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What’s in a name?

According to Rev. Fr. JP Mokgethi-Heath, “we now live in the era were HIV does not need to equal AIDS, and does not need to cause death.” And so he is calling for realigning of minds, watching of tongues, and changing of speech patterns to help reduce stigma by using affirming, inclusive, positive and, above all, correct terminology about HIV and those who live and work with it.

In the comedy version of Robin Hood, Men in Tights, at the end of the movie, King Richard Lionheart is judging the evil Prince John. King Richard says to him, because of what you have done in Nottingham, from now on we will call a toilet THE JOHN. This light play on words is a good illustration of how certain names or words can evoke negative responses.

I’m not writing about toilets though. I’m writing about a three letter acronym which holds its own connotations: HIV.

When first a syndrome was identified around this new and unidentified “thing” that was decreasing people’s immunity, doctors had no idea what caused it. The first medical paper written spoke of six homosexual men in San Francisco who had developed this immune deficiency, so it was labeled GRID – Gay Related Immune Deficiency. It was however soon clear that it was not only gay men who were developing this syndrome, so it was renamed AIDS – Acquired Immune Deficiency Syndrome. Still, we did not know what caused AIDS. But one thing we were sure of was that AIDS=death.

The death language infiltrated everything: it was emphasized to promote fear and frighten people into prevention, it was security alerts about traveling to certain countries because they had AIDS. The rally cry was AIDS, and the first responses were a call from judgment to pity. “Feel sorry for these poor dying masses, try and ease their pain”.

In 1984, just months a few years after AIDS was named, the cause was found: it was a virus, the Human Immunodeficiency Virus (HIV). But there was no treatment, and there was no cure. Whether you spoke about AIDS or HIV did not matter, because it was assumed that as soon as you got HIV you had started the downward spiral to AIDS and death. We came to talk about HIV/AIDS, because they were essentially two sides of the same coin. We referred to people who had this infection as PLHA – People with HIV/AIDS. In countries like America and Australia, many young men diagnosed with HIV cashed in life insurance policies, threw big parties, and in the middle of the party would be accompanied to a room by close friends and helped to commit suicide. Death was inevitable, why not chose to go in style rather than have your body wither away in pain and suffering trying in vain to fight of the inevitable.

This is however not the end of the story, since slow progress was being made in developing treatment. By 1987, AZT had been identified as stopping the progress of HIV, and by 1996 triple therapy was identified as a manageable treatment to inhibit HIV from further progressing in the body; an effective treatment had been found. Through the years, we have seen dramatic advances in treating HIV to the point that while we cannot cure HIV, AIDS is entirely curable or reversible.

We now live in the era were HIV does not need to equal AIDS, and does not need to cause death.

In a nutshell we live in a world were HIV can cause AIDS, but does not have to. AIDS can be cured, and people can live long, healthy and productive lives with HIV. Now people who have been infected with this virus, as long as it is diagnosed and treated, can expect to live their normal lifetime. And these people have themselves said: “We no longer want to be called PLHA, we are now people LIVING with HIV (PLHIV). We live, we contribute, we can make our own decisions.”

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This history is given to call for a closer examination of the language we use when speaking about HIV. While where diagnosis does not happen or treatment is not available AIDS is still possible, we have all the knowledge to prevent this; effective and quick test kits, effective treatment, and good information and practice in relation to prevention. What we do not always have is the political will, the stigma free environment which allows people to freely test, or the supportive environment in which people can openly live with HIV without fear or discrimination. If we continue to speak about HIV/AIDS, we promote the concept that that are synonymous and out of control – to be feared. If we speak about HIV and PLHIV, we promote the understanding that this virus is identifiable, treatable and preventable. If we speak about “full blown AIDS”, I would ask: “Is there half blown AIDS? Does there need to be AIDS? Why have we not been able to help the person concerned with the necessary treatment?” Today there should and is no need to speak of AIDS at all anymore.

SO, realign your mind, watch your tongue, change your speech patterns and help reduce stigma by using affirming, inclusive, positive and, above all, correct terminology about HIV and those who live and work with it.

Rev. Fr. JP Mokgethi-Heath is an Anglican priest working for the Church of Sweden. He is openly and positively living with HIV.


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