HIV: Violations or investments in women’s rights?

I have just returned from an inspiring conference organised by the Swiss “aidsfocus” consortium in Bern, entitled “Addressing sexual violence and HIV”. These two issues are closely and reciprocally linked, yet to date, most AIDS NGOs have paid limited attention to this fact. The presenters described examples of these links in rural South Africa, where a young woman is more likely to be raped than to learn to read; from DRC where rape was used as a weapon of war; and from Switzerland where a woman accountant with HIV who survived mass rape in Cote d’Ivoire experienced more rape whilst escaping through Libya and Italy now seeks to rebuild her life.

Globally the World Health Organization (WHO) states that 1/3 of women will experience physical or sexual violence by a partner or sexual violence by a non-partner during their lifetime. The European figure is 25%.  Women and girls who have experienced intimate partner violence are on average 1.5 more likely to acquire HIV.

Those who experience sexual violence are rarely able to protect themselves. They come from all stages and walks of life. Orphans aged 5 in Tanzania daren’t tell anyone they are being sexually abused for fear of being accused of lying, of being beaten and no longer being loved. Many of them acquire HIV through this sexual abuse. Rape is commonly reported by transgender women and 19% of all transgender women globally have HIV. Young lesbian women in South Africa are raped repeatedly to “cure” them. Young London women who escape gang culture say rape is the weapon of choice since it can’t be detected by police in “stop and search”. Sex workers with HIV get beaten by their clients in Senegal for refusing condomless sex. South African women ensure their daughters have hormonal contraceptives to ensure that when they are raped they won’t get pregnant.  42% of women living with men who inject drugs in Georgia have been physically abused by their partners. And many women who are unable to negotiate condom use with their partners, experience daily sexual violence of state-sanctioned “marital” rape. Yet this too is sexual violence, often offering the risk of unwanted pregnancy, STIs and/or HIV - though hardly ever recognised as such.

Why is the world so silent about sexual violence, from whatever quarter? Partly because it is so widespread that many take it as the norm, these encounters with violence result in continued fears, violations and resounding silences.  This helps to explain why there has also been minimal awareness of the widespread links between sexual violence and HIV described above, beyond the specific horrors of conflicts in Rwanda or DRC.

It was hard enough to start to talk publically about having HIV myself. It seems even harder to talk about sexual violence. Why is this? Getting attacked, being violated, physically or sexually abused: that fear can stalk every one of us as girls and women throughout our lives. It’s perhaps that constant fear that we might get “blamed” – and blame ourselves - for someone violating us, for “putting ourselves in danger”, that keeps us mute. And while the silence, fear and blame continue, sexual violence will continue to ensure that the threat of rape and/or HIV for women is alive and kicking.

Even compulsory HIV tests, especially if they result in violent consequences, are a form of violence. Sexual violence is closely linked to physical and psychological violence. All three entail making decisions over what happens to another’s body or mind. Although recent WHO Guidelines  state in their preamble that all testing for HIV should be voluntary and confidential, this is not explicitly spelt out in the section on testing during pregnancy, when any woman is at her most vulnerable to violence anyway. Instead, in this section, WHO states: “Provider-initiated testing and counselling is recommended for women as a routine component of the package of care in all antenatal, childbirth, postpartum and paediatric care settings.” By contrast, every time medical male circumcision is mentioned throughout the whole document, it is prefixed with the word “voluntary” for emphasis. The absence of this critical word in the section on testing during pregnancy is therefore all the more marked.

This lack of the word “voluntary” in this section is a major omission, since there have long been many widespread reports of healthworkers making HIV tests for pregnant  women compulsory to access ante-natal services.

When challenged on this by myself and colleagues, the WHO HIV Department emphasised that their Guidelines say testing should always be voluntary and confidential. However, one honest senior HIV doctor from Malawi stated in 2012“we never thought to ask the women if they wanted to be tested or not.” But such glimpses of human rights awareness are however frighteningly rare in the world of HIV.

