LIVING WITH HIV/AIDS

1. Introduction

According to UNAIDS, an estimated 40-million people are HIV-positive worldwide and about 5-million of those live in South Africa (also see: Statistics Factsheet).

With over 10% of South Africa's population living with HIV/AIDS, it is one of the largest constituencies in the country and one which journalists come into contact with every day, whether they know it or not.

The rights and responsibilities of HIV-positive people have come under the media spotlight, especially through high-profile court cases involving antiretroviral treatment, discrimination in the workplace and the right to privacy and confidentiality.

This factsheet summarises the rights of people living with HIV/AIDS and how specific laws protect them. It also explores some of the responsibilities that people living with HIV/AIDS have, including disclosure to their sexual partners, practicing safer sex and living a healthy lifestyle.

The factsheet also looks at the factors that contributed to the development of the HIV/AIDS stigma and how the stigma manifests itself in the lives of HIV-positive people and through the media.

Finally it covers the role of home-based care and palliative care for people living with HIV/AIDS.

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2. Right to Privacy

Every person in South Africa has a right to privacy. People living with HIV/AIDS often invoke this right when dealing with issues around disclosing their HIV-positive status. HIV/AIDS is not a notifiable disease, and therefore, except in rare instances, HIV-positive people cannot be forced to disclose their HIV status to anyone.

John Hodgkiss/Perinatal HIV Research Unit (PHRU)

The only people who know the HIV status of a person after an HIV test are:

the health care worker who gives the results of the test and
the individual who took the test

The South African Medical Association (SAMA) recommends that health care workers do not disclose the HIV status of an individual to third parties (including family, sexual partners and employers) unless the patient has provided informed consent (i.e. know the consequences of their status being disclosed).

UN, WHO and SAMA guidelines do provide for "disclosure without consent" when a patient refuses to tell their partner that they are HIV-infected and there is a real risk of infection to an identifiable sexual partner.

SAMA recommends:

"Doctors may divulge information on the serostatus of a patient to third parties without the patient's consent only when all of the following circumstances exist:

An identifiable third party is at risk
The patient, after appropriate counselling, does not personally inform the third party
The doctor has informed the patient that he/she intends breaking confidentiality under the circumstances" (source)

A person who tests HIV-positive cannot be forced to disclose their HIV status in most situations. Some areas are covered below.

There is no law at present in South Africa forcing people to disclose their HIV status to their partner.

Battling the brutal stigma of HIV

Malena Amusa. Mail&Guardian.

Apr 25, 2005 – The current lawsuit in the Johannesburg High Court by three HIV-positive women against Independent Democrats leader Patricia de Lille and journalist Charlene Smith is uncovering more than just issues of privacy.

It is also highlighting South Africa's urgent need to normalise HIV in order to prevent a social backlash after a person discloses a positive status.

The three women are suing De Lille and Smith, as well as publisher New Africa Books, over the publication of their identities and HIV status in De Lille's biography, Patricia de Lille. They are claiming R200 000 each from both De Lille and Smith, and want their names to be removed from the book.

The women allegedly approached De Lille with complaints about an HIV/AIDS drugs trial in which they participated between 1999 and 2001.

Mark Heywood, of the AIDS Law Project, which is representing the three women, says the trial is indicative of how far South Africa still must go to end the stigmatisation and subsequent maltreatment of HIV-positive people, especially poor women, such as the plaintiffs.

"If you're a black woman living in a shack, in an informal settlement, your life [most likely] depends financially on abusive men. Your ability to disclose is fundamentally different than if you are a white judge," Heywood says, referring to Judge Edwin Cameron's disclosure of his HIV-positive status years ago. ... Read more.

A person who infects their sexual partner with HIV while knowing his/her HIV status could be charged with murder, attempted murder or assault under South African law. However, no person has ever been criminally convicted of intentionally passing on HIV in South Africa.

The Draft Sexual Offences Bill makes the intentional non-disclosure of HIV/AIDS by a person to their sexual partner a criminal offence. This section of the Bill is under scrutiny. Some critics say that if this section of the Bill is enacted, it will encourage people not to get HIV-tested as any potential prosecutor would not be able to prove prior knowledge of the perpetrator's HIV-status.

