Community Involvement Critical to Treatment Scale-Up

By Andy Quan, International Policy Officer, Australian Federation of AIDS Organizations

January 2004—The World Health Organization’s "3 by 5" initiative challenges the world to put three million people living with HIV/AIDS on treatment by the end of 2005. Asian treatment advocates calculate the goal for Asia to be about 500,000 people. This will require massive improvements in a number of areas, including health care infrastructure, training, drug management systems, and drug pricing. It will also necessitate the involvement of organizations representing people living with HIV/AIDS (PLWHA) and affected communities.

Andy Quan

These communities must be involved, not just for ethical reasons, but for practical ones as well. Communities have a right to be involved in activities and plans that concern them. Additionally, the experience of PLWHA will help shape efforts to scale up treatment by giving insight into how treatment access works on the individual and community levels. Perhaps most importantly, PLWHA and communities will need to accept the plan in order for it to work effectively.

But how can we do this? Many PLWHA groups and nongovernmental organizations (NGOs) in the region are weak in terms of both human and financial resources. This is no surprise. The stigma and discrimination directed at PLWHA and at communities affected by HIV/AIDS in the region–including drug users, sex workers, men who have sex with men, and migrant workers–make it difficult for them to organize, be visible, and gain advocacy and policy skills. In some instances, laws penalizing sex work, drug use, and homosexuality make it even harder.

There are a few groups in the region that provide a basis for activism. The Asia-Pacific Council of AIDS Service Organizations (APCASO) and the Asia Pacific Network of People Living with HIV/AIDS (APN+) work with other regional networks to advocate for the interests of PLWHA and affected communities. Strong local NGOs in Thailand, Malaysia, and elsewhere are also taking up the call of treatment advocacy. Some are involved in treatment literacy, others in buyers’ clubs.

Unfortunately, authoritarian governments do not allow the formation of local NGOs in Vietnam and Burma. China has few NGOs compared with other countries, and the community sector is not developed at all in Papua New Guinea. Regional organizations and groups from other nations will have difficulty providing support to local movements in these countries.

Therefore, building communities for treatment advocacy will be a challenge. Individuals and organizations need to be nurtured and supported. National governments, multilateral agencies, and international NGOs must ensure participation from PLWHA and local NGOs and create mechanisms that incorporate their experience and perspectives into programs and policies.

Clinical research centers and public sector health programs that provide AIDS treatment will need to explore the many options for fostering community involvement. These could include PLWHA support groups, community advisory boards, day care centers that involve PLWHA in counseling and support, antiretroviral programs that include PLWHA in enrollment efforts and treatment education, PLWHA-led policy and advocacy initiatives, and more. All of these approaches can be catalysts in the creation of independent PLWHA groups.

Community-based organizations (CBOs) representing affected communities should also be brought into the discussion. If treatment programs are intended to reach drug users or sex workers, we need to learn from these groups. What is the best way to get treatment to sex workers? Is it through sexually transmitted infection programs or NGO programs? And where and how can we provide treatment to drug users? Are drug substitution programs in place that will support HIV/AIDS treatment access? These kinds of questions must be answered by PLWHA and the organizations that work with them.

The involvement of community is not easy, but it is necessary. Successful scaling up of treatment will require it. Beyond creative mechanisms and programs, capacity-building, and strong networks, what is needed most of all is commitment to this principle and leadership. From that, the rest will follow.