HIV Testing and Counseling for Women
Knowing one’s HIV serostatus is the first step in getting the appropriate treatment and care. According to UNAIDS, fewer than 40% of those living with HIV are aware of their serostatus (UNAIDS, 2010c). In parts of sub-Saharan Africa, more than 80% of people living with HIV do not know their positive serostatus (Anand et al., 2009). 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 and that 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). Although evidence shows that just knowing one’s serostatus can lead toward more protective behaviors for those who test positive (Booth et al., 2009; Wilson et al., 2007), far greater benefits accrue from “successful referral to treatment and care of those found to be HIV-positive,” rather than just testing alone (IOM, 2011: 83). There is little reliable data on the number of people who are successfully linked with care and treatment services following an HIV diagnosis in resource-limited settings (Nsigaye et al., 2009), although progress has been achieved in some areas.
“…HIV testing can and should be expanded without disregard for human rights” (Jurgens, 2007a: 1).For example, in one community near Cape Town, South Africa, a review of records from 2001 to 2006 found that the proportion of clients living with HIV who received antiretroviral therapy within six months of eligibility increased from 0% in 2001 to 68% in 2006 (April et al., 2009). However progress is not universal: in a study in Ethiopia, for example, the number of clients who tested HIV-positive but were not linked to care increased from 18% in 2005 to 26% in 2008 (Assefa et al., 2010). [See also Provision and Access]
There is wide recognition that the way HIV testing and counseling is undertaken is also critical to ensure that human rights are not violated 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 and opportunistic infections, 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 et al., 2007: 1).
HIV testing and counseling comes in many modalities and there are both benefits and challenges in testing. This section focuses on HIV testing and counseling of women and adolescent girls in general. Specific issues relating to HIV testing in the context of safe motherhood and prevention of vertical transmission can be found in that section. [See Antenatal Care - Testing and Counseling]
More Testing Modalities Enable More People to Learn Their Status
Attention to testing in HIV programming has resulted in a proliferation of HIV testing and counseling (HTC) modalities. The advent of HIV rapid test technology has simplified HIV testing and counseling implementation and expanded where such testing can take place (Menzies et al., 2009). Some of these modalities include provider-initiated testing; couples counseling; client-initiated testing, also known as voluntary counseling and testing (VCT); home-based testing; and community-based testing either in mobile clinics, at the work place, or at a school, for example (WHO et al., 2011b). 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” evidence 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.” Testing costs vary by modality and outcome. Costs per client tested range from US$6 in home-based testing; to $9 in community testing; to $12 with provider-initiated testing; to $19 for VCT (WHO et al., 2011b).
Increased use of a variety of testing modalities has allowed more and more people to know their HIV status. Each modality has advantages and disadvantages, particularly for women. For example, home-based testing may reach people in rural areas where transport is a barrier, especially for women. Door-to-door HIV counseling and testing is a home-based provider-initiated strategy. Household-member HIV testing and counseling offers testing to clients in their own homes and also targets family members of individuals who have already tested HIV-positive (Menzies et al., 2009). One randomized controlled trial prior to treatment availability found that home-based HIV testing increased the numbers of those who leaned their serostatus (Fylkesnes et al., 2004 cited in Bateganya et al., 2010). A recent survey in Uganda found that providing HIV testing and counseling through either facility or home-based models will reach a different client base, with home-based testing superior for rural populations (Mulogo et al., 2011). However, home-based HIV testing and counseling may be more costly in identifying people who are HIV-positive in rural areas if homes are difficult to reach and HIV prevalence is low. But home-based interventions need to have the infrastructure in place to provide safe counseling and testing, such as well-trained providers, availability of quality assurance, and the ability to protect fundamental human rights. Options to assess costs are available at PEPFAR (PEPFAR, 2011b).