2.2 Disclosure to Families

People have a constitutional right to privacy and do not have to disclose their status to their families. Because HIV/AIDS is not a notifiable disease, there is no law requiring a health care worker to notify an HIV-positive person's family.

2.3 Disclosure to Employers

Employers cannot legally request a person's HIV status, or require that a person take an HIV test:

when applying for a job (unless the job is with the South African National
Defence Force, the National Intelligence Agency or the Secret Service)
while in their employment, unless the employer has permission from the Labour Court, or
when s/he takes sick leave, although a health care worker can state an illness on the health certificate (but not HIV status).

A person cannot be fired arbitrarily because they have HIV/AIDS, according to the Employment Equity Act.

2.4 Disclosure to Medical Aids

People do not have to take an HIV test to receive medical aid and you will do not have to pay a higher premium if they are HIV-positive, according to the Aids Law Project (HIV/AIDS Current Law and Policy: Privacy and Confidentiality).

2.5 Disclosure to Insurance Companies

Insurance companies usually ask for an HIV test. A person's HIV status is a "material fact" that can affect the insurance company's assessment of someone's risk
If a person refuses to do the test, which is his or her right, an insurance company might not offer that person cover
HIV-positive people usually have to pay higher premiums for their life insurance, or are subjected to an exclusion clause that limits the amount payable after an AIDS-related death. (Read more from the Aids Law Project)
Insurance companies have a duty to keep people's HIV-status confidential

2.6 Disclosure to Health Workers

Patients are not required to tell health care workers that they are HIV-positive even when under their care. Health workers following universal precautions have very little chance of being infected by HIV.

2.7 Disclosure to Sexual Assault Victims

A victim of rape or sexual assault will be able to request that the sexual offender be tested for HIV, according to the Compulsory HIV testing of Alleged Sexual Offenders Bill.

Only the victim and the offender have access to the results. The victim is not allowed to disclose the offender's HIV status and the HIV test is not admissible as evidence in criminal or civil proceedings.

2.8 Legal Recourse

If someone's HIV-status is revealed without their consent, that person can:

sue a person (including a health care worker) for civil damages
lay a complaint against a health care worker with the appropriate professional body, such as the Health Professions Council of
South Africa (HPCSA) or the South African Nursing Council (SANC)
take their employer to the Commission for
Conciliation, Mediation and Arbitration (CCMA) if they have been fired unfairly (e.g. on the basis of their HIV status)

For further information read:

HIV/AIDS Current Law and Policy: Privacy and Confidentiality

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3. Workplace Rights

There are various laws that protect individuals from discrimination in the workplace.

3.1 Laws

1. The SA Constitution (HTML)

The Bill of Rights says:

everyone has the right to fair labour practices
everyone has the right to equal treatment

2. The Labour Relations Act (LRA) ( WORD)

The Labour Relations Act prevents employees from being discriminated against because of a disability (which includes HIV/AIDS).

3. The Employment Equity Act (EEA) (HTML; PDF)

The Employment Equity Act specifically prohibits unfair discrimination of people at work on the grounds of their HIV status. It also prohibits employers from testing for HIV/AIDS in the workplace, unless permission is granted by the Labour Court.

4. The Occupational Health and Safety Act (HTML; WORD;) and Mine Health and Safety Act (HTML)

Employers are responsible for ensuring that their employees are not at risk of HIV-infection at work. Employers must provide rubber gloves and train staff to use universal precautions when dealing with blood.

5. Compensation for Occupational Injuries and Diseases Act (COIDA) ( WORD; PDF)

Employees have a right to compensation if they get infected with HIV in a workplace accident.

6. The Medical Schemes Act No 131 of 1998 and Regulations: Government Gazette 20556 (HTML)

The Medical Schemes Amendment Act of 1998 prohibits discrimination based on "state of health". People with HIV/AIDS are entitled to reasonable care with "minimum level benefits" including the treatment of opportunistic infections. The schemes do not have to provide antiretroviral drugs.

Also see: Black Sash/ETU Paralegal advice manual chapter on HIV-AIDS and the Law

3.2 Rights in the Workplace

The Employment Equity Act includes the Code of Good Practice on Key Aspects of HIV/AIDS and Employment which offers guidelines to employers to ensure that people who are HIV-positive are not discriminated against in the workplace.

