Why involve women with HIV?

A series of articles by guest writers for World AIDS Day Part of AVERT's World AIDS Day 2012 campaign, ‘Reflections on the Epidemic’ are a series of articles by guest writers. Our guest writers range from global leaders, writers, experts, activists, physicians and people personally affected by HIV and AIDS; and they represent various countries, experiences and backgrounds from all over the world. We are grateful to all our guest writers for their effort and the diverse and insightful viewpoints that they contributed to the world’s response to HIV and AIDS. We will be re-featuring these articles over the next few weeks on a weekly basis. Browse through this week’s featured articles, and see the full list below.

Half of all 34 million adults with HIV globally are women.¹ We come in all characters and colours. Some are grandmothers, some young women who acquired HIV peri-natally.^{2 3} Some use drugs, some are sex workers, some are lesbian, bisexual, transgender.^{4 5 6} Some are monogamous wives.⁷ Some are mothers or want to be, others not.⁸ Many are mixtures of these identities. Most care deeply for their families and communities, just like most other women. Yet most keep their HIV a deep secret. My dear sister, on discovering she had breast cancer, immediately told 200 friends who supported her. By contrast, there are many women teachers, doctors, lawyers, accountants living with HIV who cannot disclose. They fear losing their children, jobs, relationships - their hard-won reputations.⁹ We are told “don’t worry, with medication HIV is now just a long-term condition like diabetes”.   Yet how many people with newly diagnosed diabetes are encouraged to think of it as HIV? Everyone with such diagnoses faces huge challenges, and should receive care and support from family and friends.  Yet an HIV diagnosis still provokes stigma, secrecy, intense loneliness and is chronically debilitating.¹⁰

Peri-natal traumatic events potentially place both a woman and her baby in physical and psychological danger.^{11 12} Pregnancy is therefore the worst time for a woman to discover she has any life-threatening condition.¹³ So we need to ensure utmost support for them both throughout the process.¹⁴ Yet the Global Plan¹⁵ , whilst well intentioned, makes no reference to testing being voluntary or confidential – nor is counselling mentioned.¹⁶ Recent WHO/UNICEF “elimination of mother to child transmission”¹⁷ M&E guidelines omit to mention quality of care of women.¹⁸ Meanwhile reports from Asia-Pacific, India, sub-Saharan Africa and Latin America repeatedly describe shocking treatment of women during pregnancy from health staff and relatives.^{19 20 21 22} Where is the accountability here? Three brave women, coerced into sterilization during labour, took the Namibian government to court and eventually won.²³ Their courageous action has finally alerted other governments to this violation of women’s rights.²⁴ Yet this is rare. International bodies are now promoting Option B+ roll-out, to prescribe pregnant women immediately with lifelong ARVs, irrespective of their CD4 count.²⁵ Yet with chronic under-resourced healthcare systems, regular stock-outs, undertrained and over-stretched staff this strategy looks highly risky.^{26 27} Moreover, how can a pregnant, newly diagnosed woman be expected to cope with the fear of her medication being discovered by her relatives, and the guilt of her dependents already being sick, with no medication available for them?²⁸ Many of us fear that Option B+ will soon morph into “treatment as prevention”, becoming a double-edged sword.²⁹ This throws the onus back to us to protect society at large, rather than ARVs being the breakthrough to support us and to end criminalization of transmission.^{30 31} Many issues here are about women’s wrongs, not our rights. These need to be properly unpacked and addressed. 

In a new film, around 20 of us women with HIV from around the world, stress that no-one is more committed to having babies born free of HIV than we are.³² However, we need respect, support, safety, care and timely treatment to do so. Moreover, all children need and deserve healthy, happy mothers. What better option for a child growing up to stay healthy, happy and HIV-free than a loving, caring, supportive mother?³³ With the right support we can do this. Yet this is rare.³⁴

And what attention is paid to us outside the peri-natal setting? HIV pervades all our lives, yet there is scant support beyond the babies bit. Gender-based violence, for example, is a parallel pandemic. It increases women’s vulnerability to acquiring HIV and, as above, is often caused or exacerbated by an HIV diagnosis. Yet healthcare systems hardly address this and programmes that do are chronically underfunded.³⁵

Women stick our communities together globally. Renowned as carers, volunteers, community-organisers, nurses, cooks, cleaners – and prayers, we are all raised to strive to look after everyone around us. Yet these roles locate us as appendages to others – partners, wives, daughters, sisters, grandmothers, aunties, mothers….  We often forget about our own rights for ourselves, as women.³⁶ If we remember, we are perceived as rabble-rousers or men-haters.³⁷ Rarely are we invited to engage meaningfully as equals on a level playing field, as decision-makers.³⁸ How many of you have invited women with HIV onto your management teams and boards? On planes, we are always instructed, “remember to put your own oxygen mask on before helping others”. It is time for us all, individually and collectively, to remember that women with HIV too need oxygen masks: in our own right, to take control of what has happened to us, in order to keep ourselves happy, healthy and safe. And then, if we wish, so we may continue to contribute to all our societies - in the extraordinary ways that women always have.³⁹

Alice Welbourn is the Founding Director of the Salamander Trust. Diagnosed HIV positive in 1992 when expecting a baby, she wrote the “Stepping Stones” training programme on gender, HIV, communication and relationship skills.

For further information on how HIV affects women, see AVERT's page.

Image: 'An HIV positive woman in Khayelitsha township, South Africa', copyright: Trevor Samson / World Bank