PEP: it?s a matter of life and death

In 2002, the South African Cabinet announced that PEP (post-exposure prophylaxis) would be provided to adult and child survivors of rape and sexual assault in an effort to address the intersection of gender based violence and HIV/AIDS. In a country plagued by epidemic levels of both, the announcement was met with relief and a sense of optimism by activists, service providers and women themselves. In 2003, the Department of Justice produced legislation that permitted survivor-initiated HIV testing of alleged sex offenders. This legislation was also touted as part of government’s attempt to address the impact of HIV and violence on women.

 

Despite this apparent commitment by government, the rollout of PEP has not proceeded smoothly and problems ranging from interrupted drug supplies to a lack of adequately trained counselors have been reported by NGOs assisting survivors of sexual assault.  Serious concerns about the adherence rates amongst survivors have been raised by health care workers. A recent study by the Centre for the Study of Violence and Reconciliation (CSVR) into factors affecting adherence to PEP at sites in Gauteng, noted, amongst others, that health care workers were not adequately trained to provide PEP and those that were, did not spend the necessary time with survivors to ensure that they understood the implications of taking PEP.  The report confirms what many service providers in South Africa and internationally already know: that PEP programmes are complex to initiate and manage and they require the co-operation of all stakeholders to ensure that survivors of sexual violence receive a comprehensive package of care, including PEP.

 

The World Health Organisation (WHO) and the International Labour Organisation (ILO) jointly convened an expert consultation in September 2005 to assist in the development of guidelines for the provision of occupational and non occupational PEP in resource poor settings. These guidelines, once completed and disseminated, will be an important tool for service providers struggling with the technical aspects of PEP programmes.

 

Programmes providing occupational PEP, predominantly to health care workers, are relatively well established and uncontroversial, but the discussions at the consultation raised a number of questions concerning the challenges of providing PEP to survivors of sexual violence and to people who engage in high risk consensual sexual activity.

Most guidelines, including those developed by the South African Department of Health, recommend that PEP be taken within 72 hours of the potential exposure. However, data emerging from studies conducted in the provision of PEP in occupational settings, suggests that the window of opportunity may be much smaller and that the message that should be getting out to survivors of sexual violence is “the sooner the better.”  Some medical practitioners at the consultation suggested that a single emergency dose of PEP should be provided as soon as the survivor presents at a hospital or clinic.

 

This recommendation has significant implications for the treatment of rape survivors. Currently PEP is provided mainly through hospitals, and is generally unavailable at primary health care facilities. These facilities may however be more accessible to rape survivors, as they are often located within communities. The availability of an emergency single dose of PEP at these facilities may facilitate access to PEP much sooner. Even for survivors that present at hospitals, the provision of an emergency dose of PEP immediately may also reduce the time between exposure and access to the medication. The CSVR report indicates that where survivors receive treatment and care through the casualty section of a hospital, they may experience long delays before they are attended to.  Even those survivors, who receive treatment and care from specialist centres and in the private sector, may experience delays if they present at night or over weekends.

 

The provision of a single, emergency dose of PEP may also have implications for obtaining informed consent to conduct an HIV test and provide the full course of medication, and to the survivor’s ability to complete the course. Many service providers have expressed concerns about the ability of survivors of sexual violence to consent to an HIV test and the provision of medical treatment in the immediate aftermath of a sexual assault. The lack of well trained, specialist counselors in both trauma and VCT has exacerbated the problem of providing information to survivors of sexual violence and obtaining their consent.  The CSVR report emphasises the problems with providing information to rape survivors immediately after the rape and recommends that they be provided with accessible information that can be taken away with them.  This would ensure that they are able to understand crucial aspects of PEP, including side effects and why adherence is imperative.

 

Although informed consent is required before an emergency dose of PEP can be administered, rape survivors will not need to consent to an HIV test immediately and they will not need to be provided with complete information about PEP at the time of the emergency dose. A process that allows them to initiate PEP immediately but consent to an HIV test and receive more comprehensive information about PEP, some time later, may well assist some rape survivors to be better prepared for the test result and to adhere to the full PEP regimen.

 

The scientific and psych-social arguments for the provision of a single emergency dose of PEP are compelling, but it also raises serious matters regarding the ability of poor women to access and complete the full course of medication.  The CSVR report provides a stark illustration of the struggle that poor women face in returning to collect subsequent doses of the medication and their HIV test results. Quoting the difficulties experienced by a 17-year old survivor, the report states:

 

PEP programmes must take into account the realities of the lives of women, particularly poor women and must offer creative and innovative solutions to them.