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One of the first persons to publicly admit to being infected with HIV and fight for this cause, Pedro Silvério Marques, now aged 73, talks about the death sentence that didn’t become true and of how homosexuals were linked to the infection and discriminated against, due to this disease. Many years later, the disease can be effectively controlled; however, the stigma persists.

Pedro Silvério Marques in the Príncipe Real Garden

Up until 1974, homosexuals in Lisbon were still a marginalised community, recalls Pedro. After 1974, a certain degree of democracy began to be felt, as police persecution and raids slowly subsided. As younger, more progressive people started enjoying the nightlife and visiting gay bars, more gay-friendly venues started emerging, where people gathered and felt less restricted. However, it wasn’t long after that HIV appeared. The early 1980s saw a rise in the number of people infected with the human immunodeficiency virus, which causes the human immunodeficiency syndrome (AIDS).

At the beginning, the community was somewhat in denial, as it was often heard that ‘the disease would not come to our country.’ In 1983, when the first cases started appearing in Portugal, ‘society became alarmed and, in people’s minds, the disease was immediately linked to the gay community.’

Discrimination against homosexuals increased considerably at the time. The same occurred within the gay community itself, when it came to homosexuals with HIV: ‘Even when highly effective treatments started appearing 10 years later, around 1996/97, most people still felt scared when a member of the community said they were seropositive’.

Fear even among doctors

Maria José Campos, a doctor who followed the entire HIV story, confirms the fears experienced by society when faced with this virus, little know at the time. Maria José Campos started working as a doctor at the Egas Moniz Hospital, in Lisbon, which was precisely where the first patients diagnosed with HIV in Portugal were hospitalised: ‘As strange as it may sound, this was an extremely enriching experience.’ 

The Egas Moniz Hospital was one of the hospitals ‘most actively engaged in studying and treating people who were infected’, although it had little to offer at the time. This experience would shape the doctor’s entire career. Maria José Campos underlines that there weren’t many healthcare professionals willing to work in the area, even because it was a new disease. ‘Many doctors and nurses had great fear of caring for infected patients, as knowledge of the disease was scarce.’ 

The specialist in internal medicine, who has been treating HIV patients for over 30 years, explains that there were many wrong ideas about the way HIV was transmitted, and mostly about how it was not transmitted. ‘People were terrified and healthcare professionals were no different. They have the same prejudices and the same wrong ideas. Unfortunately, they engage in discrimination just as the rest of society.’

From fatal disease to chronic disease

Pedro Silvério Marques, coordinator of the Centre Against HIV Discrimination for almost a decade, is part of the group of survivors to whom it was said, upon being diagnosed, that there was no treatment for HIV and their life would be cut short. Pedro prepared himself to die after the doctor told him that nothing could be done.

AZT, the fist medicine approved for the treatment of HIV, appeared in the following year. At the time, tells Pedro, ‘it was debatable whether I should take this medicine or not, but I said I wanted to take anything that I could.’ Pedro already read and studied a lot about the issue and tried new medicines as they came about. ‘In 1988, when protease inhibitors appeared, I was taking nine tablets in the morning and nine in the evening. I took these new medicines together with other that were already failing, instead of changing my therapy completely. That’s how things were done back then. Because of that, I failed to get better faster.’

After this experimenting, new exams that allowed doctors to understand the various mutations of the virus and identify the most effective medicines started coming to the fore. ‘My viral load has been undetectable for 20 years, since 1999, and I have no health problems, apart from my age’, jokes Pedro. To get here, Pedro had to deal with the side effects of all his medication; however, he faces the situation light-heartedly, as he never felt ill.

Pedro Silvério Marques explains that he wanted to do everything he’d ever dreamt of in the first years after being diagnosed. Every year he travelled far and enjoyed life to the fullest, as he didn’t know how long he’d have left. However, this lifestyle made him give up jobs he enjoyed and prevented him from having a fulfilling relationship. He lived for the moment and lost touch with people and places. As he now confesses, ‘I missed being part of something and it was difficult to live that kind of life.’ It took him a few years to learn how to deal with his emotions and face the challenges posed by his new life.