What an employer cannot do
An employer cannot:	Relevant legislation
Test a person for HIV unless deemed justifiable by the Labour Court	Section 7(2) of the Employment Equity Act
Demand to know a person's HIV status when applying for a job, in their employment or when they take sick leave	Common law and Section 14 of the Constitution of South Africa Act, No. 108 of 1996
Disclose an employee's HIV status to anyone without consent	Common law and Section 14 of the Constitution of South Africa Act, No. 108 of 1996
Dismiss an employee arbitrarily for being HIV-positive	Section 187(1)(f) of the Labour Relations Act, No. 66 of 1995
Unfairly discriminate against an HIV-positive employee	Section 6(1) of the Employment Equity Act
Provide an unsafe workplace where the risk of occupational exposure to HIV is not minimised	Section 8(1) of the Occupational Health and Safety Act, No. 85 of 1993 and Section 2(1) and Section 5(1) of the Mine Health and Safety Act, No. 29 of 1996
Source: Code of Good Practice on Key Aspects of HIV/AIDS and Employment

3.3 Employment and the "Capacity to Work"

If an employee is unable to do their job properly because of their illness, they can be dismissed ( Section 188(1)(a)(i) of the Labour Relations Act, No. 66 of 1995).

An employer must follow guidelines when dismissing an employee because of their poor work performance.

3.4 Legal Recourse

A person can argue their case at the Bargaining Council or Commission for Conciliation, Mediation and Arbitration (CCMA) if they have been dismissed or discriminated against unfairly. Disputes can also be referred to the Labour Court.

Also see: For further information read: Black Sash/ETU. HIV/AIDS and the law (Chapter 8 of the Paralegal advice manual)

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4. Health Care Rights

4.1 Informed Consent

Anton Hamel/Perinatal HIV Research Unit (posed)

A person must give informed consent before being medically treated. This includes being tested for HIV or other infections.

In the testing for HIV context, informed consent implies "that the individual understands what the test is, why it is necessary and the benefits, risks, alternatives and possible social implications of the outcome." (SA National Department of Health. National Policy on Testing for HIV)

Exceptions

Health care workers do not have to seek consent in the following circumstances:

If the patient needs emergency medical treatment
If blood has been donated
If the patient is mentally ill (consent must be obtained from a next of kin)
If the (anonymous) blood sample is being used for health research (e.g. the antenatal studies)

(Source: Paralegal Advice)

Legal Recourse

If someone has tested or treated a person without their consent they can:

complain to the Health Professions Council of South Africa (HPSCSA)
sue the health care worker for invasion of privacy
lay a criminal charge of assault against the health care worker

4.2 Right to Health Care and Medical Treatment

The SA Constitution gives every person the right to access health care services, sufficient food and water and emergency medical treatment. [Section 27]

Section 25 of the Universal Declaration of Human Rights states: "Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including ... medical care and necessary social services."

The Health Professions Council of South Africa (HPCSA) guidelines, which are legally enforceable, say no health worker can:

refuse to treat someone because they have HIV
treat HIV-positive people differently to other patients (e.g. for fear of getting infected with HIV)

Every person has a right to treatment as set out in the SA National Department of Health's national guidelines.

An HIV-positive person who is refused treatment by a public hospital or clinic can report this to the SA National Department of Health or the Public Protector, or take their case to the High Court.

Also see: Black Sash/ETU. HIV/AIDS and the Law (Chapter 8 of the Paralegal Advice Manual), and AIDS Law Project.

HIV/AIDS Current Law and Policy: Privacy and Confidentiality

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5. Rights of Criminals / Victims of Crime

Alleged Rapists / Rapists

are not granted bail if the rapist allegedly committed the crime while "knowing that he has the acquired immune
deficiency syndrome or the human immunodeficiency virus", unless they can prove "exceptional circumstances". The victim of the rape can apply for this provision based on the Criminal Procedure Second Amendment Act (Act 85 of 1997)
who are first time offenders and HIV-positive are given higher minimum sentences (life) than those who are not HIV infected (10 years), unless there are "exceptional circumstances", according to the Criminal Law Amendment Act (Act 105 of 1997)
In both instances, proof is not needed that HIV transmission occurred

Prisoners

cannot be tested for HIV without their consent (case law)
have a right to adequate heath care including antiretroviral therapy

Also see: Adapted from: Information from: AIDS Law Project. AIDS and the Law in South Africa: an Overview

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6. Stigma and Discrimination

In South Africa, as in other parts of the world, a great many HIV-positive people suffer from the stigma of having HIV/AIDS.

