HIV/AIDS Nofication Policy

Meeting report

HEALTH PORTFOLIO COMMITTEE
12 October 1999
HIV/AIDS NOTIFIABILITY: BRIEFING

Documents handed out:
1. Section 27(1)(a) of the Constitution
2. HIV/AIDS Notifiability provisional submission by Treatment Action Campaign
3. Fact Sheet on the Prevalence of HIV among Women and the Dept. of Health's proposed policy on notification of immediate family members & caregivers when a patient has AIDS (Appendix 1 - attached to end of minutes)
4. Implications of the Department of Health's Proposed Policy on Notification to Health Authorities, Immediate Family Members and Care-givers for the Right of Access to Health Care Services: Some Key Points (Appendix 2)
5. Submission in response to Draft Regulation, No. R485 Relating to AIDS Notification as contained in the Government Gazette, 23rd April 1999 by Women's Legal Centre and the Socio-Economic Rights Project, Community Law Centre (UWC) (Appendix 3)
6. AIDS Law Project submission

Briefing by:
Dr. Ashraf Grimwood
Zackie Achmat, Treatment Action Campaign
Mark Heywood, AIDS Law Project
Karishany Pillay, UWC
Michelle O'Sullivan, Women's Legal Center

SUMMARY
None of the presenters supported the regulations regarding notifiability of AIDS in their entirety. Dr. Grimwood opened the presentations by providing an overview of the regulations. Mr Achmat followed by saying that notifiability will not work, but that it is important to maintain the objective of the proposed regulations, which is one of openness. However, notifiability is not the way to approach the AIDS epidemic in South Africa, because of obstacles such as: public perceptions, resources, and lack of knowledge on the issue by community leaders. He suggested a plan that would focus on the general health care structure as it is and on increasing education efforts. Mr Heywood did not think that the regulations could actually achieve what they set out to. He questioned whether the proposal would actually do anything to assist in combating the epidemic. Ms Pillay and O'Sullivan discussed the legal and constitutional issues surrounding the current proposed regulations and how the regulations would impact women in South Africa.

MINUTES
Dr Ashraf Grimwood briefly went over what the regulations include. The regulations state that "person performing the diagnosis is required to inform the immediate family members and the persons who are giving care to the person in respect of whom the report is made and, in cases of AIDS death, the persons responsible for the preparation of the body." Dr Grimwood said that it is difficult to know if the person has been notified before, because South Africa does not have a central coding system. He agreed, however, that notifiability would be a good means of getting information about AIDS that could be used for planning purposes.

Mr Achmat from the Treatment Action Campaign discussed why he believes that the regulations on notifiability will not work. Notifiability is against people's constitutional rights to privacy and dignity. However, he agrees that openness is important. There are obstacles to openness and to the regulations.

One obstacle is that secrecy over HIV/AIDS status is prompted by the stigma present in South Africa. There is a myth that having HIV means an automatic death sentence. This myth undermines any hope of people going for voluntary testing or seeking treatment. This myth is fostered by the health care workers that are supposed to be treating them. Everyone always talks about how there is no cure. While this is true, there is treatment that can stabilized the disease and allow a person to live for long periods of time. Fostering this myth encourages social fatalism. There needs to be a radical change in this approach, and we must move to telling people that there is treatment available.

A second obstacle is the lack of resources. A voluntary testing campaign is long overdue, but nothing is being done in this regard. People are afraid, but yet there are no resources going to help. The cost of testing and the cost of training and hiring lab technicians should not be seen as insurmountable.

A third obstacle is the lack of knowledge in government and among the leaders in South Africa. Political commitment is NOT enough. Everyone needs to understand the context of the epidemic. It is impossible to encourage openness with the level of lack of knowledge of the disease.

A final obstacle is the amount of secrecy around issues of sex and sexuality in this country. This coupled with the level of gender inequality hampers openness.

