The regulations provide that when a medical practitioner or any other person duly competent to diagnose and treat a person with regard to notifiable medical conditions, diagnoses the notifiable medical condition in a person and in cases where the medical condition diagnosed is the Acquired Immuno-Deficiency Syndrome (AIDS disease):

1. the person performing the diagnosis shall inform the immediate family members and the persons who are giving care to the person in respect of whom the report is made, and
2. in cases of Acquired Immuno-Deficiency Syndrome (AIDS) death the person responsible for the preparation of the body of such person.

The regulations further require that the person performing the diagnosis, notify the Health Department of the AIDS diagnosis. In this regard, the regulations provide that "on making a report to the Health Department with regard to Acquired Immuno-Deficiency Syndrome, the following details shall be furnished: age, sex, population group, date of diagnosis, medical condition at the time of diagnosis, any available information concerning the probable place and source of infection and the name of the city, town or magistracy in which the person resides in respect of whom the report is made."

The Minister's alleged motivation for the proposed regulations are three-fold:

Although we congratulate the Department of Health on its commitment to preventing HIV transmission and developing intervention strategies to deal with extremely high rates of infection, our submission examines whether notification as proposed by the regulations is in fact the most effective way for the Department to achieve its objectives. The submission examines many constitutional issues relating to AIDS notification. Particular attention is given to the disproportionate impact of the proposed regulations on women. This submission also highlights women's increased susceptibility to HIV due to both biological and social factors.

Constitutional issues relating to AIDS notification are set out briefly below:

The submission argues that:

1. The proposed regulations do not create an enabling environment for an individual to gain access to health care services.
2. In light of the breach of a patient's right to privacy and confidentiality and the potentially damaging effects of notification to immediate family members and care-givers, it is likely that many patients, fearing such notification will self-exclude themselves from the health system. Self-exclusion is also likely to occur because of the absence of any benefit to the AIDS diagnosed person.
3. The value of notification as a means of prevention of further transmission of AIDS is questionable for the following reasons:

1. the regulations require notification of immediate family members and care-givers upon AIDS diagnosis, which is unlikely to serve a preventive purpose to partners of the diagnosed person, who are likely to have already been infected.
2. the value of notification to immediate family members and care-givers is questionable as AIDS is not casually transmitted;
3. in regard to notification of an AIDS death, a principle of universal precautions in the case of any death should apply.

4. Diagnosis is a fundamental aspect of the right of access to health care services. People approaching health care services will not want to be tested if there is a risk of notification. Diagnosis is therefore unlikely to occur in the context of HIV/AIDS, should these regulations be adopted for HIV/AIDS.
1. A further question to be addressed is whether notification allows for the effective and equitable use of limited resources in terms of section 27(2) of the Constitution. The critical question is whether acquiring data through notification warrants the use of scarce resources. Although State notification is an extremely expensive way of acquiring data, the information obtained through notification is unlikely to reflect an accurate picture of the reality of the AIDS epidemic. The shortcomings of State notification as a means of acquiring data raises serious questions as to whether it does, in fact, constitute the most effective and efficient use of available resources.
2. A further argument advanced by the Department of Health in support of the regulations is to stop the epidemic and ensure partner notification. However, the wording of the regulations extends notification beyond partners to all immediate family members and persons giving care to the person diagnosed with AIDS. The proper implementation of this provision will largely depend on the co-operation of the patient and whether the patient is willing to disclose who the immediate family members and care-givers are. Even if disclosure was made by the AIDS diagnosed person, the implementation of the disclosure provision could have phenomenal cost implications in a severely cash-strapped health system.
3. The regulations make it mandatory for health care professionals to notify immediate family members and care-givers. This could potentially expose health care professionals to claims of civil liability, should they fail to notify the relevant persons. Such claims of civil liability will further divert resources away from the health care service delivery and would undeniably constitute an inefficient use of available resources.
4. A further question that needs to be addressed is whether the regulations constitute a reasonable measure on the part of the State. State notification is an extremely expensive mode of acquiring information that is often inaccurate. The data acquired will reflect prevalence patterns of HIV from 5 to 10 years ago and may prove useless in prioritising future intervention strategies. It is submitted that notification does not constitute a reasonable measure on the part of the State.
5. The reasonableness of notification to family members and care-givers also needs to be questioned. Immediate family members and persons giving care to the AIDS diagnosed patient often constitute an important support structure to the person suffering from AIDS-related complications. Notification may threaten an important source of emotional, financial and other support for a person living with AIDS. Furthermore, the regulations make such notification mandatory irrespective of their potentially harmful and violent consequences for the AIDS infected person. The limited preventative role of notification to family members and care-givers, the enormous resources required for its implementation as well as the barriers it poses to gaining access to health care services indicate that notification to immediate family members and care-givers does not constitute a reasonable measure on the part of the State.

Section 14(d) of the Constitution provides everyone with a right to privacy which includes the right not to have the privacy of communications infringed. Communications relating to AIDS diagnosis clearly fall within the ambit of this section. The submission argues that:

1. It is unlikely that the AIDS diagnosed person's rights to privacy and confidentiality will be violated in the case of State reporting. However, the regulations require reporting on the source of infection which may infringe a partner or previous partners right to privacy.
2. Notification to immediate family members, care-givers and persons preparing the body in the case of an AIDS death constitutes a significant infringement of an AIDS diagnosed person's right to privacy. It is unlikely that such infringement can be justified in view of the purpose of the provision in relation to the extent of the limitation. There is no rational connection between the purpose of the limitation and its effectiveness.