Definitions

Stigma and discrimination are sometimes confused.

A stigma is a quality or attribute which "significantly discredits" an individual in the eyes of others.
Discrimination is associated with the behaviour of people who treat people differently because they belong to a group. Often people who discriminate against others, do so on the basis of stigmas attached to those groups.

Adapted from: Siyam'kela: HIV/AIDS Stigma Indicators

There are two types of stigma:

1. Enacted stigma. The actual experience of discrimination based on stigma. Examples include harassment, exclusion, ridicule and violence. For example, a person may be dismissed from their job because they have HIV/AIDS or ostracised by their family.

2. Internal stigma. The shame associated with the stigma, and the fear of being associated with the stigma and discriminated against. A person who believes they have HIV might not want to be tested or subsequently treated because of fear of other people's response to this. For e.g., an HIV-positive mother who is nursing her child might still breastfeed, despite the danger that she may transmit the virus to the child, to protect herself from being associated with HIV/AIDS.

Key Research

A joint project by POLICY Project SA, SA National Department of Health, Centre for the Study of Aids (CSA) and USAID developed a set of stigma indicators based on focus group discussions consultation with experts in the field.

The indicators show the different types of enacted (i.e. external) and internal stigma based on real life experiences in South Africa. (PLHWA = Person or People Living With HIV/AIDS).

External stigma	Real life experience
Avoidance People will: will not share objects with People Living with HIV/AIDS (PLWHA) spend less time with PLWHA after disclosure exclude PLWHA from social events physically distance themselves from PLWHA (i.e. do not want to touch PLWHA)	"You sit down [in church] and they all get up and go sit somewhere else." — Male person living with HIV/AIDS "Many a time I have had people shout at me, saying, "Don't come near me, I am scared of you." — Male person living with HIV/AIDS
Rejection Family and friends abandon PLWHA Community pressurises PLWHA to leave organisation or residence	"You experience it [rejection], especially at home. When you tell your family that you are [HIV] positive they start to chase you away. Like they did to me. They said that I must leave, and must stay away." — Male person living with HIV/AIDS
Moral judgement People will judge a PLWHA based on his/her behaviour that lead to their HIV status.	"If you contracted HIV/AIDS it must have been through sex. It must have been unlawful sex. Therefore you are a sinner and it's a punishment from God." — Faith leader
Stigma by association People associated with PLWHA (e.g. family, friends, HIV/AIDS field workers) are also stigmatised.	"Sometimes I wonder if people don't think we are all [HIV] positive because we work in this field." — HIV/AIDS co-ordinator
Unwillingness to invest in PLHAs People offer less training, promotion and responsibility to PLWHAs.	"Because obviously the minute you disclose you will lose everything. They won't bother training you anymore." - HIV/AIDS co-ordinator
Discrimination PLWHAs are denied services — financial, medical or other — because of their HIV positive status.	"When I go to the police to ask for help they tell me they are tired of HIV/AIDS. And the magistrate also said he doesn't accept cases of HIV/AIDS." - Female person living with HIV/AIDS
Abuse People verbally or physically abuse PLWHAs because of their status.	"When you go back to your man and disclose, tell him you are HIV-positive, he runs away or he beats you." - Female person living with HIV/AIDS
Internal stigma:	Real life experience
Self-exclusion from services and opportunities PLWHAs do not access support services or apply for jobs because of their fear of being exposed as HIV-positive.	"Even if there is an offer of a job, I would not apply. It is hard because you think that they will draw blood or look at your urine and see that something is wrong." — Male person living with HIV/AIDS
Perception of self PLWHAs have low self-esteem as a result of their HIV-positive status.	"First I apologised to the church and asked them to take me as I am. And I asked them to give me a second chance to prove myself." — Female person living with HIV/AIDS
Social withdrawal PLWHAs have fewer interactions with people who are HIV-negative and/or choose not to have intimate relationships.	"Although I've accepted the virus myself, the thing is I don't want anyone next to me." — Male person living with HIV/AIDS
Over-compensation PLWHAs believe they have to work harder or make more of an effort to prove themselves.	"For me, I would say that earlier I thought I was doing what I thought was godly. I was doing my best to serve God. But when I found out that I was [HIV] positive I said no, I think it was not enough." — Female person living with HIV/AIDS
Fear of disclosure PLWHAs do not disclose their status due to fear of stigmatisation.	"Some PLHAs just cannot find it in themselves to disclose because of the stigma. They just have so much to lose — the respect of their community and family. Their friends will reject them. So they live in silence. It is an enormous burden to be scared of stigma." — Female person living with HIV/AIDS

