November 17, 2008

V. Background

Lesotho is a small country with a population of approximately 1.9 million.[32] Over half the population lives on less than U.S. $2 per day and average life expectancy is 42 years.[33]Poverty is most deeply entrenched in rural areas, where the population has experienced the gradual degradation of land, severe drought, and loss of human capital due to migration and disease. Lesotho's struggling economy is almost entirely dependent on South Africa, with tens of thousands of Basotho, as inhabitants of Lesotho are known, working in South Africa, often in the mines.

Lesotho has one of the most serious HIV crises in the world: an estimated one-fifth of the adult population is believed to be infected. Although HIV prevalence among women at antenatal clinics in urban areas had jumped from about 5 percent in the early 1990s to around 35 percent by 2004, Lesotho's response to the HIV epidemic was slow. In 2004, Lesotho had only one facility in the country that was providing services to prevent mother-to-child transmission for pregnant women with HIV and a total of three VCT sites.[34]  While the country adopted an HIV and AIDS policy in 2000 and a three-year strategic plan for combating the disease in 2003, by 2004 it had yet to develop guidelines on such crucial issues as HIV testing, prevention of mother-to-child-transmission, infant feeding, nutrition for people living with HIV, home-based care, orphan care, or TB and HIV.[35]The South Africa-based Human Sciences Research Council identified a lack of human resources and political will, government bureaucracy, institutional rivalry and duplication of efforts as factors in this slow response.[36]

In recent years there has been notable progress in Lesotho's response, with high level government officials recognizing the threat of HIV and AIDS, and the healthcare system increasingly offering prevention and treatment services. In 2000, King Letsie III declared HIV and AIDS a national disaster.[37] In 2004, the prime minister, Pakalithi Mosisili announced a national testing campaign.

A number of international public health advocates, such as Stephen Lewis, the former UN envoy for HIV and AIDS in Africa; and Dr. Jim Yong Kim, the former director of the HIV department at the World Health Organization (WHO), began to speak out publicly about the disaster that was taking place in Lesotho. With the help of international humanitarian agencies and the donor community, Lesotho has rapidly expanded access to antiretroviral treatment.[38]  While in 2003, only about 1,000 people were receiving ARV-only an estimated 3% of those in need-that number rose to more than 21,000 people-about 25% of those in need-by early 2008.[39]All hospitals in Lesotho now offer antiretroviral treatment to patients, and an increasing number of health centers now do so as well.

Despite the increased attention and resources, however, the HIV epidemic has posed enormous challenges for Lesotho's severely overstretched healthcare system. Nationwide there are fewer than 90 doctors, and many are non-nationals on short-term contracts.[40] Nurses are similarly in short supply. Only six of 171 health centers in the country have the minimum staffing required and from 1994 to 2004 the number of employed nurses fell by 15%, due to low salaries, excessive workload and HIV disease.[41]

The Know Your Status Campaign (KYS)

Inception of KYS

In 2004, the prime minister of Lesotho, Pakalithi Mosisili, announced a national HIV testing campaign, entitled the Know Your Status (KYS) campaign. HIV counseling and testing was the key to a robust response to the epidemic, he said, stating that knowing one's status would "help stop the pandemic from spreading to those who have not yet been infected at the same time as assisting those who are already infected to live longer, and better quality lives."[42] Despite being initiated by the prime minister, the campaign never truly took off.[43]

In 2005, Dr. Jim Yong Kim, then-director of the HIV/AIDS department at WHO, expressed an interest in the fledgling campaign. WHO became actively involved in the development of an operational plan for the campaign that sought to offer an HIV test to all Basotho of twelve years and older over the course of a two-year period. The Operational Plan that eventually came out of this process summarized a grand vision for the testing campaign, as the centerpiece of Lesotho's HIV strategy,

