The “Global Plan Towards The Elimination Of New HIV Infections Among Children By 2015 And Keeping Their Mothers Alive”, was launched with much fanfare by UNAIDS in June 2011 and followed by the recently launched "Believe It. Do It" campaign with numerous high-profile celebrities. No-one remotely questions its good intent. Yet, at the risk of our being called kill-joys and doom-mongers concerns are being raised about various aspects of its content and what this means for women’s rights. Why?
Pictures of beautiful babies make our hearts rule our heads – rightly so. And no-one is more determined to keep her baby safe from all danger than her mother. That’s what all our hormones are for, before, during and after pregnancy. So no-one should be more on the side of the Global Plan than we women living with HIV who want to keep our babies safe from our own health problems. I fully acknowledge my own personal bias here, having lost my own baby through my HIV 20 years ago. Thankfully, with huge scientific advances, we can now have babies born 99% free of HIV, even through a normal vaginal delivery. Scientific progress indeed.
Yet the Global Plan, whilst consummate in good intent, has sadly lost much opportunity to be as unrivaled in content and process.
QC Helena Kennedy’s warnings about the making and workings of English law are key here. She has explained often how laws made by men over the centuries - for instance, rape law - have resulted in “failures to provide justice for women within our courts because the courts failed to understand the reality of women's lives,” and that “it was men who were in the business of making those precedents, making those decisions in the higher courts". Kennedy writes that the making of new laws has to be considered very carefully, especially when they are used to address new issues, such as HIV - or terrorism - which have not been faced before. She contends that it is highly unwise to introduce new laws which restrict personal liberty without in-depth consideration of the potential consequences of such laws when all our future regimes might become more conservative than they currently are. Kennedy calls this the “juggernaut” effect, whereby a law made with good intent to protect society from new fears, in fact crashes into and damages those whom it was most intended to protect, arguing that bad laws once in place are extremely hard to rescind and advocating for all the more caution in their creation.
Law professor Matthew Weait has recently also argued powerfully against new laws that criminalize HIV globally. Health and human rights expert Tyler Crone has highlighted the pitfalls of criminalization of HIV for women. And the Global Commission on HIV and the Law has just published its report castigating bad laws. So here are many lawyers warning us to exercise caution around new laws and policies – and this includes the Global Plan.
So what are our concerns? Firstly, the Global Plan was not developed with close involvement of those most affected by its content – ie women living with HIV who have experienced peri-natal issues. True, a working group of women from the 22 priority countries has recently been formed. And true, before its formation a few of us tried to influence its content when we argued that children’s rights and women’s rights should go hand in hand rather than as an implicit either/or option, since women who feel their rights are supported are best placed to care for their child. We tried to emphasise that the principle of support and rights must pervade all documents rather than just be confined to the preamble. And we argued for the meaningful inclusion of women with HIV throughout the process. But those of us who were involved had to - and still have to - do this on a voluntary basis. We have still not all had the chance to meet together to discuss in depth the potential pitfalls of the content. And we still don’t have time, beyond our day jobs, to address the forest fire on the horizon. Yet – although I doubt other members realize this - we women with HIV are the only unpaid members of these committees.
Secondly, the Plan has an incredibly clumsy title. The last 5 words were hurriedly added after a flurry of emails just before its launch, when a few of us commented on its lack of reference to who might be having these babies. This is business as usual for many scientists and others – there is an ongoing disconnect between professionals wanting to save babies and those of us that recognize that looking after their mothers and supporting us holistically might be the best way to do this – by addressing the haemorrhage rather than just using sticking plaster. We suggest this repeatedly and face a polite silence, and yet there is much other scientific literature which states just this. How can we get scientists working on HIV and AIDS to listen not just to us, but to other scientists? This Plan and - except for one - most other related documents do refer to MDG 3 (on gender equity), to gender-based violence and to women’s rights in their preamble and introductory sections – and then fail to mention them again throughout the rest of their content. Yet we know that: pregnancy alone prompts gender-based violence; violence in pregnancy leads to post-natal depression and more violence and children’s behavioural problems; the presence of gender-based violence increases women’s vulnerabilities to acquiring HIV; and an HIV diagnosis may either start or exacerbate gender-based violence. And these studies all refer to violence from partners. What concerns us even more here is that many with HIV are experiencing gender-based violence in healthcare settings. This is not addressed at all in this Plan and we believe that this Plan is – no doubt unintentionally, but quite probably – going to increase this violence.