POLICY Project et al. Siyam'kela: HIV/AIDS Stigma Indicators — A tool for measuring the progress of HIV/AIDS stigma mitigation.

6.1 Factors Contributing to HIV/AIDS Stigma and Discrimination

Mob kills woman for telling the truth

Bareng-Batho Kortjaas & S'thembiso Msomi. Sunday Times.

Dec 27, 1998 – The brutal killing of an AIDS worker who was beaten to death after going public about being HIV-positive has unleashed a wave of outrage.

Health worker Gugu Dlamini, 36, of KwaMancinza, near Durban, died after being assaulted by a mob who accused her of degrading her neighbourhood by disclosing that she had the disease.

Health workers this week described her killing as "sheer stupidity" and "a barbaric act".

... Zandile Sibiya, a nurse, said Dlamini had been threatened repeatedly by other KwaMancinza residents who felt her openness about her affliction had given the area a bad reputation. ... Read more

1. HIV/AIDS initially associated with already stigmatised groups

When HIV/AIDS was first identified, it was initially suffered disproportionately by homosexuals, intravenous drug users and haemophiliacs — groups that already suffered existing intolerance, discrimination and sometimes moral condemnation. This association intensified the stigma of HIV/AIDS.

2. Moral attitudes and belief systems

Because HIV/AIDS is mainly transmitted through sexual intercourse, and sex and morality are deeply intertwined in many belief systems, the stigma of HIV/AIDS as a "punishment from God" for evil lifestyles has risen.

3. Ignorance

People who have a lack of knowledge of the nature of HIV and its transmission tend to discriminate against HIV-positive people as they are scared of "contamination", or just the pain of watching others fall sick and die. There is also a perception that PLWHAs have a debilitating disability that prevents them from being functioning members of society.

4. Self Interest

People who discriminate against HIV/AIDS sufferers see themselves as healthy and virtuous, free from the virus, in contrast to the "sickly and incapable" PLWHAs.

5. Role of the Media

General images of HIV/AIDS focus on "innocent victims" — AIDS orphans or small babies who contract HIV/AIDS — and either exclude or minimalise the suffering of the people who gained the virus through sex with multiple partners or drug abuse, for instance. This, combined with terms such as "AIDS sufferers" and "AIDS victims" reinforces images of helplessness and victimhood. (Also see: Ethics Factsheet)

Adapted from: AIDS Law Project.

Nature and Extent of Discrimination against PLWAs in South Africa.

6.2 Stigma and the Media

The media has a large role to play in the reinforcement or removal of stereotypes that reinforce the HIV/AIDS stigma.

Key Research

The SA media has generally learned to use non-stigmatising language. In a Policy Project analysis of media between January and March 2003, "two in three articles in the media scan were categorised as using neutral or stigma-reducing language."

However, the study also found:

HIV/AIDS was most often depicted as affecting people who were poor (31%
of articles), black (27%) or living in developing countries (18%)
Heterosexuality and homosexuality were represented almost equally in relation
to HIV/AIDS, even though nearly all sexual transmission of HIV in SA is heterosexual
Male PLHAs who spoke to the media generally spoke as activists (36% of
articles) or celebrities (18%), while female PLHAs were mostly mothers (44%) or orphans (25%)
In the newspaper articles, no white PLHA was ever used as a source of
information

By using sensational wording, stigmatising language and incorrect terminology, the media can reinforce the HIV/AIDS stigma.

Policy Project et al. Siyam'kela. Examining HIV/AIDS stigma in selected South African media. January — March 2003.

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7. Living Positively

People living with HIV/AIDS can manage their condition more effectively if they live positively using physical, emotional and spiritual support mechanisms that are aimed at maintaining a strong immune system.

