What was an ominous diagnosis in the early 1980s is now a treatable and chronic infection that allows those who suffer from it to live to old age, have the same life expectancy as other people, and practice sexual intercourse without the risk of infection. the virus – if it is not detected in the blood, which is achieved by modern methods of treatment, it is not transmitted – and have children.
In fact, both globally and in Spain, the number of new infections continues to decline, and the goal of UNAIDS, the program coordinating the efforts of various UN agencies to combat HIV/AIDS, is to end the pandemic itself. public health threat by 2030.
But science is developing much faster than society. Thus, there are 39.9 million people living with HIV in the world; about 150,000 in Spain – in many cases there continues to be fear that being diagnosed with the disease will mean rejection, retribution, loss of friends and jobs, or the inability to have a partner.
Poster for the celebration of World AIDS Day. / UNAIDS
For this reason, the celebration of World AIDS Day on December 1st under the slogan “Let’s take the path of rightsstresses that to protect the health of all people, human rights must be placed at the center of attention.
Women “forever forgotten”
“I am a woman diagnosed with HIV in 2005, and my passion is to advocate and protect the rights of people in general and people with HIV in particular,” she tells SINC. Candida Alvarez FernandezPresident of the Galician Association of People Affected by HIV (AGAVIH) and member of the executive board of Cesida (state coordinator for HIV and AIDS). For women, especially if they are migrants, stigma creates special problems such as invisibility and isolation: “We are forever forgotten,” she said.
For example, a group exhibition button Positive lifebringing together more than a hundred works by artists with an inclusive view of HIV, which can be visited at the RGF studio in Madrid until December 14th and during the inauguration of which, on October 17th, this conversation took place.
“In this gallery you will see limited representation of women’s work,” she points out. “Just because we are women, we are in a situation of discrimination. This is a harsh example, but a woman is a whore and a man is not. “If you have HIV, you must have done something.”
Alvarez Fernandez He is 66 years old and lives in Vigo, although when he was 4 years old he emigrated with his parents from Spain to Buenos Aires, where he spent a significant part of his life. He had a drug problem in his youth but came out of HIV unscathed, he explains, something that didn’t happen during his marriage. “When my son was 14 years old, I fell in love with a man who was my husband for 22 years and whom I did not know had HIV. When we decided to start a family and not have sex with a condom, I was tested, but he was not,” he clarifies.
Oliver Marcos, Secretary General of Cesida, at the La Vida en Positivo exhibition. / Aser G. Rada
“Women’s issues must be included on the political agenda. We must continue to work, especially in rural areas, where there are more forgotten women.”
Candida Alvarez Fernandez (Galician Association of People Affected by HIV)
Robert (not his real name) works in the cultural sector, is gay and has only told four or five friends that he has been living with HIV for 13 years, he explained to SINC on condition of anonymity. At 45, he didn’t even tell his family about it. “They are all right-wing, Catholic, very traditional. By saying it would hurt me, I would have to give a lot of explanations and they would be very worried,” he says over the phone.
“One of the social workers I contacted initially told me that reporting it was a gift I had given to someone, so I had to choose very carefully because it could have backfired on me,” he recalls . “He told me: ‘Take your time, wait as long as you need, and you will see when the time comes and with whom.’ And so it was. It took me three years to tell my best friend.”
“Once I got into the medical field, being in a support group helped me a lot. Find people like me”
Roberto (fictitious name)
In fact, like many people with HIV, Roberto first had to confront his own internalized prejudices and self-stigma: “What helped me a lot after I entered the medical field was being in a support group. Finding people like me, a group of normal kids with their own life, career and workBecause the first one to brand it was me,” he emphasizes. “Now I’m phenomenal in every way, why tell more people about it?”
During this time, most of the relationships Roberto had were also with HIV-positive people, “without looking for it,” he notes. “When you get a diagnosis, all the uncertainty and fear sets in. I know many serodiscordant couples (one of whom is HIV positive and the other is not). If you know that you cannot be detected during treatment, what does non-transmissible virusno problem. After all, it’s about have information“
Taboo of sex and sin
Information is exactly what is missing, especially among heterosexual people. “It’s unbelievable at the moment, but there’s a lot of ignorance here. In the gay world, this is quite normal because many of us are diagnosed, but in my heterosexual community, many smart and educated people do not know that treatment exists. How is this possible? – asks Roberto.
