On 21 April 1999, the Namibian press reported that the government was going to declare AIDS a notifiable disease. This announcement sparked much debate about the role of confidentiality in a sound public health approach to the prevention and control of HIV/AIDS. It also became apparent that in Namibia people's understanding of the principle of confidentiality varies widely. Many seem to confuse the concepts of secrecy and confidentiality. They see preserving confidentiality about HIV/AIDS information as strengthening the "veil of secrecy" that surrounds HIV, reinforcing stigma and undermining efforts to control the spread of HIV. A consultative process, initiated by UNAIDS, led to the formulation of a much needed policy framework for reporting and notification of HIV/AIDS. A task force was established to identify, discuss and report on national issues, policies and experiences that could inform the discussion on HIV reporting and confidentiality.

The task force, chaired by the AIDS Law Unit of the Legal Assistance Centre, includes representatives from the Office of the Attorney General and from AIDS service organisations (ASOs), an organisation of people living with HIV/AIDS (PLWHAs), WHO, UNAIDS and the Ministry of Health and Social Services.

To get as much input from as many stakeholders as possible in the debate, a consultative process started in June 1999, with an information meeting with ASOs on the proposal to make HIV/AIDS a notifiable disease.

Also in June, Positive Nation, a group of PLWHAs, asked the task force to facilitate a meeting with the Minister of Health and Social Services to discuss its concerns about government's proposals to make HIV/AIDS notifiable. Positive Nation subsequently raised its concerns with the Minister, who then asked the group to draft a set of guidelines on confidentiality, testing, counselling and treatment.

Collaborative work on draft guidelines

In August 1999, a workshop was organised by the AIDS Law Unit and Positive Nation as a forum for PLWHAs, nurses, doctors, counsellors, ASOs and the Ministry of Health and Social Services to discuss and provide input on draft guidelines on testing, confidentiality, counselling and treatment. The workshop participants requested further consultative meetings with stakeholders in order to fashion a set of guidelines on confidentiality, notification, counselling and reporting representative of the views of the various stakeholders.

A second workshop, organised by the AIDS Law Unit and the National AIDS Co-ordination Programme, was held in October 1999, at which participants were asked to make specific recommendations on confidentiality, notification and reporting. The biggest stumbling block during discussions was the lack of understanding among many stakeholders of the difference between confidentiality and secrecy. Once this was clarified, consensus was reached on a number of critical recommendations.

Recommendations

1 Confidentiality must be maintained at all times, as it is crucial for an effective public health response to the HIV/AIDS epidemic in Namibia;

2 Mandatory notification of family and care givers is not desirable. HIV-positive people should, however, be effectively counselled about the benefits of sharing information, with a view to assisting them make a voluntary disclosure of their status;

• the HIV-positive person in question has been thoroughly counselled;
• counselling of the HIV-positive person has failed to achieve appropriate behavioural changes;
• the HIV-positive person has refused to notify or consent to the notification of his/her partner(s);
• a real risk of transmission to the partner(s) exists;
• the HIV-positive person is given reasonable advance notice;
• the identity of the HIV-positive person is concealed from the partner(s), if this is possible in practice;
• follow-up is provided to ensure support to those involved, as necessary.

4 Reporting is necessary to provide information about the rate and distribution of infection. It is therefore recommended that reporting of HIV test results be done in a manner that protects the confidentiality of the HIV-positive person.

5 Sentinel surveillance is likewise an important means of information gathering to enable health authorities to plan for the epidemic and to assess intervention strategies. It is therefore recommended that provision be made for continued sero-surveillance, utilising anonymous, unlinked testing.

6 Attention must be given to standardising counselling skills and providing adequate counselling facilities.

7 Provision must be made for the establishment of voluntary counselling and testing sites.

At the request of the Minister of Health and Social Services, the AIDS Law Unit has incorporated these recommendations into a draft policy and a workshop has been scheduled with stakeholders to finalise the policy at the end of March 2000.