Highlights from a Joint Initiative to Promote Community-Led Advocacy
This document was released by the Treatment Action Group (TAG) and the Open Society Institute (OSI) to highlight the work of community-based organisations and people living with HIV/AIDS (PLHA) who are advocating for coordinated tuberculosis (TB) and HIV policies and services in their countries. It is a product of the TB/HIV Advocacy Grants Project, which was launched in 2004 by Public Health Watch and TAG. The project and the publication underscore the importance of enhancing community engagement in the design, implementation, and evaluation of collaborative TB/HIV programmes. The report presents case studies from Indonesia, Mexico, Sierra Leone, South Africa, Ukraine, and the Caribbean, highlighting community advocates’ strategies, achievements, and lessons learned.
In these studies, each grantee designed and implemented project activities in the context of different local and national circumstances and needs. The first, Agua Buena Human Rights Association, doing advocacy work in Costa Rica and 12 additional countries in Latin America and the Caribbean region, has the primary goals of increasing access to antiretroviral therapy medications (ARVs) and identifying, exposing, and addressing human rights abuses experienced by PLHA. It recommends more research and reporting on conditions, including multi-drug resistant TB (MDR-TB) and TB/HIV co-infection in prisons in Latin America to draw attention to prison health issues; increased involvement from people living with HIV and/or TB in the design and implementation of all projects intended to benefit them; workshops and other outreach efforts for PLHA and TB patients; and awareness-raising activities aimed at high-level decision makers in national HIV and TB programmes to draw attention to the need for greater coordination of HIV and TB control efforts.
Fundación Mexicana focuses efforts on a city with rising infection rates in order to encourage HIV-positive people in the community to seek treatment and care for TB/HIV co-infection and empower them to advocate for better integration of TB/HIV services. A key outcome of its grant-related project was the development of a draft Charter on TB/HIV Prevention and Care Rights. The charter, which was written by people living with HIV, outlines seven specific rights related to treatment and care for TB/HIV co-infection. The organisation has allied itself with government and non-governmental organisations (NGOs) to make the charter a part of the national government.
Gender AIDS Forum (GAF) in South Africa aims to develop a “gendered understanding” of TB and its links to HIV in South Africa by examining all factors that may increase the vulnerability of women to these diseases and hinder their access to care, treatment, and support. It organised a staff workshop on TB literacy, researched the HIV - TB link in South Africa and, through including PLHA and/or people with TB, particularly women, in the research process, published a position paper as a basis for advocacy.
The Ukrainian organisation Salvation focuses on HIV prevention activities, such as needle exchange, peer education, and “telephone trust points” where clients can receive confidential and cost-free consultations with Salvation social workers and health specialists. It has expanded its services to TB testing, counselling, and treatment. Its recommendations include designing and implementing strategies to improve public attitudes toward people living with HIV and/or TB and members of vulnerable groups through advocacy and capacity-building.
The Shepherd’s Hospice in Sierra Leone enhances its palliative care by training community volunteers, including PLHA and family members, as well as running a range of advocacy and treatment programmes. It formed the Partnership Forum on HIV, which includes PLHA as well as the manager of the National TB Program, to promote a sustainable and integrated TB/HIV response linked to poverty reduction.
Yayasan Spiritia was formed as a peer support group for people in the Jakarta region of Indonesia who were infected and affected by HIV. It now works across the nation and developed and released a booklet on TB-HIV co-infection which intends to raise awareness around the country of the risks of TB among HIV-positive people and how and when to treat for co-infection, among other issues. Fear of increasing stigma by linking the two infections is one of the problems they have set out to overcome.
The TAG/OSI document outlines a number of areas for action by governments, the donor community, health care workers, and/or civil society, including the following:
- capacity-building activities for NGOs to engage in the development and implementation of collaborative TB/HIV policies;
- technical support and financial assistance to support social mobilisation and education efforts related to TB/HIV co-infection among people living with HIV;
- research on the extent to which Directly Observed Treatment Short course (DOTS), the recommended TB control strategy, meets the needs of people living with HIV and TB/HIV, and on the interaction between TB drugs and antiretroviral therapy; and
- support for community-led monitoring and evaluation to assess accessibility, quality, and delivery of joint TB/HIV programmes and services.