“Someone who has diabetes can say this, but not because the origin is sex, and when you tell it, you somehow explain what happened. In my case, I still don’t even know how it happened because I was always very careful, and I risk that they won’t believe me because I didn’t believe it myself. It also has to do with homophobia, there’s a lot of mixed stuff there,” he adds.
In addition to information, Roberto believes that the visibility of influential individuals is desirable. “If someone popular in politics, a singer or an actor, stepped forward and spoke about it, we would gain a lot. And many of us live like this,” he adds.
Sara del Arco, activist known online as La Vecina Negra. / Berta Delgado (YANSTORE)
First discrimination, then stigma
Sara del Arcoborn in Ceuta 32 years ago, grew up in Madrid with her adoptive family and lived her life with an infection she acquired from her biological mother, whom she saw die of the disease.
Your call case transmittedn vertical, occurring during pregnancy, childbirth or breastfeeding. It is an exceptional situation in Spain thanks to prenatal treatment and control, but it still affects 150,000 people worldwide every year, according to the WHO.
Del Arco, who in the associative sphere accompanies other people with HIV and on social networks calls himself “Black neighborexplains why discrimination precedes stigma: “We are taught to discriminate. Discrimination arises from misinformation and instilling fear. Taken together, this pathology is associated with sex, which is not considered in society, which generates negative mystery and rejection. People associate this not with behavior, but with a face, which is then easy to remember. This is pure marketing. So you learn to discriminate,” he describes to SINC.
“With socially acceptable pathologies, such as cancer, they even show affection towards you. That doesn’t happen with this one. They even deny you admission to school.”
Sara Del Arco, activist
“With socially acceptable pathologies, such as cancer, they even show affection towards you. That doesn’t happen with this one. They even refuse to enroll in school,” he emphasizes.
The goal “is to make that reality more visible,” says Del Arco, who has lost friends after speaking out about his condition. “I’m still the same person, even if you don’t know everything behind it. You have no right to change your attitude towards me just because you now know this detail, since nothing much has changed.”
Proud visibility
So that, in essence, nothing changes in people, and in society, starting from 2022, Positive Pride (PRIDE+) is celebrated – a set of events topped with a Positive March – a unique demonstration in the world defending the dignity of people with HIV. and invites them to “come out of the closet.” This year it took place on October 19 between the Ministry of Health and the Reina Sofia Museum under the motto “Our life destroys prejudices”, attracting more than 5,000 people.
“This is a proposal that we are implementing at Cesida to value transparency as a tool for people with HIV to fight stigma,” he tells SINC. Oliver Marcosgeneral secretary of the organization. “This is a right that we all have, not a duty, but it is a tool social transformation “It allows people to understand that many people have HIV, that it does not limit our lives medically and therefore should not be limited socially either.”
“The response has been too focused on scientific and medical advances. It does not address how people with HIV have experienced infection or the difficulties and barriers they experience in work, healthcare or the community.”
Marcos, who also provides case management, believes the HIV response has been too focused on scientific and medical advances. “It doesn’t talk about how people with HIV have experienced infection, or what difficulties and barriers they face at work, in health care or in society,” he laments. “It’s like putting a layer on top because people don’t die anymore these days,” he adds.
“Although we are alive and can easily build our lives today, we have to face fear, shame and even discrimination, differential treatment in health care, when applying for insurance or obtaining a professional position,” the educator condemns. “They are ignorance or societal prejudices that perpetuate certain barriers,” he concludes.
That’s how he was reminded Emilio de Benito, historical figure, retired journalist Country and Vice President of the National Association of Health Informants (ANIS), Uganda Winnie ByanyimaUNAIDS Executive Director and UN Under-Secretary-General, visiting the exhibition a month ago Positive life: “Combating discrimination and stigma remains the cornerstone of the fight against AIDS.”
