Strengthening advocacy by documenting the experience of people living with HIV

NEPHAK’s experience with the HIV Leadership through Accountability Programme

“People living with HIV are experts in their own lives and know first hand about stigma, discrimination they experience and other barriers to accessing services,” said Rahab Mwaniki of the National Empowerment Network of People living with HIV/AIDS in Kenya (NEPHAK) (pictured above), at a board meeting of the Global Network of People Living with HIV/AIDS (GNP+) held in Cape Town on April 2.

“Our big discovery [about HIV-related stigma and discrimination in Kenya] was that more than 60 per cent of the people living with HIV we surveyed said they have been gossiped about because of their status; more than half have been verbally insulted, harassed, threatened and a very high number have been physical assaulted: 42.8 per cent,” she said. She went on to describe villages where HIV-exposed children have been abandoned by the community, examples where HIV-positive women were sterilised without their knowledge and many other cases of flagrant human rights violations of people living with HIV.

Documenting such experiences, by participating in the ‘HIV Leadership through Accountability Programme,’ has helped NEPHAK grow as an organization, develop an evidence base for its advocacy and start to engage in policy work in Kenya, Ms Mwaniki told those at the meeting.

The programme is a collaboration between GNP+, the World AIDS Campaign (WAC), and national networks of people living with HIV and other national civil society platforms, currently being implemented in several African countries, with support from UK’s Department for International Development (DfID). The five-year programme combines specific HIV mapping tools (see below), national AIDS campaigns and targeted advocacy for universal access to HIV care and treatment.

“The aim of the programme is to build evidence about the needs and realities of people living with HIV in each specific country where there is a network working with us, and then to use that evidence for advocacy in those countries,” said Georgina Caswell, HIV Program officer at GNP+ . And one of the things that we have been learning is really the amount of expertise that exists within the networks, and just being able to draw on that expertise.”

NEPHAK in Kenya, with over 1400 member organizations, was one of the first networks to start collaborating with the programme, beginning with a meeting in February, 2009, where the organization and its partners explored how they might adapt and implement the five research tools developed for the Leadership through Accountability Programme to assess the most pressing needs locally.

The Tools

•   The People Living with HIV Stigma Index which documents evidence of stigma, and its effects at the social level, at the health authority, and the employment setting;

•   The GIPA Report Card is used to gauge the level of involvement of people living with HIV at all levels; at high level (policy making), at medium level (local implementation) and at grassroots level;

•   Human Rights Count! is a tool that documents human rights violations against people living with HIV, whether in their homes,  the workplace or in the community, as for example in the post-election violence in 2007.

•   The Global Criminalisation Scan involves documenting and analysing current experiences in criminalisation of HIV transmission. “For us we have the HIV Prevention and Control Act 2006; and criminalisation of HIV transmission is one of the issues that we are not very happy about,” said Ms Mwaniki.

•   Advancing the Sexual and Reproductive Health and Rights of PLHIV: A Guidance Package supports PLHIV networks to engage in national processes for the development and/or adaptation of sexual and reproductive health services.“We decided to do a study on prevention of mother-to-child transmission, because currently in Kenya we have about 34,000 new infections every year of children, which is still a very high number, looking at the levels of support of ART by PEPFAR, USAID and other supporters,” Ms Mwaniki said.

While the tools might look easy to use, moving from being an organisation that mostly worked with communities to one that did research and advocacy took time and was a new process for NEPHAK. While perhaps not as exciting as their results, their experience may be instructive for other civil society groups interested in strengthening through research.

“First, we had to develop a Programme Steering Committee – we brought in the National AIDS Control Council, National AIDS STI and Control Programme, we brought in the key populations, we brought in UNAIDS and civil society because we wanted everybody to own this process. We then identified partners and consultants knowledgeable for the area covered by each tool,” she said. Crucially, they brought in a professor from the University of Nairobi, who helped them with the ethical issues involved in doing research studies in the country.

“We adapted the tools to our context, and developed some new ones, for example for the sexual and reproductive health and rights package, and we made submissions for ethical clearance a lot of times – I think it took about six months to get ethical clearance for the project,” she said.

