This article is published in issue 49 of Vanity Fair on newsstands until 5 December 2023. To celebrate our #20changes with us, read here
AIDS, the virus that negatively marked the history of the 80s. The disease that triggered collective fears, prejudices, discrimination, social stigma and self-stigma. The pathology that today is possible to manage with effective treatments, but which is discussed little and which is still dangerously underestimated.
The story of Stefano and Isabella is emblematic: father and daughter affected by the same disease twenty years apart from each other. A dramatic fate, almost unthinkable, yet possible. Which reiterates a fundamental concept: we must not let our guard down.
«There is a heartbreaking and indelible image in my memory as a child: my father on the hospital bed, with his body almost entirely purple from the multiple attempts to attach an IV to him. He had become depressed because his partner, the man who had become the cornerstone of his new existence, had abandoned him. And he let himself go. He had no longer followed the treatments, he had allowed the disease to take over, inexorably.”
Isabella, 41 years old, manager in a consultancy company, is single and lives in Milan. She was 10 years old when her father Stefano passed away forever due to AIDS. In 1992 the first targeted therapies began to work, but in the face of that depression and the abandonment of treatment there was nothing that could be done. Isabella didn’t know what illness her father actually suffered from. Her mother had wanted to protect her from prejudice and possible discrimination, so her official version was that it was a tumor. «I discovered the truth about my father at 14, when an aunt, remembering him, told me that it was a problem for her to invite him home: her illness scared her. Faced with my perplexity about these incomprehensible fears, she explained to me that it was not a tumor, but AIDS.”
From 1982 (the year of the first AIDS diagnosis in Italy) to 31 December 2022, the cases recorded in our country were 72,556. This was revealed by the new report released by AIDS Operations Center (Coa) of the Istituto Superiore di Sanità. In 2022, there were 1,888 recorded diagnoses of HIV infection. First cause of contagion: sexual transmission.
“Dad was a professional nurse,” Isabella continues. «He had a strong, generous, unconventional personality. He was a free spirit, actively engaged even in the poorest areas of the world, where he brought gifts and support. He separated from his mother when he realized he needed a different relationship. He realized that he was bisexual and understood that it would be difficult for her to accept this situation. Despite the separation, my parents remained on excellent terms. They continued to date and he, to remain close to us, moved to an apartment in the same building as us. At first he was alone, then he started living with his partner. The same one who transmitted the virus to him and then left him, throwing him into despair.”
When Stefano discovered he had AIDS, at first, he didn’t tell anyone. «Not even my mother», Isabella continues. “She was probably ashamed, in those years there was a very strong stigma, it was difficult to deal with even the very idea of homosexuality.” The many prejudices dictated by the lack of knowledge of the virus and the methods of contagion spared no one, manifesting themselves even within the family. «At the time there wasn’t much information about HIV transmission. When my father’s illness became known, my mother immediately had us tested. It was negative and from that moment, out of an abundance of caution, he decided to keep separate all the things that my father used when he came to visit us: from the glass in which he drank to the towel that he used in the bathroom. I remember that once I went with him to the Marche, to the family home. We had organized a picnic with uncles and friends. During lunch, however, two tablecloths were laid out: one, aside, just for me and my father. I must have been nine years old, the concept of discrimination didn’t exist in my head, but it seemed like very strange behavior to me, although dad justified it by saying: “Don’t pay attention to it, they have different habits, they’re like that”.
After her father’s death and the discovery of her true illness, Isabella deepens her knowledge of the virus and begins to adopt healthy behaviors such as protecting herself during sexual intercourse and periodically undergoing HIV testing. «I had only one boyfriend until I was 26. Afterwards I also started having slightly more frivolous relationships, but I never shied away from taking precautions.”
Everything changes when a new story begins that lasts about a year. During the first months she always uses a condom then, as the couple solidifies, the two move on
unprotected relationships. Isabella does not know that her partner also occasionally has homosexual relationships. A mutual friend reveals it to her when the relationship has already ended. But he discovered that she was worse than herself two years later. In 2013, at the age of 31, she was hospitalized for severe breathing problems and the diagnosis of pneumonia. «I always had very low immune defenses and it wasn’t clear why the situation didn’t improve despite the treatment. The doctor suggested more in-depth tests: either it was a tumor or the HIV virus. I’ll take the test, it was the second.”
