Global communities respond to HIV/AIDS

When international AIDS donors agreed in 1994 that 'greater involvement of people with HIV and AIDS' (GIPA) was a good policy, they did not expect its impact to be so far-reaching. Twelve years later, GIPA is much more than a policy. It has generated a transnational therapeutic movement and new forms of community.

Several factors made GIPA a sensible approach:

• the success of the gay community in developed nations in controlling HIV/AIDS
• human rights-based approaches had gained popularity over established 'contain and control' public health strategies
• the 'access to treatment' movement helped to shift the response from a prevention dominated one to that which combines treatment with anti-retrovirals.

All this had a wide impact, for instance, it provided a powerful and effective voice for modifying the global intellectual property regime through amendments to TRIPS (trade related aspects of intellectual property rights) to make HIV/AIDS drugs accessible to patients. GIPA also gave rise to a global network of people.

The motivation for the transnational advocacy coalitions was the relationships formed between grassroots activists and people living with HIV and AIDS in developed and developing nations. How did these encourage new forms of community and citizenship?

In Burkina Faso and Côte-d'Ivoire, a group of people living with HIV and AIDS, and HIV/AIDS activists were already doing HIV prevention in 1994. As in many other countries, these prevention activists were quickly sensitised to the issues and challenges around treatment and care. This was possible partly because of their prevention programmes and, more directly, because some activists found out that they were HIV positive themselves. This strengthened personal ties between HIV positive activists across countries and led to a practical solidarity around the issue of treatment.

In the absence of donor support, developed country activists shared drugs and informal advice with other activists who set up temporary and informal treatment and support programmes. African activists were essentially experimenting and learning from experiences. In the process they built an impressive community experience-based knowledge and practice around treatment.

Lessons learnt include:

• Limited resources can put a strain on those delivering the services about who gets treatment and who does not.
• The long-term impact of treatment creates communities of people who share a powerful experience of regaining health: they are bound by a common experience, practical solidarity and sometimes even marriage.
• Due to their links these communities are uniquely placed to respond to the challenges that treatment poses.
• Restoring people ill with HIV to good health creates opportunities and challenges for prevention that need to be met at the community level and not just through programmes for individuals.
• Donor policies can help to create the forms of community they wish to strengthen: therapeutic communities of people with HIV could not have formed without a policy for empowering them.

With the global policy shift towards treatment in 2000, activists and community workers have become essential to scaling-up access to treatment and for new prevention technologies. It is important now to:

• Help people with HIV and AIDS to build their individual and community abilities to tackle the epidemic over the long term
• develop strategies to use therapeutic activism and access to treatment as forces to change health care delivery across countries
• find ways to learn from local experiences and challenges in delivering health care programmes.

Vinh-Kim Nguyen
Department of Social and Preventive Medicine, Faculty of Medicine, University of Montreal 1420, Mont-Royal Boulevard, Montreal, Quebec, Canada H2V 4P3
T +1 514 524 1001 247
F +1 514 524 3831
vinh-kim.nguyen@umontreal.ca

See also

Antiretroviral Globalism, Bio-politics and Therapeutic Citizenship, Background paper for the Governance, Equity and Health Conference 2005, by Vinh-Kim Nguyen, 2004
www.idrc.ca/es/ev-82528-201-1-DO_TOPIC.html

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