VI. Findings

The introduction of a mass HIV counseling and testing campaign using large numbers of lay people to offer health services that until recently were mostly performed by professional healthcare workers, raises a series of human rights challenges. Below, we examine these challenges from the perspective of the right to health. We focus specifically on KYS' approach to: 1) informed consent and counseling; 2) confidentiality; 3) linkages between HIV testing and prevention, care and treatment services; 4) accountability mechanisms; and 5) the adequacy of the policy and legal framework for protecting the rights of people living with HIV.

Informed Consent

Under medical ethics and international human rights law, HIV testing should be performed with the explicit, informed consent of the individual concerned.[73]

Enabling a person to make an informed decision on an HIV test is not just a question of respecting human rights-it is also indispensable for achieving the public health goals that underlie HIV testing campaigns. Advocates of aggressive HIV testing campaigns frequently say that HIV testing is the gateway to HIV prevention and treatment services, but HIV testing campaigns can only play that role if they enable people who test to act on the knowledge they obtain. At the very least, people who test negative must be counseled on how to stay negative and be given the tools to do so. A person who tests positive should receive counseling and referrals that would help him or her gain access to prevention methods, care and treatment. Without adequate counseling, HIV testing will do little to benefit the individual or the public health.

The KYS campaign entailed a risk of failing to respect the need for informed consent. After all, thousands of lay counselors with no previous experience doing HIV counseling and testing were to provide these services to the people of Lesotho. The key concerns were:

1.the possibility that counselors might pressure people into testing;

2.that people might feel obliged to test because counselors came to their homes;

3.that certain members of households-particularly women and children (anyone twelve years and older was to be offered an HIV test)-would be unable to make their own decision on whether to be tested; and

4.that consent would not be truly informed due to inadequate quality of the counseling provided.

The government of Lesotho and its partners have a duty to take steps to ensure respect for the principle of informed consent and the right to autonomy, and to protect people against possible violations. Thus, Lesotho had to make sure that informed consent was a guiding principle in the HIV testing campaign, that adequate steps were taken to minimize the risk of violations, and that lay counselors were sensitive to the voluntary nature of HIV testing and appropriately trained to provide adequate counseling and education.

The KYS Operational Plan fully embraced the principle of informed consent. It stated that,

HIV counseling and testing will never be mandatory…. Every person will therefore be tested of their own free will and their human rights will be fully respected. Those administering the test will receive training on how to obtain informed consent prior to testing and ensure client understanding.[74]

It also held that the HIV counseling and testing should not be seen as a stand-alone intervention to simply "identify those individuals infected and calculate numbers," but that it should be seen as an "entry point to appropriate post-test services designed to prevent further spread of the disease and provide treatment, care and support for those in need."[75]

However, the curriculum that was developed to train KYS counselors is completely inadequate in preparing them to obtain informed consent. The curriculum's section on pre-test counseling fails to give an overview of the elements that need to be covered in pre-test counseling; contains no guidance on conducting risk assessments with clients; does not explain what constitutes an informed decision; and does not discuss the specific challenges involved in obtaining informed consent in house-to-house settings where multiple family members may be present at the same time.[76]

Findings on Informed Consent

Our research found no evidence of involuntary testing practices, although we were unable to extensively address the question through interviews with individuals who had been tested by the KYS campaign and therefore cannot say the extent to which involuntary-or coercive-testing may be taking place. We did find that some people-primarily women who find themselves in de facto subordination to their husbands or partners in Lesotho's patriarchal society-were unable to make their own decision to be tested and that the quality of the counseling sometimes raised the question of how informed the consent some people gave to testing really was. As most of the KYS counselors we interviewed had not counseled and tested any children, we were unable to examine testing related to children under 18 years.

No Evidence of Involuntary or Coercive Testing

Almost all of the several dozen KYS counselors we interviewed told us that they presented testing as a choice for clients. About a dozen KYS clients confirmed that counselors had made it clear to them that it was their choice to agree to or decline the HIV test.