A medical revolution

Pedro Silvério Marques underlines that activists played a key role in introducing treatments. As an activist, Pedro was a member of Associação Abraço, an association dedicated to supporting people with HIV, and led a very active group in the treatment area. He later continued this work at the GAT - Grupo de Ativistas em Tratamentos (Group of Activists for Treatment). ‘The group worked very closely with European organisations engaged in discussion with pharmaceutical companies regarding all aspects related to medications, trials, what they were doing, which treatments were being launched. At the associations we knew what was happening very early on, because we were at the forefront of events.’

Doctor Maria José Campos remembers this era: ‘Society became a little paralysed at the time. The terror, the fear of an unknown virus, caught people unawares’. The doctor explains that official entities took a long time to react and adopt measures, which is why AIDS came about. ‘The associations appeared because it was necessary to support patients and help prevent the disease.’

‘It was only when the highly effective antiretroviral therapy appeared, that these people, who seemed to be living in limbo, felt almost reborn from one moment to the next. To us this was wonderful; it was amazing to stop being doctors who helped people to die to become doctors who helped people to live.’

Maria José Campos, doctor

From the moment effective antiretroviral medications started to appear, patients started leading normal lives. ‘Until then, the situation was extremely painful. People died; we had no effective treatments to offer; all we could do was mitigate their suffering.’

Everything changed when we realised we could use several treatments to fight this infection, instead of just one; this marked the beginning of the treatment revolution. ‘The progress made in the treatment of this infections is fascinating’, comments the doctor, visibly touched. When she started working, AZT was the only medicine available and ‘our hopes about this medicine weren’t high. We used it, but we knew it was not the solution, often because it caused side effects and some people did not respond. But it was very effective in a small group, something I found most curious.’

‘It was only when the antiretroviral therapy, a highly effective combination of three or more medicines, appeared between 1997 and 1998, that we realised that these people, who seemed to be living in limbo, felt almost reborn from one moment to the next. To us this was wonderful; it was amazing to stop being doctors who helped people to die to become doctors who helped people to live.’

Pre-Exposure Prophylaxis (PrEP)

João Caçador is one of the few figures in the Portuguese society who owns up to being on Pre-Exposure Prophylaxis - PrEP. People don’t know what PrEP is and there’s a huge stigma around it, as it’s immediately equated with “unprotected sex” and “people with HIV”. ‘It’s wrong, but this stigma also affects the LGBT community in general,’ explains João Caçador.

PrEP is a daily medication shown to have an efficacy of 90% in preventing HIV transmission. This regime, which consists of a daily tablet, is indicated for a wide range of people, irrespective of sexual orientation. Its goal is to reduce the probability that people at high risk of infection will contract the virus in case of exposure.
A musician, João Caçador is involved in the “Fado Bicha” project, which seeks to bring specific subjects to the fore: LGBTI issues, racism, xenophobia and reflections upon the human body. The musician has participated for about two years in an educational project developed by the ex aequo network (an association of young lesbian, gay, bisexual, transgender and intersex people, and their many supporters), a group of people that visit schools to talk about gender identity, gender equality, gender expression and sexual orientation. 

‘We engage in direct contact with the pupils and realise where things stand in relation to several ways of thinking, at least in Lisbon schools. We’re starting to witness a transformation in young people’s mindsets, brought about by films, television and their own families. However, knowledge is still scarce when it comes to certain issues, namely HIV.’ João Caçador seeks to play an active role in society: ‘It’s something I need to do as a person, both as a homosexual and as someone who wants to be accepted and respected by myself and others, as I believe to be my due.’

