Wednesday, 12 August 2009

UNAIDS guidelines on terms to be used for HIV/AIDS patients

Summary of preferred terminology for use in HIV/AIDS reporting

Use the term that is most specific and appropriate in the context. Examples include people living with HIV, HIV prevalence, HIV prevention, HIV testing, HIV-related disease; AIDS diagnosis, children made vulnerable by AIDS, children orphaned by AIDS, the AIDS response, national AIDS programme, AIDS service
organization. Both HIV epidemic and AIDS epidemic are acceptable.

There is no “AIDS virus”. The virus associated with AIDS is called the Human Immunodeficiency Virus, or HIV. Please note: “virus” in the phrase “HIV virus” is redundant. Use HIV.

Avoid the term infected. No one can be infected with AIDS, because it is not an infectious agent. AIDS is a surveillance definition meaning a syndrome of opportunistic infections and diseases that can develop as immunosuppression deepens
along the continuum of HIV infection from primary infection to death. Use person living with HIV or HIV-positive person.

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

The word “victim” is disempowering. Use person living with HIV. Use the term AIDS only when referring to a person with a clinical AIDS diagnosis.

Use the term patient only when referring to a clinical setting. Use: patient with advanced HIV-related illness (or disease) or AIDS-related illness (or disease).

Use risk of HIV infection; risk of exposure to HIV.
Use key populations at higher risk (both key to the epidemic’s dynamics and key to the response). Key populations are distinct from vulnerable populations, which may be subject to societal pressures or social circumstances which may make them more vulnerable to exposure to infections, including HIV.
Use sex work or commercial sex or the sale of sexual services.
Use only in respect to juvenile prostitution; otherwise use sex worker.
Use injecting drug user. Drugs may be injected subcutaneously, intramuscularly or intravenously.
Use using non-sterile injecting equipment if referring to risk of HIV exposure; use using contaminated injecting equipment if the equipment is known to contain HIV or if HIV transmission has occurred.

Use response to AIDS. Use evidence-informed.
Use HIV prevalence. The word “rates” connotes the passage of time and should not be used in most instances.
Please spell out all abbreviations in full.

Background for commonly used terms and abbreviations

Prevention strategies: abstain from penetrative sexual intercourse (also used to indicate delay of sexual debut); be faithful (reduce the number of partners or have sexual relations with only one
partner); condomize (use male or female condoms consistently and correctly). ACQUIRED IMMUNODEFICIENCY SYNDROME (AIDS) Not…immune deficiency. . .

As a verb: write ‘advocate change’ (rather than advocate for change).

This term is often used to mean any person living with HIV. However, it is stigmatizing and offensive
to many people living with the virus. It is also incorrect, since the agent being carried is HIV not AIDS.

Although ‘the person died of AIDS’ is commonly said or written, actually people do not die of AIDS, they die of HIV-related or AIDS-related disease. The expression AIDS-related illness can be
used if a person has an AIDS diagnosis.

The terms AIDS response, HIV response, response to AIDS and response to HIV are often used interchangeably to mean the response to the epidemic.

Since AIDS is a syndrome, it is incorrect to refer to the virus as the “AIDS virus”. HIV (the human immunodeficiency virus) is what ultimately causes AIDS (acquired immunodeficiency syndrome).
In referring to the virus, write the full expression at first usage and then use HIV; avoid the term HIV virus (which is a tautology, i.e. it is saying the same thing twice).

Spell out in full, i.e. antiretroviral therapy or antiretroviral treatment. The term ART can be used if it clearly refers to a triple antiretroviral drug combination.

BEHAVIOUR CHANGE (NOT ‘Behavioural Change’)
There are a number of theories and models of human behaviour that guide health promotion and education efforts to encourage behaviour change, i.e. the adoption and maintenance of healthy

Alternative term for voluntary counselling and testing (VCT). All HIV testing must be carried out under conditions of the “three Cs”: i.e. that it be confidential, accompanied by counselling and
conducted only with informed consent.