One KYS counselor explained how she offers people the HIV test:

I tell them why it is important to test; that they should not necessarily expect a positive result but that it is important to know their status so they can take care of themselves. If positive, I tell them, they will know what to do-and what not-to prolong life. I tell them that the test is voluntary. If negative, I tell them that they should retest after three months. I tell them that they can test anywhere where they feel comfortable.[77]

A client of the counselor confirmed her words. She said: "The counselor explained that the test was voluntary and that I can retest as often as I want. We were with some other lady when the counselors came. The counselor did pretest counseling together for both. The other lady didn't want to test. I was tested by myself."[78]

Another KYS counselor described how she approaches people about testing:

I introduce myself, talk about the testing work, talk about truths and myths around HIV, and give clients the opportunity to ask questions. Then I ask the client whether they feel ready to test; if ready, I proceed with counseling and testing. If not, I see if we can talk more another day.[79]

With one exception, counselors did not tell their clients that the government had started the KYS campaign and wanted people to test. The one counselor who did make this point to his clients, however, told us that he also emphasized that testing was a choice and not an obligation.[80]

None of the KYS clients we interviewed said that they had been tested against their will. In fact, it was our impression, from speaking to counselors and KYS clients in five of the country's districts, that villagers generally felt comfortable declining an HIV test. This may in part be due to the fact that the counselors were not medical doctors or nurses, but ordinary villagers. However, it is difficult to draw any definitive conclusions because of our small sample size.

Counselors consistently told us that a considerable percentage of the people they approached did not want to be counseled or tested.[81] In interviews, we asked counselors to estimate what percentage of the people they approached agreed to or declined to being counseled and tested. These estimates varied considerably, with some saying that only about three or four in ten would agree to be counseled and tested and others saying the majority of people approached agreed to the test. KYS counselors and supervisors engaged in the Mafeteng drive observed that there was wide variation from village to village-one supervisor said that in most villages the majority of people were willing to test but that "in one village people shut their doors and windows whenever we came near."[82] The supervisor speculated that the chief might have called a meeting beforehand and warned people not to agree to counseling and testing. Most KYS counselors noted that many more women agreed to test than men.

While most KYS counselors said that they made it clear to clients that testing was voluntary, some officials were less careful. Several people also told us that village chiefs introducing public gatherings sometimes told villagers that they should get tested for HIV.[83]A counselor said that one day she noticed a vehicle promoting KYS saying that KYS counselors were going to test "everyone."[84]

At the 2008 International AIDS Conference in Mexico City, the Lesotho Minister of Health, Mphu Ramatlapeng, stated that it was national policy that all pregnant women presenting at medical facilities would be tested for HIV but that people could "opt-out" of receiving the result. She further stated that those individuals who chose not to receive their result would be counseled to accept the result and that those continuing to decline the result would receive a visit from health personnel in their homes and further counseling. She cited the interests of the unborn child as the reason for this policy. A physician from Lesotho on the same panel as the Minister confirmed that mandatory HIV testing of pregnant women had become the government's policy.

Particular Situation of Women

A second concern regarding consent was the fear that in Lesotho's patriarchal society, male heads of households would make a decision-whether to consent or decline-for all other members of the family. Men have traditionally held overwhelming powers over women in Lesotho. Until the entry into force of the 2006 Legal Capacity for Married Persons Act, married women had no legal capacity. Although the law has significantly improved their legal status, traditional law and custom continue to limit their rights in areas such as property, inheritance, and contracts.[85] The 2004 Lesotho Demographic and Health Survey found that half of women who are married or living together with a partner not only do not make their own decisions about their health care, but are not even consulted on those decisions.[86]

Our interviews with KYS counselors suggest that some women were indeed not-or did not feel-able to consent to being tested. Some counselors recounted situations in which male heads of household told them that they could not test anybody in the house, thus denying other members of the household their own choice. None of the counselors said that they had encountered situations where the male head of the household decided for other household members that they should test. Some counselors also said that women who were alone at home did not feel that they could agree to an HIV test without their husbands' blessing.

Counselors were unprepared to counsel couples together or provide post-test counseling to sero-discordant couples. One counselor said that she had encountered situations where some people in a household wanted to be tested but others did not.[87] She said: "Men are very reluctant to test. Sometimes they make the decision, and the women in the household can't test. I just keep going back to such houses [hoping to encounter the women alone]." Another said that when the male in the household declined to test, most women did not want to be tested either, because of the fear that a positive result would lead to disharmony in the household.[88]A supervisor  during the Mafeteng drive said that many women she had encountered declined to be tested because their husbands were not present, saying things like "I can't do it, he's not here."[89]

Lack of Couples' Counseling

Couples' counseling and testing has been shown to be an effective HIV prevention strategy and is particularly important given the high prevalence of sero-discordance in couples. It offers some clear benefits over individual counseling, facilitating partner disclosure and linkages to HIV prevention, care and treatment. But it also entails a risk of human rights abuses due to widespread inequality between men and women.

