What Works—HIV Testing and Counseling for Women
Global consensus exists that “greater knowledge of HIV status is critical to expanding access to HIV treatment, care and support in a timely manner, and offers people living with HIV an opportunity to receive information and tools to prevent HIV transmission to others. Increased access to HIV testing and counseling is essential in working towards universal access to HIV prevention, treatment, care and support” (WHO and UNAIDS, 2007: 5). There is also wide recognition that the way HIV testing and counseling is undertaken is also critical and that there is an “urgency to clarify and articulate—in clear rights-based, operational terms—what is needed to ensure that people are able to obtain the full benefits from learning their HIV status for themselves and others; receive the best and most ethical care, diagnosis and treatment in health settings; and if positive, be supported to manage HIV infection, including prevention of transmission of HIV, and equipped to avoid, or seek redress for, stigma, discrimination and violence; and if negative, be supported through prevention strategies to stay negative” (UNAIDS Reference Group on HIV and Human Rights, 2007: 1).
More Testing Modalities Enable More People to Learn Their Status
Attention to testing in HIV/AIDS programming has resulted in a proliferation of HIV testing and counseling (HTC)[5] modalities. Some of these modalities include provider-initiated testing; couples counseling; client-initiated testing, also known as voluntary counseling and testing (VCT); and home-based testing, among others. Increased use of a variety of testing modalities has allowed more and more people know their HIV status. While only 0.5% of adults in reporting countries received HTC in 2005 (Stover and Fahnestock, 2006), by December 2009, nearly half of all people living with HIV were aware of their serostatus (UNAIDS, 2009e). Among the 45 countries that reported data on sex workers, the median proportion of sex workers who knew their status from a recent HIV test was 38% (UNAIDS, 2009e).
Experts disagree, however, on the best testing modality. Each modality has advantages and disadvantages. For example, home-based testing may reach people in rural areas where transport is a barrier, particularly for women. But home-based interventions need to have the infrastructure in place to provide safe counseling and testing, for example, provider capacity, availability of quality assurance, and the ability to protect fundamental human rights. Other studies show that different HIV testing strategies should be used for men and women: on-site testing for women and mobile HTC services for men (Zamanillo et al., 2008). A recent analysis in the Lancet called for universal HIV testing with immediate treatment access as a way to halt the epidemic (Granich et al., 2009). This “Test and Treat” approach has received a range of critiques about methodology and operational constraints from a number of experts worldwide (Cohen, Mastro, and Cates, 2009; Wilson, 2009b: Ruark et al., 2009: Epstein, 2009; Jurgens et al., 2009a; Hsieh and Arazoza, 2009: Jaffe, Smith, and Hope, 2009: Assefa and Lera, 2009). Further expert consultation on this topic is likely.
Equitable Access to Testing and Counseling Services Is Needed
To ensure universal access, expanding coverage of HIV testing and counseling for women is needed, both within and outside of antenatal care settings. [See also Chapter 9C-1. Safe Motherhood and Prevention of Vertical Transmission: Testing and Counseling] Most women access HIV testing within maternal health services. “Pregnant women are disproportionately tested for HIV since they come into contact with the health system regularly” (Groves et al., 2009: 2). One study from India of 800 adult men and 800 recently pregnant women found even though women were over 80% less likely than men to be aware of HIV testing facilities or the existence of HIV testing and counseling, women were more than twice as likely to have had an HIV test (Khale et al., 2008). A review of literature from 1980 to 2008 on gender-equitable services in rural India found that “men sought testing out of personal concern, whereas women utilized testing on the recommendation of, and in some cases reported mandatory testing by, their antenatal provider (Sinha et al., 2009: 200). Analysis of 2005-2006 DHS data from Zimbabwe with 6,997 women and 5,359 men found that HIV testing is higher for women (30%) than men (22%). Women are tested as part of routine counseling in ANC, “whereas for men it is volunteering to be tested” (Sambisa, 2008: i). In South Africa, counseling and testing for HIV is currently limited to antenatal care settings and a few stand-alone centers (Mullick et al., 2008).