Drug injecting equipment was “contaminated” if it caused infection, that is, the equipment contained HIV; “unclean”, “dirty” or “non-sterile” if it carried the risk of HIV exposure: that is, it may or may not have carried the virus.

The Joint United Nations Programme on HIV/AIDS (UNAIDS) has the following ten cosponsors, listed in the following order (according to UN rules): United Nations High Commissioner for Refugees (UNHCR) United Nations Children’s Fund (UNICEF) World Food Programme (WFP) United Nations Development Programme (UNDP) United Nations Population Fund (UNFPA) United Nations Office on Drugs and Crime (UNODC) International Labour Organization (ILO) United Nations Educational, Scientific and Cultural Organization (UNESCO) World Health Organization (WHO) World Bank

Country Response Information System. Developed by UNAIDS, CRIS provides partners in the global response to HIV with a user-friendly system consisting of an indicator database, a programmatic database, a research inventory database and other important information. The indicator database provides countries with a tool for reporting on national follow-up to the United
Nations General Assembly Special Session on HIV/AIDS (June 2001) Declaration of Commitment on HIV/AIDS. The country-level CRIS will be complemented by a Global Response Information Database (GRID), which will support strategic analysis, knowledge-based policy formulation and subsequent programming. At country and global levels a Research Inventory Database (RID) is also being developed.

Familiar terms used in some cultures may not be appropriate in other cultural contexts e.g. seasons of the year—avoid “fall” or “autumn” and prefer instead last quarter of the year or instead of summer prefer mid-year. Similarly remember that different cultures celebrate the New Year at different times and that seasons in the northern and southern hemispheres are opposite to each other.

AIDS is often referred to as a “deadly, incurable disease”, but this creates a lot of fear and only serves to increase stigma and discrimination. It has also been referred to as a “manageable, chronic illness, much like hypertension or diabetes”, but this may lead people to believe that it is not as serious as they thought. It is preferable to use the following description: AIDS, the acquired immunodeficiency syndrome, is a fatal disease caused by HIV, the human immunodeficiency virus. HIV destroys the body’s ability to fight off infection and disease, which can ultimately lead to death.
Currently, antiretroviral drugs slow down replication of the virus and can greatly enhance quality of life, but they do not eliminate HIV infection.

The term relates to the structural and social factors, such as poverty, gender, and human rights abuses that can increase people’s vulnerability to exposure to HIV. It is often reserved to describe underlying determinants.

In epidemiology, an epidemic is a disease that appears as new cases in a given human population (e.g. everyone in a given geographic area; a university, or similar population unit; or everyone of a certain age or sex, such as the children or women of a region) during a given period, at a rate that greatly exceeds what is “expected” based on recent experience. Defining an epidemic is subjective, depending in part on what is “expected”. An epidemic may be restricted to one locale (an outbreak), more general (an epidemic) or global (a pandemic). Common diseases that occur at a constant but relatively high rate in the population are said to be “endemic”. Widely known examples of epidemics include the plague of mediaeval Europe known as the Black Death, the influenza pandemic of 1918–1919, and the current HIV epidemic which is increasingly described as a pandemic (made up of distinct types of epidemics in areas across the globe).

Epidemiology is the branch of medical science that deals with the study of the incidence, distribution and determinants of patterns of a disease as well as its prevention in a population.

This term is preferred to evidence based in recognition of the fact that several elements may play a role in decision making, only one of which may be evidence; others may include cultural appropriateness, cost, feasibility and concerns about equity and so on.

Faith-based organization is the term preferred instead of e.g. church, synagogue, mosque or religious organization, as it is inclusive (non-judgmental about the validity of any expression of faith) and moves away from historical (and typically European) patterns of thought.

Referring to the pandemic, feminization is now often used by UNAIDS and others to indicate the increasing impact that it has on women. It is often linked to the idea that the number of women
infected has equalled, or surpassed, the figure for men or that women and girls are bearing the brunt of the epidemic in many settings.

