INTERNATIONAL AIDS CONFERENCE 2012 - CAREGIVERS CALL FOR COMMUNITY TO BE FRONT & CENTER OF AIDS RESPONSE
Katherine Radke and Becca Asaki - December 1, 2012
World AIDS Day | Celebrating
the Home-Based Care
The Huariou Commission and GROOTS International would like to
send a very special and heartfelt thanks to the thousands of home-based
caregivers in our membership who spend their lives providing life-saving
care, sharing their ceaseless devotion and contributing their personal
resources to step up to action in a complicated field and a time of
The Home-Based Care
At the 2012 International AIDS Conference, a top-down, business efficiency model dominated the discussions, taking women and communities most affected by the pandemic out of the picture- a potentially catastrophic ‘tide turning.’ Despite their significant contribution, documented through evidence-based research, a number of myths circulated surrounding the role of grassroots caregivers in linking to decentralizing healthcare systems.
Grassroots caregivers from the multi-country Home-Based Care Alliance championed a community-based approach to the AIDS response while debunking myths about caregivers. Through nearly 20 speaking slots on 9 panels, from a high level bridging session to the Global Village, caregivers stood up alongside global policy makers, government officials and national NGO representatives to advocate to be recognized, prioritized and formalized within the AIDS response. Representing a network of over 30,000 caregivers in 11 African countries, where they have been caring for almost 200,000 neighbors and friends in their communities and have been organizing around HIV/AIDS for over ten years, the Home-Based Care Alliance (HBCA) challenged conference participants to reevaluate their preconceived notions of caregivers, proving that caregivers are much more than volunteers content to receive T-shirts for their years of life-saving work. Instead, they are actually the only resource communities have at times, to offer the education and care needed to confront HIV and AIDS.
Emboldened from their week of preparation at the Grassroots Academy on Caregiving and Emerging Healthcare Policies, grassroots caregivers claimed their expertise, calling for formal recognition for their significant contributions to the AIDS response. At the high level panel discussion, entitled “Healthcare Workforce: Who Care and Where?” Florence Enyogu, a caregiver from the Uganda Community Based Association for Child Welfare (UCOBAC) and President of the Uganda Home-Based Care Alliance, was selected to speak alongside prominent figures in the AIDS world. Her co-panelists included Eric Goosby, the Global Ambassador on AIDS for the U.S. government; Dr. Mubashar Sheik, the Executive Director of the Global Health Workforce Alliance; and Dr. Ann Phoya from the Malawi Ministry of Health (Watch the webcast: http://globalhealth.kff.org/AIDS2012/July-24/Healthcare-Workforce.aspx ).
This marked the first time a grassroots caregiver was given the opportunity to speak on a high level panel at the International AIDS Conference and Florence took the opportunity to share the holistic work she does as a caregiver linking people most in need with access to health services and reducing the impacts and root causes of HIV/AIDS. Equally important, she also detailed the collective work of organized, united networks of caregivers in the Home-Based Care Alliance. She called on her fellow panelists and others at the conference to “involve us and treat us as partners in a transforming health care workforce, and not as beneficiaries of the process.”
When asked why it is important for grassroots caregivers to represent themselves on panels such as this, Florence stated, “We live in the communities. We share the challenges with these communities. We are the committee members. If it means sickness, they are transporters. If it means giving support, at times we touch our pockets. I think they are beginning to realize that we are a very important sector in our communities, and they are beginning to realize that without us, even the trained healthcare staff cannot do much after prescribing the treatments.”
Caregivers from the Alliance were presented on panels, spoke eloquently from the floor, pushed against NGOs and policy makers claiming there is no evidence-based research to prove the value of caregivers' contributions. In partnership with UN Women, UNAIDS, UNDP Gender Team, the Leadership and Accountability Track of AIDS 2012, the Global Coalition on Women and AIDS, the Athena Network, the World YWCA, and the Caregivers Action Network, caregivers had unprecedented space to share their strategies for building community-led social protection schemes to establishing economic security in the context of HIV and AIDS to utilizing evidenced-based research to make advocacy gains at the national level.
The unprecedented visibility of caregivers at this conference did not go unnoticed by government officials at the IAC. Deputy Prime Minister of Zimbabwe Thokozani Khupe pledged to support a focus on home-based care in the next session of Parliament after an intervention from the floor during a satellite session from caregiver Shorai Chitongo of the Zimbabwe HBCA. Limota Goroso Giwa, Director of the International Women’s Communication Centre (IWCC) which coordinates the Nigeria HBCA, was able to set up appointments with the NACC coordinator for Kwara State following her presentation on the “Compensations for Contributions” action research.
The Home-Based Care Alliance was also featured my numerous media outlets. Violet Shivutse was interviewed for the Kenyan television network TV show InFocus through Voice of America (Watch it on YouTube). A guest blog post entitled “Recognize, Prioritize, and Formalize Grassroots Caregivers” from the U.S. Positive Women’s Network, featured the Home-Based Care Alliance and the efforts of leaders to push for recognition of their crucial role in the fight against AIDS leading up to the International AIDS Conference.
“People think the solution has been found,” Violet Shivutse said in an interview by UN Women, “ARVs are available and they don’t see there is someone following to ensure people are taking ARV, there is someone ensuring more people are testing to go for ARV.” Members of the Home-Based Care Alliance were concerned that many of the conversations at the International AIDS Conference described the AIDS pandemic as simply a matter of developing effective service delivery systems.
Caregivers were presented as extension workers of the healthcare systems as opposed to holistic community developers and messages of costing were taken up due to the stagnating and potential hard drop in AIDS funding in the future. NGOs are already seeking to replace or absorb caregivers as service providers. Policy makers were more than happy to discuss efficiency and effectiveness of systems while ignoring the catastrophic human toll
Caregivers in the Home-Based Care Alliance have long called for compensation to go to caregivers but not in the form of individual salaries that would break apart community networks and relationships and potentially invite those motivated by economic need. “I want people to know that care is about humanity,” Violet shared at the end of her InFocus interview. “It’s about people’s welfare. It needs to be realized as an important tool in fighting HIV and AIDS. ”