The submission also concludes that the regulations violate the right to equality due to their disproportionate effect on women:

1. More women than men are infected with HIV in South Africa. Some of the reasons for the higher rate of HIV infections in women are the differential rates of transmission between men and women and the higher rates of female sexual exposure to infected men. It is generally accepted that male to female transmission of HIV infection is more likely to occur than female to male transmission. Women are biologically more susceptible to the transmission of HIV. The consequences of unprotected sex are therefore potentially serious and life-threatening for women.
2. In the light of current patterns of transmission, it will often be the case that a woman's partner is already infected and that he infected her. Social practices such as dry sex also promote the spread of HIV among women.
3. On a social level, women are vulnerable to HIV transmission. Their subordinate position in society makes it difficult if not impossible for them to protect themselves from HIV. Women's status in society and sexual relations is such that:

• Women are unlikely to be able to negotiate safe sex practices, particularly in violent relationships,
• Women are forced to have sex and rape is endemic in South Africa.

4. The potential consequences of notification for women who are raped represent an added trauma. Many women are unwilling to tell partners that they have been raped and that they are testing for HIV. They fear the stigma as well as the violence which may result from such a disclosure. If the proposed regulations are introduced, a rape survivor will be less inclined to have herself tested for fear of being diagnosed with AIDS.
1. Studies have shown that HIV or AIDS-infected women may resist partner notification because they face domestic violence, emotional abuse or abandonment. Many women whose HIV/AIDS status becomes known to others, suffer direct violence at the hands of their partners, family or community.
2. HIV status should be known as early on in pregnancy as possible to maximise the benefits of early knowledge. This knowledge is relevant for decisions regarding termination of pregnancy, treatment of the pregnant women, medical interventions to reduce the possibility of maternal HIV transmission and decisions about whether to breastfeed. If women fear notification they will not agree to voluntary HIV testing when seeking antenatal care. As knowledge of HIV status is a prerequisite for any medical intervention to reduce the possibility of mother to child transmission of HIV, such interventions will not be utilised and possibilities of limiting perinatal transmission in South Africa will be diminished.

Section 12(1)(c) of the Constitution provides that everyone has the right to freedom of security of the person, which includes the right to be free from all forms of violence from both public and private sources. The submission outlines the various forms of violence from both public and private sources which women may face as a result of notification to immediate family members and care-givers. The proposed regulations potentially constitute an infringement of the right to freedom of security of the person. It is unlikely that such an infringement can be justified.

In light of the aforementioned constitutional arguments, the Women's Legal Centre and the Socio-Economic Rights Project at the Community Law Centre urge the Department of Health to abandon its draft regulations relating to notification of AIDS. Instead, the Department is urged to consider the following recommendations:

In view of the enormous financial costs of notification to the state as well as the inaccuracies of data collected through such notification, it is strongly recommended that the proposed regulations relating to state notification be jettisoned.

However, given the vital importance of data collection for the planning of future intervention strategies, the Department of Health is urged to investigate other options that would better achieve this purpose. In particular, the Department of Health is urged to consider the use of additional sentinel surveillance systems.

In light of the financial costs associated with mandatory notification to immediate family members and care-givers, its limited value as a preventative measure, its violation of the AIDS diagnosed person's human rights as well as its disproportionate impact on women, the Department of Health is strongly urged not to adopt this aspect of the regulations.

Instead, the Women's Legal Centre and the Socio-Economic Rights Project support:

• Counselling and encouragement to the HIV diagnosed person to disclose his/her HIV status to partners where there is a substantial risk of harm arising from non disclosure;
• Only in instances where the HIV diagnosed person refuses to make such disclosure, that the health care professional undertake non-consensual disclosure:

• where there is a substantial risk of harm; and
• after a risk assessment of domestic violence has occurred.

• Education, information and awareness strategies aimed at HIV prevention.

In view of the limited value of notification to persons preparing the body in the case of an AIDS death, as a preventative strategy as well as the potential breach of confidentiality as a result of disclosure to undertakers, the Department is strongly urged not to adopt this aspect of the regulations. Instead, a principle of universal precautions as is currently required by Regulations No. 2438/30 October 1987 is supported.

This submission is in response to the draft regulation, No. R485 as contained in the Government Gazette dated 23^rd April 1999. The draft regulations propose an amendment to the regulations relating to communicable diseases and the notification of notifiable medical conditions. The submission relates to the proposed amendment in regard to the acquired immuno-deficiency syndrome (AIDS disease).

The proposed amendment requires that where the medical condition diagnosed is acquired immuno deficiency syndrome (AIDS) disease, the medical practitioner as registered under the Chiropractors, Homeopaths and Allied Health Service Professions Act (Act No. 63 of 1982) or any other person legally competent to diagnose and treat a person with regard to notifiable medical conditions, shall report his or her findings -

1. in cases where the condition concerned is also a communicable disease, without delay orally, and this must be confirmed in writing within 24 hours;
2. in any other case within seven days orally and, if so requested by the body to which the report must be made, in writing to -

1. the office of the health section or any appropriate section of the local authority concerned; or
2. the appropriate regional director in cases where the Director-General acts as a local authority in terms of Section 30 of the Act.