Avoid using words such as “fight” and other combatant language e.g. struggle, battle, campaign or war, unless in a direct quotation. Alternatives include: response to; management of; measures against; initiative; action; efforts; and programme. One rationale for this is to avoid a transference being made from the fight against HIV to a fight against people living with HIV.

Write “men who have sex with men” unless individuals or groups specifically self-identify as
gay. The broader community of men and women and transsexuals should be described as lesbian, gay, bisexual and transgendered—the abbreviation LGBT is often used for such communities, but
UNAIDS’ general preference is to spell out all terms in full.

The term “sex” refers to biologically determined differences, whereas the term “gender” refers to differences in social roles and relations between men and women. Gender roles are learned through socialization and vary widely within and between cultures. Gender roles are also affected by age, class, race, ethnicity and religion, as well as by geographical, economic and political environments. Since many languages do not have the word gender, translators may have to consider other alternatives to distinguish between these concepts.

The Global Fund to Fight AIDS, Tuberculosis and Malaria, established in 2001, is an independent public-private partnership. Its purpose is to attract, manage and disburse additional resources to make a sustainable and significant contribution to mitigate the impact caused by HIV, tuberculosis and malaria in countries in need, while contributing to poverty reduction as part of the Millennium Development Goals. Since 2001, the Global Fund has attracted US$ 4.7 billion in financing through 2008. In September 2007, donors provided initial pledges to the Global Fund worth US$ 9.7 billion over three years. These pledges constitute the largest single financing exercise for health ever and they will allow the Global Fund to move towards annual commitments of US$ 6–8 billion by 2010.

An acronym for the “greater involvement of people living with HIV/AIDS”. In 1994, 42 countries prevailed upon the Paris AIDS Summit to include the Greater Involvement of People Living with
HIV/AIDS Principle (GIPA) in its final declaration.

UNAIDS does not use the term “high-risk group” because it implies that the risk is contained within the group whereas, in fact, all social groups are interrelated. It may also lull people who don’t identify with such groups into a false sense of security. As well it can increase stigma and discrimination. It is often more accurate to refer directly to “higher risk of HIV exposure”, “sex without a condom”, “unprotected sex”, or “using non-sterile injection equipment” rather than to generalize by saying “highrisk

Membership of groups does not place individuals at risk, behaviours may. In the case of married and cohabiting people, particularly women, it may be the risk behaviour of the sexual partner that places them in a “situation of risk”. There is a strong link between various kinds of mobility and heightened risk of HIV exposure, depending on the reason for mobility and the extent to which people are removed from their social context and norms. UNAIDS prefers the term “key populations” because it emphasizes that these populations, while being important to the dynamics of HIV transmission in a setting, are equally essential partners for an effective response to the epidemic.

This term is now infrequently used in favour of antiretroviral treatment or therapy (ART). It referred to treatment regimens recommended by leading HIV experts to aggressively suppress viral replication and slow the progress of HIV disease. The usual HAART regimen combines three or more different drugs such as two nucleoside reverse transcriptase inhibitors and a protease inhibitor, two nucleoside analogue reverse transcriptase inhibitors and a non-nucleoside reverse transcriptase inhibitor or other combinations. More recently, new drugs have been developed to prevent the virus from entering the cell. These treatment regimens have been shown to reduce the amount of virus so that it becomes undetectable in a patient’s blood.

The Heavily Indebted Poor Countries Initiative is a debt relief tool for increasing the funds that countries have available and for ensuring that they are channelled to core human development
priorities, such as basic health care. The HIPC initiative, created in 1996 by the World Bank and further enhanced in 1999, has already helped some of the poorest nations in the world to free up precious resources for human development that would otherwise have been spent on servicing debt.

Fully funded and implemented, the enhanced HIPC initiative has the potential to be an even more powerful tool to allow countries to devote more resources to combating infectious diseases.