Couples testing and counseling can be an important component of HIV prevention (Allen et al., 2011; Gray et al., 2011) if the HIV-positive partner is linked to appropriate treatment services, but this has only recently received attention. Some studies have shown that serodiscordant couples in established partnerships or marriage will significantly contribute to new HIV infections (Gray et al., 2011 cited in Allen et al., 2011). Efforts are underway in many countries to increase the number of couples seeking joint HIV testing (Wall et al., 2012; Lambdin et al., 2011). Others have argued that it is more cost-effective to provide HIV testing and counseling individually, but in a way that addresses issues that focus on relationships (Montgomery et al., 2011). Other studies show that multiple HIV testing strategies in some settings should be used for men and women: on-site testing as an option that might attract women and mobile HTC services as an option that might attract men (van Schaik et al., 2010).
Provider-initiated testing and counseling can increase the number of people tested, and has the potential to increase the number of people living with HIV who know their HIV status earlier in the stage of infection, but with “provider-initiated testing and counseling (PITC), the “c” deliberately follows the “t”: the emphasis is on encouraging people to know their status rather than on the process of counseling” (Hardon et al., 2011: 186). “Evaluating outcomes from PITC and other forms of HIV testing and counseling can be challenging. There is wide variation in programs’ definitions of what constitutes PITC and client-initiated testing and counseling…” (Sabin and Lo, 2010: 342). “Although provider-initiated testing has shown promise, optimal implementation strategies that ensure broad coverage, while preserving human rights, remain an active area of research” (Bassett and Walensky, 2010: S77). Aggressive screening strategies must effectively balance individual rights with public health; true informed consent with the preserved ability to refuse testing is critical (Bassett and Walensky, 2010: S81).
HIV Tests Are Changing
In resource-limited settings, HIV rapid tests are the most commonly used technology (Kalou, 2012). “Nowadays nearly all health facilities use rapid testing kits requiring only a finger prick to extract a few drops of blood – and thirty minutes later the results can be known” (Hardon et al., 2011: 186). Of course, even with rapid finger prick procedures, laboratory procedures must also be of the highest standard to ensure quality, accurate testing. Guidance on quality assurance for HIV testing is available from Parekh et al. and Alemnji et al. (Parekh et al., 2010; Alemnji et al., 2011).
“Acute HIV infection is the period between HIV acquisition and the development of detectable antibodies against the virus” (Powers et al., 2011b: 257). Because the body takes time to manufacture anti-HIV antibodies, the “window period” is longer for antibody testing as compared to tests that determine the presence of HIV genetic material directly. Acute infection can be detected by nucleic acid amplification testing (NAAT) also called polymerase chain reaction (PCR), which tests directly for HIV genetic material. 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, 2009a). Different tests are used depending on the resources available. The costs for NAAT tests are currently high (Branson, 2010) and require expensive laboratory facilities generally unavailable in resource-limited settings.
Following HIV acquisition, rapid HIV antibody tests may remain negative for several weeks and require confirmatory re-testing (Frascino, 2011). However, one challenge with rapid tests is that people who receive preliminary positive rapid test results do not return for confirmatory tests (Branson, 2010). WHO’s 2010 guidance suggests a shorter window period (WHO, 2010g) of four to five weeks (Mepham et al., 2011).
New tests can now detect HIV within 15 days of infection (Branson, 2012). NAAT testing for acute infection is not currently recommended by WHO for use in resource-limited settings. NAAT testing and p24 antigen testing are costly, require specific laboratory equipment and may delay needed access to treatment and care in many resource-limited settings (Duedu et al., 2011), whereas, the benefits of rapid testing include faster turnaround, allowing for provision of timely treatment and care. New HIV testing technologies are under development (Anderson et al., 2012) and further expert consultation on this topic is likely.