A staunch PrEP advocate, Doctor Maria José Campos talks about painful experiences, not only within the medical community but also with the gay community. ‘If there’s something I value, that something is freedom, and I believe freedom also means that people should be able to have sex without having to worry about whether or not they might infect their partners.’
The physician draws on her own experience to elaborate on this issue. She tells us she feared becoming pregnant when she started her sex life, but considered herself fortunate to be part of a generation that already had access to the contraceptive pill: ‘I was really relieved to be able to take the pill. I think PrEP is as important to these people as the pill was important to me. I think it’s ridiculous, unscientific and even outrageous to refuse PrEP to those who need it.’
According to Maria José, PrEP is a rare medical and scientific advance. ‘People only need to take a medicine to avoid getting infected. This isn’t just wonderful, it’s really extraordinary.’

PrEP is provided by the National Health Service, but eligible people must be followed by a specialist physician at a hospital. 
João Caçador explains that he has to go to a hospital every time he needs his medication. Therefore, he believes, as does Maria José Campos, that medicine should be more easily accessible and made available to the community, namely by HIV associations and health centres.

A staunch PrEP advocate, Doctor Maria José Campos talks about painful experiences, not only within the medical community but also with the gay community. ‘If there’s something I value, that something is freedom, and I believe freedom also means that people should be able to have sex without having to worry about whether or not they might infect their partners.’
The physician draws on her own experience to elaborate on this issue. She tells us she feared becoming pregnant when she started her sex life, but considered herself fortunate to be part of a generation that already had access to the contraceptive pill: ‘I was really relieved to be able to take the pill. I think PrEP is as important to these people as the pill was important to me. I think it’s ridiculous, unscientific and even outrageous to refuse PrEP to those who need it.’
According to Maria José, PrEP is a rare medical and scientific advance. ‘People only need to take a medicine to avoid getting infected. This isn’t just wonderful, it’s really extraordinary.’

PrEP is provided by the National Health Service, but eligible people must be followed by a specialist physician at a hospital. 
João Caçador explains that he has to go to a hospital every time he needs his medication. Therefore, he believes, as does Maria José Campos, that medicine should be more easily accessible and made available to the community, namely by HIV associations and health centres.

‘We encounter great resistance from the National Health Service when it comes to implementing this kind of prevention, as we previously did in relation to condom distribution, syringe exchange programmes, risk reduction in drug users and provision of support to sex workers. These advances are very slow…,’ explains the doctor.

A stigma that persists

Despite saying he’s rarely felt discriminated against, Pedro Silvério Marques believes he was fortunate to have a supporting family and stresses that homosexuals are actually those who criticise him the most for being seropositive. For many years Pedro led a centre dedicated to fighting stigma and discrimination, a project developed by the GAT - Grupo de Ativistas em Tratamentos (Group of Activists for Treatment), in partnership with Ser+. It was there that he heard many different stories. ‘People suffered the most in their jobs and within their families. For us, the most difficult was to achieve results. We prepared everything, forwarded all documents, submitted our claims, but received no responses. Antidiscrimination laws are not effectively enforced. It happens in all areas; whether it’s HIV, racial or gender discrimination; problems remain unsolved.’

At this point in the conversation, we realised Pedro Silvério Marques has not left activism behind, despite his words to the contrary at the beginning of the interview. The proof is a new initiative he didn’t manage to hide. ‘We are thinking of creating a project in the area of diseases, not just HIV, together with several associations, and to create an entity, a platform to respond quickly to discrimination issues related to any disease.’ This project, which started being put together early in the year, is now in “lockdown”, because of the Covid-19 pandemic, says Pedro. ‘But several work groups should be able to start working soon, even if only remotely. One example is the creation of the platform. However, I do have some doubts. I fear it’ll become just another structure.’

João Caçador agrees that these initiatives are important. He affirms to feeling discriminated against on a daily basis, for being homosexual. ‘I feel people don’t treat me in the same way they would treat a heterosexual man. My effeminate appearance, the way I walk and display affection, the way I dress, talk and act in general still bother a lot of people.’

