Grandmothers on the march for HIV/AIDS awareness October 8, 2015Catherine Byaruhanga, BBC Africa
The Stephen Lewis Foundation (SLF) works with community-based organizations working to turn the tide of HIV/AIDS in Africa. Since 2003 we have funded over 1100 initiatives, partnering with over 300 community-based organizations in 15 countries.
We know from experience that the fastest and most effective way to turn the tide of AIDS is to work with small, committed, community-based organizations. The staff and volunteers of these organizations are unwavering in their commitment to save lives, provide counselling and support to all who need it, and to restore hope in every home and community.
Every organization with whom we work has a strong connection to the community. They recognize that gender inequality drives the AIDS pandemic in Africa, and that it is essential to have dedicated programmes that support grandmothers, girls and women. For more information on the critical work being done by community organizations to turn the tide of AIDS in Africa, please visit the Where We Work section.
The Stephen Lewis Foundation has been partnering with grassroots community-based organizations (CBOs) to turn the tide of the HIV and 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 — in 2003 $750,000, and in 2004 $1.1M — 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 2014, the Foundation had disbursed over $80 million dollars to over 1100 initiatives — implemented by more than 300 community based organizations — in fifteen countries in eastern and southern Africa.
These organizations were most frequently born out of the resolve of small group of individuals, who, after witnessing the devastation of HIV and 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 fight against AIDS. For example, Swaziland Positive Living (SWAPOL), which was formed in 2001 by five positive women as a mutual support group to deal with the stigma and discrimination they were facing, 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 and now has a membership of over 7000 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 pandemic. This has included the programmes on home-based care and support to people living with HIV&AIDS developed by organizations such as the Kimara Peers and UMWI 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, TASC delivers its services through a volunteer base of 350 community members, and the AIDS programme of the Ekwendeni hospital is rolled-out with the assistance of 1,300 volunteers. Home-based care and related support are provided by by 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 pandemic. 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 pandemic.
The Foundation’s conviction that community-based organizations are an indispensable part of the solution to the AIDS pandemic has been materially confirmed and immensely strengthened by our partners’ work. In a global context in which hopes are now emerging of an end to the pandemic — with the extension of ARV treatment to increasing numbers of people — it’s crucial that forward-looking strategies are informed by an understanding of the transformative power of community. The community-based organizations with which 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 pandemic took away through the multiple devastations it wrought.
The path our partners have been on has been a path towards fostering growth and resilience in people’s lives, and for the community as a whole. The early interventions of many community-based organizations were primarily targeted at specific pressing, immediate needs generated by the pandemic, such as grief counseling and home-based care. But over time, as their approaches strengthened and deepened, they branched out into more complex interventions with longer term goals, such as aspiring to keep orphaned children in school, to help people living with AIDS to remain on anti-retroviral treatment, land rights for grandmothers raising multiple orphaned children, and income generation for those living longer. Our partners have seen that what is fundamentally at stake in the response to the HIV&AIDS pandemic is “resilience”: people’s ability to cope with crisis, to regroup and rebuild, and moving forward with their lives. This, then, is the benchmark against which the Foundation seeks to measure and understand success.
SLF partnerships are enabling immediate investments in service delivery to translate, over time, into more substantial, longer term benefits for people and their communities. Immediate needs are met through SLF support to help cope with crisis: entry into treatment, entry into school, adequate nutrition, removal from violent situations, adequate housing, and counseling and therapy. Once those needs are met, the Foundation works with our partners to help individuals and communities regroup and rebuild, in areas such as income generation, medical care, and positive living. And particular attention is paid to psychological and emotional well-being, and to revitalizing the bonds that connect people — be they nurturing relationships within families, social networks created through child, youth, and granny groups, or community organizations. With this comprehensive support, stability begins to return over time. Children stay in school, positive people are healthier and stay on treatment, families are functioning, and small but reliable incomes are being produced. And, ultimately, there are signs that people have recuperated to the extent that they have regained their self-determination and can take active control over their own lives — children graduate from school and start working, women become community leaders, groups advocate with their local and national governments to claim their rights. The concept of resilience is so important, not because it suggests a future when all difficulties will come to an end, but because it directs the work toward restoring peoples’ capacity to manage the ongoing stresses and crises that life will inevitably present to their communities.
The SLF has learned from our partners that holistic support is absolutely key to fostering real change in people’s lives. Community-based organizations do not deliver discrete packages of services to respond to isolated problems, such as inadequate healthcare or lack of access to education, and their work is not focused on individual “issues” or “sectors”. Instead, community-based organizations are responding to the whole person, and aiming to restore the long-term well-being and dignity of the people in their communities. The SLF therefore invests heavily in the many programmes that address emotional and psychological needs side-by-side with the material needs. It also means that the programmes place great emphasis on fostering connectedness and relationships, between children and caregivers, and among community members, and on supporting the development of the local institutions and networks that enable communities to tackle their own challenges.
The Foundation has developed these insights over the past 11 years through the relationships we’ve developed with community based organizations. We realized early on that, in order to understand their deepest challenges and support the most effective responses, we would have to foster the kind of relationship with these organizations that would allow them to trust us with very candid information about the risks and failures of their undertakings, along with their successes. We’ve put in place ways of operating and connecting with the CBOs that builds mutual respect, ongoing communication and dialogue, and ensures that we’re in a position to learn from them and adjust our engagement accordingly. This approach has enabled the SLF to support critically important innovations coming from the CBOs in the fight against HIV&AIDS, such as holistic programming for child treatment, placing grandmothers at the center of orphan care initiatives, and providing greater support to the frontline workers who are delivering counseling at the intersection of sexual violence and AIDS.
Global efforts to combat HIV& AIDS are now being focused on the possibility of bringing the pandemic to an end, through the systematic extension of treatment to all who need it. The Foundation, however, understands the ultimate goal not just as a medical victory involving a dramatic reduction of new infections, but from a much broader human rights and development perspective. The endpoint of the response can’t simply be seen as zero new infections. It must be the restored health and well-being of the people who live in the countries hit hardest by HIV&AIDS, and the promise of decent futures they can work together to build. The Foundation is now working to ensure that increasing investments in treatment brings Africa closer to the end of the pandemic, by linking progress in treatment access to the more holistic interventions of the CBOs with which we partner. Based on more than eleven years of intensive partnership with grassroots community-based organizations in sub-Saharan Africa, the Foundation sees this investment as a crucial and essential contribution to ensuring these futures come to pass.
We work with a wide variety of grassroots initiatives, with a particular focus on the following areas:
Grandmothers on the march for HIV/AIDS awareness October 8, 2015Catherine Byaruhanga, BBC Africa
Successful Pride Partnership will bring leading HIV & AIDS activists to Canada October 5, 2015Staff, Stephen Lewis Foundation,