We already have reports of pregnant women being told they can only have ante-natal care with an HIV test – which is against their rights. If women refuse a test or are reluctant to have one, it is because they fear the consequences of a positive test result for themselves or their older children. It’s not because they are evil women determined to transmit their HIV to health workers or their babies. Yet few health workers or policy makers seem to understand this. The Global Plan upholds the roll-out of this practice, by not using the word “Voluntary” once throughout the document. By contrast, every time “Medical Male Circumcision” is discussed in other UN documents, the word “Voluntary” appears before it.
We also have reports of women, once diagnosed, being treated abusively by health staff, being asked why they have had sex and why they haven’t used contraceptives. They also often get moved to a different area – so all know who is who. No mercy. This violates their rights to confidentiality. Yes, the Global Plan has dispensed with the word “Confidentiality” also.
And of course we also have the widespread reports of women being sterilized once they have delivered, from Namibia, Chile, South Africa, Papua New Guinea - and elsewhere also.
No wonder women are using their brains and not going near ante-natal care when pregnant, when this is how they fear they will be treated.
Yet the Global Plan is now being rolled out into country strategies. One African draft strategy I have seen also has no reference to the “V” or “C” words, and similar scant attention to women’s rights, gender-violence or other issues – despite my knowing that coerced sterilization takes place there too.
The title of the Plan is such a mouthful that UN staff, government delegates and NGOs alike have been referring to it, at the recent World Health Assembly and elsewhere, as the “Elimination Plan”. Any of us with 20th Century European history, with Rwanda or Serbia in our minds surely shudder at that phrase, especially with the Namibia court ruling on sterilization still undeclared. With one notable exception, related documents have many other jarring uses of language.
The latest piece in this juggernaut is that WHO and UNICEF, based on a Business Plan commissioned from McKinsey’s, now plan to roll out immediate life-long treatment to all pregnant women when diagnosed with HIV, even though they may not actually need it beyond the birth, and despite huge awareness of the immense psychological preparation, possible physical side-effects and commitment needed to adhere to medication. Consider how many of your friends always remember to take their anti-biotics, contraceptives and heart disease pills before you judge us further. Even in Britain HIV medication adherence is about 70%. So why add yet another burden to a woman who has just been told she has a life-threatening condition, is expecting a baby, has a partner at home of whom she is fearful, needs to hide her medication from him, her in-laws, her children, her colleagues. A woman who will likely be blamed by over-stretched and under-trained health staff when resistance develops, if she “fails” to take them properly, creating further complications for the next birth.
And what about men’s agency in all this? After all, it takes two to tango. Do we hear policymakers encouraging men to wear condoms more, to stop unplanned pregnancies in the first place? Not in the Global Plan. There is no mention of condoms or circumcision. Or what about drinking bromide tea? Or having a vasectomy? No, this all just depends upon doing things to women – who then get blamed when things go wrong.
When and how can we persuade policy makers to listen to and meaningfully involve the women most affected by these issues in developing a revised Plan, which embraces our needs, our desires, our rights, our plans for our families?
We are running some sessions in the Women’s Networking Zone at the International AIDS Conference next week. The theme of the conference is “Turning the Tide.” I hope and pray that some of these issues will come out in the wash – or here comes another juggernaut.
This is the first in a series of articles that openDemocracy 50.50 is publishing on AIDS Gender and Human Rights in the run up to, and during, the AIDS 2012 conference in Washington DC, July 22-27.