…serving as a key entry point to all three services [prevention, treatment, care and support]. In particular, counseling provides a critical opportunity for prevention education and behavior change support for all Basotho and referral to appropriate treatment and care services for those who are HIV positive.[44]

It was anticipated that the campaign would bring people together behind the common goal of beating HIV,

The direct involvement of communities in Lesotho, including people living with HIV & AIDS, in planning and carrying out the Know Your Status campaign will help foster a sense of community ownership, which, in turn will impact on participation rates. By properly linking this with quality counseling and appropriate post-test services for both prevention and treatment, there is greater likelihood that the silence, denial and stigma that permeates the HIV epidemic in Lesotho will start to dissipate, thereby helping to normalize HIV & AIDS.[45]
And, Operational Plan continues,
Combined with adequate prevention, treatment, care and support services, it is reasonable to expect that the HIV counseling and testing program will, over time, have a dramatic effect on the epidemic in Lesotho.[46]

The concept of Lesotho's KYS campaign generated considerable excitement among some public health experts and advocates, as well as high expectations of impact.[47]On December 1, 2005, as the campaign was being launched, Dr. Kim of WHO expressed his expectations to The Times of London,

This will be a major step forward. If we have 80 or 90 percent uptake of testing, which we believe we can, it will be a hugely effective way of reducing the rise in HIV infection. It could have as important an impact as a moderately effective vaccine.[48]

Dr. Kim also told the newspaper that the campaign would be a blueprint for other nations crippled by the disease and that similar universal testing programs should be considered for any country with infection rates above 10 percent.

The Operational Plan

The Operational Plan set out a detailed roadmap for the HIV testing campaign that included the development of various policy documents to guide the campaign, the selection and training of counselors, extensive outreach to popularize the KYS campaign, the scale up of other HIV-related services, and the roll-out of the testing campaign itself. In total, the Operational Plan sought to offer an HIV test to 1.8 million people (this was downgraded later to 1.3 million) by the end of 2007.[49] The plan also contained a detailed, itemized budget of about US$12 million.

The driving force behind the KYS campaign was to be 7,200 healthcare workers:

3,600 lay counselors and 3,600 community health workers, to be selected from communities all over the country, including from existing village health workers. The lay counselors and community health workers were to be provided both formal and on-the-job training to conduct the counseling and testing and broader mobilization and education. The Operational Plan noted that with new testing technologies "[l]ay personnel can be easily trained to carry out the rapid test." It did not, however, openly discuss the challenges of providing adequate pre and post-test counseling, which requires considerable knowledge of HIV as well as interpersonal skills that would allow a counselor to speak about sensitive topics such as sexual behavior, condom use, and power dynamics in sexual relationships.

The counselors and health workers were to receive 100 Maloti (approximately U.S. $16) per month for their work.[50]The counseling and testing was to be conducted according to a national HIV counseling and testing policy that was to be designed especially for the KYS campaign. Testing was to be voluntary and test results confidential. Counseling was to include pre and post-test counseling, safer sex counseling, and condom education and provision. After testing, people were to be referred to post-test services whether they were positive or negative.

The Operational Plan sought to ground the campaign in local communities. In the initial phase, the campaign was to reach out to community leaders, educate them about HIV and the importance of testing, and ensure their support for and ownership of the campaign. After that, each community was supposed to decide for itself whether it wanted testing to take place through door-to-door campaigning, through public gatherings, or provider-initiated testing at healthcare facilities. The plan also called for phased implementation of the campaign based upon the assessment of the preparedness of communities to provide post-test services, including treatment and psychosocial support.

The campaign's communications strategy was aimed at "building knowledge and changing attitudes and behaviors,"[51]using both mass media and interpersonal communications. The campaign intended to include public service announcements on TV and radio, outreach to newspapers, and the production of various materials, such as posters and pamphlets, about HIV testing and the Know Your Status campaign.[52]Mass education sessions were envisioned for every village in the country. Village chiefs would be asked to call traditional public gatherings, known as pitso's, that villagers, according to local tradition, are expected to attend. At these pitso's, counselors would provide information on HIV and AIDS and the importance of HIV testing.