Early Testing and Testing in the Era of Treatment
Early treatment (which requires early testing) can have a significant impact on HIV progression and transmission. A study in South Africa found that of 2,439 women who accepted HIV testing, 1.2% had acute infection, meaning that they were recently (within approximately two weeks) infected and were highly likely to transmit HIV if sexually active without using condoms (Kharsany et al., 2010b). This early stage of acute infection is usually when few know their HIV-positive serostatus. In a mathematical model informed by detailed behavioral and viral load data from 1987 to 2005 in Lilongwe, Malawi, an estimated 38.4% of HIV transmissions are attributable to sexual contact with individuals with early infection in 2010. According to the model, interventions targeted only at early infection substantially reduced HIV prevalence, though it would not lead to elimination, even with 100% coverage. To find those with early infection, repeat testing would be needed every three to six months (Powers et al., 2011b). However, studies with small numbers of acutely infected patients in the U.S. have shown that treatment during acute infection can achieve rapid and sustained HIV suppression (Gay et al., 2011b). Cohen et al., 2011a evaluated the use of treatment as a prevention approach for serodiscordant couples and showed the benefit of treatment for reduction of transmission to the HIV uninfected partner. [See also Staying Healthy and Reducing Transmission]
Testing Those at High Risk for HIV Must be Accompanied by Adequate Counseling
“I could not even hear what he was telling me… he kept emphasizing that I was now weak and needed care. I would have preferred him to encourage me instead, because later I came to realize that this is not a death sentence” -Anne, age 33, from Kenya (Hardon et al., 2011: 194)It is critical to provide testing and re-testing to key populations and individuals in generalized epidemics for those who are at high risk of acquiring HIV (Kilonzo, 2012), in order to identify HIV infection early and link persons with HIV care and treatment. For example, 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). A review of gray and published literature on HIV testing policies and practices in the 22 countries of the Eastern Mediterranean region found that between 1995 to 2008, only 4% of key populations at higher risk for HIV were tested for HIV (Hermez et al., 2010). Many of those at high risk for HIV do get tested repeatedly and “repeat testing may be most cost-effective for women testing at least one year previously” (Bradley et al., 2011: 732). For persons who test negative, it is important to link these persons with HIV prevention services, and to promote behavior change, where possible. [See also Prevention for Key Affected Populations]
Testing and counseling programs that focus only on identifying those in need of treatment will not be sufficient to bring the epidemic under control (Hallett et al., 2009). “Reducing risk behavior with targeted counseling for repeat HIV testers [re-testers], who may be likely to continue high risk behavior between tests” (Bradley et al., 2011) may be warranted. While most studies have found little impact of HIV testing and counseling on those who test HIV-negative, more research is needed to understand why. “Could it be that HTC… leads to relative disinhibition among those who test HIV-negative along the lines of ‘I have taken risks in the past and have not been infected, so maybe I can continue with my previous behaviors’? But perhaps it is also that the post-test counseling for those who test HIV-negative is often too perfunctory or is not heard by the client who has just been told that they are HIV negative?” (Ross, 2010: S12).
Equitable Access to Testing and Counseling Services Is Needed
To ensure universal access to HIV treatment, expanding coverage of HIV testing and counseling for women is needed, both within and outside of antenatal care settings. [See also Antenatal Care - 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). A 2009 study in rural Mozambique found that HIV testing in non-pregnant women was “uncommon” (Hayford and Agadjanian, 2010). There are often gender differences in who gets tested and under what circumstances. 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; Sambisa, 2008; Sambisa et al., 2010).
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. More recent data from some sites suggests that even outside of PMTCT clients, more women than men access HIV testing (Greig et al., 2008). One study in 2006 that surveyed all HIV testing records in one province in South Africa found that by not counting access to HIV testing and counseling via PMTCT services, females were 65.1% of those who tested as compared to 34.9% for men. When pregnant women who were tested were included, women constituted 72.7% of those tested for HIV, as compared to 27.3% for men (Snow et al., 2010). However, in others settings, such as Jamaica, only women who were pregnant were advised to access HIV testing and counseling (Campbell-Stennett et al., 2009).