Symptoms of HIV infection may occur both at the beginning of HIV infection and after immune compromise sets in, leading to AIDS. During the initial infection with HIV, when the virus comes
into contact with the mucosal surface, it finds susceptible target cells and moves to lymphoid tissue where massive production of the virus ensues. This leads to a burst of high-level viraemia (virus in the bloodstream) with wide dissemination of the virus. Some people may have flu-like symptoms at this stage but these are generally referred to as symptoms of primary infection rather than HIV-related disease. The resulting immune response to suppress the virus is only partially successful and some virus escapes and may remain undetectable, sequestered in reservoirs for months to years.

As crucial immune cells, called CD4+ T cells, are disabled and killed, their numbers progressively
decline. In this manner, HIV-related disease is characterized by a gradual deterioration of immune function. Eventually high viral turnover leads to destruction of the immune system, sometimes
referred to as advanced HIV infection, which leads to the manifestation of AIDS.

As distinct from HIV-positive (which can sometimes be a false positive test result, especially in infants up to 18 months of age), the term HIV-infected is usually used to indicate that evidence of
HIV has been found via a blood test.

Showing no evidence of infection with HIV (e.g. absence of antibodies against HIV) in a blood or oral fluid test. Synonymous with seronegative. An HIV-negative person can be infected if he or she is in the window period between HIV exposure and detection of antibodies.

Showing indications of infection with HIV (e.g. presence of antibodies against HIV) in a blood or oral fluid test. Synonymous with seropositive. Results may occasionally be false positive.

The virus that weakens the immune system, ultimately leading to AIDS. Since HIV means “human immunodeficiency virus”, it is redundant to refer to the HIV virus.

The retrovirus isolated and recognized as the etiologic (i.e. causing or contributing to the cause of a disease) agent of AIDS. HIV-1 is classified as a lentivirus in a subgroup of retroviruses. Most viruses
and all bacteria, plants and animals have genetic codes made up of DNA, which is transcribed into RNA to build specific proteins. The genetic material of a retrovirus such as HIV is the RNA itself. The viral RNA is reverse transcribed into DNA, which is then inserted into the host cell’s DNA preventing the host cell from carrying out its natural functions and turning it into an HIV factory.

A virus closely related to HIV-1 that has also been found to cause AIDS. It was first isolated in West Africa. Although HIV-1 and HIV-2 are similar in their viral structure, modes of transmission
and resulting opportunistic infections, they have differed in their geographical patterns of infection and in their propensity to progress to illness and death. Compared to HIV-1, HIV-2 is found primarily in West Africa and has a slower, less severe clinical course.

HIV incidence (sometimes referred to as cumulative incidence) is the number of new cases arising in a given period in a specified population. UNAIDS normally refers to the number of people (of
all ages) or children (0–14 years) who have become infected during the past year. In contrast HIV prevalence refers to the number of infections at a particular point in time (like a camera snapshot). In specific observational studies and prevention trials, the term incidence rate is used to describe incidence per hundred person years of observation.

This term is preferable to drug addicts or drug abusers, which are seen as derogatory terms and which often result in alienation rather than creating the trust and respect required when dealing with
those who inject drugs. UNAIDS does not use the term “intravenous drug users” because subcutaneous and intramuscular routes may be involved. It is preferable to spell out in full and not use the abbreviation. An acceptable alternate phrasing is people who inject drugs.

This term conveys “doing something to someone or something” and as such undermines the concept of participatory responses. Preferred terms include programming, programme, activities, initiatives, etc.

Eight goals developed at the Millennium Summit in September 2000. Goal 6 refers specifically to AIDS but attainment of several goals is being hampered by the HIV epidemic.

Established by UNAIDS, the Monitoring and Evaluation (M&E) Reference Group (MERG) has a broad membership of national, bilateral agency and independent evaluation expertise, enabling it to assist in the harmonization of monitoring and evaluation approaches among collaborating organizations
and in the development of effective monitoring and evaluation of the response to the epidemic.

