For the public medical activist, Carué Contreiras, campaigns must go beyond prevention and clarification of the objective. Photo: Sham Hardy / Flickr, CC-BY-SA 2.0)
From a scientific perspective, the response to the AIDS epidemic can be considered a success. In just over 35 years, the infection went from being a global pest to being a manageable disease.
New drugs, with fewer side effects and better performance, have allowed people with the HIV virus to live virtually without AIDS symptoms. When the infection is under control, or the patient has "undetectable levels" of the virus, in medical jargon, it is not transmitted by badual contact. The average life expectancy of a person with HIV is now similar to that of those who suffer from it.
However, people living with HIV and AIDS (often shortened to PLWHA) still face social stigma, which limits their rights, prevents them from finding peers and defending themselves publicly and collectively. Stigma leads to silencing and isolation, which in turn contribute to disease and death. The stigma index of people living with HIV, sponsored by the United Nations program against AIDS and conducted in several countries, shows that 20% of PLWHA have had suicidal thoughts last year.
Brazilian public health doctor and activist Carué Contreiras, member of the National Network of People Living with HIV / AIDS (RNP +), is one of the professionals working at the intersection of science and human rights. "Science has evolved, but the negative attitude towards us, PLWHA, has not changed, this is an attitude that, in an exercise of strategic essentialism, could be called serophobia," he told Global Voices by e-mail.
Carué Contreiras, Photo: personal file, published with permission.
There were more than 36 million people around the world living with the HIV virus by the end of 2016, according to the World Health Organization. It is estimated that 0.8% of adults between 15 and 49 years old are carriers of the virus, but their geographic distribution is extremely unequal: in southern Africa, the proportion of people in this age group with HIV is 4.2% , while in the Americas it is 0.4%, a rate lower than the world average.
Brazil was the first country in the world to provide anti-HIV drugs free of charge through its public health system. The number of new infections has remained stable since the late 1990s and, for the first time, more than half of people living with HIV are in treatment.
But this achievement overlooks the prejudices that PLWHA still face in Brazil. "The voices of PLWHA are especially neglected by the media, which often portray them as victims, or as an example that should not be followed, under the auspices of promoting prevention."
Take a look at the full interview below.
Why are discussions about HIV still so marginalized, despite the progress of available treatments?
The first layer of prejudice, the fear of casual contact transmission, is relatively simple to deconstruct. But, on a deeper level, serophobia is derived from another badual oppression and attributes to us the moral failure or personality drift. The various expressions of serophobia are complex and interact with other prejudices against marginalized groups, such as misogyny, badism, racism, transphobia and others, depending on the place. In regions where AIDS disease and death are still frequent, these images actively report serophobia.
Most high-profile campaigns, both from NGOs and governments, tend to focus on prevention, but some activists argue that the fight against AIDS should also be pursued by other means. Could you talk about this?
Campaigns on health education often expire because they restrict the message to prevention only and end up ignoring the real person living with HIV. Of course, access to prevention is important for people to create autonomy in their own baduality. However, in the case of HIV, there is always another side, an "other", which is the PLWHA. Unlike the person with gonorrhea, having HIV is a permanent identity related to the loss of rights.
An educational discourse that is limited to "how to protect oneself" and gives PLWHA the role of a vector – will only reinforce otherness and serophobia. Conversely, a message that begins with a consistent problematization of serophobia and is neutral with respect to serostatus can help dissolve the silence. Silence neuroticizes subjectivities even among negatives [people without HIV] causing paranoia and denial, which interfere both in coexistence and affect, and in the ability to prevent the transmission of HIV.
What is the role of the media in these circumstances?
Media representation tends to polarize between emotion for scientific achievements and a fatalistic and victimizing view of individuals or countries deeply afflicted. Medical science is undoubtedly the most visible and exciting aspect of HIV: keep in mind that there is rarely a doctor's statement in a news item. Unlike malaria and other common diseases in developing countries, there is significant funding for research on HIV treatment and prevention, which produces life-changing services.
However, the social aspects, which are related to human rights, are less visible. But they help explain why scientific achievements do not reach everyone. The voices of PLWHA are especially neglected by the media, which often portray them as victims, or examples that should not be followed, under the auspices of the promotion of prevention. But this type of defense ends up reinforcing the serophobia.
"High-risk groups" were a buzzword in the early days of AIDS. Currently, public health professionals prefer the term "affected key populations". Why is this change important?
The evolution of the categories used to explain why some groups are more affected than others reflects the advance understanding of the HIV rights perspective.
The "high risk groups", which come from a time when LGBT people had no rights, see HIV as a natural consequence of deviant behavior, intrinsic to certain groups, which justifies marginalization. Therefore, restrict the rights of the & # 39; risk groups & # 39; It was necessary for the welfare of society in general.
Then came the term & # 39; high risk behavior & # 39 ;, which correctly conveys a risk of infection for the entire population, but still exaggerates individual responsibility. The term reinforces the notion that people who have become PLWHA are those who already had a deviant profile. It is still serophobic because it generalizes a profile for PLWHA and ignores, for example, external elements such as prejudice and isolation. In addition, the term exempted governments from certain responsibilities.
An important contribution to the social theory of HIV was the next category, "vulnerability" or "vulnerable populations", which focused on the context in which a person lives, and on how rights violations, the imbalance of Power and access to services can affect a person's ability to control risk.
The term & # 39; affected key populations & # 39; It is recent and maintains the interpretation of "vulnerable populations", but it adds the need for participation of social movements in AIDS response decisions.
Is there already a consensus on the use of these categories?
No. These categories reflect political positions, which is why, unfortunately, we have not yet overcome the old interpretations, which are still present in current discourses on HIV, according to the interlocutor.
An example is the different interpretations of the increase in new infections among young people in Brazil: a generalization that hides the fact that most of them are LGBT. The cliché of the media, which has become common sense, is that their "irresponsible" behavior may be due to the fact that "they did not see their idols die." The burden falls on the individual, who relies on the belief that everything depends on the choice of the young person, so one can conclude that the category actually used here is "high risk behavior".
However, an badysis from the point of view of vulnerability can reveal the fact that the battle for LGBT adolescents, and all young people's right to baduality still occurs outside of the society, since it was not followed by effective public policies and educational campaigns.
Another example is that most authorities in the world today use the term & # 39; affected key populations & # 39; but few demonstrate an understanding of the importance of civil society participation. Therefore, the term is empty of practical significance.
I should also add that even when an appropriate category is used, the social theory of HIV reflects the common prejudices in academia. An example is how researchers interpret the enormous inequality of AIDS between white and non-white people in Brazil. In a country that is based on the myth of racial democracy, the contributions of black scholars are silenced by an essentially white academy. Therefore, in Brazil, unlike the United States, there is little evidence of a critical racial theory within the social theory of HIV.
These examples make it clear that not only do we need to talk about HIV, but most importantly we need to be very aware of the way we talk about it and whether or not discourses encourage prejudice.