Mr Achmat offered a plan. First, the general health care structure needs to be improved. The government should declare at least 20 health districts that need the most help. Focus on these clinics and make sure that they have running water and available drugs. Prevention needs to be targeted on a national scale. Also training and education of workers needs to be expedited. Specific training courses for health care workers need to be developed. It is essential that a knowledge base on HIV and AIDS is developed in this sphere. Further, there needs to be focus on anti-discrimination of people with HIV/AIDS status. We need to make sure that people are not kicked out of school or fired from their jobs because they are HIV positive. We need to send out clear messages of personal responsibility like: USE A CONDOM. There needs to be a campaign to integrate testing and counseling and treatment centers. We need to show people that there is a benefit to being tested, which is a major drawback of the current proposed regulations. Finally, there needs to be an unconditional withdraw of the court case against South Africa so that we can make the AIDS drugs available.

Mr Achmat then showed a short video. Some of the points raised in the video include:
· the regulations put the onus on the health care workers who are already overburdened
· it is true that the information obtained from notifiability could be used to track the epidemic
· the actual notification process is a problem, because so many people do not have phones. The question is how practical would it be to try and physically send people out to notify.
· Notification gives a false sense of security. Universal precautions need to be developed so that the health care workers assume that everyone that they treat has it.
· Notification can harm the people infected, because they will be ousted by family and discriminated against by society
· South Africa already has a problem with confidentially in health care clinics, because the people treating the patients are members of the same community.
· To escape from the stigma attached to having HIV/AIDS people will move and change there names, which defeats the purpose of the regulations.
· Need to develop a medical system and a financial system so the people with HIV know that they have some place to go for support and treatment.

Mark Heywood from the AIDS Law Project stated that he appreciated and supported the notion of notifiability, but he questioned whether or not the proposal would actually achieve the goals that it set out to. He offered that there are other ways to achieve the same result.

In critiquing the proposal he said that it does not mention partner notification. Also if you mandate that health care workers notify are you able to guarantee a sympathetic response to the person that has been found HIV positive? It is imperative to stress the importance of confidentiality and sympathy. The current environment surrounding HIV/AIDS is hard and hostile. Further, the proposal takes away peoples' right to confidentiality. The danger in moving forward with this proposal is that people with HIV/AIDS will delay going for testing, counseling or treatment, which goes against the purpose of the proposal. We need to get people to go for testing voluntarily. If the proposal is likely to deter people from doing this, then the proposal need to be reconsidered.

He also commented on making AIDS a notifiable disease. The proposal suggests that every time a health care worker makes an AIDS diagnosis that they must fill in a form that is sent to the Health Department to track the number of people infected. The problem with this is the Health Department does not act sufficiently on the information that they receive. We already have a large amount of information on the numbers of people infected, and yet there is still no planning around what to do. How will this proposal be any different?

The limited access to HIV testing must be changed. The current system is completely inadequate. Further absent a better testing system the numbers obtains through this proposal of notifiability could be completely wrong. There is no cost effectiveness if you are operating based on wrong numbers. The system of testing as well as date collecting must be changed. Further, the current lack of confidentiality is one reason for the lack of openness to HIV/AIDS. The assurance of confidentiality encourages disclosure, but the proposal has the opposite effect. This proposal could in fact increase the stigma attached to the disease. There also needs to be a better system of case reporting and using the information that is gathered. There needs to be quick feedback to hospitals and health care workers about the status of the epidemic.

One possible alternative could be sentinel HIV/AIDS surveillance. This could be more cost effective, but it is not the solution. We all need to have a common interest in openness. We need the government to lead the campaign and to foster openness and disclosure.

Karishany Pillay and Michele O'Sullivan presented on the legal and constitutional issues surrounding the current proposal and how it will impact women. Please see attached documents for their presentation.

Questions and answers:
What are the cost involved in implementing these regulations?
· No one from the panel had an estimate
· The cost has not yet been quantified

Ms Marshoff (ANC) stated that the proposal put another burden on people infected with HIV/AIDS, which was seclusion from the health care workers themselves. Has anyone looked at the moral and financial implications of the proposal in health care workers? What has been done in other countries?
· the attitudes of health care workers is a real problem. Many of them will not admit patients that are in stage 4 of the disease. There is a problem with management of these cases

Dr Robinwitz (IFP) made the suggestion that this debate was a waste of time, because it was just beating a dead horse - it seemed clear that no one really supported the regulations. It is important that people be tested, period. How do you enforce that someone tell their partner? We have to do something, the questions is what do we do?
· this debate may be a waste of time, but we should not abandon the objective underlying the regulations: openness and disclosure. It is true that this issue has been hanging unapprised for too long
· it is important not to lose sight of the critical message that we are all at risk of getting HIV if we are sexually active. Need to facilitate taking universal precautions, especially those who are in contact with blood or fluids on a regular basis.

