‘Unfortunately, the taboo and stigma surrounding HIV are more persistent than the virus itself’ – Belgium

In 2021, millions of HIV patients around the world are still living with a secret that eats away at them. Anyone who admits his infection risks rejection, exclusion and stigmatisation’, writes Dr Beatrijs Van der Gucht. The event “Unmasking 40/40 HIV” hopes to make this issue a topic for discussion among the general public. ‘After all, it is high time to break the taboo surrounding HIV.’

Exactly 40 years ago, the Centers for Disease Control in the US first reported on a new virus that affects the immune system. Without treatment, this virus leads to AIDS, a life-threatening disease. The global HIV pandemic has so far affected more than 70 million adults, adolescents and children and killed more than 36 million people.

From UZ Gent, we want to seize this sad anniversary to bring the taboo to the attention and make it a subject of discussion among the general public. More than 1,500 people living with HIV are monitored in the HIV reference center in Ghent. In the early days of the epidemic, an HIV diagnosis meant nothing less than a death sentence. In practice we then had to deal with often still young people who gradually deteriorated, eventually developed AIDS and died. It was a bleak period marked by panic, defeat, despair and rare resignations. Moreover, these patients were often blamed, according to many, they had sought it out themselves because of their promiscuous behavior or simply because they were homosexual. In that period people only spoke about HIV in whispers.

Unfortunately, the taboo and stigma surrounding HIV are more persistent than the virus itself.

The emergence of efficient medication in the late 1990s was very promising. During that period great medical successes were achieved and over the years treatments became more powerful and more tolerable. The large number of pills that had to be taken has also been replaced for many patients by 1 single pill per day. This medical (r)evolution has ensured that the virus is no longer measurable in the blood of most patients. As a result, the compromised immunity can partially or even completely recover, a miraculous phenomenon, and the patients have an almost normal life expectancy. Today, people living with HIV can enter into relationships like everyone else, have children safely and build their future. With an unmeasurable virus, HIV can no longer be transmitted through sex at all, contrary to what many still think.

Unfortunately, the taboo and stigma surrounding HIV are more persistent than the virus itself. Apart from the ethical side of this social phenomenon, people realize too little that it can happen to any of us. From practice we can confirm that HIV does not only occur in a select group of people. The patient group we track is heterogeneous. The virus affects both women and men, heterosexuals and homosexuals, from all walks of life and from very different age groups.

There are countless examples of stigmatization of people living with HIV. For example, this week we heard a testimony from a patient who had been out with her mother and her friend. The patient in question is one of the few who openly dares to admit her infection. Afterwards, the girlfriend’s daughter posted on social media ‘…and with that our mother is going…’. That, as if it were a dirty object instead of a sympathetic woman of flesh and blood. We get reports of dentists and doctors refusing to treat people with HIV, insurance companies charging too high cost margins for things like debt-balance or life insurance, or even refusing insurance, patients being rejected or excluded by relatives, friends or loved ones after they admit their HIV status, examples of blackmail after coming out and so on.

In this context, it is not difficult to understand that the vast majority of people living with HIV are anxiously keeping their infection secret. This often results in a loss of self-image, an internalized stigma, which can lead to depression and isolation.

Despite the spectacular progress in HIV treatment methods, the problem of stigmatization remains more topical than ever. the event ” 40/40 Expose HIV” which takes place in the Trade fair in Ghent on September 10, 2021 hopes to inform and sensitize a wide audience about this issue. In addition to a documentary film, a debate with minister Petra De Sutter and professor Ignaas Devisch, there will be a performance with a capital P, in which people publicly announce their HIV status in order to encourage all HIV-positive people who are (still) not daring to admit their diagnosis, and therefore not fully recognized and accepted as they are. Because in addition to social information and awareness, this will be necessary to change this: patients who find the courage to “out” themselves, to group themselves, to emancipate themselves. In short, to throw off the yoke that has been on their shoulders for far too long.

dr. Beatrijs Van Der Gucht is an HIV doctor at the AIDS Reference Center of UZ Gent and works together with the HIV Unraveling Fund, led by Prof. dr. Linos Vandekerckhove.

Exactly 40 years ago, the Centers for Disease Control in the US first reported on a new virus that affects the immune system. Without treatment, this virus leads to AIDS, a life-threatening disease. The global HIV pandemic has so far affected more than 70 million adults, adolescents and children and killed more than 36 million people. From UZ Gent, we want to seize this sad anniversary to bring the taboo to the attention and make it a subject of discussion among the general public. More than 1,500 people living with HIV are monitored in the HIV reference center in Ghent. In the early days of the epidemic, an HIV diagnosis meant nothing less than a death sentence. In practice we then had to deal with often still young people who gradually deteriorated, eventually developed AIDS and died. It was a bleak period marked by panic, defeat, despair and rare resignations. Moreover, these patients were often blamed, according to many, they had sought it out themselves because of their promiscuous behavior or simply because they were homosexual. In that period people only spoke about HIV in whispers. The emergence of efficient medication in the late 1990s was very promising. During that period great medical successes were achieved and over the years treatments became more powerful and more tolerable. The large number of pills that had to be taken has also been replaced for many patients by 1 single pill per day. This medical (r)evolution has ensured that the virus is no longer measurable in the blood of most patients. As a result, the compromised immunity can partially or even completely recover, a miraculous phenomenon, and the patients have an almost normal life expectancy. Today, people living with HIV can enter into relationships like everyone else, have children safely and build their future. With an unmeasurable virus, HIV can no longer be transmitted through sex at all, contrary to what many still think. Unfortunately, the taboo and stigma surrounding HIV are more persistent than the virus itself. Apart from the ethical side of this social phenomenon, people realize too little that it can happen to any of us. From practice we can confirm that HIV does not only occur in a select group of people. The patient group we track is heterogeneous. The virus affects both women and men, heterosexual and homosexuals, from all walks of life and from very different age groups. There are countless examples of stigmatization of people living with HIV. For example, this week we heard a testimony from a patient who had been out with her mother and her friend. The patient in question is one of the few who openly dares to admit her infection. Afterwards, the girlfriend’s daughter posted on social media ‘…and with that our mother is going…’. That, as if it were a dirty object instead of a sympathetic woman of flesh and blood. We get reports of dentists and doctors refusing to treat people with HIV, insurance companies charging too high cost margins for things like debt-balance or life insurance, or even refusing insurance, patients being rejected or excluded by relatives, friends or loved ones after they confess their HIV status, examples of blackmail after coming out and so on. In this context, it is not difficult to understand that the vast majority of people living with HIV are anxious to keep their infection secret. This often results in a loss of self-image, an internalized stigma, which can lead to depression and isolation. Despite the spectacular progress in HIV treatment methods, the problem of stigmatization remains more topical than ever. The event “Unmasking 40/40 HIV” that will take place at the Handelsbeurs in Ghent on September 10, 2021 hopes to inform and sensitize a wide audience about this issue. In addition to a documentary film, a debate with minister Petra De Sutter and professor Ignaas Devisch, there will be a performance with a capital P, in which people publicly announce their HIV status in order to encourage all HIV-positive people who are (still) not daring to admit their diagnosis, and therefore not fully recognized and accepted as they are. Because in addition to social information and awareness, this will be necessary to change this: patients who find the courage to “out” themselves, to group themselves, to emancipate themselves. In short, to throw off the yoke that has been on their shoulders for far too long.Dr. Beatrijs Van Der Gucht is an HIV doctor at the AIDS Reference Center of UZ Gent and works together with the HIV Unraveling Fund, led by Prof. dr. Linos Vandekerckhove.

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