The emphasis on counseling and testing for prevention of maternal to child transmission (PMTCT) means that women who are not pregnant are inadequately reached with HIV testing and counseling services. Few HIV testing programs that are not part of PMTCT services are designed to meet the needs of women. Health care providers often only refer women from vulnerable groups, such as sex workers, or women with HIV-related symptoms to testing and counseling, not recognizing the value of testing and counseling for all women. More recent data from some sites suggests that even outside of PMTCT clients, more women than men access HIV testing (Greig et al., 2008; Fernandez et al., 2008). One study in South Africa found that by not counting access to HTC via PMTCT services, females were still twice as likely as males to use HTC (Snow et al., 2008). “Men’s underutilization of HIV services significantly undermines prevention and treatment efforts” (Peacock et al., 2008: 1). The fact that fewer men get tested than women means that women end up bearing the burden of status disclosure to men, with attendant risk of stigma and abandonment (Greig et al., 2008).
Women’s Barriers to Testing Go Beyond Access
For women, access to testing is not necessarily the key constraint to testing, although women certainly face a number of barriers to accessing testing. Barriers for women include lack of information, time, childcare, resources, and transportation. In a study of serological and demographic survey data collected between 1994 and 2004 for 8,790 men and women living in rural Tanzania, “knowledge of VCT emerged as one of the strongest predictors of VCT use among both sexes” (Wringe et al., 2008: 326). Women who had no prior knowledge of VCT had a much lower rate of completing VCT. Only 4 percent of women who had no prior exposure to VCT and indicated a desire to get tested actually completed the program. In comparison, 17 percent of women who had heard of VCT completed the program” (Wringe et al., 2008: 326). A comparative study in four Asian countries (India, Indonesia, the Philippines and Thailand) found that men were more likely to be tested if they had HIV-related symptoms, whereas women were more likely if their partner tested positive. Additionally, women who tested HIV-positive were more likely than men to be excluded from social interactions and events, forced to change residences or be physically assaulted (Paxton et al., 2005).
Many women, especially rural women, are unable to afford the time or money required to travel to a facility providing HIV testing. High rates of illiteracy mean that many women cannot access information about the benefits or availability of HIV testing. Women without access to treatment may not see any advantage in learning their HIV status. Stigma, gender inequalities, and fear of negative outcomes following disclosure are significant barriers. Fear of stigma and discrimination from health care providers is also a concern, especially for women from marginalized groups. [See Chapter 11. Strengthening the Enabling Environment and Chapter 13. Structuring Health Services to Meet Women’s Needs]
Expanded Testing Must Not Put Women at Risk for Violence
While continuing to expand HIV testing and counseling options and opportunities is beneficial, it is important to ensure that testing is undertaken in ways that support women and girls. “Efforts to increase access to HIV testing must be accompanied by vastly scaled up efforts to confront the stigma and human rights abuses that deter people from seeking HIV tests in the first place….” (Jurgens and Cohen, 2007: 7). Rapid expansion of testing without ensuring informed consent and confidentiality could increase the risk of women being rejected by their families, losing their property, and suffering violence and abuse. A study of 245 women who were enrolled after pre-test counseling and prior to the collection of test results in Tanzania found that many women lack autonomy to make decisions about HIV testing. Fifty-two percent of the women, regardless of HIV serostatus, feared their partners’ reaction; principally fear of abuse or abandonment. Only a small percentage of women’s male partners said they would come for HIV testing, regardless of the women’s serostatus. Partner violence was a serious problem among many female VCT clients, with more that 25% of women agreeing with the statement “violence is a major problem in my life.” Of the 245 women, one-third were HIV-positive and were 2.68 times more likely than HIV-negative women to have experienced a violent episode with a current partner. Young HIV-positive women ages 18-29 were ten times more likely to report partner violence than young HIV-negative women. If a woman underwent testing on her own without informing her partner, she risked being blamed as the source of infection (Maman et al., 2001a). [See also Chapter 11B. Strengthening the Enabling Environment: Addressing Violence Against Women]
Serodiscordance in a relationship can result in violence and other adverse outcomes for women. Focus groups with 18 women, 11 HIV counselors and 16 men in Tanzania found that divorce and abandonment were outcomes of serodiscordant test results within couples (Milay et al., 2008). A study with interviews of 26 women in Uganda who experienced violence and were in a serodiscordant relationship found that violence increased in their relationship after knowledge of HIV serostatus. None reported their experience to law enforcement authorities. Women who tested seronegative with a husband who tested HIV-positive reported that their husband deliberately tried to infect them with HIV by raping them in order to accuse the woman of having infected him, a more acceptable scenario for the man. Women who tested HIV-positive and had a seronegative husband were told to leave their homes (Emusu et al., 2009). Counseling concerning violence in pre- and post-HIV testing is very much needed. A review of the published scientific literature from 1990 to 2008 on couple-oriented HIV counseling and testing found that in five African countries, at least two-thirds of couples with at least one HIV-positive partner were HIV serodiscordant. HIV counseling has largely been organized on an individual and sex-specific basis. Interventions are needed to promote continuous long-term condom use within long-term serodiscordant partnerships with education and information on serodiscordance (Desgrées-Du-Loû and Orne-Gliemann, 2008).