Ms Twala asked if whether in developed countries there has been a shift in support of this type of notification.
· other countries have used notification, but some have found it to be unsuccessful

There was a question as to how we get the current figures? Are there any other models of notification that we can learn from?
· currently the figures can be received from the Department of Health

Ms Vos (IFP) asked that someone expand on the issue of public awareness campaigning.
· TV is a method of communicating to the public, but what messages are we sending on the issue? The message that we should be sending is that HIV is a treatable disease.

Dr Cwele (ANC) asked about he consequences of notification on domestic violence. Are we sure that women are the primary carriers of the disease? Will disclosure as suggested in the proposal help decrease the number of children born with HIV?
· it is a myth that women are the primary carriers
· need to have voluntary testing of couples and to increase counseling for couples who find out one is HIV positive
· taking universal precautions would decrease the spread of the disease in general
· women and children have trouble talking about things in a normal context. These regulations do not provide support or protection.

Appendix 1:
WOMEN'S LEGAL CENTRE

Fact Sheet on the Prevalence of HIV among Women and the Dept. of Health's proposed policy on notification of immediate family members & caregivers when a patient has AIDS

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 HIV/AIDS infection, the Regulations proposed by the Department of Health potentially violate the right to equality due to their possible effect on women which is indirectly discriminatory. The effect on women can be attributed to a number of factors:

Women are more susceptible to HIV transmission due to biological factors.
Women are more susceptible to HIV transmission due to social factors.
Because women access the health system more often 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 policy concerning notification of a patient's Aids' status to immediate family members and caregivers is therefore likely to affect more women than men.
Because of discrimination in society and the low social acceptance of HIV/Aids in South Africa, this will cause further harm, disadvantage and discrimination to women.

The facts concerning women and HIV:
The National HIV Surveillance Programme indicates that the rates of HIV infection in women has consistently and significantly increased over the years, rising from 0% to 0,76% in 1990 to 22,8% in 1998.
The rate of infection in teenage girls age 15 to 19 increased from 12,7% in 1997 to 21% in 1998, almost doubling in a year.
UN Aids estimates that in the age group 15 to 24 in Sub-Saharan Africa young women are twice as likely to become infected with HIV as young men.
It is generally accepted that during sexual intercourse, male to female transmission of HIV infection is far more likely to occur than female to male transmission. Because women are biologically more likely to be infected by sexual exposure, the consequences of unprotected sex are potentially serious and life-threatening.
The efficient rate of transmission increases where women have poor general health and lack access to health care services.
Poor literacy and social and geographic isolation also increase the risk.
Social practices also make women susceptible to HIV/Aids, this includes in dry sex practices, which can promote the spread of HIV as there may be to physical trauma for women during sex, increasing the risk of HIV transmission.
The subordinate position of women in society and the economic dependence on men makes it difficult if not impossible for them to protect themselves from HIV.
Women who are fearful of eviction from their homes or loss of their means of support are unlikely to insist on safe sex practices even if they have access to or can afford condoms.
Being a wife is often the greatest risk factor for women.
In addition, women are often the caregivers of sick families with HIV/Aids which further limits their economic opportunities.
Violence against women play the major role in women's' susceptibility to HIV transmission. Women who feared being beaten by their partners are unlikely to ask them to wear a condom or question them about their fidelity.
The high levels of rape and forced sex in South Africa mean that women are placed at risk for contracting HIV through non-consensual sex.
Once women are HIV positive or develop Aids, they are unlikely to be able to have access to or afford treatment for themselves or to prevent transmission to their children.

