On 23 April 1999, the Minister of Health published the Amendment of the Regulations Relating to Communicable Disease and the Notification of Notifiable Conditions in the Government Gazette, No. R485. The draft regulations include provisions for the notification of the Acquired Immuno Deficiency Syndrome (AIDS), but do not require that HIV-positive status be notified.

The notification of AIDS has long been on the Health Department's agenda. In September 1997, the Inter-Ministerial Committee on AIDS took a policy decision to make AIDS death and disease notifiable. The regulations appear to be largely based on the Draft Document on AIDS Notification in South Africa, prepared by the Directorate of Health Systems Research and Epidemiology for the Department of Health (January 1998). Another important driving force appears to be related to discussions amongst health sector ministers at the April 1999 meeting of the Southern African Development Community (SADC). A resolution on HIV/AIDS released after the meeting stated that "preventative activities carried out so far have failed to contain the spread of infection".

2. Reasons for Making AIDS a Notifiable Disease

According to the Department of Health, the main reasons for making AIDS a notifiable disease are:

• To collect information on how many people have AIDS disease, or have died from AIDS
• To discover how AIDS shows itself, and how it is spread in the population
• To monitor the disease, identify risk factors and evaluate trends of the epidemic
• To plan appropriate prevention and treatment strategies
• To determine the demand for medicines and the need for services

3. Content of the Regulations

The draft regulations constitute an Amendment to existing regulations under the Health Act, 1977 governing notification and communicable diseases. The regulations set out the reporting procedures for notifiable diseases to be followed by medical practitioners. Medical practitioners include medical doctors and practitioners registered under the Chiropractors, Homeopaths and Allied Health Service Professions Act (Act No. 63 of 1982). Medical practitioners also include any other person legally competent to diagnose and treat a person with regard to notifiable medical conditions. Notifications are made to the health section of the local authority, who are expected to send weekly reports to regional directors who will forward the reports to the Director-General, Department of Health.

The Regulations add AIDS to the list of notifiable diseases and specifies what information must accompany the AIDS notification. This includes the patient's age, gender, population group, date of diagnosis, medical condition at the time of diagnosis, information about the probable place and source of infection, and the name of the city, town or magistracy where s/he resides.

The source of infection refers to whether the infection was due to sexual activity, drugs injected into the body using needles, blood transfusion, mother-to-child transmission or any other source.

Because of the special reporting requirements for AIDS notification, a special form for notifying AIDS will be drawn up by the Department of Health and distributed to local authorities. To ensure confidentiality of persons living with AIDS, names will not be disclosed to the health authorities either orally or in the written report. This is different to the existing situation for other notifiable conditions where the person's name is included.

The draft regulations further specify that the person making the AIDS diagnosis must inform immediate family members and caregivers of the person diagnosed with AIDS. In cases of death due to AIDS-related illnesses, the persons who prepare the body for burial must be notified of the cause of death.

4. Purpose of the Regulations

The Department of Health’s objectives for making AIDS a notifiable disease are to:

• Provide accurate national information on the number of people with AIDS, and on the number of AIDS-related deaths
• Increase public awareness and subsequently foster public acceptance of AIDS
• Monitor trends and patterns of AIDS-defining illness
• Identify risk factors and the distribution of AIDS in the population.

This information is seen as essential for planning programmes, allocation of resources, and for evaluating the number of people who may require hospitalisation, community or home care.

The government further perceives the voluntary and anonymous system of reporting by doctors of all newly diagnosed AIDS patients a failure. Lastly, other countries in Africa, such as Angola and Kenya, and countries such as Sweden and Israel have made AIDS notifiable and the Department believes that South Africa can learn from these experiences, although it is acknowledged that AIDS reporting markedly varies between countries.

The government’s decision to make AIDS and AIDS-related death notifiable needs to be seen within a broader context of an uneven, often totally inadequate response to the AIDS crisis from government. In 1994, the Cabinet adopted a national AIDS plan which stressed the need to formulate a strong, shared vision of mobilisation to focus all of the country's resources on fighting AIDS. However, instead of effectively combating the disease the country's AIDS's vision appears to have become clouded and bogged down by controversial policy decisions.

Our concerns more specifically revolve around the following issues:

1. Legal and Human Rights

The Bill of Rights in the Constitution and the Draft National Health Bill (2/98) sets out provisions to protect the rights of individuals based on what is reasonable and justifiable in a democratic society. In this context it is important to acknowledge that public health and human rights are interconnected in multiple ways. Health is a requirement for effecting human rights and human rights are essential for achieving good health. The draft regulations as they stand are in danger of substantively infringing on several of these rights, such as the right to equality, dignity, and privacy; the right to freedom and security of person; and the right to access of health care services.