Once a village was deemed ready, the testing campaign was to start. KYS counselors were to go from house to house to offer the HIV test or offer testing at pitso's. Counselors were to refer people who tested negative to "post-test prevention services to help them stay HIV uninfected."[53]People who tested positive were to be referred to local clinics and to support groups. The Operational Plan had budgeted 1.5 million Maloti, or US$240,000, to help train these groups and strengthen their capacity to provide care and support.[54]

The quality of services would be monitored through: 1) supervision by local health personnel; 2) the establishment of a monitoring and evaluation system at various levels, and 3) the creation of independent oversight bodies. Nurses at health centers were to provide ongoing supervision to KYS counselors.[55]Every tenth rapid test was to be confirmed with a highly sensitive ELISA test to ensure the quality of the rapid test and these data would be centrally collected.[56] An internal monitoring and evaluation process would be developed to track the progress of the KYS campaign, and external monitoring committees would be established to monitor the campaign and report on any human rights problems that occurred during its implementation.[57]

The campaign was to be led by a national staff of twelve. In each district, three dedicated staff were to be hired, including coordinators and logistics managers. Nurses at healthcare centers were to play a key role in selection, training, and day-to-day supervision of counselors.

While the Operational Plan acknowledged that the KYS campaign would create additional burdens for the health sector generally, the US$12 million plan did not provide for increased funding to regular healthcare structures to expand their capacity to offer prevention, care and treatment services. Despite an entire chapter devoted to strengthening post-test services, almost no funding was committed to this crucial goal. The budget contained only a 3,000 Maloti (about U.S.$500) expense line for one expert meeting on revising referral tools.

The Implementation of the KYS Campaign

On World AIDS Day, December 1, 2005, King Letsie III formally launched the KYS campaign, despite the fact that campaign funding had yet to be secured. Fraught with difficulties from day one, the detailed plans of the Operational Plan were abandoned almost immediately, corners were cut on implementation of the human rights protections, and the implementation of the campaign as a whole came to be characterized by constant improvisation and ad hoc decision making. The campaign faced four interconnected problems: an extremely ambitious campaign plan, lack of resources, poor management, and a lack of political commitment.

WHO, after being heavily involved in the drafting of the Operational Plan, limited its involvement in the implementation phase, dedicating a single staff person to the campaign in 2006 before finally adding a second in 2007. A number of public health specialists in Lesotho expressed concern to ARASA and Human Rights Watch that this report would single out the government of Lesotho for criticism over the flaws of the KYS campaign, whereas they felt that WHO had forced the campaign on the government but failed to provide it with the support needed to properly implement it.[58]

A lack of resources hamstrung the campaign from the very beginning. The estimated cost of the campaign-about US$6 million per year–was about three-quarters of the country's entire HIV/AIDS budget.[59]The campaign thus had to depend on outside funding, seconded staff and donated goods. It is not exactly clear why the campaign, which had caused much excitement in some public health circles, was unable to attract significant outside funding, but the campaign struggled with its finances right from the start. As one United Nations official said, "The first big challenge was that there was a programmatic commitment to KYS but not a financial one. Starting in January 2006, there was no money [in the budget] for the campaign."[60]

An official with KYS said in October 2007, "KYS started without a budget. We only opened bank accounts six or seven months ago. We have only had cars and computers for several months."[61] Grant proposals to the Global Fund against AIDS, Tuberculosis and Malaria and to the Bill and Melinda Gates Foundation for core funding were apparently never submitted.