The KYS campaign did not make use of the potential of couples' counseling, as KYS counselors did not receive the necessary training to do so. As a result, most KYS counselors conducted strictly individual HIV counseling and testing. For example, a supervisor during the Mafeteng drive said that when there were multiple family members at home, counselors would send all but one family member outside and counsel and test them one-by-one.[90] While done with the intention to protect the privacy and autonomy of these people, had training been adequate, more effective couples' counseling could have been conducted, potentially increasing the impact of the campaign while ensuring the rights were protected.

KYS Campaign and Children

The age of consent to medical procedures in Lesotho is 12 years and the government included young people between the ages of 12 and 18 years old in the target group for the KYS campaign. The operational plan made no mention of any special procedures for obtaining informed consent from members of this group, evidently suggesting that they be treated exactly as adults. The module on HIV counseling and testing that was used to train KYS counselors contained no specific instructions on obtaining informed consent from minors between 12 and 17.

In many countries, HIV testing guidelines suggest that only under certain specific circumstances can individuals under 18 get tested without parental consent. For example, in Kenya, the HIV testing policy says that:

Young people under 18 who are married, pregnant, parents, engaged in behaviour that puts them at risk or are child sex workers should be considered 'mature minors' who can give consent for VCT, although the counsellor should make an independent assessment of the minor's maturity to receive VCT services. [91]

For children not judged to be "mature minors," or children under the age of fifteen, the Kenya guidelines recommend, "[T]esting of minors under 18 who are not mature minors, especially those under 15, should be done with the knowledge and participation of their parents or guardians." [92]

While these types of regulations discourage testing of children and adolescents who, for one reason or another, do not wish to speak to their parents about the test, they also are intended to protect children who may face added difficulties testing for HIV without familial support, or who are unable to assess the potential risks and benefits associated with testing. A child's ability to consent to a test is even more difficult when the parent is present to exert influence on the child's decision, to demand that the result be disclosed, or to inquire why a test has been refused. Children also have very specific needs in terms of post-test counselling and access to care. Health services are often not youth-friendly and many adolescents avoid going to general health centres.

As most counselors we interviewed had tested few or no people in this age group, we were unable to document potential problems linked to this policy and to the lack of specific training, or to document what problems these failings led to in practice. Statistics suggest, however, that KYS counselors did counsel and test considerable numbers of people in the age group during the Mafeteng drive-2087 people between 12 and 19, 56 of whom tested positive (2.7%).[93]Lesotho needs to ensure that counselors who offer HIV testing to children between 12 and 17 years old have appropriate training and skills to do so.

Poor Quality Counseling Undermines Informed Decisions

In order to make an informed decision about an HIV test, a person needs adequate information. If counseling is poor, incomplete, or incorrect, this may result in a violation of the principle of informed consent.

The training course for KYS counselors did not identify the basic elements of pre-test counseling. The WHO and UNAIDS guidance on provider initiated HIV counseling and testing in healthcare settings, however, provides a minimum list of issues that must be discussed during pre-test counseling:

·The reasons why HIV counseling and testing is being recommended;

·The clinical and prevention benefits of testing and the potential risks, such as discrimination, abandonment or violence;

·The services that are available in the case of either an HIV-negative or an HIV-positive test result, including whether antiretroviral treatment is available;

·The fact that the test result will be treated confidentially and will not be shared with anyone;

·The fact that the patient has the right to decline the test;

·In the event of an HIV-positive test result, encouragement of disclosure to other persons who may be at risk of exposure to HIV;

·An opportunity to ask the health care provider questions.[94]

In our research we found considerable evidence of poor pre-test counseling practices. A number of supervisors during the Mafeteng drive told us that they had observed KYS counselors who provided very little pre-test counseling. One, for example, said that she observed a counselor proceeding straight to the HIV test when the client told her she knew what HIV and AIDS were.[95]It is hard to assess, however, how widespread this problem is. In interviews with Human Rights Watch and ARASA, KYS clients often had difficulty remembering exactly what KYS counselors had told them during pre-test counseling and, in any case, the limited number of KYS clients we were able to interview does not allow for broader conclusions to be drawn. All KYS counselors we interviewed insisted that they did not proceed straight to offering the test when clients said they knew about HIV, but went through the basics of HIV and AIDS with clients.