People living with HIV/AIDS can stay healthy longer by:

Cleaning food properly
Eating a healthy, balanced diet
Taking immune-boosting herbs in moderation and according to instructions, for example African potato and garlic
Avoiding sugar, fried food and spicy food
Keeping weight up
Exercising
Staying warm
Drinking clean water
Taking supplements, such a multi-vitamins
Ensuring their doctor knows and can treat HIV and related illnesses, including Sexually Transmitted infections (STIs)
Getting immunisations
Stopping smoking and/or taking non-prescribed drugs
Limiting or ceasing alcohol intake
Getting enough sleep and relaxation time
Practicing safe sex
Seeking emotional and psychological support, e.g. counselling or support groups
Seeking spiritual support whether it be through faith-based organisations or alternative therapies, e.g. yoga or meditation
Becoming educated and informed about HIV
Thinking positively
Managing stress
Disclosing of status, if in a supportive environment or to a supportive person

None of the above are replacements for antiretroviral therapy, which should be considered when the CD4 count drops to below 200 or there is an AIDS-defining illness, but they can be used as strategies to stay healthy for longer.

It is important that people living with HIV/AIDS are at ease with their status. Often people who fear the HIV/AIDS stigma won't use existing support structures such as their medical insurance, counselling and their place of worship.

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8. Home-Based Care

In Africa, there has been a general shift in the model of care provided to people living with HIV/AIDS. An increasing amount of people are being referred to home-based care due to the pressure the HIV/AIDS pandemic has placed on public hospitals and clinics.

Fast Facts: Increase in Home-Based Care Budget

46% The SA Health Department increased its budget for home-based and community-based care for people living with HIV/AIDS from R94.5-million in 2002/2003 to R138-million in 2004/05

Source: Southafrica.info, 2005

According to the 2001 South African Guidelines on Home-Based Care and Community-Based Care, home-based care addresses several problems, including:

shortage of hospital beds
inadequate number of medical, nursing and allied health professionals in the public sector
lack of resources for treatment and drugs
hospitals that are crowded and staff who are over-stretched can result in an environment that is unsuitable for managing patients with terminal diseases
high costs of institutional care

Key Research

In 2001, research commissioned by the SA National Department of Health found:

628,000 admissions to public hospitals were for AIDS-related illnesses
the cost of hospitalising AIDS patients at public facilities was likely to be at least R3.6-billion, or 12.5% of the total public health budget for a financial year

Cited in: Department of Health. An Enhanced Response to HIV/AIDS and Tuberculosis in the Public Health Sector

Home-based care provides an alternative to institutionalised health care. Discharging patients into the care of a home care programme allows for a shorter stay at the hospital, making more beds available for other patients (who may need more urgent treatment) and reducing costs to the institution.

Home-based care can be used to:

treat and rehabilitate patients with HIV/AIDS
offer palliative care for AIDS patients that are nearing death

8.1 A Model of Home-Based Care

The need for home-based care for HIV/AIDS patients is usually in the last stages of HIV/AIDS after other treatment interventions have failed. Often, patients need palliative care during this time in order for them to prepare for death.

The Integrated Community and Home-Based Care (ICHC) model, which is used by several hospices in South Africa, illustrates the use of home-based care for patients in the last stages AIDS.

Community based caregivers are trained to support people with HIV/AIDS, including:

"distributing medication and vitamin supplements
teaching family members or neighbours how to care for the patient, including
how to give bed-baths, how to lift the patient, mouth care and other basic skills
cooking for the patient
providing food parcels and items of clothing where necessary
making arrangements to transport the patient to the hospital for medical exams,
physiotherapy or other services
educating the family and neighbours about HIV/AIDS
listening, supportive counselling, and providing human contact in the case of
isolated people." (Cadre, 2002. Integrated Community-based Home Care (ICHC) in South Africa)

By using home-based care, costs can be saved in the formal health care system.

According to Cadre,

The average hospital time for terminal patients has been reduced from two weeks to three-and-a-half days in Port Shepstone.
In KwaZulu-Natal it costs hospitals R650 per patient per day. The total cost per ICHC patient at the South Coast Hospice was R1 015 per annum in 2001/2002.

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