The Ministry of Health and Social Welfare of Lesotho seconded four staff to the KYS campaign and shifted some money from its budget to the KYS campaign, and UN agencies contributed some staff and technical support, but this was not nearly enough to fund all the activities that had been planned.[62] By the time Human Rights Watch and ARASA conducted their research, the Global Fund had stepped in with some limited funding and in-kind support.[63]

Another big problem was the slow pace at which the government acted once the campaign kicked off. A KYS campaign manager was only appointed in mid-2006, six months after the campaign was supposed to have started. The steering committee appears to have met for the first time only in September 2006, although it was supposed to play a key role in leading the campaign.[64]

Once underway, poor communications, logistics and management plagued the programs' efforts. KYS staff and nurses in the districts spoke of regular breakdowns in communication with the central office, the lack of a functioning logistics system, and poor support from the central office for the needs of KYS counselors.[65]

Unsurprisingly, the lack of funds had major consequences for the roll-out of the KYS campaign. When we visited in October 2007, the headquarters for the KYS campaign in Maseru did not have a phone or an Internet connection. Staff used their personal cell phones for communication. For many months, the campaign was unable to buy and distribute sufficient test kits. Some district KYS coordinators told us that they organized training seminars for counselors but never received money to pay the trainers their honorariums. Counselors were not paid their stipends because of a lack of money.

The Operational Plan described in detail the various policy documents that needed to be developed for the campaign and the key components of its implementation, but many elements were never implemented or implemented only partially, as a review of the Operational Plan reveals. These include:

·An HIV counseling and testing policy was to be developed that would guide all the counseling and testing done under KYS and would be distributed nationally among the population. By October 2007, two months before the KYS campaign was supposed to end, this document existed only in draft form and was still awaiting approval from the Ministry of Health.[66] Although we were told a popularized version existed, KYS could not provide us with a copy.

·The communications strategy, a central element of the campaign, was finalized only in mid-2007 and its implementation had barely started in October 2007. Various printed materials, such as leaflets and billboards, were just in the process of development, as were, according to a UN official, flipcharts that counselors could use while counseling and leaflets to leave with clients.[67]Another UN official summed up: "The whole communications and social mobilization parts of the operational plan have not happened."[68]

·The Operational Plan recognized that before starting the counseling and testing campaign in specific communities, it needed to be established that they had the necessary services in place to do so responsibly. A tool was therefore to be developed to assess the preparedness of communities. However, this tool was apparently never developed. We were unable to obtain a copy of it in our meetings, and did not find anyone who had actually seen or used the tool. Similarly, a tool that was to help communities to decide what type of testing they preferred (door-to-door testing, testing at public gatherings, or at clinics) was never developed.

·The Operational Plan envisionedincreasing the capacity of referral services, including prevention services and support for people living with HIV. However, this does not appear to have happened. Although in late 2007 UNAIDS paid for a staff person in the KYS office to liaise with support groups (groups that support people living with HIV and AIDS, often consisting of people who are HIV positive), no capacity building for support groups, which remained weak, had occurred. KYS clients who test negative have not been receiving referrals to prevention services.

·The Operational Plan emphasized the need for quality control, internal monitoring and evaluation, and independent oversight. However, as of October 2007 quality assurance procedures described in the plan were not being followed, internal monitoring and evaluation protocols had been developed but were not yet operational, and no independent oversight bodies had been set up. In 2008, KYS piloted quality assurance in two districts.

Despite the fact that these various crucial components of the KYS plan were either not implemented, or only partially implemented, training of counselors nonetheless started and counselors began to test for HIV.  As one UN official aptly said: "Everything has been done backwards. They've put the cart before the horse."[69] As a result, the implementation of the testing campaign had little in common with the operational plan.