Abbreviation for “men who have sex with men” or “males who have sex with males”. This term is useful as it includes not only men who self identify as gay or homosexual and have sex only with other men but also bisexual men, and heterosexual men who may, nonetheless at times have sex with other men.


Abbreviation for “mother-to-child transmission” (PMTCT is the abbreviation for “prevention of mother-to-child transmission”). Some countries prefer the term “parent-to-child transmission” to
avoid stigmatizing pregnant women and to encourage male involvement in HIV prevention.

Illnesses caused by various organisms, some of which usually do not cause disease in persons with healthy immune systems. Persons living with advanced HIV infection may have opportunistic
infections of the lungs, brain, eyes and other organs. Opportunistic illnesses common in persons diagnosed with AIDS include Pneumocystis carinii pneumonia, cryptosporidiosis, histoplasmosis, bacterial infections, other parasitic, viral and fungal infections; and some types of cancers. Tuberculosis
is the leading HIV-associated opportunistic infection in developing countries.

In the context of AIDS, it is preferable to say “children orphaned by AIDS” or “orphans and other children made vulnerable by AIDS”. Referring to these children as “AIDS orphans” not only stigmatizes them, but also labels them as HIV-positive, which they may not necessarily be. Identifying a human being by his/her medical condition alone also shows a lack of respect for the individual.

Contrary to traditional usage UNAIDS uses “orphan” to describe a child who has lost either one or
both parents.

A disease that spreads across an entire region, continent or the whole world. Preferred usage is to write “pandemic” when referring to global disease and to use “epidemic” when referring to country or regional level. For simplicity, UNAIDS often uses “epidemic”,

An agent causing disease.

Avoid the expression “people living with HIV and AIDS” and the abbreviation PLWHA. With reference to those living with HIV, it is preferable to avoid certain terms: AIDS patient should only
be used in a medical context (most of the time, a person with AIDS is not in the role of patient); the term AIDS victim or AIDS sufferer implies that the individual in question is powerless, with
no control over his or her life. It is preferable to use “people living with HIV” (PLHIV), since this reflects the fact that an infected person may continue to live well and productively for many years.
Referring to people living with HIV as innocent victims (which is often used to describe HIV-positive children or people who have acquired HIV medically) wrongly implies that people infected in
other ways are somehow deserving of punishment. It is preferable to use “people living with HIV”, or “children with HIV”.

Usually given as a percentage, HIV prevalence quantifies the proportion of individuals in a population who have HIV at a specific point in time. UNAIDS normally reports HIV prevalence among adults, aged 15–49 years. We do not write prevalence rates because a time period of observation is not involved. “Prevalence” is sufficient, e.g. the Caribbean region, with estimated adult HIV prevalence of 2.3% in 2003, is an area to focus on in the future”. HIV prevalence can also refer to the number of people living with HIV as in “by December 2007 an estimated 33.2 million people were living with HIV worldwide.

Use this term in respect to juvenile prostitution only. Otherwise for people of older ages use “commercial sex” “sex work” or “the sale of sexual services”.

Under certain circumstances, when an individual is seeking medical care, HIV testing may be offered. It may be diagnostic—as when a patient presents with symptoms that may be attributable to HIV or has an illness associated with HIV such as tuberculosis—or it may be a routine offer to an asymptomatic person. For example, HIV testing may be offered as part of the clinical evaluation of patients with sexually transmitted infections and pregnant women. HIV testing may be offered to all patients where HIV is prevalent. Regardless of the type of testing and the location of the offer,
All HIV testing should always be carried out under conditions respecting the three Cs—confidentiality, informed consent and counselling. Testing without counselling has little impact on behaviour and is a significant lost opportunity for assisting people to avoid acquiring or transmitting infection.

Avoid using the expressions “groups at risk” or “risk groups”. People with behaviours which may place them at higher risk of exposure to HIV do not necessarily identify themselves with any
particular group. Risk refers to risk of exposure to HIV which may be high as a result of specific behaviours or situations. Examples of the latter include risk in discordant couples unaware of their
serostatus and recipients of unscreened blood or blood products. Behaviours, not memberships, place individuals in situations in which they may be exposed to HIV. Some populations may be at
increased risk of exposure to HIV.

