Ever since people with AIDS demanded the right to ”be involved at every level of decision-making“ with the 1983 Denver Principles, [1] they have been traveling a long upward road towards control of their own lives.

In many countries, HIV-positive activists today not only participate in the management of service organizations and sit on their boards and governing committees, but are also involved in shaping research policy and its implementation. Of course this has required constant effort to convince officials and politicians of the importance of having the input of affected communities. The first and great victory for community involvement in clinical trials was the establishment in 1990 in the United States of Community Advisory Boards, which oversee clinical trials funded through the AIDS Clinical Trials Group (ACTG), a U.S. government funded body created in 1987 to shape the AIDS research agenda and set standards for HIV drug trials. Building on the Denver Principles and the power of AIDS activist groups such as ACT UP NY, within one tumultuous year from late 1989 to late 1990, HIV activists first showed up, uninvited, to an ACTG meeting; then came, invited as observers; and finally pushed their way onto ACTG governing bodies. [2]