For many women this compulsory test leading to an HIV diagnosis during pregnancy sets off an avalanche of human rights abuse. This diagnosis often starts or exacerbates violence for women, not just in healthcentres,  but from partners, from in-laws and from states also.  Tales of lack of confidentiality also abound. Healthworkers often abuse women with HIV further, once they are diagnosed. A recent study of 750 women with HIV in the Asia-Pacific learnt that 1/3 of them had been encouraged by healthworkers to consider sterilisation and over 10% of them had been told they had no option. This is another violation of these women’s sexual and reproductive rights. There is no other health condition – inheritable or otherwise - than HIV for which sterilisation is so routinely encouraged so widely imposed on women. If men with HIV were being sterilised, there would be outrage, and rightly so. Yet such routine state-sanctioned abuses, where women with HIV are forcibly sterilised, are widely ignored. Moreover, it is now possible, if women receive the right care, support and medication during pregnancy, for children to be born 98% HIV-free, through normal vaginal delivery.

Why is there so little recognition of sexual and other violence against women in global HIV policies? In part because there is still insufficient formal “evidence base” for its widespread practice in healthcare settings as well as from partners. The formal “medical evidence base” is lagging behind widespread “anecdotal” narratives of  abuse. Yet, “absence of evidence” of such rights violations still does not mean “evidence of absence.” And in part because we are still facing the global legacy of patriarchal forms of healthcare, where it is still assumed that healthstaff have the right to tell anyone in their “care” what to do.

Yet there is a chink of hope. New Guidelines from another WHO Department, entitled: “Ensuring human rights in the provision of contraceptive services and information” recognises publically at last the limitations of the current formal research process to address the complex non-linear, socio-economic and political determinants which shape the lives of most of us: and which most certainly fuel and fan this HIV pandemic for women. These new Guidelines on contraception state: “Given that the realization of human rights within contraceptive information and services is not a research area that lends itself to randomized controlled trials or comparative observational studies, much of the evidence available for the priority topics could not be readily synthesized using the GRADE  approach [which grades the strength of evidence].” 

Acknowledging these limitations, human rights considerations were nonetheless incorporated into these Guidelines, even into the title. At last we have a breakthrough: a recognition that the formal evidence base alone – which was historically created by male scientists to conduct scientific experiments in laboratories - is not fit-for-purpose to safeguard women’s rights. Just as human rights lawyer Helena Kennedy has argued that we need a feminist approach to overhaul our patriarchal legal systems, so we also need a feminist approach to overhaul our patriarchal healthcare systems. Hippocrates understood this over 2,000 years ago when he stated: “It is more important to know what sort of person has a disease than to know what sort of disease a person has”.  We all need global policy makers and healthstaff alike to return to grassroots, to listen to and ensure the human rights of those most affected by HIV, to learn from them about how to create workable solutions. 

Change can happen. A village headman in Malawi, who had acknowledged abusing his wife after an intervention to stop vioence stated: “I stopped the abuse and changed after members of the Coalition of Women living with HIV and AIDS (COWLHA) came to my house and counselled me that what I was doing was violence.” He and his wife now support all their community to overcome violence too.

Change happened when the Malawi doctor described above honestly declared his ignorance of human rights. And change has happened in the title of the new WHO Contraceptive Guidelines.

Change was happening in the Swiss conference, when all those present agreed to ensure that their own NGOs draw up clear guidelines to respond to sexual violence when experienced by staff or the communities they serve.

And change must now happen across all global HIV policy documents also.

Anand Grover, UN Special Rapporteur for Health, has said:

“Are positive people there as tokens or are they effectively making decisions?  Are affected persons involved from A to Z?  Democratic and inclusive processes are essential to achieving human rights, and are at the core of better governance and better health outcomes.”

The UN should listen to its special rapporteur. We need massive investment in programmes and policies, shaped and led by principles of women’s rights, which overcome sexual violence and the men’s shame which drives it. This shame is often generated through inequality, exclusion, oppression and anomie. We need to make the world a safer, happier place for us all. I trust that sexual violence will one day become as outrageous as the thought of forced sterilisation – or forced vasectomy too, for that matter.

Read more articles on 50.50's platform AIDS, Gender and Human Rights 

In an article next month Alice Welbourn will address whether or not women – or anyone – should be forced to take treatment is another question of rights and bodily autonomy.