The proposed regulations further provide that where the medical condition diagnosed is acquired immuno deficiency (AIDS) disease, the person performing the diagnosis shall also inform the immediate family members and the persons who are giving care to the person in respect of whom the report is made (care-givers) and, in cases of acquired immuno deficiency (AIDS) death, the persons responsible for the preparation of the body of such person.

The Minister's alleged motivation for the proposed regulations are three-fold:

1. Notification is required to provide data to track the epidemic, prioritise interventions and evaluate the epidemic;
2. Notification is needed to ensure partner notification and to stop the spread of the epidemic;
3. Notification is needed to ensure greater public visibility of the epidemic.

The Socio-Economic Rights Project at the Community Law Centre and the Women's Legal Centre wish to congratulate the Department of Health on its commitment to preventing HIV transmission and planning intervention strategies to deal with the exceedingly high rates of infection. However, this submission examines whether notification as proposed by the regulations is in fact, the most effective way for the Department to achieve its objectives. The submission examines some of the constitutional issues relating to AIDS notification. In particular, it deals with the implications of notification for the right of access to health care services, the right to equality as well as the right to privacy and confidentiality. Particular attention is given to the disproportionate impact of the regulations on women. The latter is based on women's increased susceptibility to HIV due to both biological and social factors. It further draws attention to the higher levels of diagnosis among women on account of their increased use of public health facilities. The submission also deals with the implications of such notification on women's constitutional rights to equality and freedom and security from violence. These constitutional arguments are examined in regard to state notification and notification to immediate family members, care-givers and persons preparing the body in the case of an AIDS death, as different constitutional arguments are applicable in relation to notification in each of these instances.

Section 27(1)(a) of the Constitution provides that everyone has the right of access to health care services, including reproductive health care services. The term "access to" refers to an obligation on the part of the state to create an enabling environment by providing the conditions for the individual to gain access to health care services. The right of access to health care services accordingly refers to an obligation on the state to make the necessary health care services accessible and available to all individuals on an equal basis.

The first question that should be considered is whether the proposed regulations do, in fact create an enabling environment for individual's to gain access to health care services.

1. State notification and an enabling environment for access to health care services

As the regulations propose an anonymous system of notification to the state, it is unlikely to have any significant impact on the state's obligation to create an enabling environment for individuals to access health care services.

In light of the breach of the patient's right to privacy and confidentiality and the potentially damaging effects of notification to immediate family members and care-givers, it is likely that many patient's, fearing such notification, will self-exclude themselves from the health system. Self-exclusion is also likely to occur because of the absence of any benefit (such as treatment and follow-up care) to the AIDS diagnosed person. Hence, contrary to creating an enabling environment for individuals to gain access to health care services, it is more likely that notification to immediate family members and care-givers will create an unsafe, insecure, threatening and ultimately disabling environment for individuals to access health care services. In support of this contention, UNAIDS and the WHO have noted:

It is suggested that the term "health care services" as provided for in Section 27(1)(a) of the Constitution refers to those health services that are necessary to ensure a state of complete physical, mental and social well-being. The definition would include services aimed at preventing, diagnosing, alleviating, curing, healing and treating conditions that threaten or compromise an individual's state of physical, mental or social well-being.

It has been argued that notification to immediate family members, care-givers, and persons preparing the body in the case of an AIDS death is largely for preventative purposes. The provision seeks to ensure that such persons are informed of the potential dangers of transmission and are able to take precautions to guard against the infection. However, the value of notification as a means of prevention in this regard is questionable for the following reasons:

1. As the regulations require notification upon AIDS diagnosis, it is unlikely to serve much of a preventative purpose to partners of the diagnosed person. Instead, it is more likely that partners of the diagnosed person have already been infected, as transmission can occur at any time after a partner has contracted the HIV virus.
2. The value of notification to immediate family relatives and care-givers is largely questionable as AIDS is not casually transmittable. In fact, UNAIDS and WHO have noted that although such disclosure may be effective in the case of diseases which are contagious by casual contact, they are likely to be ineffective with regard to HIV/AIDS since HIV is not casually transmitted.
3. In regard to notification of an AIDS death, it is suggested that a principle of universal precautions (as is applied to health care professionals in general) is applied to the persons preparing the body in the case of any death. This is dealt with in Regulation No. 2438 dated 30 October 1987.

Secondly, diagnosis, which is a fundamental aspect of the right of access to health care services, is unlikely to occur in the context of HIV and AIDS, should the regulations be adopted. Contrary to people wanting to be aware of their HIV status through testing and diagnosis, it is unlikely that the individual will want to be tested and diagnosed with AIDS when threatened with notification to immediate family members, care-givers and persons preparing the body in the case of an AIDS death.

Thirdly, notification would not necessarily result in any treatment or follow-up care to the AIDS diagnosed person. Instead, notification will divert resources away from treatment and into an ineffective prevention strategy. Treatment, which constitutes a critical aspect of the right of access to health care services will therefore be sacrificed on account of an ineffective prevention strategy relating to notification.