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%). A study in South Africa—where counseling and testing for HIV is most frequently accessed in antenatal care settings and a few stand-alone centers (Mullick et al., 2008)—found that men rarely initiate discussions with their female partners concerning HIV testing and mostly relied on female partners to test as a means of determining their own HIV status, not understanding that sexual partners who are serodiscordant can exist (Mindry et al., 2011). Focus group discussions with young men in Malawi and Uganda found that gender norms, with masculinity equated with invulnerability and sexual conquest, were the real reasons they would not access HIV testing and counseling (Izugbara et al., 2009). Another study in Lesotho found that there was better access to testing for women and a strong fear of testing among men (Zerbe et al., 2012).
“Men, as I see them, don’t want to know about their status when they are fit and strong, they do not want to appear afraid…” -Nurse with male antiretroviral patients (Skovdal et al., 2011b)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 (Paxton et al., 2005). The same was true in Uganda, Malawi, Burkina Faso, Thailand and Korea (Mugisha et al., 2010; Namakhoma et al., 2010; Obermeyer et al., 2009; Le Coeur et al., 2009; Lee et al., 2009). A cross-sectional survey of 832 patients receiving ART in Malawi found that wives of male patients were significantly less frequently HIV tested than husbands of female patients, possibly related to the economic vulnerability of women (Cohen et al., 2010). A recent study in Vietnam with HIV-positive women found that women who did not seek out testing but were tested as a result of, for example, applying for employment, were four times as likely – and women who were tested during pregnancy were three times as likely – to seek HIV care as compared to women who were tested because their husbands were ill or died (Nam et al., 2010). A study in India found that HIV testing was almost always provider-initiated for men and in the private sector, whereas women were most likely to be advised to test by a family member (Joseph et al., 2010). Most programs have focused on individuals rather than couples, making partner testing a challenge, but a qualitative study of 53 antiretroviral drug users and 25 healthcare providers from Zimbabwe, found that men felt that couple testing encouraged men to get tested (Skovdal et al., 2011b). Addressing gender norms that suggest that “real men do not get sick” will be critical to increasing HIV testing and counseling by men, as well as creating more opportunities for men to get HIV testing and counseling (Barker et al., 2010b).
Women’s Barriers to Testing Go Beyond Access
Women face a number of barriers to accessing testing including 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). “In Kenya, the largest barrier to HIV testing among undiagnosed HIV-affected couples is their perception that they are at low risk and many have low knowledge about HIV discordance” (Grabbe and Bunnell, 2010: 346).
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. These include moral judgement and blame; ostracism by household or community; relationship termination; verbal and/or physical abuse as well as discrimination. Women who are HIV-positive are spoken of as being promiscuous women who deserve this disease as a punishment for their sins (Gilbert and Walker, 2010). Fear of stigma and discrimination from health care providers is also a concern, especially for women from marginalized groups. [See Strengthening the Enabling Environment and Structuring Health Services to Meet Women’s Needs]
Gender Differences in Testing Can Increase Women’s Risk of Stigma and Discrimination
“I did not tell my husband as he had previously revealed that he would kill me and the child if he knew we were HIV-positive. This made me feel bad and I keep our status a secret” -Female ARV patient in South Africa (Gilbert and Walker, 2010: 142)“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; Finnerty et al., 2010). Men who worry that they acquired HIV from extramarital partnerships may be less likely to disclose their HIV-positive serostatus to their spouse (Anglewicz and Chintsanya, 2011). HIV support groups and community support can increase disclosure in some settings to family, but not necessarily to sexual partners (Wouters et al., 2009a). A study of 654 people who tested HIV-positive (no sex disaggregated data) found that while partner disclosure was high for regular partners (94.8%), only 13% disclosed to casual partners (Wang et al., 2010c). Some studies have found that disclosure increases safer sex; other studies have not found this to be true (Loubiere et al., 2009). Couples counseling may facilitate disclosure (Curran et al., 2012). For women, HIV disclosure may increase support but can also lead to distress and stigma. HIV disclosure may bring rejection, abandonment, violence and regret or fear (Loubiere et al., 2009; Anglewicz and Chintsanya, 2011). Women who tested HIV-positive in the study in four Asian countries referenced above 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).