Faced with the diagnosis, Isabella does not cry or despair: «I knew that virus perfectly and I told the doctor my father’s story. However, I kept wondering how I could have contracted it, given that I had always been very careful. When they told me that the onset of the disease dated back to about two years earlier, I linked the infection to that one relationship in which “I trusted””.
According to the latest data published by the Coa, the AIDS Operations Centre, in almost 60 percent of cases the HIV infection is discovered at an advanced stage, which can compromise the effectiveness of therapies which, if taken early, allow a good quality of life. «Thanks to the new drugs, the new diagnostic tests, the message U=U, undetectable=untransmittable (i.e., I am treated, not infected), PrEP and PEP have the opportunity, if well managed, to act in a very significant way on reducing new infections”, he explains Andrea Gori of the Department of Infectious Diseases, Luigi Sacco Hospital, University of Milan and president of Anlaids Lombardy. «However, according to new epidemiological data, in 2022 the increase in infections among 25 and 35 year olds continues».
Out of a sense of responsibility, after being diagnosed with HIV, Isabella decides to contact her latest partners. Starting with that ex who had transmitted the virus to her. «He never replied to me», she says, «he even deleted all the messages and disappeared. In the two years I was single I had dated a few men who I wrote to. There were those who were scared, but also those who told me: “I’m sorry for what happened to you, I donate blood and do the tests on time: I’m calm.” Or: “Thanks for telling me, I’m going to get tested.” Ultimately, everyone replied that they hadn’t had any problems. However, I do not deny that I have also received a series of insults, given that there is still great ignorance.”
Today Isabella leads a normal existence. Her treatment consists of a pill to be taken at lunch every day to keep the virus undetectable. It means that you can have unprotected intercourse, without risk of infecting your partner.
«Therapy has changed a lot over the years», explains Gori. «Seven years ago you had to take 10-15 tablets a day with various side effects. Today, 95 percent of people on treatment take just one tablet a day. Little toxicity, excellent tolerability and much greater effectiveness. For about a year, then, we have also had new long-acting drugs available, i.e long acting. Thanks to an intramuscular injection every two months, it is possible to replace oral therapy, which avoids problems related to correct intake and possible forgetfulness. We are in the first generation of long acting, but drugs that will allow administration every six months are already at an advanced stage of study. Two injections a year and the therapy will be perfectly managed.”
On the affection front, Isabella received a lot of understanding and acceptance from the beginning. «True friends were there for me right away. I have avoided opening up about the disease to slightly bigoted people who might not understand. Even in relationships I wait to say it if I’m not sure how the story will evolve. There is no risk for others at the moment and, in the case of occasional relationships, I use a condom mainly to protect myself: I cannot infect, but I cannot be certain that the other person is perfectly healthy” .
The real risk therefore is to trust without having proof of the good state of health of others. Isabella adds: «The problem is that this disease cannot be seen. It’s not enough to look at a person to understand if they have HIV. When it comes to sex, we know there are no protections for oral sex. So, my suggestion, when dating someone new, is to only have sex that allows the use of a condom. At least until the knowledge has deepened to the point of sharing specific tests that can make both of us feel calm.”
Let’s talk more about it
Today, those living with HIV infection can have a good quality of life thanks to the available therapies. However, 40 percent of patients learn about the infection by chance and 2 out of 10 people struggle to talk about it, mainly due to fear of judgment and marginalization. To break down the stigma and help people live with greater serenity, on the occasion of World Day to Fight AIDSwhich is celebrated every year onDecember 1st, Gilead Scienceswith the patronage of 16 patient associations, of Italian Society of Infectious and Tropical Diseases and of theItalian conference on AIDS and antiviral researchcreated the campaign HIV. We’ll talk about it?, born from a survey conducted on 500 people living with HIV. Stigma and self-stigma in fact have a negative impact on the quality of life and psychological well-being: many people with HIV are at risk of depression (and we know that antiretroviral drugs, when a person is depressed, have a harder time working). Talking about HIV again can help those who discover they have the infection feel less alone.
All about my mother
Fear hurts like a rusty knife (Nottetempo, 2023, pages 160, 16 euros) tells the story of Roberta, who died very young from AIDS in 1994. She became infected in the short period in which she had used drugs. In this memoir, her daughter Giulia Scomazzon – who was seven years old at the time and from whom the truth had been hidden – worked on her memories until she reconstructed a true image of her mother, giving her back that dignity that the stigma of she had taken from her.
Source: Vanity Fair
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