Yet, in our interviews with KYS counselors, we found clear indication that many did not adequately counsel their clients on the issues listed above, which is, perhaps, not surprisingly, given that the training module did not list them. We asked counselors to describe how they approached clients, and what issues they covered during pre-test counseling. Over and over, we found that counselors were unable to give us a run-down of the issues they covered in counseling sessions.

Confidentiality

Under international human rights treaties, states must ensure confidentiality of medical information. This means that information about a person's medical condition may not be arbitrarily disclosed to third persons without the specific consent of the individual concerned.[96]

As with informed consent, the deployment of large numbers of lay counselors with limited training posed a risk of breaches of confidentiality. The KYS Operational Plan emphasizes that confidentiality will be guaranteed to all those who test through the campaign.[97]While the training module on general counseling for people living with HIV and AIDS gives considerable emphasis to the need for confidentiality, the section on pre and post-test counseling offers only fleeting references and does not provide counselors with any guidance on either the specific challenges of ensuring respect for confidentiality posed by the campaign, or on managing disclosure.

Findings on Confidentiality

We did not document any individual cases of breaches of confidentiality. In some of our interviews with KYS counselors, however, we found that some counselors did not fully appreciate the importance of confidentiality and might inadvertently disclose people's HIV status to others. Some nurses and patients we interviewed told us that they had come across cases of breaches of confidentiality.

A non-KYS lay counselor at one healthcare clinic told us that she had come across various breaches of confidentiality by KYS counselors.[98] She claimed that "counselors don't respect confidentiality. They talk to others about the results. Talk about it to family." A KYS counselor said that when he asked people why they did not want to test, some people said that the counselors were not trustworthy and disclosed people's status to others.[99]

Linkages to Other HIV-Related Health Services

The opportunity to learn one's HIV status is an important aspect of the realization of the right to health and anyone who wishes to learn their status should be able to. However, the right to know your status should not be viewed as an autonomous right-after all, there is little point in knowing your status if you cannot do anything with that knowledge. The right to health therefore requires that HIV testing services should be offered as part of a continuum of health care services. This continuum should include prevention, care and treatment services. People should have access to information and tools to protect themselves and others from HIV; to immune level testing, antibiotics to suppress or treat opportunistic infections, and antiretroviral drugs; and to support services to help them cope with the knowledge of their status.

The level at which these services should be made available will depend on the level of resources of the country in question. Yet, a country that undertakes an aggressive campaign to strongly encourage people to test for HIV needs to recognize that this brings with it the responsibility to proportionally offer the other services of the continuum of care. It would not be consistent with the right to health to strongly encourage people to test for HIV without offering them at least the basic package of prevention, care and treatment services. Thus, a country that undertakes an aggressive testing campaign should, as its efforts result in more people knowing their HIV status, expand the care, support and treatment services that are available to these people.

Embedding HIV counseling and testing into a broader spectrum of HIV-related services is not just a rights issue, it is also crucial for achieving the public health goals underlying expanded testing campaigns. Only if people who test have access to prevention, support, care and treatment services will a testing campaign be able to make a public health impact.

Findings on Linkages to Prevention Services

Research has repeatedly found that one-off HIV prevention interventions are unlikely to change people's behavior.[100]Thus, for the KYS campaign to be an effective tool in HIV prevention, one of the goals set out in the Operational Plan, linkages and referrals to sustained HIV prevention-information and services, as well as structural interventions-were crucial. 

According to an October 2006 progress report on the KYS campaign, the objective of strengthening post-test services was "almost attained." The report stated that referral tools had been developed by the Ministry of Health and Social Welfare and that a stakeholders meeting had been called to revise the referral mechanism.[101] It does not appear, however, that the post test service referral tools and databases were ever updated or distributed, and linkages to HIV prevention were apparently never implemented. Our research found that people who tested negative did not receive any referrals.

Our research found that there was little effort by counselors to help their clients devise strategies for staying negative and that in many cases no, or very few, condoms were provided to the client. Often, the lack of condom provision was due to their limited availability. We also found some evidence that post-test counseling for people who tested negative was often perfunctory. For example, several supervisors during the Mafeteng drive, as well as health center nurses, said that they had the strong impression that counseling for people who tested negative was almost non-existent.

We repeatedly found problems with condom provision. Most KYS counselors said that they had a limited supply of male condoms and that they had no female condoms at all. Some said that they had to go to the local clinic to pick up condoms because the KYS office was not offering any. While some counselors said that they always handed out condoms-even if in small numbers-many others said that they only offered condoms when people requested them. Some counselors said that they demonstrated condom use while others did not.

