“We should have an HIV-positive candidate in Koh-Lanta”, pleads Superséro – 20 Minutes

“We are going to insult you, threaten you, tell you that you are dirty.” Words are harsh. Nicolas Aragona addresses them to himself. In the past. To the 21-year-old young man he was in 2010, the day he was discovered to be HIV-positive. He warns himself of discrimination, insults of which he will be the victim. But reassure. “Today you are no longer alone. Remember that it is their fear which speaks and raises its head ”, launches the Niçois, filmed in a spot of Public Health France diffused on the occasion of the
World AIDS Day.

Like two other people living with HIV, the thirty-something agreed to testify “to make visible” what he is working to do on his side, already for more than a year, with the association he created in Nice. Very present on social networks, “Superséro” dismantles, often with humor, the received ideas about HIV-positive people and encourages them to testify. He recalls in particular that with treatment, the virus becomes undetectable and can no longer be transmitted. For 20 minutes, he tells his own experience and encourages us to go further. In particular, he calls on the producers of audiovisual content to include HIV-positive people in their programs.

How did the announcement of your HIV status go?

Following a love breakup, at age 21, I moved to Montreal to settle there. I caught a labyrinthitis [une infection rare de l’oreille interne] which kept me from walking for several months. I was rushed back to France, I was repatriated because they thought I had meningitis. The general practitioner replacement did not want to tell me about the diagnosis. We waited for hours because we were redirected to a CHU. It was a bit chaotic. Ten years ago, it was still a bit of rubbish. The first thing I was told was that I shouldn’t talk about it. I, on the contrary, have always spoken openly about it. And following that, in Nice, there were a lot of insults, threats. I lost a lot of friends who disappeared overnight. I had almost no sex anymore. I refocused a little on my studies.

Do you have the impression that things have changed on this subject?

I see that in Nice, we are finally starting to do therapeutic workshops to support people to whom we announce the diagnosis. It’s a medical protocol. But from that point of view, in the vast majority of cases, it’s fine. With the treatments, we are able to live normally and have a life expectancy comparable to that of an HIV-negative person. Support should above all be legal and social. It is really from the point of view of discrimination that there are problems today. And, for the moment, we still do not have associations fighting for our rights. Access to bank loans, insurance, there is still a lot to review. The French state forbids us to be a firefighter, policeman, gendarme, or to join the army. And these are old restrictions that date back to 30, 40 years ago and have never been updated.

How do you get things done faster then?

No matter how much we make speeches, as long as we don’t have HIV-positive characters appearing on TV, in shows, things won’t go fast enough. It would be a thousand times more impactful to see an HIV-positive candidate Koh Lanta or to Top chef than doing 50,000 preventions with signs. We need the real and the concrete today. We have to be able to reach producers so that they include people living with HIV in their series, as was done in More beautiful life, in their reality show.

What you are saying is that we see a lot of HIV negative people encouraging others to stay, but not enough HIV positive people telling their stories about their life with HIV…

It’s all a question of visibility, indeed. We do a lot of prevention and so much the better. But prevention is the front. The during and the after, we don’t think so. We do not see him. All the anxiety that there is around screening, we don’t think so either. This is also perhaps why a quarter of people living with HIV learn that they are infected at an advanced stage. It is absurd to encourage people to get tested without telling them what will happen if it is positive. As long as we haven’t popularized it and as long as we don’t fully integrate it into the culture, it will be complicated. As long as there are no HIV-positive people in ads, in series, in movies, there will always be a huge taboo. Especially since serophobia also comes from prevention.

That is to say ?

We forgot it, but a few years ago prevention demonized it so much, thought about it so much from an HIV negative point of view, that it sidelined people with HIV. A little over ten years ago, in Germany, there was a campaign that compared a person with HIV to Hitler. Others featured a scorpion or tarantula. Today, infected people must reinvest themselves in prevention. But it’s complicated. I am told each time: “You are doing very well, you have your treatments, you are not going to complain”. And I’m sick of hearing that. We experience other sufferings. We live the exclusion, we live the stigma. These are other forms of violence. We have 40 years of background and history on any case. It must be useful. It is all the more clear with the Covid-19. Health crises, there will be others and we must use the experiences of all of us.

This serophobia also persists on the social networks where you are present?

On TikTok [il comptabilise près de 50.000 abonnés et presque 900.000 likes], there are 10 to 20% of people who are very violent. Many believe that we are obligated to disclose our HIV status. But no, we have no obligation. Most of the time, we meet someone, we learn to get to know each other, to trust. And there, we talk about it. Disclosing this information about someone else is, however, punishable by law. But on the networks, there is still a large majority of people who are there to listen to us and who are on our side. The new generation, above all, is ready to be sensitized.

Is there a lack of knowledge?

Yes, and it still comes from prevention. We have known since 2008 that when we are treated and the virus becomes undetectable, we no longer transmit it. And yet it took years to talk about it. The associations took years to dare to say it clearly, because they were afraid that it would put their action at odds. More and more people living with HIV need to be there to remember this. It will encourage even more people to get tested.