Since 1996 and the arrival of protease inhibitors, French public authorities have called into question the already inadequate rights of persons with AIDS. The logic is simple : since new treatments would have "cured" us, we would no longer need specific benefits, but ought to work, earn an income and lead a " norma " life without any special social protection.
However, triple therapies have not eradicated the AIDS virus. In France, they have failed for 10% of HIV-positive persons. Moreover, the relative success of treatments must not overshadow the fact that their secondary effects are sometimes as disabling as opportunistic infections. Finally, the little will and energy that some of us recover is not enough to enable us to return to work.
Since January 1999, Act Up-Paris has maintained a permanent reception office, open to all people living with HIV/AIDS in order to help them with social and legal procedures. By informing the sick of their rights, putting pressure on administrations, setting legal precedents favorable to people with HIV/AIDS, and by pointing out shortcomings of the law, the Social Rights reception center establishes a detailed map of the social problems facing infected persons. There are many battles to be fought.
Act Up-Paris is working for the upgrading of the Allowance for Handicapped Adults (AAH) (3 600 Francs per month). We are fighting to have the specific problems of people with HIV/AIDS — especially the secondary effects of treatment — recognized as full disabilities so that infected individuals may fully benefit from all services available to the handicapped (the AAH but also the Third Party Compensatory Allowance, the disability card, etc.). Moreover, we denounce the principle of a forced return to work, which excludes many sick people from the AAH and obliges them to take jobs that they do not want or that they are unable to keep. Finally, we support those people with HIV/AIDS who want to work by fighting for improvement of their working conditions, respect of confidentiality in the hiring process and within the enterprise, non-discrimination and arrangements for sheltered jobs.
How can people take care of their health when they are poorly housed or when they cannot carry our basic everyday tasks such as housework of errands ? Housing policies, especially in Paris, exclude people who are in precarious health or sick, distance them from their treating hospitals, when they do not simply turn them out into the street. At the same time, provisions for home care (household help, home nursing care, among others) are being called into question by public authorities.
The Social Rights Commission is working actively with other associations to set up an efficient scheme for home care in respect of the needs of persons living with HIV/AIDS. Also, in the context of municipal campaigns, we will be engaging in real harassment of elected officials and mayoral candidates to ensure that housing policies finally take into account the situations of those who are in precarious health or sick.
The Agreement of 1991 effectively authorized insurers and financial backers to systematically exclude HIV positive people from insurance coverage. Act Up has strongly denounced this Agreement. This year a committee, the " Belorgey Committee ", has worked to propose a reform. It is now to the governement to act. and to guarantee the insurability of people with HIV.
Universal Healthcare Coverage was presented as an example of social progress, but in reality it legitimizes and systematizes health care inequalities. It excludes all undocumented foreigners. Income ceilings create threshold effects that oblige the poorest people to contribute in order to obtain the full reimbursements for health care that were totally free of charge in the past. Act Up-Paris is fighting for true universality of this coverage and integration into its system of all those in need.