Some countries, such as China, have mandatory policies requiring HIV-positive serostatus disclosure to sexual partners (Wang et al., 2010c). Mandatory policies can discourage people from HIV testing and counseling to assess their serostatus. Mandatory disclosure can also put women at risk for violence, stigma and worse. Patients in Russia reported that they were forced by physicians and police to declare their HIV status, a procedure used to create evidence that may form the basis for criminal charges against those suspected of putting others at risk (Amirkhanian et al., 2011).
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 feared 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 HIV testing and counseling 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 aged 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).
Disclosure does not always lead to violence. Sixty-four percent of HIV-positive women and 79.5% of HIV-negative women reported that they had shared HIV test results with their partners. Among women who did not disclose, 52% reported the reason as fear of their partner's reaction but 81.9% of HIV-negative women and 48.9% of HIV-positive women reported that their partner reacted supportively to disclosure. Less than 5% of women reported any negative reactions following disclosure (Maman et al., 2001a).
Intervention approaches such as development of screening tools and new counseling approaches are important to ensure the safety of women who want to safely disclose HIV serostatus to their sexual partners. Some studies have found no increased risk for intimate partner violence following seroconversion among 3,408 serodiscordant couples during two years of follow up. Of these couples, the initial HIV-positive partner was female. Couples received joint counseling four times per year, which may have been “an indicator of the effectiveness of ongoing counseling in addressing couples’ need for support and thereby reducing the risk of IPV report over time” (Were et al., 2011: 2017). Relationship dissolution was the most common consequence of intimate partner violence during the follow up period; other consequences included loss of economic support and loss of custody of children (Were et al., 2011). It is hoped that this important study (Were et al., 2011) will provide more data on the counseling interventions used.
Different testing modalities should be evaluated with respect to increased risk of violence. For example, self-testing may be more easily used without an individual’s consent and with fewer legal protections against family members who wish to know someone’s serostatus without their consent (Ganguli et al., 2009). It is unclear if door-to-door home testing increases the risk of violence as compared to testing in a facility due to the possible lack of privacy (Alsop, 2010). [See also Addressing Violence Against Women]
In relationships where violence already exists, serodiscordance can result in additional violence and other adverse outcomes for women. 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 sero-negative 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 sero-negative husband were told to leave their homes (Emusu et al., 2009). Counseling concerning violence in pre- and post-HIV testing is very much needed.
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).
Couples Testing and Counseling Can Facilitate Disclosure and Communication Between Sero-Discordant Couples
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 many prevention interventions are targeted (Desgrees-du-Lou and Orne-Gliemann, 2008). Some sites have had success in increasing couples HIV testing and counseling, 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).
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 (Desgrees-du-Lou and Orne-Gliemann, 2008; Kelley et al., 2011). [See also Male and Female Condom Use]
Couples testing may reduce reports of violence against women, as it may address the disproportionate burden women often face in disclosure to their partner by having the provider assist the couple to cope with the diagnosis. WHO has noted this as a strong recommendation with low-quality evidence. WHO recommends that providers be sensitive to gender-based power imbalances in relationships and must be able to assess “whether and to assure that, both partner are freely able to make independent decisions about testing and disclosure…” (WHO, 2012g: 19). PEPFAR guidance states “Women should be encouraged to test together with their male partners when possible and results may be given to couples attending the session together as long as they both agree to this approach” (PEPFAR, 2011b: 12). Voluntary couples counseling can encourage men to reduce negative reactions and promote shared responsibility for reproductive health; however, if a woman does not want to disclose, her wishes should be respected and she should be supported in her decision (Cohen and Burger, 2000). Curran et al. describe numerous challenges for sero-discordant couples (Curran et al., 2012).