It is difficult to provide a brief but accurate overview of the KYS campaign as it took place because implementation varied between different districts of Lesotho, and between different areas in these districts. In some areas, selection and training of counselors began in July 2006; in others, it had yet to happen when we conducted our research in October 2007. In some areas, KYS counselors actively conducted outreach with HIV education, whereas in others they spent months working at local healthcare centers before eventually beginning their outreach work in the villages. In many places, very little happened at all. By the end of June 2007, only a little over 10,000 people had been tested through KYS, and by August 2007, only 25,000 people had been tested-far off the pace of 1.3 million tested, counseled and linked to care.[70]An April 2008 press release by WHO in Lesotho stated that "while only 50,000 people in Lesotho knew their status in 2004, by the end of 2007, over 240,000 Basotho tested for HIV" and that 30 percent of HIV tests were conducted in community-based settings.[71] However, it does not estimate how many people had actually been tested by KYS counselors.

Selection and training of KYS counselors were both problematic. In the absence of clear selection criteria, many nurses selected KYS counselors-often existing village health workers, people living with HIV, or support group members-without any assessment of their ability or motivation, and sometimes volunteered people without asking for their consent. Training was conducted according to a slightly revised curriculum for home-based caregivers which several trainers told us was too broad; had insufficient focus on HIV counseling and testing; did not adequately address the challenges of community-based HIV testing; and contained material that was too complex for lay people.[72] Subsequent field training was often problematic because staff at health clinics did not have the capacity to give meaningful training to the dozens of counselors that were assigned to them.

[32] Lesotho Round 7 Grant Proposal to the Global Fund to Fight AIDS, Tuberculosis and Malaria, July 2007, http://www.theglobalfund.org/search/docs/7LSOH_1532_0_full.pdf (accessed October 29, 2008) p. 41.

[33]United Nations Development Program (UNDP), "Human Development Report 2007/2008," 2007, p.239, http://hdrstats.undp.org/indicators/23.html  (accessed October 3, 2008).

[34] Nompumelelo Zungu-Dirwayi, et al., eds., "An Audit of HIV/AIDS Policies In Botswana, Lesotho, Mozambique, South Africa, Swaziland and Zimbabwe," Human Sciences Research Council, p. 51, http://www.hsrcpress.ac.za/product.php?productid=1926&freedownload=1 (accessed July 21, 2008).

[35] Ibid., p. 39.

[36]Ibid., p. 40.

[37] Government of Lesotho, "National HIV and AIDS Policy," November 2006, http://www.aidsportal.org/Article_Details.aspx?id=4598&nex=67 (accessed October 20, 2008).

[38]For example, MSF is working in Scott Hospital area where, according to its website, more than 2,200 people have started ART in MSF-supported structures, http://www.msf.org/msfinternational/countries/africa/lesotho/index.cfm (accessed October 28, 2008). Ontario Hospital Association Africa provides assistance to the Tšepong Clinic in Leribe, where, according to the organization's website, more than half of all new patients are put on ARV therapy in Lesotho each month, http://www.ohafrica.ca/pages/wwd_success.html  (accessed October 28, 2008).   As of June 2008, according to email correspondence with the Clinton Foundation, they had provided treatment support for more than 2,500 children. Partners in Health has projects in a number of mountain villages, providing ARV to more than 1200 people, according to PIH's website http://www.pih.org/where/Lesotho/Lesotho.html (accessed October 28, 2008).

[39] Email communication with UNAIDS Lesotho, February 27, 2008; National AIDS Commission of Lesotho, "Lesotho UNGASS Country Report for the year January 2006-December 2007," 2008, http://data.unaids.org/pub/Report/2008/lesotho_2008_country_progress_report_en.pdf (accessed October 20, 2008), p.39.

[40]Medecins Sans Frontieres, "Confronting the health care worker crisis to expand access to HIV/AIDS treatment: MSF experience in southern Africa," May 2007, p. 11. http://www.doctorswithoutborders.org/publications/reports/2007/healthcare_worker_report_05-2007.pdf (accessed July 21, 2008).

[41]Ibid.

[42]"Lesotho PM has HIV test, urges others to follow," Reuters, March 8, 2004.

[43]Human Rights Watch and ARASA interviews with U.N. officials and healthcare workers.

[44]Operational Plan, p. 1.

