REPORTING HIV: best practice tips

Accurate and sensitive reporting is critical to telling the story of HIV effectively. Care needs to be taken to ensure that both the social experience and the complex science of HIV are clearly conveyed.

Inaccurate or insensitive reporting can have the unintended consequence of further stigmatising communities affected by HIV, including people with HIV.

Accurate and sensitive media reporting on HIV requires journalists to:

• Don’t confuse HIV and AIDS

• Avoid stereotyping

• Take care with language

• Respect confidentiality

• Take care with HIV data

• Understand the science of HIV

1. Don’t confuse HIV and AIDS

The distinction between HIV and AIDS is often misunderstood. HIV (human immunodeficiency virus) is the virus that can lead to the condition called AIDS (acquired immune deficiency syndrome).

Although these conditions are linked, the terms refer to specific and separate diagnosis and should not be used interchangeably.

The conflation of HIV and AIDS is partly a hangover from the early years of the epidemic, when people who contracted HIV often progressed quickly to an AIDS diagnosis, and had a poor life expectancy.

Many people living with HIV find the use of the term ‘AIDS’ stigmatising because it is often used pejoratively and does not reflect their experience.

HIV – Human Immunodeficiency Virus

A person who has acquired HIV is described as being ‘HIV-positive’, meaning that they have received a positive result from a blood test screening for HIV antibodies.

HIV can live in the body for years without causing immediate or obvious damage, although the virus is constantly replicating. Many people with HIV look and feel healthy and well. They may not even be aware that they are living with the virus.

People with HIV who opt for early treatment generally have a life expectancy similar to that of HIV-negative people and do not progress to AIDS.

AIDS – Acquired Immune Deficiency Syndrome

AIDS describes the most advanced stages of HIV infection. Someone who has an AIDS diagnosis has a syndrome characterised by a severely weakened immune system and typically has debilitating symptoms.

Due to the effectiveness of modern antiretroviral treatments, AIDS diagnoses are now rare in Australia.

2. Avoid stereotyping

Good media reporting should reflect that people living with HIV are a diverse population, and come from all walks of life.

The notion that HIV only affects people belonging to ‘high-risk groups’ is wrong and potentially damaging to public health measures aiming to educate the public about high-risk practices.

Everyone has a responsibility to minimise the risk of HIV transmission. It is important to avoid making value judgements about how people acquire HIV and instead focus on reporting on its impact. Value judgements may be made accidentally or implied through the use of stigmatising language, so take a look at our ‘Take care with language’ section for tips on how to avoid this.

3. Take care with language

Avoid language that is derogatory or that perpetuates myths or stereotypes about HIV, people who live with HIV, or communities most affected with HIV.

Don’t call me ‘VICTIM’

Do not inappropriately apply labels to people. Many people living with HIV dislike terms such as ‘victim’ and ‘sufferers’ because they are patronising and imply that HIV-positive people are powerless, with no control over their lives.

The term ‘innocent victims’ is often used to describe children with HIV, or people with medically-acquired HIV infection. This implies that people who have acquired HIV in other ways are guilty of some wrong-doing and deserve to be infected with HIV. Attributing blame in this way contributes to stigma and discrimination.

Language Dos and Don’ts

Journalists should avoid language that is derogatory or that perpetuates myths or stereotypes about HIV, people who live with HIV, or communities most affected with HIV.

Here’s a useful checklist of language dos and don’ts:

USE: PERSON LIVING WITH HIV, HIV-POSITIVE, HIV & AIDS

DON’T USE: AIDS IF THE INTENTION IS TO REFER TO HIV

AIDS is a syndrome encompassing a range of conditions that occur when a person’s immune system is seriously damaged by HIV infection. Someone who has HIV infection has antibodies to the virus but may not have developed any of the illnesses which constitute AIDS.

DON’T USE: AIDS VIRUS OR HIV VIRUS

There is no such thing as the AIDS virus. There is only JIV (Human Immunodeficiency Virus): the virus that can cause AIDS. The term ‘HIV Virus’ means ‘Human Immunodeficiency Virus virus’, which is tautology.