Women Must Have a Choice in Testing
Given the consequences they face, including violence or the fear of violence, women must have the right to opt out of “routine” testing. [See also Antenatal Care - Testing and Counseling] Some studies have shown that women are coerced into testing. A study in Nigeria found that some religious groups insisted on pre-marital HIV testing because they believed that “there was no need to continue marriage with somebody who already has a death sentence” (Arulogun and Adefioye, 2010: 85), raising issues of voluntariness, stigma and appropriate counseling. A study in Cameroon found that women tested because “a refusal would have been conceived as a challenge to medical authorities” (Njozing et al., 2010: 28). Mandatory testing, besides being a human rights violation, may not lead to any positive outcomes in HIV prevention or treatment. Some studies have found that some providers have been more explicit than others in facilitating the patient’s right to refuse an HIV test (Leon et al., 2010b).
Provider-initiated testing and counseling, implemented appropriately, has the potential to increase knowledge of HIV status and provide earlier linkage to counseling and treatment. 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). One study in Uganda and Kenya found that clients “argued that it is good if the provider initiates the testing for diagnostic purposes, because choosing voluntarily to be tested is difficult (and is) tantamount to an admission of having ‘slept around’” (Hardon et al., 2011: 190). VCT was also seen as less likely to lead to follow up care and access to treatment than PITC in a study in Kenya and Uganda. “…In the Ugandan and Kenyan health settings where we conducted our study, people were most concerned about the quality of post-test care” (Hardon et al., 2011: 198). 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; 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
PEPFAR guidance states that the core principles of “consent, confidentiality, counseling and correct test results” must be part of services (PEPFAR, 2011b: 12). 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. 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 (HRW, 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).
Routine Testing Has Been Subject to Much Debate
Routine testing has been interpreted as testing that is carried out unless the patient expressly refuses it. In some settings, routine testing has been done without the patient even knowing that HIV testing is being done. Patients should always be offered the option to decline testing, but even where protocols are in place, this is not always practiced. Whether offering patients HIV testing and providing the option of declining meets the standards of informed consent is still subject to debate. Many believe that a policy where the patient would be tested unless they specifically declined meets the ethical demands of informed consent; however, this in fact diverges from the formal rules of consent. Others argue that a patient has to be explicitly asked if they want to refuse HIV testing. From a human rights perspective, routine testing without adequate counseling can be seen as paternalistic and coercive, identifying those who are positive against their will in order for patients to access treatment and care. In addition, some have argued that shifting the burden to patients to decline testing—given the power imbalances between health providers and patients—deprives patients of the right to choose. In the Botswana study above, 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; Weiser et al., 2006a). WHO states “mandatory or coerced testing is never appropriate…” (WHO, 2012g: 19). The 2007 WHO guidelines on HIV testing [these guidelines are currently being updated (WHO et al., 2011b)] do not require HIV treatment to be available before initiation of routine testing, but WHO guidelines do state that the patient should be informed that he or she has the right to decline an HIV test. Some have argued that treatment should be a precondition for opt-out testing. However, if treatment is available, opt-out testing should be practiced since it is advantageous for the patient to access treatment (April, 2010).
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 practices are consistent with WHO protocols (WHO and UNAIDS, 2007). Increasing knowledge of HIV status in a respectful informative way is vital. 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).
Further Interventions are Needed to Support Disclosure
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). Provider notification of sexual partners has been evaluated as a possible disclosure method with a randomized study from 2008 to 2009 with 245 newly diagnosed HIV-positive patients (58.3% female) in Malawi. The study found that provider notification of sexual partners increased HIV testing and counseling by sexual partners (97% were tested) and increased early referral to care but could also result in social harms, such as abandonment. One female patient reported that her male spouse abandoned her when she disclosed her HIV status, a .5% cumulative incidence. “Screening for intimate partner violence and emotional abuse could be incorporated into post-test counseling, and further operations research will be necessary to investigate the effect of provider assisted partner notification on social harms in a variety of African settings” (Brown et al., 2011a: 441).