[45] Operational Plan, p. 3.

[46] Operational Plan, p. 1.

[47]Former US President Bill Clinton was quoted in the Ottawa Citizen, July 13, 2006 as asserting that "all African countries should do the same" as Lesotho; In an interview with National Public Radio on December 1, 2005, Richard Holbrooke, CEO of the Global Business Coalition against HIV and AIDS on HIV/AIDS, Tuberculosis and Malaria called the KYS campaign the "most advanced in the world;" and in a March 2006 report following a trip to Lesotho and Swaziland, Stephen Lewis, then the UN special envoy for AIDS in Africa, said that the KYS campaign was "one of the most ambitious initiatives on the continent" and expressed confidence that the government would make it a success. 

[48] Sam Lister, "AIDS test for whole nation," Times of London, November 29, 2005

[49]Operational Plan, p. 9. Subsequent documents, however, name 1.3 million people as the target, see for example World Health Organization, "Progress report on Know Your Status HIV counseling and testing Campaign, August 30, 2007," by Dr Patrick Abok Okumu, p. 11, on file with ARASA and Human Rights Watch.

[50] A total of almost 15.5 million Maloti (about U.S.$2.5 million) was budgeted for such incentives over the two-year period. Operational Plan, p. 37 and 38.

[51] Operational Plan, p. 7.

[52]Operational Plan, p. 7.

[53]Operational Plan, p. 10.

[54]Operational Plan, p. 8.

[55]Operational Plan, p. 10.

[56]ELISA stands for Enzyme-Linked ImmunoSorbent Assay. Operational Plan, p. 10.

[57]Operational Plan, p. 11-12.

[58] Human Rights Watch and ARASA interview with T.F. and D.A..

[59]Lesotho's report to the 2008 UN General Assembly Special Session on HIV and AIDS states that the government of Lesotho spent a total of US$8.4 million on HIV and AIDS in fiscal year 2005/6 and US$8 million in 2006/7. The vast majority of funding for the HIV/AIDS response in Lesotho comes from international donors.

[60]Human Rights Watch and ARASA interview with UN official.

[61]Human Rights Watch and ARASA interview with KYS official M.M..

[62] World Health Organization, "Progress report on Know Your Status HIV counseling and testing Campaign," October, 2006, p.3, a copy of the report is on file with ARASA and Human Rights Watch.

[63]In the summer of 2007, when the campaign was already formally winding down, the Global Fund committed to paying incentives for 540 counselors for a number of years. The National AIDS Commission made a commitment to support a similar number of counselors.

[64]None of the documents ARASA and Human Rights Watch have obtained make any reference to a meeting of the Steering Committee before September 2006.

[65]One district manager said they personally drove to Maseru to pick up test kits because otherwise these would never arrive. Another district manager said questions and comments sometimes went unanswered for weeks or even months. A third said that they had repeatedly requested ID cards for the counselors and that these had been promised but had never actually arrived. Several people noted that morale among KYS staff was low as, in the words of one, "they are always criticized but nobody ever gives them any support."[65] This interlocutor added that several KYS staff had resigned out of frustration in the last several months.

[66] A draft of the policy is on file with ARASA and Human Rights Watch.

[67] Human Rights Watch and ARASA interview with UN official.

[68] Human Rights Watch and ARASA interview with UN official.

[69]Human Rights Watch and ARASA Interview with UN official.

[70]WHO, Progress report on Know Your Status HIV counseling and testing Campaign, August 30, 2007, p.11.

[71] World Health Organization/Lesotho press release, "'Know Your Status' HIV Campaign Receives Praise for the Achievements Accomplished in Lesotho," 4 April 2008. (http://www.afro.who.int/country_offices_press/2008/pr20080404.html, accessed November 7, 2008).

[72] Human Rights Watch and ARASA interview with NGO representative M.T. and nurse M.L..A KYS official told us that they had not received any complaints about the training curriculum.