Though reporting on HIV/AIDS is supposed to be confidential, the cultural and social contexts in Sri Lanka are such that this type of information spreads very fast within the community. When reports are made by telephone or telegram, there is no guarantee the post officer will respect confidentiality. Similarly, medical officers usually give completed reporting forms to a secretary or clerk to post and unsealed envelopes pose a threat to confidentiality.

Many people have reported being stigmatised and harassed, even inside hospitals, after their HIV status became known: the media have hounded patients, PLWHAs and their immediate family members have lost their jobs, their children have been deprived of schooling and PLWHAs have been forced to move.

In one case, five years ago, a migrant returnee who had been deported because of her HIV infection, was harassed and humiliated: it proved easy to get access to her confidential medical information and the entire village knew about her HIV status. She was almost arrested by police on anonymous complaints of spreading an infectious disease, a criminal offence in Sri Lanka. She had to report to the police station for a certain period of time.

Other reports of transgressions include minor health staff demanding money from people who had tested positive, threatening to disclose their HIV status to the community if they refused to pay. Problems do not only occur to people who get tested voluntarily; in addition, some hospital patients have been tested without their consent.

These incidents illustrate how difficult it is to guarantee confidentiality in reporting HIV/AIDS in Sri Lanka. To avoid stigmatisation, those who can afford to travel, prefer to be tested abroad. For the same reason, blood donors sometimes provide false information to avoid being identified.

Against this background, the Community Front for the Prevention of AIDS (CFPA) decided to take action to guarantee strict confidentiality in HIV reporting. CFPA's objective was to protect the human rights of PLWHAs and their families and to facilitate voluntary counselling and testing (VCT). VCT would allow for better monitoring of the epidemic and facilitate targeted strategies for prevention, care and support. CFPA was the first network of NGOs working on HIV/AIDS in Sri Lanka; it started in 1992 and currently has 12 member organisations. While the initial focus was on prevention, human rights issues have become increasingly important. CFPA has addressed issues such as legal ethics and the rights of workers, soldiers and sex workers in relation to HIV/AIDS. Furthermore, CFPA has implemented many programmes on behalf of the National AIDS Control Programme (NACP).

A CFPA steering committee analysed all existing legislation that might have a direct or indirect impact on HIV/AIDS. This one-year exercise resulted in a set of legislation and policy recommendations to the Ministries of Health and Justice, confirming the principles of protecting public health and respect for human rights.

The AIDS Coalition for Education, Care and Support Services, an organisation that monitors violations of PLWHA's human rights, took up the recommendations and advocated for their implementation. Thus, the document raised the awareness of medical officers and lawyers on legal ethics and HIV/AIDS. NACP's Legal and Ethical Subcommittee was reactivated to discuss the issue. A special Task Force of the Subcommittee is now studying existing legislation, policies and practices at the regional and international levels to draft necessary legislation and policies and amend existing laws in Sri Lanka as recommended by CFPA. They have already discussed the recommendation to appoint a National Authority to monitor the practices and violations of rights. A workshop was held to educate the media on their accountability and responsibility to safeguard the confidentiality of infected persons' HIV status.

CFPA presented its recommendations in 1995 and although the government has delayed taking action, it is well aware of AIDS activist groups that are acting as watchdogs, advocating for human rights issues in the context of HIV/AIDS.