A UN official expressed concern that in the rush to scale-up treatment, the government was generally neglecting prevention-that no education on sexuality and HIV was taking in place in the schools, that too little was being done to discourage multiple concurrent sexual relations, and that too little condom promotion was taking place.[102]

The KYS campaign could have been an important vehicle for HIV prevention in sero-discordant couples. However, counselors did not receive appropriate training in conducting couples counseling and were unable to counsel people on sero-discordance or help couples devise effective strategies to protect their health.

Linkages to Care and Treatment

Because of the lack of monitoring by the KYS program and the Ministry of Health, it is impossible to say what percentage of individuals testing positive sought care and treatment and what percentage received it. ARASA and Human Rights Watch did not receive any reports that KYS clients were denied ART treatment when they needed it or that they were placed on waiting lists. As noted above, the availability and accessibility of ART has increased considerably since 2005 and the number of people on ART is now about 21,000, up from 8,500 in 2005. The scale-up of treatment is ongoing, with more healthcare centers planning to offer ART and the patient load continuously increasing.

Despite this progress, it is unlikely that the healthcare system would have been able to absorb the numbers of new patients that the KYS campaign would have generated if it had tested people at anywhere near the pace envisioned by the Operational Plan. In interviews with ARASA and Human Rights Watch, staff at various ART centers said that, as it was, they were operating at or beyond capacity and that it would have been impossible to absorb considerably increased numbers of patients. Although nobody tracked the number of KYS referrals among current patients, several healthcare workers estimated that their numbers were low.

The Mafeteng testing drive, however, provided a preview of the kinds of problems that might have been. During the drive, 13,342 people were tested by KYS counselors of whom 1,468 people tested positive. Thus, on average about 80 people were referred to each of the 17 healthcare centers in Mafeteng district for immune system (CD4) testing, enrollment into HIV care, and possibly ART. Even allowing that some of these people may not have sought follow-up care, this is a considerable number for clinics that are staffed by one or two nurses at best.

Indeed, several nurses in Mafeteng district complained about the considerable increase in workload in the weeks of, and following, the drive. One nurse said: "Many people were coming in, too many."[103]Another nurse estimated that her clinic had had about fifty people come in for follow-up services. She said, "The workload really increased after the Mafeteng drive. I did not have enough staff. I was taking blood for CD4 then had to provide antenatal care. It was too much."[104] Her clinic has one nurse, one nurse assistant, and an HIV counselor who is not authorized to take blood. The nurse said that she had run short of containers for blood storage and had to turn some patients back.

These nurses and others told us that they were informed of the Mafeteng drive just a week before it started. One nurse said that she received no communication from KYS about the campaign. "KYS told the counselors to start the drive," she said, "and I learned about it from the counselors."[105] Hospital laboratories were similarly unprepared for the steep increase in demands for CD4 testing, and no preparation was made for individuals tested in villages far from health centers that offered ART. The Operational Plan made no reference to TB diagnosis and treatment, and no specific preparation was made for increased demand for TB treatment.

Problems with Post-Test Counseling

Post-test counseling is a crucial element of ensuring proper linkages between HIV testing and follow-up services. We found considerable evidence, however, that many KYS counselors do not properly counsel people who test positive, particularly with respect to partner disclosure.

Various nurses and HIV counselors at healthcare clinics, as well as supervisors during the Mafeteng drive, told us that they had observed considerable problems with post-test counseling for people who tested positive. One nurse from a clinic in Mafeteng distict, for example, said that she had instructed her staff to re-counsel all KYS referrals because of the considerable gaps in counseling.[106] A healthcare worker at a different healthcare center, which re-tests and re-counsels all KYS referrals, said that post-test counseling by KYS counselors was often limited to informing clients that they were HIV positive and needed to go to the clinic for a CD4 test, and giving them a referral form. She said: "Some people come in very scared and weren't counseled at all."[107]

Many of the counselors noted that a considerable percentage of women-two or three out of ten by most estimates-expressed concern about disclosing their status to their partners. These women said they were afraid of their partners accusing them of sleeping around and bringing HIV into the household. They also feared harassment and discrimination, abandonment, or beatings. For example, one healthcare worker said,

Women are afraid to tell husbands. They fear beatings, insults. They worry that disclosure will destroy peace in the house. Some men may start calling them names, accuse them of sleeping around.[108]

In response, most KYS counselors said that they told the women they should try to bring their husbands to them for couple's counseling and testing or that they should talk to their partners about HIV and the importance of HIV-testing to convince them that they should get tested themselves. Few KYS counselors, though, said that they followed up with women after the post-test counseling to learn whether or not the women had in fact disclosed and what their experiences had been. While some KYS counselors referred such women to the local clinic or a support group, none referred them to support groups specifically able to address women's rights and provide psycho-social counseling, legal advice, or other support to women at risk of domestic violence due to disclosure of their HIV status to their husbands or partners.