Providers need the training, skills, and tools to enable them to identify women at risk of violence or other negative consequences. Program planners also need to develop links between HIV testing services and programs that address gender-based violence and services that support survivors of violence, and develop strategies to reach women who do not come to clinics because of violence. Women living with HIV have been found to be 2.7 times more likely to have experienced a violent episode from a current partner than HIV-negative women, and this rate is even higher among younger women (Maman et al., 2001a). However, some couples want to test together and should be able to do so. In five African countries, at least two-thirds of couples with at least one HIV-positive partner were serodiscordant; in half of them, the woman was the HIV-positive partner. To date, such couples are not among the ‘key populations’ to whom prevention interventions are targeted. Couple-centered initiatives for HIV testing have not been scaled up (Desgrées-Du-Loû and Orne-Gliemann, 2008). Some sites have had success in increasing couples HTC, such as the AIDS Information Center in Uganda, with over 700,000 clients serviced since 1990, with an increase of 9% of clients coming with their partner for HTC in 1992 rising to 28% of clients by 2000, of whom 18% were serodiscordant (Malamba et al., 2005).
Women Must Have a Choice in Testing
Given the consequences they face, including violence, women must have the right to opt out of “routine” testing. [See also Chapter 9C-1. Safe Motherhood and Prevention of Vertical Transmission: Testing and Counseling] Mandatory testing, besides being a human rights violation, may not lead to any positive outcomes in HIV prevention or treatment. For example, a study in Ethiopia found that of 4,000 HTC clients, 14% were being tested because they planned to be married. Among pre-marital testers, 93% of men and 89% of women reported that the HIV test was required. Male pre-marital testers were more likely than other single clients to believe couples tested for HIV before marriage do not need to test again for the duration of the marriage (40.2% of men; 30.4% of women). Male pre-marital HIV testers were 65% less likely than other single clients to intend to use condoms for HIV prevention and female pre-marital HIV testers were 65% less likely than other single clients to intend to use condoms for HIV prevention (Bradley et al., 2008b).
Provider-initiated testing and counseling, implemented appropriately, has the potential to increase testing. In the study of 1,268 respondents in Botswana, routine testing during antenatal care increased the proportion of women undergoing HIV tests by 15%, with a doubling of those on treatment (Weiser et al., 2006a). However, some members of the International Community of Women Living with HIV/AIDS (ICW) have reported that providers do not sufficiently advise women that HIV testing is a choice: “When I got pregnant at 16 I knew nothing. I didn’t know I had a choice not to be tested” (ICW member, South Africa, cited in Bell et al., 2007: 119). A study in the Ukraine in 2003 of 15 healthcare workers and of 40 HIV-positive women ages 16–33 who were either pregnant or had been pregnant in the last two years found that 24 of the women included in the study reported feeling that they had little or no choice in the decision-making process to be tested for HIV. Only 12 reported their decision to be tested to be an independent one (Yaremenko et al., 2004). Further efforts are needed to ensure that women are able to make their own choices in testing.
