Activists to the forefront

Shortly after those events unfolded in the United States, a group of European AIDS activists and doctors created their own initiative, the European AIDS Treatment Group (EATG), [3] whose goal was to push for a universal standard of care and widespread access to new medications. The EATG was, and still is, heavily engaged in sharing treatment information and training people about scientific research and lobbying, thus strengthening long time treatment activists and creating new ones. At first some may feel intimidated by all this technical jargon but practice has proved that even people with no medical background can learn it with a little hard work. The EATG provides a forum to the HIV community to discuss and form policies and act as an equal stakeholder along with the government, regulatory authorities, physicians, and pharmaceutical companies. With the latter it negotiates issues such as compassionate access to experimental medications for people who have no other treatment options, and regularly discusses such issues as clinical trials, side effects, quality of life, and new formulations.

During our interactions with companies and researchers the EATG encountered a number of difficulties in ensuring timely and consistent input with regard to clinical trials. Community involvement was erratic and was far too dependent on the initiative of drug companies who invited EATG representatives when and where they chose. Furthermore, we needed advanced training to be able to express ourselves with the necessary terminology, if we wanted to be heard and be taken seriously.