A compensatory increase in behaviours which can result in exposure to HIV brought on by reduced perception of personal risk e.g. uptake of a 50% effective preventive HIV vaccine might tend to encourage abandoning condom use.

Use by preference the term safer sex because the term safe sex may imply complete safety. Sex is 100% safe from HIV transmission when both partners know their HIV-negative serostatus and
neither partner is in the window period between HIV exposure and appearance of HIV antibodies detectable by the HIV test. In other circumstances, reduction in the numbers of sexual partners and
correct and consistent use of male or female condoms can reduce the risk of HIV transmission. The term safer sex more accurately reflects the idea that choices can be made and behaviours adopted to reduce or minimize risk.

As related to HIV infection, the proportion of persons who have serologic evidence of HIV infection, i.e. antibodies to HIV at any given time.

A generic term that refers to the presence/absence of antibodies in the blood. Often, the term refers to HIV antibody status.

Also called venereal disease (VD), an older public health term, or sexually transmitted disease (STD), terms that do not convey the concept of being asymptomatic in the same way that the term sexually transmitted infection does. Sexually transmitted infections are spread by the transfer of organisms from person to person during sexual contact. In addition to the “traditional” STIs (syphilis and gonorrhoea), the spectrum of STIs now includes HIV, which causes AIDS; Chlamydia trachomatis; human papilloma virus (HPV) which can cause cervical, penile or anal cancer; genital herpes; chancroid; genital mycoplasmas; hepatitis B; trichomoniasis; enteric infections; and ectoparasitic diseases (i.e.
diseases caused by organisms that live on the outside of the host’s body). The complexity and scope of sexually transmitted infections have increased dramatically since the 1980s; more than 20 diseasecausing organisms and syndromes are now recognized as belonging in this category.

“Commercial sex work” is considered a tautology, which is saying the same thing twice over in different words. Preferred terms are “sex work”, “commercial sex”, and “the sale of sexual services”.

The term “sex worker” is intended to be non-judgmental, focusing on the conditions under which sexual services are sold. Alternate formulations are: “women/men/people who sell sex”. Clients of
sex workers may then also be called “men/women/people who buy sex”. The term “commercial sex worker” is no longer used, primarily because it is considered to be saying something twice over in different words (i.e. a tautology).

When referring to injecting equipment UNAIDS does not use the word “sharing” in its publications. Instead, “use of contaminated injecting equipment” is preferred if referring to actual
HIV transmission and “use of non-sterile injecting equipment” if referring to risk of HIV exposure. This is because injecting drug users uncommonly “share” their needles in the usually understood
sense of the word—with the exception of sexual partners who inject together. In the absence of needle exchanges, people may use discarded needles (which are anonymous) or bargain away
drugs for a needle or are injected by professional injectors. They do not regard this as sharing.

Neither does “sharing” distinguish between needle borrowing and needle lending; this is important because (usually) different dynamics are at work. A person aware of his or her HIV-positive status may try to avoid lending, but may continue to borrow or vice versa. Also “sharing” has positive connotations in injecting drug use communities (and wider communities also), e.g. sharing a meal, which are not appropriate in writing about HIV risk.

As the traditional meaning of stigma is a mark or sign of disgrace or discredit, the correct term would be stigmatization and discrimination; however, “stigma and discrimination” has been accepted in everyday speech and writing, and may be treated as plural.

Continual analysis, interpretation and feedback of systematically collected data, generally using methods distinguished by their practicality, uniformity, and rapidity rather than by accuracy or

Sometimes used to indicate transmission of a pathogen such as HIV from mother to fetus or baby during pregnancy or birth but may be used to refer to the genetic transmission of traits. UNAIDS
primarily uses the term mother-to-child transmission.

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