They recruited and trained data collectors from the community, however, Ms Mwaniki stressed that, “the process of recruiting these people was very competitive – we advertised to our networks , and we required that they submit CVs and a letter of recommendation from their organisation.”

The whole process took a period of 18 months, including data collection and analysis.

Example of Results: PLHIV Stigma Index  

The data collectors administered 1086 questionnaires based upon the stigma index in four provinces with the highest HIV prevalence in the country, and one province where the reported prevalence is much lower, but where stigma is known to prevent people from accessing services. The questionnaires looked both at how people reacted to perceived stigma, as well as specific experiences of stigma and discrimination.

The pressure against women with HIV having any more children was profound according to Ms Mwaniki.

“We have had a case where the healthcare worker was threatening a woman living with HIV, who was stable, telling her ‘You are unstable, you have got HIV and you are pregnant! How are you going to deal with this?’ We have had cases of where people have been sterilised: You just have your operation [and while you are there] they don’t even consult you they just sterilise you – you don’t get to know until it is too late,” she said. She also remarked how people stigmatise themselves profoundly, as evidenced by almost a third of people living with HIV who simply quit having sex. “Their self-esteem just goes down,” she said.

Using evidence for advocacy

NEPHAK has used the evidence collected through this research in a number of ways. For instance, in July 2010, they launched the GIPA Report Card for Kenya, with participation of key people from civil society and government, including the former Minister for Special Programmes and the chairperson of the National AIDS Control Council. They have worked with the media to raise awareness of HIV-related human rights violations, such as the story of Nancy Njoki – who was infected through a gang rape but then lost her job and was ostracised by friends and community. NEPHAK lobbied for the establishment of an HIV and AIDS Tribunal, to seek legal redress for past injustices against people living with HIV, which was gazetted in late 2009, though NEPHAK is still fighting that the tribunal be funded and implemented.

The findings from the Stigma Index helped NEPHAK secure support from technical and funding partners such as Action AID International Kenya to train advocates for people living with HIV, whose role is to go back into the community and sensitize PLHIV about their rights. For instance, they are doing a lot of work in the NorthEastern Province, where they found abandoned children, and where Ms Mwaniki said “You can be sure that as soon as they learn you are HIV-positive, the landlord will give you notice to vacate that day and refund your rent deposit – it is that bad.”

NEPHAK is also currently working on drafting of the East-African Community HIV/AIDS Bill (for better integration of policy of the six countries in East-African Community), working to help establish a parliamentarian caucus on HIV/AIDS with other countries; and advocating for the government to upscale the 2010 WHO ART Guidelines.

“But we are happy that the government, for the first time in history, gave 900 million Kenyan shillings for treatment which has put about 24,000 new patients on treatment, and we are hopeful that the government will continue supporting those people,” she said.

Becoming a leader

“Engaging in the programme has given us the opportunity to engage at the policy level,” said Ms Mwaniki. “We were not engaged in policy, we were doing more community work. It has also increased our visibility at national, local, regional and international levels. We sit at the National Oversight Committee, the ICCs for HIV and TB, Global Fund, at the STOP TB Partnership. We also sit at the National AIDS Control Council Board. And we have also seen new, and strengthened old partnerships – between the Ministries of Health, the NACC, NASCOP, KANCO, KELIN,AMREF, GNP+, WAC, UNAIDS, UNDP – quite a lot of organizations.”

She stressed that though evidence-gathering was particularly challenging at a time of when the organisation was undergoing difficulties in management and restructuring, and that funding was at times very tight, being open about these problems helped strengthen their partnerships. “But we continue to need to make sure that the network’s advocacy is not stand-alone – but is supporting broader advocacy supported by civil society. And,” she concluded, “issues across all these projects are all linked, i.e. the stigma index, the GIPA Report Card, etc.Ultimately, they are all part of Positive Health, Dignity and Prevention. So it’s not a stand-alone programme but rather an interlinked part of a larger advocacy effort to improve the health and wellbeing of people living with HIV so that we can make a greater contribution to society.”

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