Submission on Regulations Relating to Communicable Diseases and the Notification of Notifiable Medical Conditions
On April 23rd 1999 the Minister of Health published draft Regulations to add Acquired Immune Deficiency (AIDS) and AIDS related deaths to the Schedule of Notifiable conditions. If these Regulations become law all health professionals1 will be required to:
- complete a written report containing information about people diagnosed with AIDS This report will be anonymous, but will include details about, age sex, population group, date of diagnosis, medical condition at time of diagnosis etc.
- report every AIDS diagnosis to “immediate family members and the persons who are giving care to the person . . . and, in cases of acquired immune deficiency syndrome (AIDS) death, the person responsible for the preparation of the body of such person.”
The actions that are proposed in (a) and (b) are presented as if they are a logical extension of each other. But in reality they are very different. In essence what is being proposed is:
- ‘Anonymous Vertical Notification’ of details about people diagnosed with AIDS to the Health Department; and
- ‘Named Horizontal Notification’ of an AIDS diagnosis to “family members”, “care-givers” and, in cases of AIDS related death, “people responsible for preparation of the body”.
These two types of ‘Notification’ serve different purposes. They also have different consequences for human rights. Unfortunately, however, in the public debate that has taken place around Notification (both before and after the publication of the draft Regulations) these purposes have been conflated. On the whole they have mistakenly and emotionally been understood to mean ‘partner notification’, which, it is commonly believed, is a measure that is needed to prevent ‘innocent people’ from being infected with HIV.
In this vein, AIDS notification has been widely misinterpreted to be an action that will roll back patient’s rights to confidentiality and privacy. Thus, in 1996 Dr Olive Shisana, the former Director General of the Department of Health, described confidentiality “as a superficial constraint on health workers” and asked “whether we should not be introducing a programme of partner notification”. Shisana warned of “a clear conflict of interest between the maintenance of confidentiality for the infected person and the right to information of those they come into contact with.” The Inkatha Freedom Party (IFP) has also on several occasions used similar reasons to raise this issue in the National Assembly. Soon after the publication of the draft regulations a spokesperson for the New National Party was quoted as saying that ‘Notification’ was necessary because the “Human rights of HIV positive people cannot weigh more than the rights of HIV negative people.”
This is a serious misunderstanding of the purpose of AIDS Notification. In fact, judging by the evidence we would argue that, until the publication of the draft Regulations, it had not been the government’s intention to propose ‘horizontal AIDS notification’ in order to undermine a patient’s rights to privacy and confidentiality in the health care setting. The NACOSA National AIDS Plan (which the government adopted as its policy in 1994) describes confidentiality as a “non-negotiable” and the former Minister of Health, Dr Nkosazana Zuma, on many occasions publicly defended the right to privacy.
In January 1998 in an attempt to clarify these issues Dr Zuma informed the AIDS Consortium that the primary intention of AIDS Notification was to “obtain sufficient information to plan appropriately for the health service needs of persons diagnosed with AIDS”. Apparently confirming this a January 1998 ‘draft document on AIDS Notification in South Africa’ written by the Department of Health listed the specific aims of making AIDS Notifiable as being:
- To monitor the AIDS epidemic, its distribution in the population;
- To assess the burden of disease, including data on duration of hospital stay;
- To monitor trends in patterns of AIDS-defining illness; and identify risk factors;
- To allocate funds appropriately for intervention programmes on care.
Information uses that are cited are:
- Planning intervention, care needs and their resource implications;
- Planning the supply of preventative treatment and required medicines;
- To improve the general standard of diagnoses of HIV-related conditions;
- To improve attitudes to dealing with HIV+ persons on the part of health care staff and civic society;
- To assist in increase (sic) the proportion of partners who are notified;
- To improve the management of latent syphilis in HIV+ persons.
From the above there seems to be one over-riding reason for AIDS notification: to collect better data to assist a range of interventions which require careful planning. Although the Department of Health document states that Notification will ‘increase the proportion of partners who are notified’, how or by what means this will be achieved is not set out.
In order to analyse the draft Regulations and examine their implications for human rights we must clearly distinguish between the two types of proposed AIDS ‘Notification’. In relation to ‘anonymous vertical Notification’ it is necessary to analyse the capacity of the Department of Health (DoH) to gather the required information legally, ethically and efficiently. In relation to nominal ‘horizontal family Notification’ the analysis will concentrate on the implications of mandatory disclosure by health professionals for human rights, good public health practice and HIV prevention.
Regulation Relating to Communicable Diseases – 1999 – ALP