The Power of Community

The Stephen Lewis Foundation has been partnering with grassroots community-based organizations (CBOs) to turn the tide of the HIV & AIDS pandemic in sub-Saharan Africa since 2003. The impetus for putting the Foundation into motion was a single, essential insight. At a time when Africa was reeling from one of the greatest health emergencies in human history, the global response was frustratingly and bewilderingly slow. But people in the communities most affected by AIDS had rallied themselves to confront the crisis that was devastating their lives, and their small, emergent organizations were struggling to put their plans into action. If only funding could be transmitted directly to these community-based organizations, some of the forward movement that was so urgently needed could begin. The resources the Foundation could commit to their work were initially modest — $270,000 in 2003 and $1.3M in 2004 — but, due to the generosity of so many Canadian individuals and private foundations, this funding base would grow exponentially in the years to come. As of 2015, the Foundation had disbursed over $89 million dollars in programme spending, supporting over 1,400 initiatives — implemented by more than 300 community based organizations — in fifteen of the hardest hit countries in eastern and southern Africa.

These organizations were most frequently born out of the resolve of small groups of individuals, who, after witnessing the devastation of HIV & AIDS in their personal lives, began to work determinedly to save their communities. Over the years they have grown and evolved to become important and trusted local institutions, and leaders in the global fight against AIDS. For example, Swaziland Positive Living (SWAPOL), supported by the Foundation since 2004, was formed by five HIV positive women as a mutual support group to deal with the stigma and discrimination they were facing, and it now has 5,700 members in 45 communities. The Kenya Network of Women Living with AIDS (KENWA) was started in 1993 by a small group of women who had been rejected by their families because of their HIV status. A partner of the Foundation’s since 2006, KENWA now has a membership of over 7,000 women. The Phoebe Education Fund for AIDS Orphans and Vulnerable Children (PEFO), which was formed in 2003 by three brothers who had lost their own parents to AIDS, currently services three districts in eastern Uganda. As well, the Foundation has extended its support to larger organizations, such as hospitals and faith-based institutions, which were searching for new ways to work more closely with their communities to respond to the epidemic. This has included programmes on home-based care and support to people living with HIV & AIDS developed by organizations such as the Kimara Peer Educators & Health Promoters Trust Fund in Tanzania, the Ekwendeni Hospital in Malawi, the Mulago and Nsambyo hospitals in Uganda, and Howard hospital in Zimbabwe.

Across this diverse group of partners there is a commonality, a shared ethos and way of operating which speaks directly to what the SLF looks for in a partner. They are all intimately connected to their communities and take their direction from the communities. Community members are represented on the boards and staff of every organization, but for so many the connection goes much deeper. Formal structures are just the beginning for these community-based organizations, which can have large local memberships, sometimes numbering into the thousands, and frequently operate their programmes through extensive networks of community volunteers which greatly outnumber their paid staff. For example, in Swaziland, The AIDS Information and Support Centre (TASC) delivers its services through a volunteer base of 350 community members, and the AIDS programme of the Ekwendeni hospital in Malawi is rolled-out with the assistance of 1,300 volunteers. Home-based care and related support are provided by Pastoral Activities and Services for People with AIDS (PASADA) in Tanzania with the aid of 250 volunteers, by Catholic AIDS Action in Namibia with the assistance of 1,200 volunteers, and by Kitovu Mobile in Uganda through a network of 750 volunteer community workers. This deep integration at the grassroots level means that community-based organizations can respond to people’s lived realities, can learn more as they go, and can quickly adjust their response to meet the new challenges that are continuously being presented by the epidemic. Just as important, it means that their planning, strategizing, reflection and decision-making engage a large proportion of the local population. These organizations are the means by which communities are creating their own responses and implementing their own solutions to the epidemic.

The Foundation’s conviction that community-based organizations are an indispensable part of the solution to the AIDS epidemic has been materially confirmed and immensely strengthened by our partners’ work. The community-based organizations with which the Stephen Lewis Foundation partners have been meeting the immediate challenges of getting people tested for HIV and accessing treatment, getting orphans back into school, and helping caregivers to feed their families, but they have also been doing so much more. They’ve been bringing individuals and their communities back to life. Step by step, their work is reclaiming what the epidemic took away through the multiple devastations it wrought.

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