Linkages to Support

Despite plans to provide resources and training to support groups for people living with HIV, KYS has done little to enhance the capacity of support groups, or to ensure that individuals were routinely referred to these groups. Although materials exist-for example, the Lesotho Network of People Living with HIV and AIDS has produced a book with information on several hundred support groups throughout Lesotho-KYS has not used these materials or developed their own brochures or leaflets. In 2007, UNAIDS funded the Lesotho Network of People Living with HIV and AIDS (LENEPWHA) to hire and second someone to the KYS campaign to specifically work on linkages between KYS and support groups. At the time of our research, this person had just started her work with KYS, was visiting various support groups around the country and was developing hand-out materials for KYS counselors.

Accountability

States obligations under human rights law include not only the duty to respect human rights norms, but also to protect them.[109] In the context of the right to health, when new public health policies and programs are developed, states must show due diligence in preventing abuses from happening and ensuring that corrective action is taken as early as possible if they do happen. This is particularly so if the policies and programs have serious potentially negative human rights implications. For the KYS campaign, this meant that, apart from offering adequate training for lay counselors, proper supervisory arrangements and a monitoring system should have been put in place.

Supervision

The Operational Plan did not seek to set up a special supervisory system for the KYS campaign. With a minimal skeleton staff, the campaign did not have the capacity to provide meaningful supervision to the thousands of lay counselors who were to be trained. Instead, it sought to strengthen the existing system "at the district and community levels." This was to be achieved by revising health center supervisory checklists to include village supervision on HIV testing and counseling; orienting health center nurses in the community in such supervision (including the checklist); and supervising community HIV testing and counseling teams.[110]

In practice, supervision of KYS counselors rested almost completely with nurses and professional HIV counselors at local healthcare centers. Thus, in addition to selecting KYS counselors and providing them with training, these overworked healthcare workers were also tasked with providing supervision to an average of some 20 to 30 KYS counselors per clinic. It is hard to see how the authors of the KYS campaign had envisaged that understaffed and overburdened healthcare centers in Lesotho could offer meaningful supervision to such large numbers of counselors who were going to be offering counseling and testing in villages that were often several hours of travel away from the clinic.

While some officials with the KYS campaign insisted that functioning supervisory mechanisms were in place, most nurses we interviewed openly acknowledged that they did not have the capacity to provide meaningful supervision to counselors once they went into the villages, which is, perhaps, not surprising considering that providing meaningful supervision to several dozen counselors during attachment was a big challenge.[111]Also, it appears that the supervisory role nurses were supposed to play was never conveyed to them clearly. One nurse said, "Maybe I'm supposed to supervise counselors but I wasn't told. [In any case,] I cannot go out there to work with them. I don't have transport. I don't have time. We're only two nurses here."[112]

Another nurse echoed those remarks, saying,

The counselors are out in villages most of the time. I'm not with them when they're out there. We do have meetings here twice a month. We just don't have enough staff. We do ART here, care for under-fives, antenatal care, tuberculosis, etc. I don't have enough people to do supervision in the field. …we're short staffed, so short staffed.[113]

The majority of KYS counselors we interviewed said that there had essentially been no supervision once they went into the communities. They said that they had never been accompanied by nurses or professional HIV counselors on their work in the villages, and that their counseling and testing in the field had never been observed by an experienced counselor or healthcare worker. [114]

Supervision during the Mafeteng drive

During the Mafeteng drive, KYS arranged for supervisors to accompany its counselors in the field. Most of the supervisors we interviewed said that they had supervised a group of 12 to 15 KYS counselors. They had accompanied these counselors into the villages while they were going from house to house to offer HIV counseling and testing. The supervisors said that they had served a number of roles: they observed some HIV counseling and testing sessions by KYS counselors; were a resource for questions and problems; and led discussions with the group about issues encountered. Some also said that they compared used test strips against the forms counselors filled out.