5.1.1 Rights to equality, dignity, privacy and freedom and security of the person

Within a context of high levels of intolerance and fear of AIDS, implementation of the regulations are likely to fall particularly hard on persons living with AIDS. Women will be particularly burdened in this respect. Women interact with health care services to a greater extent than men do and are therefore more likely to be tested for and diagnosed with AIDS. Disclosure to male partners, other family members or caregivers could adversely impact on women's socio-economic status and increase already unacceptable high levels of domestic violence.

The rights of dignity and privacy of AIDS patients are compromised through the possible disclosure of information about their health status. Currently, there are ethical procedures in place to enable health workers to use their discretion about disclosure. The aim is to protect the person's right to confidentiality, with the understanding that the impact of disclosure will depend on a person's particular circumstances. If a person living with AIDS decides to disclose her or his status to partners, adequate counselling facilities are available.

The draft regulations require health care providers to disclose this information with or without the patient's consent. This provision is an infringement on a person's right to have control over their own body, and security of person. Blame would be placed on the person living with AIDS, and they could be exposed to further violence and isolation. As a result, fewer people may voluntarily be tested for AIDS, and this may drive the epidemic underground. People who are not infected or do not know their status are lulled into a false sense of security which undermines efforts towards effectively dealing with the epidemic.

Notification will not necessarily promote greater visibility of AIDS or promote greater public acceptance and a more caring environment within communities. In fact, it may do the opposite by fostering greater discrimination. Yet a more accepting and caring environment is essential if people are to be encouraged to disclose their AIDS status.

5.1.2 Right to access of health care services

The Bill of Rights (Section 27(1)(a)) states that everyone has the right to access to health care services. Section 27(2) obliges the state to take reasonable legislative and other measures to achieve the progressive realisation of these rights. In other words, the state has an obligation to ensure an enabling environment for people to access health care. Notification would negatively impact on this environment due to creating distrust between health care providers and consumers of health care services, and infringing on consumers' right to confidentiality. The overall impact would serve to discourage people from using health care services.

5.2 Care and counselling

The draft regulations fail to adequately address issues of care and counselling which will arise once the regulations are implemented. The regulations do not clarify the terms "immediate family" and "caregiver", both of which are open to broad and conflicting interpretation. Notification will not promote adequate levels of care necessary for persons living with AIDS. South Africa cannot provide access to treatment, accommodation and to a range of support services which are offered as public health incentives or benefits in other countries where AIDS is a notifiable disease. Limited resources which could be used for these purposes will rather be used up on the costs of implementing the notification process. Experience with other notifiable diseases, such as tuberculosis (TB), shows that relying on the person living with AIDS to follow up on contacts leads to lose of contacts

Provisions for counselling for persons living with AIDS and their caregivers, while essential, are not dealt with in the Regulations. The burden for counselling would fall on already over stretched health care professionals. In essence, enforcement of the regulations will undermine the trust between health care provider and patient which is crucial in the counselling situation.

5.3 Surveillance and implementation

Information collected through the notification process is often inaccurate. Furthermore, anonymous reporting could lead to duplicate reporting or under-reporting. A cost analysis for the implementation of notification, including the costs of training and employing medical staff, has not been conducted. This means that notification may be an expensive process while, at the same time, the data collected is not of high quality. Notification will provide information about trends of AIDS infection five to 10 years ago. This information will not be useful for current planning of HIV/AIDS prevention programmes

A more reliable and less costly alternative to making AIDS notifiable is to undertake sentinel AIDS surveillance, which entails collecting data on a specific survey population such as users of an ante-natal clinic. Sentinel surveillance may involve selected sites in each province (approximately 5 to 10 sites per province) that will be responsible for routine AIDS surveillance in both outpatients and inpatients. Reporting rates and data quality can be closely monitored to ensure that trends will be understood.

To estimate rates of HIV/AIDS, a set of well-planned active surveillance community-based surveys with counselling and follow-up of people with HIV could be undertaken. Existing hospital information systems which could be used to generate meaningful patient data on admissions for HIV/AIDS and attendance at outpatient units can be improved.

7. The Way Forward

The new Minister of Health recently announced that the government is rethinking its decision to make AIDS a notifiable disease. The government is giving consideration to the arguments advanced by HIV/AIDS non-governmental organisations that notification of AIDS would only provide information about the HIV-epidemic as it was about five years ago, given the time it takes to develop signs of the disease after becoming infected with the virus. Submissions, comments and representations from the public will be considered.

For more information on the Amendment of the Regulations Relating to Communicable Disease and the Notification of Notifiable Conditions, please contact Phyllis Orner at 021 448 8702, or by fax at 021 447 0624, or by Email at phyllis@philaw.co.za

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