Section 27(2) of the Constitution obliges the State to take reasonable legislative and other measures, within its available resources, to progressively realise the right. Whilst the ultimate goal is to provide health care services to everyone, due to resource constraints, the Constitution allows for this goal to be realised over a period of time and on a progressive basis. The UN Committee on Economic and Social Rights has interpreted the phrase "progressive realisation" to mean an obligation on the part of the state "to move as effectively and expeditiously as possible to securing its ultimate goal."

Section 27(2) of the Constitution also makes the realisation of the right subject to the availability of resources. It obliges the state to take reasonable legislative and other measures within its available resources to achieve the progressive realisation of the right. The qualifier refers to the fact that even where available resources are demonstrably inadequate, the state should still strive to ensure the widest possible enjoyment of the right under the prevailing resource constraints. In realising the right of access to health care services, it is vital that the available resources are effectively and equitably utilised.

A further question to be addressed is whether notification allows for the effective and equitable use of limited resources. The value of notification to both the state as well as care-givers and immediate family members, within a context of limited resources will accordingly be examined.

It has been argued that notification is required to provide data to track the epidemic, prioritise interventions and evaluate the epidemic. The critical question is whether acquiring data through notification warrants the use of scarce resources.

Firstly, it should be noted that notification is an extremely expensive way of acquiring data. Secondly, in spite of the enormous costs, the information obtained through notification is unlikely to reflect an accurate picture of the reality for a number of reasons. As there is no patient identification system, notification in regard to a particular patient can occur more than once by several different health professionals. Given the initial denial experienced by a patient on diagnosis, it is likely that people will access numerous other health care facilities in an attempt to confirm their diagnosis. In addition, the data on notifiable diseases are often inaccurate due to limited co-operation from practitioners. Currently, many practitioners are either not sending in data or inaccurately filling in forms on other notifiable diseases as has been the case with tuberculosis. These factors are likely to result in either overcounting or undercounting, thereby reflecting fundamental inaccuracies in regard to the prevalence of AIDS.

Thirdly, notification will take place primarily through the public health system. As shown below, notification will primarily target women who have AIDS as they constitute the majority of the people accessing the public health care system. Unlike members of the broader population who may exclude themselves from the public health system on account of notification procedures, women are often forced to access the health system for reasons associated with pregnancy. Although the regulations are intended to apply to all persons diagnosed with AIDS, due to potential self-exclusion of the broader population, the data acquired through the current notification provisions are likely to yield similar results to the National HIV Surveillance Programme, but at a significantly higher cost.

These short-comings of state notification as a means of acquiring accurate data raise serious questions as to whether state notification does, in fact constitute the most effective and efficient use of available resources.

2. Notification to immediate family members and care-givers and resource availability

A further argument advanced by the Department of Health in support of the regulations is to stop the epidemic and ensure partner notification. However, the wording of the regulations makes clear that it extends beyond partner notification to all immediate family members and persons giving care to the person with AIDS. The broad wording of this provision gives rise to certain important questions regarding the resources and person power required for its implementation.

The proper implementation of this provision will largely depend on the co-operation of the patient and whether the patient is willing to disclose who the immediate family members and care-givers are and their contact details. There is likely to be high resistance by AIDS infected persons to making such disclosure due to its potentially damaging consequences.

Even if disclosure was made by the AIDS infected person, the implementation of the disclosure provisions have phenomenal cost implications in a severely cash-strapped health system. It places the additional burden on the health care professional to contact the relevant persons, inform them of the person's AIDS status, provide pre and post counselling, HIV testing, as well as follow-up care. Precious time and limited resources would be used for these purposes, thereby producing further constraints on an already stretched health system. This burden must further be assessed in terms of the large extent to which its success is dependent on the co-operation of the diagnosed person and the limitations of such disclosure as a preventative strategy.

Furthermore, the regulations make it mandatory for health care professionals to notify immediate family members and care-givers. This could potentially expose health care professionals to claims of civil liability from immediate family members and care-givers of AIDS diagnosed persons, should they fail to notify the relevant persons. Such claims of civil liability will further divert resources away from health care service delivery and would undeniably constitute an inefficient use of available resources.

On account of these short-comings and the enormous resources associated with notification to immediate family members and care-givers, it is unlikely to constitute an efficient and effective use of available resources.

As has been noted, Section 27(2) of the Constitution obliges the state to take "reasonable legislative and other measures." The question of reasonableness must be determined in relation to the ultimate goal of providing access to health care services to everyone within the available resources of the state.

A further question that needs to be addressed is whether the regulations constitute a "reasonable measure" on the part of the state. The UN Committee on Economic, Social and Cultural Rights has noted that the measures undertaken by the state must be "deliberate, concrete and targeted as clearly as possible" towards meeting the obligation of ensuring everyone the right of access to health care services. The reasonableness of notification to both the state as well as immediate family members, care-givers and persons preparing the body in the case of an AIDS death will accordingly be assessed.

It has been argued that notification is required to provide data to track the epidemic, prioritise interventions and evaluate. However, as has been noted, this is an extremely expensive mode of acquiring information that is often fraught with inaccuracies. Furthermore, the data acquired will reflect prevalence patterns of HIV 5-10 years ago and therefore be largely ineffective in prioritising future intervention strategies. Given the limited value of notification to the state as a means to collect accurate data as well as the extremely high costs thereof, it is submitted that notification does not constitute a "reasonable" measure on the part of the state.