Many of the supervisors encountered significant problems with counseling and testing. Several told us that most of the KYS counselors they oversaw had never seen test kits before; that they found significant discrepancies between test strips and the forms the counselors had filled out; or discovered that the counselors were unable to properly counsel their clients. They described a variety of steps that they took when encountering such problems. Some said that they conducted impromptu refresher trainings; some went back to certain homes to re-test people because of doubts about test results; and some said they provided feedback on counseling to counselors after observing sessions. As such, the supervision system fulfilled a useful function.

Yet, the supervisory system also had its limitations. One supervisor noted that it was "difficult to monitor the work. There were two supervisors for 22 counselors who were supposed to cover more than 30 villages."[115]Another supervisor said that there was such a need for additional help at the healthcare center where her counselors were working, that she spent much of her time at the clinic counseling and testing women who were seeking antenatal care.[116] Several supervisors also said that the KYS leadership did not truly listen to the problems that supervisors were identifying, or take steps to address them.

Quality Assurance, Monitoring and Evaluation

An important element of accountability is ensuring properly functioning quality assurance, monitoring and evaluation systems. As part of quality assurance, the Operational Plan proposed that counselors would take a dried blood sample from every tenth person they tested and bring that sample to the healthcare clinic for testing. This system would allow the authorities to both identify potentially defective or unreliable batches of test kits but also flag potential problems with counselors.

However, this procedure was never implemented. None of the counselors we interviewed said that they had ever taken a dry blood sample. Officials with KYS and the World Health Organization confirmed that no quality assurance testing had been done. One WHO official acknowledged that no quality assurance was being done at the time, but said that a task team on quality assurance had been formed and was setting up a decentralized quality assurance system. As of this writing, quality assurance procedures were being implemented in two of Lesotho's ten districts.

As a result of the lack of quality assurance, the KYS campaign has no way of collecting information on the reliability of either the test kits used or the administration of those kits by KYS counselors. While some false positives may be discovered when a KYS client comes to the clinic and his or her CD4 count turns out to be suspiciously high-which, we found, has happened several times-this is not the case with people who test negative. Unless these people heed KYS counselors' advice to retest after three months, the likelihood that such false negatives are discovered is very small. Underscoring the importance of quality assurance mechanisms, there have been several reports of reliability problems with rapid tests.[117]

The Operational Plan also envisioned an internal monitoring and evaluation process. This included the development of a database; training of staff for data collection, entry and analysis; and the production of monthly reports. It would, according to the Operational Plan, "be crucial to understanding whether or not the Know Your Status campaign is on the 'right track' while it is being implemented and the impact it has had (or not) when it ends."[118]

A WHO official said that the monitoring and evaluation database had been developed.[119]She said that people had been trained, that it had been used in Mafeteng, and that it would now be evaluated.

Independent Oversight

The independent oversight mechanism was to specifically monitor respect for human rights principles. According to the Operational Plan, independent monitoring committees would be created at the national, district and community levels that would "monitor the roll-0ut of the campaign and report any grievance or violations."[120] These committees were to consist of representatives of people living with HIV and AIDS, businesses, churches, youth groups, and women's organizations. The national committee would also operate a telephone hotline for complaints. The national committee was to collect information from the district and community level committees and produce reports at least twice a year to the National AIDS Commission.

Although a UN official said that the national oversight committee had been set up, it was not functional.[121]The district and community committees had never been created. As a result, KYS clients lacked any KYS-specific avenues of complaint when problems with KYS occurred. They could potentially go to local support groups but these played no formal role in the KYS campaign, their local clinics did not have any specific mechanisms to receive KYS-related complaints, and in any case, KYS clients were not advised of the possibility to complain.

Not only has the failure to set up these monitoring, evaluation and oversight mechanisms led to a dearth of information about the implementation of the KYS campaign and potential violations of human rights associated with it, it was also an important missed opportunity to engage and strengthen civil society in Lesotho. While the Operational Plan identified networks of people living with HIV, support groups and civil society as important resources for ensuring that the KYS campaign did not lead to human rights abuses-and had budgeted some funds for training of these groups-in the end they were denied the opportunity to play a meaningful role in oversight. Support groups, positive networks and other civil society organizations in Lesotho should play a key role in formulating HIV-related policy, providing services, and ensuring accountability.

Protections for People Living with HIV and AIDS

In their guidance on provider-initiated HIV testing and counseling in healthcare facilities, WHO and UNAIDS state that, as such testing and counseling is implemented, "equal efforts must be made to ensure that a supportive social, policy and legal framework is in place to maximize positive outcomes and minimize potential harms to patients."[122] A human rights based approach also requires that such efforts be undertaken when rolling out universal HIV counseling and testing strategies.

