From a scientific perspective, the response to the AIDS epidemic can be considered a success. In just over 35 years, the infection went from a global plague to a tractable disease.
New drugs, with less side effects and better performance, have allowed people with the HIV virus to live with virtually no symptoms of AIDS. When the infection is under control — or the patient has “undetectable levels” of the virus, in medical jargon — it is not transmitted by sexual contact. The average life expectancy of a person with HIV is now similar to those without it.
However, people living with HIV and AIDS (often shorted 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 illness and death. The People Living with HIV Stigma Index, research that is sponsored by the United Nations AIDS program and conducted in several countries, shows that 20% of PLWHA have experienced suicidal thoughts in the past year.
Brazilian public health doctor and activist Carué Contreiras, a 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 toward us, PLWHA, has not changed. This is an attitude that, in an exercise in strategic essentialism, could be called serophobia,” he told Global Voices by email.
There were more than 36 million people in 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 ages of 15 and 49 are carriers of the virus, but their geographical distribution is extremely unequal — in Southern Africa, the proportion of people in this age group with HIV is of 4.2%, while in the Americas it is 0.4%, a rate below the world average.
Brazil was the first country in the world to provide anti-HIV drugs for free through its public health system. The number of new infections has been stable since the late 1990s, and, for the first time, more than half of those living with HIV are in treatment.
But this achievement overlooks the prejudices still faced by PLWHA in Brazil. “PLWHA's voices are especially neglected by the media, which often portrays them as victims, or as an example not to be followed, under the auspices of promoting prevention.”
Check out 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 transmission by casual contact, is relatively simple to deconstruct. But, at a deeper level, serophobia derives from other sexual oppression, and attributes to us moral failure or personality drift. The various expressions of serophobia are complex and interact with other prejudices against marginalized groups — like misogyny, sexism, racism, transphobia and others, depending on the place. In regions where the disease and death from AIDS are still frequent, those images actively inform serophobia.
Most high-profile campaigns, from both NGOs and governments, tend to focus on prevention, but some activists argue that the fight against AIDS must also be pursued through other means. Could you talk about this?
Campaigns about health education often lapse because they restrict the message to prevention only and end up ignoring the actual person living with HIV. Of course, access to prevention is important for people to build autonomy in their own sexuality. However, in the case of HIV, there is always an other side, an “other”, which is the PLWHA. Unlike the person with gonorrhoea, having HIV is a lifelong identity that is related to the loss of rights.
An educational discourse that is confined to “how to protect yourself” – and gives PLWHA the role of vector – will only reinforce alterity and serophobia. In contrast, a message that starts with a consistent problematization of serophobia and is neutral with respect to serological status may help to dissolve the silence. Silence neuroticizes subjectivities even among negatives [people without HIV], thereby causing paranoia and denial, which interfere both in coexistence and affection, as well as in the ability to prevent HIV transmission itself.
What is the role of media in those circumstances?
Media representation tends to polarize between excitement by scientific achievement and a fatalistic and victimising gaze of individuals or deeply afflicted countries. Medical science is undoubtedly the most visible and exciting aspect of HIV — note that there is rarely a physician's statement missing from a news story. Unlike malaria and other diseases common in developing countries, there is significant funding for research on HIV treatment and prevention, which brings about potentially 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. PLWHA's voices are especially neglected by the media, which often portrays them as victims, or examples not to be followed, under the auspices of promoting prevention. But this kind of advocacy ends up reinforcing serophobia.
“High-risk groups” were a buzzword in the early days of AIDS. These days, public health professionals prefer the term “key affected populations.” Why is that change important?
The evolution of the categories used to explain why some groups are more affected than others reflects the advancement of the understanding of HIV from a rights perspective.
‘High-risk groups’, which comes from a time when LGBT people had no rights at all, sees HIV as a natural consequence of deviant behavior, intrinsic to certain groups — thus justifying marginalization. Therefore, restricting the rights of ‘risk groups’ was necessary for the well-being of general society.
Then came the term ‘high-risk behavior’, 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.
A major 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 violations of rights, power imbalance and access to services can affect the ability of a person to control risk.
The term ‘key affected populations’ is recent and maintains the interpretation of ‘vulnerable populations’, but adds the need for meaningful involvement of social movements in AIDS-response decisions.
Is there already a consensus on the use of these categories?
No. These categories reflect political positions, so, unfortunately, we have not yet outgrown the old interpretations, which are still present in current discourses about HIV, depending on the interlocutor.
One example is the different interpretations of the spike in new infections among young people in Brazil – a generalization that conceals the fact that most of them are LGBT. The media cliché, which has become common sense, is that their “irresponsible” behaviour may stem from the fact that “they did not see their idols die.” The burden lies on the individual, resting in the belief that it all depends on the young person's choice, so one can conclude that the category actually used here is ‘high-risk behavior.’
However, an analysis from the vulnerability point of view may reveal the fact that the battle for LGBT adolescents’, and all young people's, rights to sexuality still occurs on the margins of 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 ‘key affected populations’, but few demonstrate understanding of the importance of civil society's participation. Therefore the term is emptied of practical meaning.
I should also add that even when using an appropriate category, the social theory of HIV reflects biases common in academia. One example is how researchers interprets the enormous inequality of AIDS between white and non-white people in Brazil. In a country that is founded on the myth of racial democracy, the contributions of black academics are silenced by an essentially white academy. Therefore, in Brazil, unlike the United States, there is little evidence of critical racial theory within HIV social theory.
These examples make it clear that we not only need to talk about HIV, but, most importantly, we need to be very aware about the way we speak about it and whether the discourses do or do not foster prejudices.