History of NEPHAK
The ideas that would later on lead to the formation of the National Empowerment Network of people living with HIV/AIDS in Kenya (NEPHAK) can be traced to the mid 1990s. This was after it was realized that such a network was needed to unite the then existing support groups and networks of PLHAs in Kenya. By 1998, the first meeting and consultations that led to the establishment of NEPHAK became a reality. In fact, the first existence of a national PLHAs network has been recorded early 1998. Back then, NEPHAK stood for Network of PLHAs in Kenya. It was later towards the end of 1998 that the term national was added to the network to give the full name then: National Network of PLHAs in Kenya (NEPHAK).
Official records confirm that NEPHAK, as the National Network of PLHAs in Kenya (NEPHAK) was being hosted and coordinated with support of the National AIDS Steering Committee that would later become the National AIDS and STIs Control Programme (NASCOP). NASCOP even hosted the network between 1998 to early 2000 when the network moved out to be hosted by Women Fighting AIDS in Kenya (WOFAK). WOFAK, founded by Dorothy Onyango had been one of the first PLHA – led organizations to be established in Kenya alongside the Know AIDS Society (KAS), founded by Joe Muriuki and the Kenya Network of Women with AIDS (established in 1993 by Asunta Wagura) and The Association of people with AIDS in Kenya (TAPWAK) by Rowlands Lenya. As such, Know AIDS Society (KAS), established in 1985 was the first known PLHA support group to exist in Kenya. Joe Muriuki and later, Rowlands Lenya were the two key leaders of KAS. Lenya who until his death in 2009 was the Executive Director of The Association of People with AIDS in Kenya (TAPWAK) and Joe Muriuki were the first Kenyans to go public about their HIV status in 1985. TAPWAK was established in 1988.
By the time the Government of Kenya was declaring HIV and AIDS a national disaster in 1999, the PLHAs movement in Kenya had started establishing itself. People living with HIV and AIDS (then AIDS existed) were therefore present during the formation of the National AIDs Control Committee that would later graduate into the National AIDS Control Council (NACC). Declaration of HIV and AIDS as a national disaster and subsequent establishment of the National AIDS Control Council gave hope and courage to those who were infected with HIV. Subsequently, hundreds of support groups were established in all parts of the country thereby indicating the urgency and rational for a national network of PLHAs. NEPHAK therefore had room to operate and work to do.
At inception, NEPHAK committed to work for greater and meaningful involvement of PLHIV in the HIV response and to act as a positive force for change and bringing together PLHIV to have a common voice and purpose. The size and scope of the challenges facing NEPHAK in realizing these goals should not be under estimated. HIV – associated stigma was at its peak and there was no known treatment for HIV.
As expected, the young network was to face leadership, management and governance challenges. The formation and growth of NEPHAK was inhibited because of these challenges and by year 2000, a Task Force was established to spearhead the re-formation of NEPHAK. It was out of the leadership wrangles and the squabbles that one wing of NEPHAK would add the term ‘Empowerment’ in their name to distinguish the genuine NEPHAK from the other national networks. During this time, NEPHAK would either mean Network of PLHAs in Kenya (NEPHAK) or the National Network of PLHAs in Kenya (NEPHAK). There were fights and confusion over the name NEPHAK and one group even came up with the name NEPLAK just to distinguish themselves from the rest. Nevertheless, during these wrangles, the name NEPHAK had already become a household name among PLHAs and a recognized name in the national response to HIV and AIDS. In fact, the fight over the name NEPHAK was because the name was popular in Kenya and beyond.
NEPHAK as it is today emerged out of the progressive PLHAs leadership who were also supported with other partners and stakeholders to work towards a credible national network of PLHAs. PLHAs leadership and partners then worked through Task Forces and one such task force consisted of representatives from key PLHIV organizations and stakeholders who worked to establish an institutional framework, preparation of the constitution, establishment of the Secretariat, preparation of a strategic plan and the development of programs. With little capacity to implement activities and teething problems associated with new member organizations, NEPHAK had challenges functioning effectively and it did not take long before the challenges emerged again. A second Task Force was set up in 2002 to continue with the tasks of the first task force.
The second Task Force was also to oversee the institutionalization and operationalization of the strategies and systems developed by the first Task Force. With the support of the members, the Task Force successfully organized the first ever National PLHIV Conference in August 2002. During the Conference, the first National Committee of Representatives (the Board) was elected, and an amended constitution was ratified by the Delegates. The constitution, among other things, established organs of governance including National Delegates Conference, the Board and the Secretariat. The Task Force also prepared a revised strategy for revitalizing the network; and prepared advocacy strategy, public relations strategy and publicity materials, and proposed institutional review. This institutional review was later implemented as Organizational Self Assessment (OSA).
The network was finally registered as a non-governmental organization (NGO) in 2003 and a Secretariat established and in 2004, the network held its 2nd National Delegates Conference (NDC) and a new board elected to steer the network and provide oversight to the secretariat. NEPHAK Secretariat was very successful in fulfilling the vision and goals of the network during 2004 and 2007. In 2007, a new board was elected after the 3rd National Delegates Conference and this also came with challenges.
Between 2007 and 2009 NEPHAK faced a series of internal leadership management and governance challenges and the networks credibility and work suffered a great deal. After consultations with key PLHAs leaders in Kenya and a number of partners, a comprehensive Institutional Assessment out of the network was undertaken in 2009 with support of the National AIDS Control Council (NACC) and the Joint United Nations Programme on AIDS (UNAIDS). This assessment found that the governance structure at NEPHAK was lacking clear accountability and clarity of roles between various organizational organs. The main challenge according to the assessment report was the lack of clarity between the role of the board and the role of the secretariat. The Institutional Assessment set forth a wide range of recommendations which if successfully implemented, would lead to the desired organizational maturity and reposition NEPHAK to its once formidable past and allow the network to play its role and mandate to the national response to TB and HIV and AIDS in Kenya. In much of 2010, NEPHAK leadership with the support from the United Nations Development Programme (UNDP) started working on the organizational development and systems strengthening (ODSS) initiatives as recommended by the institutional assessment.
Notable progress was made by NEPHAK under the FANIKISHA Institutional Strengthening Project supported by USAID and managed by the Management Sciences for Health (MSH). Under this project, NEPHAK developed policies, guidelines and strategies that continue to steer the organization. The network also unveiled a new constitution.