The KYS campaign envisioned encouraging hundreds of thousands of Basotho to test for HIV and, if targets had been met and people had tested positive at about Lesotho's prevalence rate, this would have led to tens of thousands of people learning that they were HIV positive. It would be unacceptable if these people were to find, when encountering discrimination or other negative consequences of their HIV status, that they did not enjoy adequate protection under the law, or had no access to effective remedies. It was therefore particularly urgent for Lesotho to ensure that all people living with HIV and AIDS were protected by law against discrimination and other negative human rights consequences, such as abandonment by family, property grabbing, domestic violence, or discrimination in the workplace or in healthcare facilities.

The 2006 National HIV and AIDS Policy and the accompanying National HIV and AIDS Strategic Plan for 2006-2011, which outline the government's response to HIV and AIDS, identifies the development of a minimum package of legislation to safeguard the rights of people living with HIV and AIDS, and of girls, women and other vulnerable groups, and to create a legal and policy environment that reduces vulnerability to HIV and AIDS.[123]Both the Policy and the Strategic Plan recognize basic human rights principles. Indeed, a number of important steps have been taken in recent years to this effect, but much still remains to be done.

Protection against Discrimination in the Work Place

The Labor Code, as amended in 2006, prohibits pre-employment testing and testing during employment, ensures confidentiality and non-disclosure, and prohibits discrimination in employment.[124]It is broad and follows human rights principles, providing protection to employees who are living with or presumed to be living with HIV or AIDS. However, the Labor Code only applies to private employers and state-owned corporations, not civil servants. As the government of Lesotho is one of the biggest employers in the country, it is important that similar provisions ensuring non-discrimination at the workplace apply also to civil servants. A draft HIV and AIDS Bill appears to ban discrimination in both the public and private sectors but this bill has not been finalized yet.[125]

Women's Rights

Lesotho has recently taken a number of important steps toward expanding the rights of women. These steps also provide women living with HIV and AIDS significant protections against abuse. Until 2006, common law provisions deprived married women of legal capacity. A married woman could not undergo medical surgery without the consent of her husband; sign a contract; get a bank loan; or institute legal proceedings in her name. In 2006, Lesotho adopted a new Legal Capacity of Married Persons Act that granted women legal capacity and removed the overwhelming legal power husband had over their wives.[126]

The 2003 Sexual Offenses Act recognized for the first time the crime of marital rape, enabling women to refuse sex with their spouse.[127]In 2003, a special police unit on children and gender-based violence was created, which works closely with women's rights groups to disseminate information about gender based violence to communities all over Lesotho.[128] However, no specific legislation on domestic violence exists to date and a women's rights activist told us that she did not think parliament could be persuaded to adopt such a bill in the near future.[129] While no dependable statistics are available, domestic violence against women is believed to be widespread.[130]

Although these laws have greatly improved women's legal position, the new legislation has done little so far to improve the position women have in the family in practice. Many men continue to see their wives as their property. A women's rights activist, for example, told us that at public gatherings where she spoke about violence against women and marital rape men would sometimes speak out indignantly, saying that since they paid a dowry for their wives they should be able to have sex with them whenever they wanted.[131]

Protection of Property

The Inheritance Act of Lesotho dates back to 1873 and is based on customary practices, which discriminate against women.[132]

Unfortunately, the draft HIV & AIDS Bill is silent on the issue of inheritance. Lesotho is a party to the Convention on the Elimination of Discrimination against Women (CEDAW),[133] which is clear about the specific obligations to safeguard women's right to equal enjoyment of property rights, including in areas of inheritance. CEDAW requires states to take appropriate measures to accord the same rights to men and women "in respect of the ownership, acquisition, management, administration, enjoyment and disposition of property."[134]  General Recommendation 21 of the CEDAW Committee specifically addresses inheritance, reminding states that, "There are many countries where the law and practice concerning inheritance and property result in serious discrimination against women.… Such provisions contravene the Convention and should be abolished."[135] The Inheritance Act and draft HIV and AIDS Bill should be amended to grant women and children inheritance rights in line with Lesotho's international obligations under CEDAW and the Convention on the Rights of the Child, and to outlaw property grabbing,[136] the unlawful appropriation of property by relatives of the deceased (usually the husband).