Immediate family members and persons giving care to the AIDS diagnosed patient often constitute an important support structure to the person suffering from AIDS-related complications. Notification may threaten an important source of emotional, financial and other support for a person living with AIDS.

Furthermore, the regulations make such notification mandatory irrespective of its potentially harmful and violent consequences for the AIDS infected individual. This is particularly relevant given the low levels of societal acceptance of the epidemic.

Finally, the limited preventative role of notification to family relatives and care-givers, the enormous resources required for its implementation as well as the barriers it poses to gaining access to health care services support the contention that notification to immediate family members and care-givers does not constitute a reasonable measure on the part of the state.

3. Reasonableness of notification to persons preparing the body in the case of an AIDS death

It has been argued that notification to persons preparing the body in the case of an AIDS death constitutes a reasonable measure given its value in preventing transmission. Notification of an AIDS death will not necessarily ensure that the persons preparing the body are protected against infection as a person might be infected with AIDS but not necessarily die as a result of it.

Furthermore, the provision would require notification to undertakers who would not be bound by any duty of confidentiality that prevents them from disclosing such information to family members or members of the broader community. Such disclosure would be particularly problematic due to the absence of counselling or assistance in coming to terms with the AIDS death of a loved one. It is accordingly suggested that a principle of universal precautions be applied to all persons preparing a body in the case of any death.

The proposed regulations also raise questions regarding the AIDS diagnosed person's rights to privacy and confidentiality in respect of both state notification as well as notification to immediate family members, care-givers and persons preparing the body in the case of an AIDS death.

In terms of Section 14(d) of the Constitution "Everyone has the right to privacy, which includes the right not to have the privacy of their communications infringed." Hence, communications relating to AIDS diagnosis would clearly fall within the ambit of the section. The South African Medical and Dental Council's Ethical Guidelines further provide that the principles of confidentiality must be respected and adhered to in the context of any doctor-patient relationship.

As state reporting occurs anonymously and the Department further intends adopting guidelines to ensure confidentiality, it is unlikely that the AIDS diagnosed person's rights to privacy and confidentiality will be violated in the case of state reporting.

However, state reporting does potentially violate the privacy and confidentiality rights of previous/current sexual partners of the AIDS diagnosed person. Section 3(3) of the proposed regulations require "the provision of any available information concerning the probable place or source of infection." It is likely that this provision would require disclosure of the name and details of the AIDS diagnosed person's previous/current sexual partner's, thereby violating the latter persons rights to privacy and confidentiality.

2. Privacy and confidentiality with regard to notification to immediate family members, care-givers and persons preparing the body in the case of an AIDS death

The constitutionality of notification to immediate family members, care-givers and persons preparing the body in the case of an AIDS death must be assessed in the light of its infringement of the AIDS diagnosed person's rights to privacy and confidentiality. It has been argued that such violation of the rights to privacy and confidentiality are justified given the public health consequences of non disclosure. Such limitation of the right to privacy of the AIDS diagnosed person must accord with Section 36 of the Constitution which deals with the limitation of rights.

Given that the purpose of the limitation is to prevent further transmission and create an awareness of the AIDS epidemic, the importance of its purpose is severely undermined by the limited preventative value of notification in these instances, for reasons already noted.

In assessing the nature and extent of the limitation, it is clear that the AIDS diagnosed person's right to privacy are severely limited given the fact that the regulations include disclosure to immediate family members and care-givers. This is particularly problematic given the absence of a definition of immediate family members and the prevalence of fluid family forms in South Africa. The definition of immediate family members could accordingly be interpreted to include all family members living within a particular household, which could include extended family members and friends. Furthermore, as an AIDS diagnosed person might have multiple care-givers, in terms of the proposed regulations disclosure to all these care-givers would be necessary. Conversely, immediate family members and care-givers would not necessarily include the sexual partners of the AIDS diagnosed person, thereby further limiting its value as a preventative measure. Even if the terms "immediate family members" and "care-givers" were very narrowly interpreted, there is no duty of confidentiality imposed upon such family members and care-givers to preclude them from informing friends and other members of the community. The ripple effect of such disclosure must accordingly be borne in mind, particularly in the context of such low societal acceptance of the epidemic and its important consequences for the right to privacy of the AIDS diagnosed person.

Finally, Section 36(1)(e) of the Constitution requires that one of the factors to be taken into account is whether there are less restrictive means that can be adopted to achieve the purpose of the limitation. Hence, if the purpose of the limitation is to prevent further transmission and create an awareness of the epidemic, it is clear that in a context of exceedingly high rates of HIV/AIDS infection, low societal acceptance of the epidemic and scarce resources, there are less invasive means of achieving the purpose of the limitation. Less restrictive means would include education, information and awareness campaigns and universal precautions being adopted.

In view of the aforementioned, it is accordingly clear that notification as required in the proposed regulations constitutes a significant infringement of the AIDS diagnosed person's right to privacy. Furthermore, it is unlikely that such infringement can be justified in view of the purpose of the provision in relation to the extent of the limitation. In short, it is argued that there is no rational connection between the purpose of the limitation (i.e. data collection and prevention of HIV/AIDS) and its effectiveness.

