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.
You can also see all articles and writers in this series at the end of every article.
The AIDS community is living in a time of ‘yes’. ‘Yes’ to our successes, ‘yes’ to our hopefulness and ‘yes’ to all we can achieve together. The latest UNAIDS report was entitled 'Together we will end AIDS'. The Washington DC Declaration called for an end to the pandemic. AIDS 2012 was convened under the theme 'Turning the Tide Together'. This sentiment is unprecedented; the days of doom and gloom are just a few scientific advances behind us. A victory against HIV, once merely a pipedream, now seems possible.
This wave of HIV optimism is perhaps most evident when discussing paediatric HIV. Yesterday we were consumed with efforts directed at children living with the dreaded disease – how to treat and care for them. Today, we’re talking about eradication of paediatric HIV. EMTCT (Elimination of Mother-To-Child Transmission) is the new buzz word. Prevention is the new black. The Global Plan, supported by ‘Believe it. Do it’, calls for elimination of new childhood infections by 2015. Talk about programmes for HIV-positive children - ‘Why?’ some ask. ‘There should be no paediatric HIV beyond 2015.’
And yet. While this ‘prevention-as-gold’ resolve is empowering, there are a few truths that are difficult to shake. The fact, for example, that last year just 57 percent of the 1.5 million HIV-positive pregnant women in low- and middle-income countries received effective ART to prevent transmission. Or the 330,000 children newly infected with HIV in the same year. It warrants mentioning that of the Global Plan's 22 priority countries, only 8 will actually achieve their target/s if their MTCT decline continues at the current rate.
What does all of this mean? If we examine the data, it seems we’re not heading for elimination of new paediatric infections any time soon. Really. This is not a pessimistic, glum view of our progress. It is simply an acknowledgement of what is true, right now, in the field.
“It’s not glamorous. It’s not exciting. It’s still sad. It’s still frustrating. But it’s true. And the allure of prevention, in all its glory, should not out-shadow or deprioritise the paediatric HIV treatment response.”
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
But women’s PMTCT programmes are everywhere!
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 Plan 15, 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.
Rights, not wrongs
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
More than mothers
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
An effective response
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
Meeting the challenge of stigma in Iran
Words are not enough: Where is the genuine support for an AIDS-free generation?
Going beyond the silver bullet approach
A new generation of awareness
Mothers at the forefront of change
A few simple actions against AIDS
The reality of beginning the end of AIDS
In the balance — HIV and the Law
Striving for an AIDS free generation of adolescents
A broken unity: An American reflection on the epidemic
Universal access for people who use drugs: Not just a pipe dream
In pursuit of a cure
The future of antiretroviral treatment
Ending paediatric AIDS
A future of possibilities
Riding the waves of HIV
The Paediatric HIV response in the context of AIDS optimism
HIV/AIDS Care begins at home
HIV/AIDS in Uganda: Myth to reality
Why beauty is a great weapon in the fight against HIV/AIDS
HIV Walk, unravels the epidemic
The importance of Parliamentary voices in the AIDS response
Women breaking the stereotype
Resources for a rights based approach to address the HIV/AIDS pandemic
AIDS - It’s not over
Backing the community response
Gogo-getters become elders
Getting to zero
The search for common humanity at the heart of the AIDS response
AIDS is still hot in India
Why involve women with HIV?
All opinions expressed in 'Reflections on the Epidemic' do not necessarily represent those of AVERT.