The potential consequences of notification for women who are raped:
Coping with the trauma of rape is difficult enough for women. Acquiring 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 they are testing for HIV. They fear the stigma resulting from rape as well as further violence which might result from such a disclosure.
If Aids becomes a notifiable disease, the 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 being raped, but either not knowing if the HIV status has changed as result of the rape or 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 has been raped.

Notification and domestic violence:
Studies have shown in developed countries where notification has been introduced that HIV infected women may resist partner notification because they fear domestic violence, emotional abuse or abandonment.
Many women, whose HIV/Aids status become known to others, suffer direct violence at the hands of their partners, family or community.
The link between domestic violence and partner notification has serious personal and public health implications and should therefore be considered carefully.
In other countries, it has been argued that laws dealing with partner notification should prohibit disclosure to the partners of HIV infected women, unless the patient is first assessed for the risk of domestic violence. When a risk of violence is indicated the law should prohibit notification without the patient's consent.
The proposed regulations require the immediate family of the Aids patient to be notified, this may or may not include the partner.

Mother to child transmission of HIV:
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 breast-feeding.
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 concerning termination of pregnancy, treatment of the pregnant women, pregnant medical intervention 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.

Notification and the right to equality:
Section 9 of the Constitution of the Republic of South Africa guarantees everyone a right to equality, which provides that the State may not unfairly discriminate directly or indirectly against anyone on one or more grounds, including gender and sex.

Although the regulations proposed by the Department of Health apply equally to men and women and appear to be gender neutral, the policy is likely to disproportionately impact negatively on women, for a number of reasons:

Biologically, women are more susceptible to the transmission of HIV/Aids than men and 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 the transmission of HIV and developing Aids.
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 likely to access the public health system in cases of trauma or once they are very ill. Women often cannot self-exclude from the healthcare system that they require healthcare services for reproductive health and pregnancy in particular.
For these reasons, the proposed regulations have a disproportionate impact on women. Women are more susceptible to HIV-transmission, to be tested for HIV/AIDS and for their family members and caregivers 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 caregivers may result in eviction from a home, further disclosure of HIV status, loss of a job, violence and even death.
Women as a group are already 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 regulation is likely to create a barrier to access to health care services for women, placing women at a further disadvantage.

For this reason, we propose that:
The Regulations as proposed are abandoned.
The State continues to strive to achieve the objectives which underlie the proposals, namely:
· To provide data to track the epidemic, prioritise interventions and evaluate the epidemic.
· To stop the spread of the epidemic.
· To ensure greater public visibility of the epidemic.

Instead, the Women's Legal Centre supports:
Counselling and encouragement to the HIV diagnosed person to disclose his/her HIV status to sexual 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.
The use of additional sentinel sites to test for HIV/AIDS and track the epidemic.

Appendix 2:
The Implications of the Department of Health's Proposed Policy on Notification to Health Authorities, Immediate Family Members and
Care-givers for the Right of Access to Health Care Services:
Some Key Points

1.) Introduction
Although we welcome the Department of Health's commitment to preventing HIV transmission and addressing the extremely high rates of HIV/AIDS infection, its proposed regulations potentially violate the right of access to health care services as provided for in Section 27(1)(a) of the Constitution. Section 27 of the Constitution provides as follows:

· Everyone has the right to have access to - (a) health care services, including reproductive health care; [(b) sufficient food and water; and (c) social security, including, if they are unable to support themselves and their dependants, appropriate social assistance.]
· The state must take reasonable legislative and other measures, within its available resources, to achieve the progressive realisation of each of these rights.
· No one may be refused emergency medical treatment.

This document provides a brief overview of the implications of the proposed regulations on the right of access to health care services. For more detail, please refer to the joint submission of the Socio-Economic Rights Project, Community Law Centre and the Women's Legal Centre.

2.) Notification and "access" to health care services
The right of "access to" health care services in Section 27(1)(a) refers to an obligation on the part of the State to create an enabling environment by providing the necessary conditions for individuals to gain access to health care services.

State notification as proposed by the regulations is unlikely to have any significant impact on the State's obligation to create an enabling environment for individuals to access health care services, as it will occur through a system of anonymous reporting.

