This special session looked at the challenges of leadership and accountability for HIV+ leaders in an era of Greater Involvement of People living with HIV/AIDS (GIPA).

Speakers addressed the ongoing challenges of leadership, trying to represent diverse voices of constituents, often with limited resources and infrastruture. Many HIV+ leaders are themselves volunteers, with limited training or support to assume their responsibilities.

Other speakers addressed strategies to solicit views and voices from PLWHIVs. Some examples: a series of focus groups encouraged PLWHIV's to draw their needs and concerns on a visual map; a email based survey combined with focus groups and interviews; a full organizational review attempting to consult all members. More recently, the Living Summit process identified advocacy concerns for PLWHIVs globally through econsultations, concluding with a two day summit just prior to AIDS2008.

Speakers agreed that accountability must be a priority for HIV+ leaders, as with all leaders. They need to be held accountable for their commitments and challenged on their positions. Some speakers were concerned that some people just continue in their roles without doing the work and without taking steps to remain accountable. As one speaker gently reminded, the slogan "nothing about us without us" was not intended to apply just to particular individuals.

One speaker proposed a shift in understanding of GIPA to the "Greater Investment" in PLWHIV, in recognition that leaders need training, time and resources to consult and be accountable to their constituents. This might help address the question posed by one speaker: "will we be content with our old victories or adapt to generate new victories?"

Anuar Luna presented an overview of the key messages from the pre-conference PLHA event. The four key themes were

·         Universal Access to Care, Treatment and Support

·         Criminalisation.

·         Sexual and Reproductive Health Rights

·         Positive Prevention

Gracia Violeta Ross-Quiroga presented a model of working with communities with high levels of illiteracy which engaged PLHA in participatory agenda setting and produced compelling documentation of systemic challenges. This helped to break a ‘vicious cycle’ of ‘no data leading to no policy and no response’ and started to address a context in which policy regarding PLHA was ‘based on anything but the needs of PLHA’

Speakers discussed the personal and political challenges of leadership and representation on behalf of PLHA. These included

·         Representing a largely hidden and stigmatized constituency requires significant personal resources, as well as time

·         Weak PLHA organizational development, diverse constituencies and the demands of daily and family life work against effective role fulfillment

·         Many stakeholders who seek ‘representation’ show a poor appreciation of these challenges, reflected in unrealistic expectations and limited funding and infrastructure support for communication and consultation activities

It was also noted that some of these issues affect key institutions, with high turnover in Ministries and other bodies leading to lack of continuity and inconsistent policy implementation, with consequent increased demands on PLHA leaders.

Phillipa Jungova Lawson suggested  concerns regarding the ‘leaders of the future’ may be misplaced, noting that there are new leaders out in communities, teaching each other, although they may not be visible on the Internet or at international meetings. We need to do more to recognize and nurture these leaders.

 Jacob Gayle noted that GIPA has resulted in more invitations and increased presence, but not necessarily infrastructure and support to enable the leadership role.