Others have conceptualized disclosure as a process a decision on “how, when, where, what and to whom to disclose or not to disclose” (Eustace and Ilagan, 2010: 2096) rather than a simple yes/no response (Eustace and Ilagan, 2010). The process also involves identifying one’s motive for disclosure (Medley et al., 2009b). A study in Uganda among 20 men and 20 women living with HIV in found that the most common reason for disclosure was to receive support, but also to protect others from HIV (Ssali et al., 2010). Delaying disclosure may be beneficial to women living with HIV, giving them more time to anticipate and plan for possible consequences of disclosure (Eustace and Ilagan, 2010). A cross sectional study with HIV-positive women in Cameroon found that HIV disclosure to their main partner was related to safe sexual practice. However, while 83.6% of 1,014 women disclosed their positive serostatus to their main partner, only 46% of these women knew their partner’s serostatus (Loubiere et al., 2009). Possible approaches include disclosure plans, disclosure mediated by a friend or counselor, and couple counseling. In some cases, women who disclosed faced violence and abandonment (Maman et al., 2001b; Ssali et al., 2010); however, in other cases, women who expected “to be kicked out of his life like a cat or dog” (Rongkavilit et al., 2010: 790) found that rather than rejection, her husband said: “we have a baby now and we had been together already, so we must face the future together… we had to take care of each other” (Rongkavilit et al., 2010: 790).
Feasibility of the “Test and Treat” Approach
Clearly, all possible methods to prevent HIV transmission need to be used for “combination prevention.” An analysis in The Lancet called for universal HIV testing with immediate treatment access as a way to halt the epidemic (Granich et al., 2009). If feasible, such an approach could prevent untold number of infections. However, this “Test and Treat” approach has received a range of critiques about methodology and operational constraints from a number of experts worldwide (Cohen et al., 2009b; Wilson, 2009b; Ruark et al., 2009; Epstein, 2009; Jurgens et al., 2009a; Hsieh and de Arazoza, 2009; Jaffe et al., 2009; Assefa and Lera, 2009). Mathematical modeling with very optimistic assumptions found that HIV elimination through test and treat would be possible but would take at least 70 years (Wagner et al., 2010). “Implementation of universal testing and treatment is clearly challenging given that a substantial proportion of those individuals who are currently HIV-infected and eligible for treatment do not receive it” (Hayes et al., 2010a: S84). “It is unlikely, however, that we will be able to eliminate the epidemic by treatment alone. We must also protect high-risk uninfected people from HIV-1 acquisition. This means broader implementation of existing interventions, such as male circumcision, blood and injection safety, condom use, evidence-based behavioral strategies and structural interventions” (Burns et al., 2010).
There are other difficulties as well: “…successful implementation of so-called test and treat strategies are challenged by the difficulties of testing large numbers of healthy people who are not attending health-care services, incomplete engagement in HIV care and inadequate technology to detect people with acute HIV infection who are the most infectious” (Padian et al., 2011b: 271-272). Therefore, universal testing and treatment seems unlikely in less resourced settings (Burns et al., 2010). “The extent to which pre-exposure prophylaxis and ART reach individuals with the highest viral load is central to the success of prevention approaches based on antiretroviral drugs… Hence, an important issue for both pre-exposure prophylaxis and treatment for prevention is to establish eligibility, for which high and frequent uptake of HIV testing is a requisite. In treatment for prevention, the difficulty in detection of people with HIV infection who are asymptomatic has been well documented” (Padian et al., 2011b: 271). A more recent analysis elaborated that the major assumptions of the Granich et al. study were: that all transmissions were via heterosexual sex; that acute infections account for 9% of new transmissions; high levels of HIV testing and adherence to treatment; and that significant drug resistance and treatment failures did not occur (Burns et al., 2010; Granich et al., 2009). However, in some contexts, the majority of HIV transmission occurs in the context of intravenous drug use or men who have sex with men. In some contexts where multiple sexual partnerships are common, more than 31% of transmissions may be caused by recent infections that are not yet detectable through HIV testing (Burns et al., 2010).
It is important to note that some of the studies in this section were done before treatment was available. Now that treatment has become more widely available and accessible in many countries, it is expected that testing will increase.
Further guidelines to testing can be found at the WHO website (WHO, 2012g; WHO, 2011a; WHO, 2011b; WHO and UNAIDS, 2007):