- 1. AVERT (2012) ' Women, HIV and AIDS'
- 2. HelpAge (2012) ' Video: Age, Sex and HIV'
- 3. UNAIDS (2012) ' The Hopes and Dreams of Young Women Growing up with HIV'
- 4. UNODC (2012) ' Women for Women'
- 5. McMillan D (2012) ' Making Waves: The Changing Tide of HIV and Drug Use', International AIDS Conference Plenary Speech 25 July'
- 6. Strachan S (2010, October) ' A Seed of Hope', Mujeres Adelante
- 7. African Gender & Media Initiative (2012) ' Video: Robbed of Choice'
- 8. Salamander Trust (2008) ' HIV, Women and Motherhood Audio Project'
- 9. Hale F and Vázquez MJ (2011) ' Violence Against Women living with HIV/AIDS: A Background Paper', UNWomen/ICWGlobal/Development Connections [PDF]
- 10. Petretti S (2011) ' Just Diagnosed with HIV' SHE Programme
- 11. WHO (2011) ' Intimate Partner Violence During Pregnancy'
- 12. Pop VJM et (2011) ' Development of the Tilburg Pregnancy Distress Scale' BMC Pregnancy and Childbirth, 11:80'
- 13. Gerhardt S (2004, June) ' Why Love Matters' Routledge
- 14. Welbourn, A et. al (2012) ' In HIV Prevention Protect the Mothers: A Message to the World Health Assembly 2012' RHReality Check
- 15. UNAIDS (2011) ' The Global Plan towards the Elimination of New HIV Infections Among Children by 2015 and Keeping their Mothers Alive'
- 16. Chitembo A et al (2012) 'Towards an HIV-free generation: Getting to Zero or Getting to Rights?' Reproductive Health Matters Supplement
- 17. *Elimination of Mother to Child Transmission: For a discussion of this term, see: Dilmitis S et al (2012) ' Language, Identity and HIV: Why do we keep talking about the responsible and responsive use of language? Language matters', Journal of the International AIDS Society 2012, 15(Suppl 2):17990
- 18. WHO/UNICEF (2012) ' Global Monitoring Framework and Strategy for the Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping their Mothers Alive (EMTCT)'
- 19. Paxton (2012) ' Positive and Pregnant: how dare you?', Asia Pacific Network of People living with HIV
- 20. ITPC/ICW Asia Pacific (2012) ' The Long Walk: Ensuring Comprehensive Care for Women and Families to End Vertical Transmission of HIV'
- 21. AIDS Legal Network/Global Coalition on Women and AIDS (2012) ' Building Women’s Meaningful Participation in the Scale-Up of Prevention of Vertical Transmission Programmes'
- 22. Vázquez MJ and Hale F (2011) ' Ethical Considerations for an Integral Response to human rights, HIV and violence against women in Central America', Inter-American Commission of Women/Organization of American States
- 23. OSISA (2012) ' They Took My Choice Away'
- 24. African Gender And Media Initiative (2012) ' Robbed of Choice: Forced and Coerced Sterilization Experiences of Women Living with HIV in Kenya'
- 25. EGPAF/M2M (2012) ' Statement from Elizabeth Glaser Pediatric AIDS Foundation and mothers2mothers on WHO’s Option B+ Approach to Protect the Health of Mothers and their Babies'
- 26. Odetoyinbo M et al (2009) ' Greater Involvement of People living with HIV' Health Care Journal of the International AIDS Society 12:4
- 27. Carole Leach-Lemens (2012) ' Adverse birth outcomes more frequent in women exposed to ART during pregnancy, largest-ever study confirms' NAM / aidsmap
- 28. Turan J et al (2012) ' The Role of HIV-Related Stigmain Utilization of Skilled Childbirth Services in Rural Kenya: A Prospective Mixed-Methods Study' PLoS Med 9(8)
- 29. Binder L (2012) ' No Test No Arrest: Criminal Laws to Fuel Another HIV Epidemic' openDemocracy
- 30. Welbourn A. (2010) ' Medication, Prevention and Me' openDemocracy
- 31. ATHENA (2010) ' 10 Reasons Why Criminalization of HIV Transmission Harms Women'
- 32. UNAIDS (2012) Video: ' Did you know?'
- 33. See the ' Convention on the Rights of the Child', especially Article 19.2
- 34. For one exemplary programme, created and led by women living with HIV, see Positively UK (2011) ' Pregnancy and Beyond'
- 35. UNAIDS (2012) ' Impact of the Global Economic Crisis on Women, Girls and Gender Equality'
- 36. Salamander Trust/Women Arise (2010) ' What Does a Positive Woman Human Rights Defender Look Like?'(pdf)
- 37. See Babcock L. and Laschever S. (2008) ' Why women don’t ask: The high cost of avoiding negotiation - and positive strategies for change' Princeton UP
- 38. Salamander Trust et al (2011) ' Policy Briefing on Funding and Participation'
- 39. Salamander Trust (2008) ' HIV, Women and Motherhood Project'