4. Prevalence of HIV among women

In addition to the regulations violating the constitutional rights to privacy and access to health care services, they also potentially violate the right to equality due to their disproportionate effect on women. This disproportionate effect on women can be attributed to the following factors:

• women are more susceptible to HIV transmission due to biological factors;
• women are more susceptible to HIV transmission due to social factors;
• as women access the health system more than men do, they are more likely to be tested and diagnosed for HIV/AIDS due to their heightened social and biological susceptibility;
• the proposed regulations concerning notification of a patients AIDS status to immediate family members and care-givers will therefore affect women more than men.

Women in South Africa constitute a high-risk group for infection with HIV. The National HIV Surveillance Programme conducts annual surveys of women attending antenatal clinics of the public health services. The results of these surveys indicate that HIV infection in women has consistently and significantly increased over the years, rising from 0,76% in 1990 to 22,8% in 1998. The rate of in infection in teenage girls aged 15 to19 increased from 12.7% in 1997 to 21% in 1998, almost doubling in a year.

HIV infection is transmitted primarily heterosexually in sub-Saharan Africa. This seems to suggest an equal rate of infection in men and women. However, a number of community based studies from Africa have found a higher infection rate in women than in men, by approximately 1.4 times. Some of the reasons for the higher rate of HIV infection in women are sought in the differential rates of transmission between men and women and the higher rates of female sexual exposure to infected men.

In South Africa, women make up a significantly larger proportion of HIV cases than men do.

The results of the first population based HIV prevalence study in South Africa, conducted in the north-coast region of Kawzulu Natal in November and December 1990 show that HIV 1 was four times more common in women than in men. 1,6 % of women tested had HIV-1 infection compared to 0,4% of men.

An anonymous HIV seroprevalence survey conducted in June 1991 in the rural population of northern Kwazulu Natal revealed that women had a 3.2 fold higher prevalence of HIV 1 infection than men.

The fourth national HIV survey of women attending antenatal clinics in South Africa during October and November 1993 uses a male to female ratio of 0,73 to 1 in order to calculate the estimated number of HIV infected persons nationally. The same ratio is used in the 1994 and 1995 studies.

In South Africa, research has identified that significantly more women are infected with HIV than men. Some of the reasons for the high prevalence of HIV infection in women are discussed below.

It is generally accepted that male to female transmission of HIV infection is more likely to occur than female to male transmission. The results of studies vary. A study undertaken in nine European countries that focused on the efficiency of male to female transmission of infection confirmed that male to female transmission of HIV infection is twice as likely to occur than female to male transmission.

The South African Actuarial Reportback on AIDS in South Africa published in October 1995 quotes the probability of transmission of HIV by a man from an infected woman as 1:1000, i.e. that there is a risk of 1 in 1000 per sexual act. On the other hand, the probability of transmission of HIV by a woman from an infected man is 1:100, which is 10 times the risk of transmission for men. The report indicates that biologically women are far more likely to be infected by sexual exposure than men. The consequences of unprotected sex are therefore potentially serious and life threatening for women.

In light of current patterns of transmission, it will often be the case that a woman's partner is already infected and that she is infected by her partner. Women are a high risk group not so much because of their own behaviour but because of their partners/husband's behaviour, particularly where they are monogamous and their partner has multiple partners. Furthermore, in South Africa dry sex practices are common, with women often engaging in such practices because they are the preference of men. Research suggests that these practices could promote the spread of HIV as they may lead to physical trauma for women during sex, thereby increasing the risk of transmission.

On a social level, women's vulnerability stems from the fact that for millions of women and girls, their subordinate position in society, can make it difficult if not impossible for them to protect themselves from HIV. They often cannot insist on fidelity, demand condom use, or refuse to have sex with their partner, even when they suspect or know he is already infected himself. Furthermore they often lack the economic power to remove themselves from relationships that carry major risks of HIV infection. Violence is part of their dilemma. Women, fearful of getting beaten or thrown out, are unlikely to ask their partners to wear a condom, or question them about their fidelity.

In South Africa levels of domestic violence, rape and child abuse are extremely high. Studies on domestic violence have shown the following:

• 80% of violence that women suffer, they suffer in their homes at the hands of the men who supposedly love them.
• The Department of Justice estimates that one out of every four

South African women are survivors of domestic violence.

• 1 in every 4 South African women is assaulted by their boyfriend or husband every week.
• 1 in 6 women in South Africa is assaulted by her male partner.

Although the above statistics are shocking, one should bear in mind that incidence of domestic violence is notoriously under reported. The prevalence of such abuse is likely to be much higher than these statistics suggest.

South Africa has often been called the "rape capital" of the world by the popular press. In a recent study which claims to be one of the largest and most detailed body of evidence on sexual violence available in South Africa, the findings indicate the following:

• Nearly 60% of rapists are known to the women they rape.
• In 28% of cases, the rapist is a relative, and the act is perpetrated in the home.
• In a further 28% of cases, the rapist is a neighbour, date or acquaintance.
• In 43% of cases, the rapist is a stranger.
• Gang rape occurs in 0.09% of cases.
• 3 out of every 10 women had been subjected to some form of sexual violence in the last year.
• 1 in 4 of these women were raped repeatedly in the last year, usually by a family member.
• 77% of the respondents in the study indicated that sexual violence is common or very common in their communities.