USE: PERSON LIVING WITH HIV, HIV-POSITIVE PERSON

DON’T USE: AIDS VICTIM, HIV SUFFERER OR AIDS SUFFERER

The words ‘victim’ and ‘sufferer’ are disempowering. Many people living with HIV dislike these terms because they are patronising and imply they are powerless, with no control over their lives. Use of the term ‘sufferer’ or ‘victim’ to refer to someone with HIV implies that the individual is at the mercy of the condition. People do not necessarily suffer because they have HIV. Use HIV-positive person or person living with HIV.

DON’T USE: AIDS PATIENT

Most of the time, a person living with HIV or AIDS is not in the role of patient. Use ‘patient’ (and not ‘AIDS patient”) only to describe someone who is in a medical setting in the context of the story.

DON’T USE: AIDS CARRIER

The term is highly stigmatising and offensive to many people living with HIV. It is also incorrect as the infective agent is HIV. A person cannot catch ‘AIDS’.

DON’T USE: AIDS-INFECTED

No one can be infected with AIDS because it is not an infectious agent. AIDS is a syndrome of opportunistic infections and diseases that can develop as immunosuppression deepens.

DON’T USE: AIDS TEST

There is no test for AIDS, only for HIV. Use HIV test or HIV antibody test.

DON’T USE: BODY FLUIDS

Confusion about the body fluids that transmit HIV is a cause of fear and misunderstanding about HIV, and continues to cause discrimination against people living with HIV and people in communities affected by HIV. There are only certain body fluids that contain HIV in sufficient concentration to be implicated in HIV transmission – blood, semen, re-ejaculate, vaginal fluids and breast milk. HIV cannot be transmitted through fluids such as saliva, sweat, tears or urine.

USE: SEX WORKER

DON’T USE: PROSTITUTE

Prostitute is a loaded and disparaging term and does not reflect the fact that sex work I a form of employment for sex workers, not a way of life.

USE: STREET-BASED SEX WORKER

DON’T USE: STREET WALKER

Again the term ‘street walker’ does not represent the employment aspect of sex work and is therefore derogatory and misleading.

USE: PEOPLE WHO INJECTS DRUGS, PEOPLE WHO USES DRUGS

DON’T USE: JUNKIE, DRUG ADDICT

Not all people who use injecting drugs are dependent and drug dependency is a medical condition – not in itself, a crime. Illicit drug use is only one part of an injecting drug user’s life. Terms such as ‘junkie’ rely on a stereotyped image that is not accurate, and often greatly misrepresents drug users’ varied lives.

USE: PERSON WITH AIDS, OR PERSONS WITH HIV

DON’T USE: FULL-BLOWN AIDS

This term is overly dramatic and also implies that there is such a thing as a partial case of AIDS. A person has AIDS or they do not.

USE: AFFECTED COMMUNITIES, HIGH RISK BEHAVIOUR

DON’T USE: HIGH-RISK GROUP

Using the term HIV ‘risk group’ implies that membership of a particular group rather than behaviour, is the significant factor in HIV transmission. The term may lull people who don’t identify with a particular group into a false sense of security. It is high-risk behaviours such as unprotected sex or unsafe injecting practices that can spread HIV, not ‘belonging’ to a high-risk group.

USE: RISK OF HIV INFECTION

DON’T USE: RISK OF AIDS

HIV is the virus, not AIDS. Use ‘risk of HIV infection’ or ‘risk of exposure to HIV’.

USE: PEOPLE WITH MEDICALLY-ACQUIRED HIV, CHILDREN WITH HIV

DON’T USE: INNOCENT VICTIMS

‘Innocent victims’ is frequently used to describe children with HIV, or people with medically-acquired HIV infection. The term implies that people who have acquired HIV in other ways are guilty of some wrong-doing and deserve to be infected with HIV. Attributing blame in this way contributes to stigma and discrimination.

USE: MALAYSIAN POPULATION, HIV-NEGATIVE POPLE, ALL MALAYSIANS

DON’T USE: GENERAL POPULATION

Don’t use ‘general population’ unless HIV-positive people are included in it. Otherwise the term implies that people in populations targeted for HIV prevention, education and care are not part of the general population.

