Compulsion versus compassion: HIV treatment for women and children

Alice Welbourn and Louise Binder consider whether the new World Health Organisation treatment guidelines for women and children living with HIV may result in more abuse and harm

Louise Binder Alice Welbourn
8 July 2013

New comprehensive treatment guidelines for people with HIV have just been launched by WHO at the international HIV pathogenesis conference, to a mixed response. These include revised treatment guidelines for women with HIV, and also for children with HIV.

The new treatment guidelines recommend that all children with HIV under 5, regardless of their actual health condition, be given anti-retroviral medication (ARVs). We have written before on opendemocracy 50.50  about the challenges of WHO and UNICEF wanting to put all women with HIV on treatment for life (known euphemistically as Option B+) and our concerns about the double-edged sword of “treatment as prevention” for women. Here we outline why blanket treatment for all children with HIV under 5 is of concern to us.

Whilst no-one is more anxious to keep children with HIV alive, healthy and happy than their own mothers, there has been extraordinarily little consultation with women living with HIV in this guidelines development process.  As anyone with young children knows, trying to get medication into a child can be an exercise in highly skilled negotiation. One would assume it might be useful therefore to consult the experts. Yet none of the key women living with HIV who are well-known women’s rights advocates in Africa, who are our colleagues, when we asked them earlier this year, had heard anything about the proposed guidelines changes.

As one of our colleagues, Martha Tholanah, a long-standing activist from Zimbabwe put it recently:

“I have been convinced I am missing something in all the debates as they have evolved over the best approaches for HIV-positive women, child-bearing and feeding options. With the advent of so much research and the emphasis on evidence-based approaches, it still seems as if women living with HIV cannot have the benefit of such informed public health approaches. All of a sudden WHO is launching new guidelines which appear not to be backed by evidence.  It was not easy getting to where I am today, with a daughter who turned out HIV-negative against all odds. A little over ten years ago, I was faced with a new diagnosis of HIV, and four weeks later, whilst still getting my head around that, I realized that I was pregnant. The medical profession at that time did not give me much confidence in the answers I needed in order to assist my decision-making. It seems ten years later, there is no political will to provide women who have to live with the consequences of the guidelines that we get from the experts, with enough information and support. It feels like, as HIV-positive women, we are being force-fed these guidelines. I have not heard of any consultations with the women who have to live with this. We know public health programs will be quick to adopt the guidelines wholesale. There is need to re-consider this action, and listen to the experts in lived realities – the HIV-positive women.”

So what are our concerns about this medication?

Firstly, adherence. ARVs are for life and you have to take them religiously not to build up resistance. So starting them has to involve huge commitment by all concerned. A recent powerful film from Malawi demonstrates how women with HIV face violence from their partners for even accessing their own ARVs from hospital. How then, given the widespread experiences of violence in healthcare settings that we know women also experience, do we expect women to risk more violence by seeking treatment for their children also? Furthermore, the liquid ARVs currently available for children need refrigerated storage. Yet there is no plan to roll out fridges to women across Africa.  It also tastes horrible and children spit it out. If they take too much they may be sick. So it is nigh impossible to tell if they are getting the right dose. If not, they will build resistance to the drug. If you develop resistance to ARVs in the UK there are second or third-line alternatives available. These are not widely available in Africa.

What about adequate food and water supplies? The guidelines highlight the importance of food in HIV care. Yet there is no parallel plan to scale up food and water security.

In the clinics themselves, the guidelines also highlight the importance of actually ensuring medicines keep arriving there. This is also a serious problem since interruption of medications – which is still widespread - also leads to resistance.

Most healthcare providers have not been adequately trained how to respect women’s own rights regarding their HIV, so they have minimal ability to support the women to provide these treatments to young children. The staff are also often overworked, often dealing with the secret of HIV in their own lives and do not have the time to assist women in a manner that encourages women and their children to continue to attend the clinic for care and treatment.

As with other aspects of these new guidelines, the scientific trials to date have also not supported the proposed guidelines.  There is no strong evidence yet that prolonged treatment on antiretrovirals in their formative years does not have an impact on bone and other growth factors in children as they become adolescents.

For all these reasons we have asked WHO and UNICEF why they are putting the cart before the horse in launching these guidelines before all these practical issues are addressed first. We have no doubt that they have done so with good intent. However our repeated experiences over the years are that when WHO issues guidelines, country programmes view them as the rulebook, and it’s women who get the blame if they don’t obey them.

There are also wider national and global health and societal issues at play here. Why, for instance, is there such a drive for “best guesses” over the evidence base? Why is there an ongoing reluctance, nay resistance, to acknowledge complexity, an inability to embrace the holistic realities of the world we inhabit, to involve as central those people who know most about an issue – i.e. those who are most deeply and personally affected by it? Why is there a continued rush to produce numbers when we all know that it’s the quality of an intervention which is the key to whether it actually succeeds or not, not the quantity of boxes ticked. To paraphrase Chris Mowles, institutions might be hitting the target, but often miss the point. For instance, we hear from Uganda that women are throwing away their ARVs as soon as they have stepped outside the hospital compound, for fear of reprisals at home. One boy recently stopped taking his medication because he didn’t want to be spotted by his school friends at the clinic. The clinic staff shouted at him for being so stubborn. So whilst the hospital records show many new uptakes of ARVs, our own sources reveal different narratives.

A recent conference in Southern France attended by over 500 healthcare professionals convened to address compassion in healthcare. It was an uplifting and enriching experience as we learnt of the hugely positive impact of approaching healthcare from a positive, collaborative holistic and inclusive approach. As we in the UK learn and grow from the Francis report and think about “intelligent kindness” in healthcare, we hope so much that compassion in UN global HIV care policy and practice might also be an imminent – and immanent - reality.

Read more articles in openDemocracy 5050's seriesAIDS, Gender and Human Rights





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