It is not possible to analyse the incidence of transmission of HIV during rape or forced sex. However, "rape may increase the risk of HIV transmission compared to consensual sex for two reasons: trauma is more likely and sexually transmitted diseases that cause genital lesions may be more prevalent. In addition, STD's are often transmitted during rape - up to 20% of all penetrative rapes of women by men result in vaginitis and up to 5% result in cervitis."

These statistics reveal that women's status in society and sexual relations are such that:

1. women are unlikely to be able to negotiate safe sex practices, particularly in violent relationships;
2. women are forced to have sex; and
3. women are repeatedly raped in South Africa.

This places women at great risk for contracting HIV/AIDS.

Coping with the trauma of rape or forced sex is difficult enough. Acquiring the HIV infection as a consequence of sexual assault represents a significant additional trauma. Many women do not tell their partners or families that they have been raped, and that they are testing for HIV. They fear the stigma of resulting from rape as well as the further violence which might result from such disclosure. If AIDS becomes a notifiable disease, a rape survivor may be less inclined to have herself tested after being raped, for fear of being diagnosed with AIDS and having her immediate family members, which may include her partner, notified thereof. A rape survivor would therefore have to bear the burden not only of having been raped, but either

1. not knowing if her HIV status has changed as a result of the rape, or
2. testing for HIV/AIDS, and if she has AIDS, potentially having her partner notified thereof, despite the fact that she has chosen not to tell him that she had been raped.

With respect to the intersection between notification and domestic violence, statistics on domestic violence indicate a high incidence of partner abuse. Studies have shown that HIV infected women may resist partner notification because they fear domestic violence, emotional abuse, or abandonment. Many women, whose HIV/AIDS status becomes known to others, suffer direct violence at the hands of their partners, family or community. (The murder of AIDS activist Gugu Dlamini being a case in point). The link between domestic violence and partner notification has serious personal and public health implications and should therefore be considered carefully.

In other jurisdictions it has been argued that state laws pertaining to partner notification should prohibit disclosure to the partners of HIV-infected women, unless the patient is first assessed for the risk of domestic violence. Where risk of violence is indicated, the law should prohibit notification without the patient's consent, even where the women is unwilling to seek assistance from a shelter or other community sources. At a minimum, the law should also require that providers or public health personnel offer appropriate intervention. The proposed regulations require the immediate family of the AIDS patient to be notified, which could include the partner. This could potentially result in a high risk of violence for South African women.

Perinatal infection occurs in approximately 30 % of children born to HIV positive women. 20% of all new HIV infections in South Africa occur as a result of perinatal transmission. Transmission can occur during pregnancy, during labour and through breastfeeding.

HIV status should be known as early on in pregnancy as possible to maximise the benefits of early knowledge of HIV status. Knowledge of HIV status is relevant for decisions regarding termination of pregnancy, treatment of the pregnant women, medical interventions to reduce the possibility of maternal HIV transmission and decisions about whether to breastfeed.

If women fear notification, they will not agree to voluntary HIV testing when seeking antenatal care. As knowledge of HIV status is a prerequisite for any medical intervention to reduce the possibility of mother to child transmission of HIV, such interventions will not be utilised and possibilities of limiting perinatal transmission in South Africa will be diminished.

5. Notification and the right to equality

Section 9 of the Constitution of the Republic of South Africa guarantees everyone a right to equality. Section 9(3) provides that the state may not unfairly discriminate directly or indirectly against anyone on one or more grounds, including gender and sex. The Constitution expressly prohibits indirect discrimination. Although the proposed regulations apply equally to men and women and appear to be gender neutral, the discussion below illustrates the disproportionate impact of the proposed policy of notification of immediate family members and care-givers, on women.

Biologically, women are more susceptible to the transmission of HIV/AIDS than men. The marginalised social and economic status of women in South Africa means that they are not able to effectively protect themselves from transmission of HIV/AIDS in sexual relationships. Violence against women, endemic rape and social practices such as dry sex, place women further at risk of HIV transmission. Women as a group are therefore more at risk for transmission of HIV and developing AIDS. Women are vulnerable both biologically or in terms of their sex and socially as a gender for the transmission of HIV.

Generally, more women than men attend public health facilities. Women attend public health services for routine health care and particularly pre and ante natal care. Men are only likely to access the public health system in cases of trauma or once they are very ill. Because more women attend comprehensive clinics, they have greater access to HIV testing and are more likely to be tested in the public health system. Women often cannot self-exclude from the health care system as they require heath care services for reproductive health and pregnancy in particular. Self-exclusion places not only their own health and lives at risk, but those of their children.

For these reasons, the proposed regulations will have a disproportionate impact on women. Women are more susceptible to HIV transmission, to be tested for HIV, likely to have AIDS and for their family members and care-givers to be notified of their AIDS status. The pervasive discrimination against people who are HIV positive or have AIDS in South Africa means that notification of AIDS to immediate family members and care-givers may result in eviction from a home, further disclosure of HIV status, loss of a job, violence and even death. For women in particular, the potential consequence of partner notification in the context of a violent relationship, is escalated violence. Women are likely to disproportionately suffer harm in various forms as a result of notification. Women as a group will be perceived in communities as the carriers of HIV/AIDS.