4. Use accurate terminology

Journalists need to report HIV in a way that is accurate and easily understood. The science can seem complex to those unfamiliar with the jargon associated with HIV.

A basic understanding of HIV science and familiarity with commonly used terms will enable journalists to communicate key concepts effectively.

Understanding the science

Journalists need to report HIV in a way that is accurate and easily understood, yet the science can be complex to those unfamiliar with the commonly used terms.

Tips for reporting HIV science:

• Understanding the basic such as how HIV is transmitted, developments in HIV treatment and HIV prevention, the lifecycle of the virus and how it affects the body, and the difference between HIV and AIDS

• Use correct terminology (e.g., ‘antiretroviral treatment’, or ‘HIV medication’, rather than ‘AIDS drugs’)

• Familiarise yourself with key terms such as antiretroviral, CD4 count, viral load, post-exposure prophylaxis (PEP) and pre-exposure prophylaxis (PrEP)

• Consult with a subject matter expert, such as an expert body, to confirm your understanding of a topic or issue.

Ethics and principles for HIV reporting

The Media Alliance Code of Ethics sets out standards by which journalists can assess their reportage:

Respect for truth and the public’s right to information are fundamental principles of journalism. Journalists describe society to itself. They convey information, ideas and opinions, a privileged role. They search, disclose, record, question, entertain, suggest and remember. They inform citizens and animate democracy. They give a practical form to freedom of expression. Many journalists work in private enterprise, but all have these public responsibilities. They scrutinise power, but also exercise it, and should be accountable. Accountability engenders trust. Without trust, journalists do not fulfil their public responsibilities. Alliance members engaged in journalism commit themselves to:

• Honesty

• Fairness

• Independence

• Respects for the rights of others

The South African Media AIDS website includes a set of principles for reporting on HIV. These principles are equally applicable for journalists in Australia:

1. Accuracy is critical, since important personal and policy decisions may be influenced by media reports. Journalists should be particularly careful to get scientific and statistical information right. Facts should be painstakingly checked, using credible sources to interpret information, verify facts and make statistics and science accessible and relevant to wide audience. Sources should be named as often as possible. Stories should be written in context.

2. Misconceptions should be debunked, and any claims of cures and treatment should be reported with due care. Journalists should look at all stories critically.

3. Clarity means being prepared to discuss sex, cultural practices and other sensitive issues respectfully but openly. Care should be taken to ensure language, cultural norms and traditional practices relating to, for example, inheritance and sex are understood and accurately reported.

4. Balance means giving due weight to the story, and covering all aspects, including medical, social, political, economic, and other issues. Balance also means highlighting positive stories where appropriate, without underplaying the fact that HIV and AIDS is a serious crisis.

5. Journalists should hold all decision makers to account in their handling of the pandemic, from government to the pharmaceutical industry and advocacy groups. They should be engaged with, but not captive to, any interest group.

6. Journalist should ensure that the voices and images of people living with and affected by HIV and AIDS are heard and seen (with each person’s consent). The human face of the pandemic should be shown. They should take care that the voices heard are diverse, and include those of women and men, vulnerable and marginalised people.

7. Journalists should respect the rights of people with HIV and AIDS. Vulnerable people should be treated with particular care. Journalists should seek informed consent before intruding on anyone’s privacy. They should seek to understand the possible consequences for individuals who participate in their report, and to ensure those individuals are clear about the consequences. Only in cases of overwhelming public interest can somebody’s HIV status be reported against their wishes.

8. Particular care should be taken in dealing with children. They experience the most extreme consequences of the epidemic, and their rights to privacy should be afforded even greater protection. They should only be identified if the public interest is overwhelming, and then only if no harm to them is foreseeable and they and any parents or guardians have given informed consent. Children have the right to participate in decisions affecting their lives. They also have the right to be heard, and journalists should ensure that the particular concerns they face are covered.

9. Discrimination, prejudice and stigma are very harmful, and journalists should avoid fuelling them. Particular care should be taken not to use language or images that reinforce stereotype.