Protect yourself. Protect Living with HIV today.

Four testimonies from people infected with HIV. The complexity of the situations they may find themselves in dealing with everyday life. They are aware of not being a vehicle for transmitting the virus because they are on HIV therapy and with stable virological suppression. And their appeals for prevention. Four stories of how HIV entered the lives of the protagonists and how they dealt with it in 2020. This initiative, promoted by helpAids and the Emilia-Romagna Region, focuses on an infection that can still affect everyone without distinction. It does so through the experiences of four different people. All of whom opened up by narrating their own experiences. Even if, for them, the topic of stigma remains high. Privacy is a necessity, and first-person exposure is still too burdensome.

The stories are thus told in videos in contexts different from those of the protagonists and through professional actors, skilled and capable of conveying the strength and emotions of the interviewees. From the life stories told, many aspects of the topic emerge, as it is possible to treat it today: the self-empowerment which, if supported, facilitates the way of dealing with the infection, the therapy which now works and allows you to live a normal life, and this is also thanks to the ability of the Health Service to take charge promptly and fairly.

The stigma

The stigma remains, the risk of exposure that can happen to anyone. Up to the calls for prevention that come from the interviewees themselves because, yes, there is therapy, but prevention remains essential to defeat the virus. On the topic of HIV therapy, the initiative allowed us to delve into aspects that are still little known.

International scientific literature demonstrates that people infected with HIV who follow effective antiretroviral treatment and have stable virological suppression do not transmit the infection. The international campaign U=U (“Undetectable = Untransmissible”, translated as “Not detected equals non-transmissible”) was created on the topic, also taken up in the acronym TASP (Therapy as Prevention). The implications are significant, particularly for the relationships, work and sensitivity of people living with HIV. Naturally, interrupting therapy nullifies the impact of these conditions because there is no definitive cure.

Therapy

Furthermore, HIV therapy does not protect against the transmission of other Sexually Transmitted Infections. This discussion highlights the importance of early diagnosis of the infection and the fight against the phenomenon of late presenters. If people overcome the cultural and psychological barriers to take the HIV test promptly following a risky episode, they make it possible to start treatments immediately and safeguard their health and that of those around them.

HIV and AIDS, therefore, remain on the collective agenda today; exposure to risk and the need to give continuity to prevention are still relevant in the awareness that Information is the only way to overcome ignorance and fears. Then, of course, people’s actions and choices count. Precisely for this reason, a dutiful thanks goes to the people who opened up and were interviewed for this initiative because, even through a story mediated by actors, they were able to convey at the same time awareness and hope, strength and fragility, normality but also the need for don’t let your guard down. #livingHIVtoday

David and his story

David is a mature man, a previously married father. His name is fictitious; a professional actor plays him in the video. His story is true. He separates from his wife; his children decide to go and live with him. And it is precisely with his children that she will face the most important battle of his life. He loves to travel and dance, and, no longer having a fixed relationship, he spends a period of “freedom” even in his sexual life. An unprotected relationship he had with a person he met by chance changed his life.

He goes through a terrifying week, pain all over his body, high fever, sores opening up on his skin; he can’t stand or walk, and his immune defences are down. Then there wasn’t the Information we have today; then there weren’t the treatments we have today, and everything was different. He undergoes immediate checks until after test after test, he discovers that he has HIV.

Devastating effects

In past years, there were no treatments like today; the medicines had devastating effects, and people felt very ill when they took them. Medicine has made giant strides quickly, and when the new therapy arrives, everything changes. At this point, he can resume his work, cooking; he is a chef, and he can be in contact with people more serenely, even if he is always very attentive to everything. His children knew straight away that he was HIV positive.

Davide had to protect not only himself but also his children from the stigma of AIDS, and they protected him. A secret is shared between them, in the family, and that’s it. Now, after a long time, now that his children are grown up and independent, he has a steady relationship. Still, for him, “the most difficult thing, when you meet someone, is understanding whether you can tell them that you are HIV positive… or not tell them for all your life… or you tell her… knowing that you may never see her again.” Information remains the only way out to defeat AIDS, “protect yourself and protect yourself” can make the difference.

Sabrina and her story

Sabrina has been an HIV-positive woman for many, many years. Her name is fictitious; a professional actress plays her in the video. Her story is true. Unbelievably, she is a person with incredible inner strength and courage. Who faced the HIV infection by going through suffering and loneliness. But who is also clinging to the good things in life and is capable of experiencing her emotions entirely and fragility today? She contracted HIV from her boyfriend, who had been in the community but had recovered. She exposed herself to a risk of which she was little aware; the concern of having sexual intercourse in her time was only not to get pregnant. Her sense of loneliness was strong: “You couldn’t talk about it with your family; they still don’t know anything. And you asked for that stigma; you were promiscuous…”. When instead, he was her first boyfriend.

The virus affected both of them but did not divide them; on the contrary, it strengthened their bond. Alone, together, they faced fears, pain and anguish. They married, but the therapy he was undergoing at the time had devastating side effects. And he died. End of dreams, hopes, everything?

Still carries the scars.

No, Sabrina had the strength to carry scars, pain, and an uncommon “sense of life”. She had to start HIV therapy only many years after discovering that she was HIV positive because her viral load was rising. The drugs were now different; she was fine. “Life can be faced; today, I have a new partner”. In her experience as a couple, even if she is in therapy, she is not a vehicle for transmitting the virus because the viral load is non-existent. A psychological issue still arises, the past she has experienced: “You are in your head; it’s difficult to leave each other completely.”

Yet her energy has transformed into a touching appeal to today’s girls. “Be careful because on the wave of feelings, there is the danger of being carried away… experiencing sexuality, yes, but with a little caution. With all the possibilities for Information and protection that exist, getting HIV is something that should never happen again. And then, take the test because finding out right away makes the difference.”

Alessio and his story

Alessio came across HIV in 2012 during the earthquake in Emilia-Romagna. The name is fictional; a professional actor plays him in the video. His story is true. He had sex without using a condom with a person he met in a club. They are not a permanent couple, but there is a lot of attraction. They discover almost at the same time that they are HIV positive because, not having any stable relationship, Alessio (even without having particular symptoms) keeps himself checked regularly via HIV tests. An earthquake in his life, too. “When you discover you have HIV, at first you always live thinking that this is your last day, so you commit many imprudent acts, you challenge life itself, but then you realise that your own life can be lived again.” He does not start therapy immediately, even though he is regularly checked and regularly receives treatment.

In the beginning

The first years were the most difficult because he was afraid of infecting others; then, everything changed when he finally started therapy! Now, Alessio has a normal life, is an attentive, moral teacher, plays sports regularly, follows a correct diet, “loves himself more and respects himself more,” and has his usual friends, those who have never abandoned him, always by his side.

Still, he knows that every extra day he lives is like a “gift”. He is a volunteer at an association and is close to those who have initial fears of him, those who feel stigmatised, and those who still have many questions to which they are looking for answers but do not tell anyone that he is HIV positive.

Few know that he lives with HIV; he is not sick. In today’s Italian society, however, the famous “purple halo” is in an advertisement from the past. It is still present; he perceives it for those who have HIV. “From an existential point of view, you develop a greater, stronger sensitivity towards everything that causes stigma because either you are a victim or you react. I decided to react.” His experience and his constant contact with people, colleagues, students, and parents led him to face the infection with determination every day, containing it with therapy. And to push to counteract with Information the false myths and incomplete Information that still circulate today about HIV and AIDS.