As the potential risks of notification are so high for women, the adoption of the proposed regulations is likely to create a barrier to women being able access health care services, as discussed above. In the context of pregnancy, this is particularly important. Women need early knowledge of their HIV status in pregnancy in order to assist them with making decisions about their pregnancy and accessing medical assistance which may reduce the chances of peri-natal transmission.

These arguments all suggest that women will suffer a disproportionate disadvantage as a result of the regulations. The regulations indirectly discriminate against women, as in practice, they will be particularly burdened and potentially suffer harm as result of notification to immediate family members and care-givers of their AIDS status. The proposed regulations violate section 9(3) of the Constitution. They indirectly discrimination against women on the basis of both their sex and their gender.

Section 36 of the Constitution provides that the right to equality may only be limited to the extent that the limitation is reasonable and justifiable in an open and democratic society. In determining whether a limitation is reasonable and justifiable, the nature of the right, the importance and purpose of the limitation, the nature and extent of the limitation, the relation between the limitation and its purpose and less restrictive means to achieve the purpose need to be considered. Given that the purpose of the limitation is to prevent further transmission of HIV/AIDS and to create an awareness of the AIDS epidemic, the importance of the purpose of limitation is severely undermined through the limited preventative value of notification discussed above. As far as the nature and extent of the limitation are concerned, an AIDS diagnosed woman's right to equality is severely limited given the fact that the regulations provide for disclosure to immediate family members and care-givers, which may or may not include partners. This disclosure may result in significant harm and discrimination to the woman concerned. In addition, women as a group will be further perceived as the carriers of the AIDS epidemic and face further discrimination. Section 36(1)(e) of the Constitution requires that less restrictive means to achieve the purpose of the limitation be considered. It is clear that there are less restrictive means of achieving the purpose which is to prevent further transmission such as an effective education and public awareness campaign and general understanding of universal precautions. In regard to the potential domestic violence that particular women may face as a result of disclosure of their AIDS status to their partners, the policy does not include a screen for domestic violence.

The notification as required in the proposed regulations constitutes an infringement of an AIDS diagnosed woman's right to equality and an infringement of women as a group's right to equality. This infringement is particularly relevant given the fact that equality is one of the most fundamental founding values of Constitution. The infringement of this right cannot be justified in view of the purpose of the provision and in relation to the extent of the limitation.

Section 12(1)(c) of the Constitution provides that everyone has the right to freedom and security of the person, which includes the right to be free from all forms of violence from both public and private sources. The submission outlines the various forms of violence from both public and private sources which women may face as a result of notification to immediate family members and care-givers. In particular, we highlighted the domestic violence that may result from partner notification when partners are either immediate families or care-givers. The proposed regulations constitute an infringement of the right to freedom and security of the person. It is unlikely that such an infringement can be justified, in view of the purpose of the proposed regulations, the nature and extent of the limitation that it imposes upon the right and the fact that there are less restrictive means to achieve the purpose, as is outlined in the discussion concerning the limitation of the right to equality.

In light of the aforementioned constitutional arguments, the Women's Legal Centre and the Socio-Economic Rights Project at the Community Law Centre urge the Department of Health to abandon its draft regulations relating to notification of AIDS. Instead, the Department is urged to consider the following recommendations:

In view of the enormous financial costs of notification to the state as well as the inaccuracies of data collected through such notification, it is strongly recommended that the proposed regulations relating to state notification be jettisoned.

However, given the vital importance of data collection for the planning of future intervention strategies, the Department of Health is urged to investigate other options that would better achieve this purpose. In particular, the Department of Health is urged to consider the use of additional sentinel surveillance systems.

In light of the financial costs associated with mandatory notification to immediate family members and care-givers, its limited value as a preventative measure, its violation of the AIDS diagnosed person's human rights as well as its disproportionate impact on women, the Department of Health is strongly urged not to adopt this aspect of the regulations.

Instead, the Women's Legal Centre and the Socio-Economic Rights Project support:

• Counselling and encouragement to the HIV diagnosed person to disclose his/her HIV status to partners where there is a substantial risk of harm arising from non disclosure;
• Only in instances where the HIV diagnosed person refuses to make such disclosure, that the health care professional undertake non-consensual disclosure:

• where there is a substantial risk of harm; and
• after a risk assessment of domestic violence has occurred.

• Education, information and awareness strategies aimed at HIV prevention.

In view of the limited value of notification to persons preparing the body in the case of an AIDS death, as a preventative strategy as well as the potential breach of confidentiality as a result of disclosure to undertakers, the Department is strongly urged not to adopt this aspect of the regulations. Instead, a principle of universal precautions as is currently required by Regulations No. 2438/30 October 1987 is supported.

In the light of the compelling constitutional arguments against the proposed regulations, the Socio-Economic Rights Project at the Community Law Centre and the Women's Legal Centre urge the Department of Health to abandon the adoption of its proposed regulations. In recognition of the vital importance of data collection and HIV prevention, the Socio-Economic Rights Project and Women's Legal Centre further urge the Department to consider the recommendations provided in this submission.

Prepared by: Michelle O' Sullivan (Women's Legal Centre)

Fatima Essop (Women's Legal Centre)