne Declaration states clearly in two – albeit much contested - paragraphs that gender equality is a critical part of an effective response.  At least 50% of the adults with HIV globally are now women, many of whom acquired HIV during their teens. Surely the tide is now turning? Well only 1 out of the 8 new International AIDS Society board members are female. Only around 10% of conference delegates had signed the Declaration by Friday afternoon. Only 2 out of 31 sessions on drug use in the conference addressed women’s rights issues. HIV-prevention research funding has fallen by 4%. And the UK’s DFID did not even send a representative to Melbourne, since it decided to hold its own event for girls, focusing on the equally pressing and not un-related themes of female genital cutting and early child marriage, in London, right in the middle of the AIDS conference.

So I am left wondering whether anything is going to change in the HIV world for young women, either vulnerable to or already living with HIV?

At the conference I had the privilege of (re)meeting inspiring young women who are our movement’s new leaders: young women have grown up with HIV such as L’Orangelis Thomas from Puerto Rico, Violet Banda from Malawi and Consolata Opiyo from Kenya; young women who have recently acquired HIV, such as Ayu Oktariani and Sindi Putri from Indonesia, and many  other young women who are committed to working on HIV and their sexual and reproductive health and rights globally. Whilst they all spoke out forcefully and passionately about their need for safe spaces, for good education, information and choice, for access to non-judgmental health care and services without their parents’ permission, for protection from gender-based violence and for their rights – in all their diversities - to be upheld, I have doubts about how much the academics, politicians and policy makers really listened to their messages.

According to Dr Susan Kasedde of UNICEF, young people aged 10-19 are the only group in whom there is a 50% increase in all AIDS-related deaths globally.  As L’Orangelis Thomas Negron put it in her plenary speech: “According to the latest report of the World Health Organization, AIDS is the 2nd leading cause of death in young people and adolescents, the 1st is traffic accidents. And I mention this because the first one isn't another disease, it's not some other health issue going above of HIV/AIDS.

Adolescents and young people are dying from AIDS. And it is not only about dying, is about what happens before death.” Indeed, Kasedde explained that globally, of the 2.3 million new HIV people with HIV in 2012, 300,000 - or just over 800 new people each day  - were adolescents. Two thirds of these were adolescent girls.

Young women don’t live in a vacuum. Young women, in many parts of the world, often date much older men. This is often in order to access goods and services and the related status which they do not have the economic, social or political status to acquire by themselves. Miranda van Reeuwijk in her PhD from Tanzania highlighted the breadth and depth of poverty which drives girls to have sex in secrecy, especially with out-of-school boys and men, in order to pay for basics such as school books and uniform, food and help with homework. Dr Salim Karim in his  Monday plenary showed scientific proof of this so-called “inter-generational sex” through philogenetic analysis of school students in rural South Africa. This shows conclusively what we have long believed – that young women are acquiring HIV not from their peers but from older men. Thus whilst 1.5% of young men aged 18-19 had HIV there, 13.6% of young women aged 18-19 had HIV. A stark difference.

Some organisations think you can give cash transfers to girls to make them less vulnerable to having sex with older men. But it is far more complex than this. Young people need – and deserve – more quality holistic support, from all of society around them than any amount of cash alone will provide. Before the first ever Stepping Stones programme in Uganda, back in 1994, young men told us “why bother about AIDS? We have to die some day anyway, we might as well enjoy ourselves while we can. These girls are our enemies, you cannot trust them, they are the ones who infect us….” This dominant narrative is widespread across many parts of the world. However after the Stepping Stones programme, these same boys said: “We have now realised that we have a life to live and things to do… the girls here have been on this journey with us, they are now our friends. These are the ones we would like to work with, date and marry…. we would like to work together with them to build a positive future.” The young men and young women alike had dreams and desires for an income, for non-judgmental information, for options, choice, shared decision-making and safety - and sustained respect and support from their elders to move forward with their lives and realise their dreams. I have heard many similar shifts in discourse around the world once young people – and their elders – are offered the space and time to reflect on their own and others’ lives in safety. They also have a positive knock-on effect on the next generation of children, who are then able to grow up in safety and peace rather than violence and vulnerability. But such powerful community-wide holistic empowerment programmes, which truly leave no-one behind, recognising the predominance of inter-generational sex and the need to build new bridges across genders and generations, are very rare. And they cost money also. Yet without such investment, numbers of HIV among young people will indubitably continue to rise.

As Martha Tholanah said on these pages last week: “And what about our children? Unless we all take steps to change our own attitudes and those of our healthworkers and lawyers, our children will continue to acquire HIV at birth, and will continue to grow up uninformed, untested and untreated. They will also become criminalised as they begin to have their own sexual relations when older. And they will get sick and die. Unless we act now to perform a u-turn in attitudes and practices, this legacy of shame and blame will continue and will be the heritage that we, women and men alike, bequeath our children. And that will be a disaster for us all.” Once again, such actions are not about medication, but about meaningful communication, listening, discourses and reflection – and a determined sustained commitment to act respectfully, humanely and peacefully towards one another.

We have the science.

We need investment in the programmes which will change minds and hearts amongst those with power to act – whether politicians, academics, policy makers or community elders. And we need concomitant investment in all women, together with girls and boys, to support themselves to broaden their own horizons - and become successful leaders in their own right.

The next AIDS conference is in Durban in 2016 in the heart of the area where young women are most badly affected by HIV globally. Despite all the inspiring speeches from young women during the week, there was barely a mention of women and girls throughout the closing ceremony in Melbourne. L’Orangelis Thomas, at the end of her inspirational plenary speech, declared:

“The failure to provide to adolescents the adequate information and the tools to make informed decisions about their health care is an assault on their existence. By denying access to health, you violate our human rights and in consequence, the opportunity to have a dignified life…….. In 15 years, in 2030 will we be still talking about the end of AIDS? Are we going to wait 15 more years? We will meet again and we will see.”  

Let us all hope and pray that Durban will show us the results that all the young women in Melbourne are striving for.

This article is part of 50.50's series of critical perspectives on AIDS Gender and Human Rights. We have been publishing articles daily during the 2014 World AIDS Conference in Melbourne July 20-25




About the author

Alice Welbourn is Founding Director of the Salamander Trust and is on the steering group of the Athena Network. Diagnosed with HIV in 1992, she is a former chair of the International Community of Women living with HIV and developed the Stepping Stones training programme on gender, HIV, communication and relationship skills. Alice is a Commissiong Editor for the openDemocracy 50.50 platform AIDS, Gender and Human Rights.

Alice Welbourn es socia fundadora de Salamander Trust y forma parte del grupo de dirección de Athena Network. Fue diagnosticada de VIH en 1992, y fue la presidenta de la Comunidad Internacional de Mujeres con VIH y desarrollo el programa de entrenamiento Stepping Stones sobre género, VIH, y técnicas de comunicación y relaciones. Alice es encargada de la de la Edición de las plataformas sobre Enfermedades de transmisión sexual, género y derechos humanos de openDemocracy.

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