However, the State will clearly be failing to create an enabling environment for individuals to access health care services through its proposed notification to immediate family members and care-givers. People are likely to exclude themselves from the health system in fear of notification. 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. Notification to immediate family members and care-givers is more likely to create an unsafe, insecure, threatening and ultimately disabling environment for individuals to access health care services.

3.) Notification and "health care services"
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 clearly include prevention, diagnosis and treatment necessary for a person's well-being.

The proposed regulations are unlikely to prevent the spread of AIDS for the following reasons:
· As the regulations require notification upon AIDS diagnosis, it is more likely that partners of the diagnosed person have already been infected.
· The value of notification to immediate family members and care-givers is largely questionable as AIDS is not casually transmittable.

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. For fear of notification, people will not want to be tested and diagnosed and therefore not present themselves at health care facilities for these purposes.

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.

4.) Notification and resource availability
Section 27(2) makes the right of access to health care services subject to resource availability. In realising the right of access to health care services, it is vital that the available resources are effectively and equitably utilised. It is questionable as to whether notification does, indeed ensure that resources are effectively and equitably utilised.

State notification and resource availability
Notification to the State is supposedly required to provide data to track the epidemic, prioritise interventions and evaluate the epidemic. It is suggested that acquiring data through notification does not warrant the use of scarce resources because:
· Notification is an extremely expensive way of acquiring data.
· In spite of the enormous costs, the information obtained through notification is unlikely to reflect an accurate picture of the reality. For example, as there is no patient identification system, notification in regard to a particular patient can occur more than once by several different health professionals.
· In addition, the data on notifiable diseases are often inaccurate due to limited co-operation from medical practitioners.
· The data acquired through the proposed regulations are likely to yield similar results to the National HIV Surveillance Programme, but at a significantly higher cost.

Notification to immediate family members and care-givers and resource availability
Notification to immediate family members and care-givers 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 test counselling, HIV testing, as well as follow-up care. Extensive resources as well as co-operation from the diagnosed person are therefore required. Furthermore, this form of notification 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.

5.) Notification and "reasonable" legislative and other measures
As has been noted, Section 27(2) of the Constitution obliges the State to take "reasonable legislative and other measures." Given the limited value of notification to the State as a means of collecting accurate data as well as the extremely high costs thereof, it is submitted that notification to the State 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 to immediate family members and care-givers may therefore threaten an important source of emotional, financial and other support for a person living with AIDS. In addition, its limited preventative value coupled by its potentially violent consequences further support the contention that notification to immediate family members and care-givers does not constitute a reasonable measure on the part of the State.

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 proposed regulations 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.

6.) Notification and the rights to privacy and confidentiality
The proposed regulations also potentially violate the right to privacy as provided for in Section 14 of the Constitution.

As State reporting occurs anonymously, it is unlikely to affect the AIDS diagnosed person's rights to privacy and confidentiality. However, State reporting does potentially violate the privacy and confidentiality rights of previous/current sexual partners of the AIDS diagnosed person as 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.

In the case of reporting to immediate family members and care-givers, the AIDS diagnosed person's rights to privacy and confidentiality will clearly be violated. It is further unlikely that this can be justified in view of the limited preventive role and the severe limitation of the AIDS diagnosed person's privacy rights.

For this reason, we propose that:

· The Regulations as proposed are abandoned.
· The State continues to strive to achieve the objectives which underlie the proposals, namely: to provide data to track the epidemic, prioritise interventions and evaluate the epidemic; to stop the spread of the epidemic; to ensure greater public visibility of the epidemic.

Instead, the Socio-Economic Rights Project, Community Law Centre (UWC) supports:
· Counselling and encouragement to the HIV diagnosed person to disclose his/her HIV status to sexual 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.
· The use of additional sentinel sites to test for HIV/AIDS and track the epidemic.

This overview is based on part of a submission entitled: "Submission in response to Draft Regulation R 485 relating to AIDS notification as contained in the Government Gazette dated 23^rd April 1999" prepared by the Socio-Economic Rights Project, Community Law Centre (UWC) and Women's Legal Centre.