Confidentiality and Consent are Critical in Testing and Counseling
If women fear that they will be pressured into having a test or that the results will not be kept confidential, they may be less likely to use services. Focus group discussions along with interviews of twelve health professionals in Brazil found concern that partner notification would prejudice the provider-patient relationship, possibly generating situations of violence and stigma (Silva and Ayres, 2008). In interviews with HIV-positive women conducted in the Dominican Republic in 2004 (no numbers given), HIV-positive women reported that they did not access reproductive health services for fear of being subjected to an HIV test and losing their jobs (Human Rights Watch, 2004a). Studies have found that women in Kenya will give birth at home rather than at a health facility in order to avoid being forced to take an HIV test, be tested without their informed consent, or have the confidentiality of their HIV tests results breeched (Turan et al., 2008a). Further, a survey of 1,268 respondents in Botswana in 2004 found that while most participants reported being in favor of routine testing, 43 percent of participants believed that routine testing would lead people to avoid going to the doctor for fear of testing (Weiser et al., 2006a). In the same study, 14 percent agreed that routine testing leads to more violence against women and that 62 percent of women and 76 percent of men believed that they could not refuse an HIV test (PHR, 2007a).
Clearly, HIV testing which discourages women from needed health services contraindicates all public health benefits that could accrue from knowing one’s serostatus. It is possible to increase access to HIV testing and more likely for women to engage in HIV prevention if counseling, confidentiality and consent are inherent to the HIV testing process (WHO and UNAIDS, 2007). Routinely offering and recommending HIV testing and counseling, but requiring that women specifically agree (“opt-in”) may increase the numbers of those tested while respecting human rights (Jurgens, 2007a). Studies are needed to compare routine testing that includes an “opt-in” component with other approaches to what have been called “opt-out” testing, evaluating outcomes both in terms of respect for human rights and increasing the numbers of those who want to get an HIV test. The “opt-in” aspect of routine testing would mean that providers explain the benefits of HIV tests and recommend an HIV test. Additional research is needed to assess how to streamline but keep essential elements of pre- and post-test counseling (Jurgens, 2007a; Chersich and Temmerman, 2008). A study in Zimbabwe of 5,775 people based on survey data between 1998 and 2000, followed by a repeat survey in 2003 found that women who had had pre-test counseling were significantly more likely to return for their test results than those with no pre-test counseling (Sherr et al., 2007). For those who test HIV-negative, testing should be seen as part of an ongoing prevention strategy, with encouragement for those who are HIV-negative or untested to protect themselves and others from HIV transmission (Bell et al., 2007).
Interventions are needed to help those who have tested HIV-positive to prepare for disclosure. Policy documents and reports that strongly advocate for the involvement of people who have tested positive often do not consider the processes involved, the psychological impact of disclosure, and the potential impact on relationships or career prospects (Manchester, 2004). Possible approaches include disclosure plans, disclosure mediated by a friend or counselor, and couple counseling. Voluntary couples counseling can encourage men to reduce negative reactions and promote shared responsibility for reproductive health; however, women’s confidentiality must be guaranteed, along with support (Cohen and Burger, 2000).
Early Testing and Testing in the Era of Treatment
Acute HIV infection, when HIV is highly transmissible, can be tested as early as nine days following HIV acquisition via polymerase chain reaction (PCR) test (Cohen, 2009). However, this early stage of acute infection is when few know their HIV-positive serostatus. “Rapid, inexpensive, point-of-care tests that can determine both acute and established HIV infection status are already in development. Rapids tests will also be available to determine the HIV viral level and…CD4 count” (Mastro et al., 2008). Further guidelines to testing can be found at the WHO website http://www.who.int/hiv/pub/vct/en/.
It is important to note that some of the studies in this chapter were done before treatment was available. Now that treatment has become more available and accessible in many countries, it is expected that testing will increase. Treatment, alone, however will not be the only motivating factor in testing. Even in the absence of treatment, testing to know one’s status can improve one’s own health and may prevent HIV transmission.
[5] The term HIV testing and counseling (HTC) covers the range of options for ensuring that people know their HIV status. Different terminology has been used in HIV testing over the past three decades. Voluntary Counseling and Testing (VCT) has long been used to refer to client-initiated testing and can also refer to free-standing clinics where people go for the purpose of accessing HIV tests and counseling (Obermeyer and Osborn, 2007) at any facility that provides HIV testing. Many of the points in the “what works” list are based on evidence that discussed “VCT” and thus that term is used most commonly. “Provider-initiated testing” refers to HIV testing and counseling “which is recommended by health care providers to persons attending health care facilities as a standard component of medical care” (WHO, 2007c: 19). Additionally, reference is made to “routine” or “opt-out” testing where HIV tests are given routinely unless a client decides specifically to “opt-out.”