According to the academic definition, advocacy is a deliberate process of speaking out on issues of concern in order to exert some influence on behalf of ideas or persons.
AIDES and its activists often advocate without realising they are doing so.
They defend a cause: the fight against Aids. They defend a person: those vulnerable to or living with HIV/Aids.
Daniel Defert’s famous claim that the “patient” could be a “social reformer” is a form of advocacy that is very dear to our organisation. Above all, Daniel Defert wanted to create an organisation which would be very active in the field of advocacy in order to make the society adjust itself to the demands of the patients instead of the other way round. In a letter about the creation of AIDES he writes “…I propose a place of reflection, of solidarity, of change, do we want to build it...?”
Right from the beginning of the 80s, the Aids epidemic, the actors in the fight against Aids and first and foremost AIDES activists contributed to a change in the doctor/patient relationship. From then on, the patient could expect to negotiate his/her care with the doctor; patients gradually asserted themselves in the executive power of health establishments.
The patient as “social reformer” and political mobilisation are at the heart of AIDES’ actions. We still have many challenging battles to fight.
In the same way, on the organisation level, AIDES and four other HIV/Aids organisations set up a collective in 1992 called the TRT5. This collective brought a key contribution to the defence of patients’ interests, rights and needs in terms of research, ethics and therapeutic development: access to treatment, ATU (Temporary Use Authorization, which allows patients to take medication whose development is still at an early stage (Phase II), fight against therapeutic failure and side effects.
Thus, in the law of the 2nd March 2002 (patients’ rights and the quality of the health system) this mobilisation process consolidated the recognition of individual rights (access to medical records) and collective rights (representation of patients in the health system’s governing bodies).
We still have many challenging battles to fight. Patient organisations, like AIDES, have united with each other to incite specific scientific research. For example COM’TEST, a community-based testing project.
AIDES is a driving force in social improvement. Its actions are often ahead of their time. For example, in the mid 80s, AIDES activists began to give out clean injecting needles. This initiative, illegal at the time was enough to convince the government of its utility. The PACS (civil union for homosexual couples) or the AERAS convention (insurance and loans for people with an aggravated health risk) are other examples of advocacy which helped to improve the lives of those living with HIV/Aids.
The aura of AIDES in the world, major actor in the fight against HIV/Aids, has been crucial in leading other organisations to be members of the board of the Global Fund. Hélène Rossert, then managing director of AIDES from 1996 to 2007 was Vice President of the Fund for 2 years.
These concrete examples of advocacy are only the advocacy actions that we have led up to now. A lot still remains to be done. Thanks to the actions carried out in the field and the force of our movement we can, today, make our claims heard on national and international levels.
In the same way, on the organisation level, AIDES and four other HIV/Aids organisations set up a collective in 1992 called the TRT5. This collective brought a key contribution to the defence of patients’ interests, rights and needs in terms of research, ethics and therapeutic development: access to treatment, ATU (Temporary Use Authorization, which allows patients to take medication whose development is still at an early stage (Phase II), fight against therapeutic failure and side effects.
Thus, in the law of the 2nd March 2002 (patients’ rights and the quality of the health system) this mobilisation process consolidated the recognition of individual rights (access to medical records) and collective rights (representation of patients in the health system’s governing bodies).
We still have many challenging battles to fight. Patient organisations, like AIDES, have united with each other to incite specific scientific research. For example COM’TEST, a community-based testing project.
AIDES is a driving force in social improvement. Its actions are often ahead of their time. For example, in the mid 80s, AIDES activists began to give out clean injecting needles. This initiative, illegal at the time was enough to convince the government of its utility. The PACS (civil union for homosexual couples) or the AERAS convention (insurance and loans for people with an aggravated health risk) are other examples of advocacy which helped to improve the lives of those living with HIV/Aids.
The aura of AIDES in the world, major actor in the fight against HIV/Aids, has been crucial in leading other organisations to be members of the board of the Global Fund. Hélène Rossert, then managing director of AIDES from 1996 to 2007 was Vice President of the Fund for 2 years.
These concrete examples of advocacy are only the advocacy actions that we have led up to now. A lot still remains to be done. Thanks to the actions carried out in the field and the force of our movement we can, today, make our claims heard on national and international levels.
