The following article based on a presentation by Alice Welbourn at the Women Deliver Conference, which took place earlier this month in Kuala Lumpur, Malaysia.
I was recently invited to take part in a panel discussion at the Women Deliver Conference in Kuala Lumpur, Malaysia, the theme of which was “More than mothers: upholding the sexual and reproductive health and rights of women in the Global Plan.”
The plan in question is the “Global Plan Towards the Elimination of New HIV Infections in Children and Keeping their Mothers Alive,” about which I have co-written before. Since maternal mortality among women living with HIV is still so very high, especially in sub-Saharan Africa, it is critical that we have a Global Plan which works for women as well as for their children.
According to UNAIDS, over 40 percent of maternal deaths in some hyper-endemic countries are attributable to AIDS-related illnesses. Despite these extraordinary figures, sessions on HIV and AIDS still play a rather minor role in this conferences, and this was reflected by a rather sparsely populated hall for this session, despite the presence of such great advocates for women’s rights as politician and lawyer, Dame Carol Kidu of Papua New Guinea, UNAIDS Ambassador Crown Princess Mette-Marit of Norway, Sia Nyama Koroma, the First Lady of Sierra Leone (who is also an organic chemist and psychiatric nurse), and Helena Nangombe a dynamic young AIDS activist from Namibia, one of the Women Deliver 100 Young Leaders.
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During the panel, Jan Beagle put this question to me: “Alice, we have seen significant progress through the Global Plan but we know we need to do more. Can you tell us what you consider has worked and what needs to be improved, to ensure that the HIV and sexual and reproductive health and rights of women and girls are adequately addressed?
This is what I replied:
What has worked is a scientific revolution. It is fantastic that the science is there now for anti-retroviral medication (ARVs) to support women with HIV to fulfill our sexual and reproductive rights, including the right to motherhood, if we wish. When I was diagnosed with HIV in 1992, when I was expecting a baby, it was feared that I might die, because ARVs didn’t exist in those days and it was also feared that the baby would die. So I was advised to have an abortion. Many women of my generation with HIV had no children at all. So it is wonderful now to see younger women with HIV able to fulfill their dreams of motherhood, since with ARVs it is now possible to have 99 percent HIV-free births, even with a normal vaginal delivery. So this is a brilliant breakthrough and huge cause for celebration for us all.
In terms of what could be improved, I would like to focus on three areas today, namely language, care and support and safety.
Firstly, language matters. Just reflect – please read out the following words to yourself aloud: “blame, stigma, fear, prevention, violence, discrimination, sickness, death.” How did that feel? We are learning from neuroscientists now that very negative language increases cortisol levels in our bodies, which in turn make us feel stressed. We are also learning from neuroscientists that if we use positive language this increases levels of oxytocin and serotonin in our bodies, which both make us feel happier and more positive in outlook. From this springs feelings and thoughts of hope, opportunities and possibilities, which we can harness to “think outside the box” and create new ways of addressing old challenges.
So what has this got to do with the Global Plan? Well the Global Plan is made up of four “prongs”, about more of which below. I am afraid the very word “prongs” rather makes me squirm. It feels invasive, sharp, attacking, threatening, and reminds me of pitchforks and damnation, abortions gone wrong or impalement.
Presumably because they also preferred more positive language, Anandi Yuvaraj and Aditi Sharma, the authors of an inspiring report from India last year, presented the Global Plan using the idea of four pillars instead of four prongs. To me the word pillars immediately invites an image of something strong, uplifting, bigger than us all, building up the best in us all, in all our societies worldwide.
So how does this shift of language play out in practice? Well the Indian report authors shifted the whole language of the Global Plan as follows. Instead of Prong 1 (which covers “preventing HIV among women of reproductive age”) the proposed “Pillar One: My Health.” Rather than Prong 2 (“Meeting unmet Family Planning needs of women with HIV”) they proposed “Pillar Two: My Choice.” They replaced Prong 3 (“Preventing HIV transmission to Infants”) with “Pillar Three: My Child.” And instead of Prong 4 (“Treatment, care and support for women and families”) they proposed Pillar Four: “My Life.”
Can you hear the difference? If not, just read that last paragraph out loud to yourself. If you were a woman living with HIV, which would you rather hear?
There is a complete about-turn shift from negative prongs, prevention and needs to positive, women-focused pillars and possibilities. Wow. And these possibilities are now open to us all.
So how do we weave care and support and safety into all this?
Well as I have explained previously with other co-authors, there is no mention of the words “voluntary,” confidential,” or “informed consent” in the Global Plan, which has now been adopted by quite a few states around the world. Sadly, care, support and safety are hugely wanting, both from the Global Plan and from peri-natal services for women in general, as well as for women with HIV around the world. Yet these ingredients are also paramount in an effective response to infant and maternal mortality, with or without HIV.
So to expand on Pillar One, instead of the existing language above, we could seek to ensure informed choice and access to condoms, needle exchange program and negotiation skills training for all women and girls, including girls born with HIV, who often feel very excluded by this “prevention” language.
We could describe Pillar Two as “access for all women and girls to dual protection (i.e. from unplanned pregnancy and from transmission of sexually transmitted infections, through, for instance, use of a condom and the contraceptive pill) that is judgment-free, youth- and women-centered.” In Asia now our colleagues tell us that many women with HIV are just being told by health staff to use condoms, since they shouldn’t be having sex anyway, in their view, and certainly shouldn’t be thinking of having children. Just imagine the power of a replacement “pillar” like this to counteract that message.
Pillar Three could be to “support all women with HIV in our deep commitments to keep our children HIV-free.” What a transformation that would be.
And Pillar Four could be “ensure care, support, love, respect, food, shelter and treatment (when we need it and not before) for all women with HIV and for our families. Louise Binder has written eloquently previously about our concerns regarding the “treatment as prevention” movement.
As an aside, there is also on-going and increasing concern out there about the “Option B+” roll-out, which puts all women in a country when pregnant on ARVs for life, whether they actually need them yet for themselves or not and whether they want them or are ready to start them or not. The “option” bit is only for each government to decide, there is no real option for women at all. It’s a bit of a post-code lottery writ large. We hear of some women throwing their package of ARVs away as soon as they have passed through the health centre gates en route home – for them the idea of being found with ARVs is too terrifying for them to contemplate and outweighs any possible good the medication might do.
I’m all in favor of options for women when they are real options, but not when they are just wrapping up lack of choice in something pretty. Policy makers and practitioners: please mind your language.
WHO tells us that gender-based violence (GBV) occurs during pregnancy worldwide – especially in circumstances where the pregnancy is unplanned. Add HIV into this mix and it is like throwing a match into dry grass. We have a potential conflagration of physical, sexual, and psychological violence. We know already that GBV increases women’s vulnerability to HIV. It is also clear that an HIV diagnosis can provoke or exacerbate GBV globally.
Therefore “safety, safety, safety” must be our mantra, at home, in the workplace, and in health care settings. It is vital to turn the tide on the “cascade effect” of women dropping away from health services during pregnancy or after child-birth, once they have been diagnosed, because of their fear of this diagnosis and their terror of what it will bring to themselves and their children. Safety, safety, safety is the mantra. Maybe then we could start to avoid the awful tragedy of so many women dying through AIDS-related issues connected to maternity. Then we could truly have a really powerful and effective Global Plan.