João affirms that the society must understand that sexual diversity exists and that ‘this diversity should be visible. It’s not enough to say that people should be able to be who they want to be and then deny them a place in society.’ João explains that adequate structures should be created, so that ‘every person can lead a dignified life, irrespective of their sexual orientation, identity or ethnicity’. The musician believes that discrimination stems from a lack of reflection, representativity and information, amongst other factors.

Despite his involvement in training sessions at several schools, João believes that sex education in Portugal has failed. ‘When I visit schools, I feel that teachers continue ignoring these issues. Sex education depends on associations of volunteers, which is by no means a satisfactory approach.’

Doctor Maria José Campos recalls the efforts undertaken by associations over many years, for the purpose of reducing risks. ‘Condom distribution, sharing of injection materials, namely through syringe exchange programmes, and, on the other hand, a huge campaign to fight discrimination against seropositive people.’ However, the doctor feels somewhat frustrated, as she knows discrimination against people with HIV still exists. ‘Prejudice is less evident, but exists nonetheless and the proof is that people don’t talk about their condition at work and many don’t even tell their own families.’ 

The doctor believes that the fight against discrimination has failed. In her opinion, treatment has advanced considerably, as the life expectancy of people with HIV is identical to that of others, but ‘very little has changed’ when it comes to discrimination. ‘Solving this issue is fundamental for things to move forward. If people feel discriminated against, they won’t talk to their assisting doctors, their families, their friends, their colleagues or even their parents. Fear remains. People remain invisible. And when we’re invisible we don’t exist.’

The Príncipe Real Garden

We talked to doctor Maria José Campos, former activist Pedro Silvério Marques and musician João Caçador at a location that has always been iconic to the homosexual community: the Príncipe Real Garden.
Maria José tells us that the Príncipe Real neighbourhood has always been a gathering spot for the gay community, especially at night. The neighbourhood was home to many events and venues favoured by the homosexual community for many years. ‘It was here that the first Pride Parade took place, in 1997. I remember there were a few hundred people and the DJ stand stood where the children’s playground stands now,’ recalls the doctor. ‘It’s always here that the Lisbon LGBTI+ Pride Parade starts, even today.’

More than 30 years of HIV in Portugal

About 25 thousand people have died of HIV in Portugal since the early 1980s. Nowadays, Portugal is the fourth country with the highest number of diagnosed cases per 100,000 people. However, international specialists affirm that the country is an example to follow, particularly in what regards the effort to diagnose infections.

According to the estimates of specialists working at the Dr Ricardo Jorge National Health Institute (INSA), 4,000 people diagnosed between 1983 and 1996 are currently followed by doctors. This number totals 17,000 and 14,000 for people who found out their serological state in 1997-2006 and people diagnosed over the last ten years, respectively. According to the latest INSA report on HIV/AIDS, one thing is certain: ‘the time between the diagnosis of HIV infection and death has increased steadily over the three decades of the epidemic.’

Portugal has achieved the three HIV/AIDS goals set by the United Nations for 2020 (UNAIDS): 90-90-90. As of 2020, 92.2% of people infected with the Human Immunodeficiency Virus (HIV) had been diagnosed, of which 90.2% were receiving antiretroviral treatment (the medicines that fight the virus) and, within this group, 93% presented with undetectable viral loads. The goal set for 2030 is 95%. People working in this area are sceptic about these numbers, as they believe many people are not accounted for, as they have no access to healthcare, which somewhat skews these statistics.

Text: Mafalda Ferraz
Photography: Carlos Morais da Silva, Francisco Levita, Nuno Correia
Video: Eduardo Cruz, Jorge Ramalho, Nuno Loureiro, Nuno Morais
Infographics: João Ferreira

Acknowledgements
Ricardo Fuertes - CML
Sofia Crisóstomo - Coordinator of Lisbon Without AIDS/ Fast-Track Cities Initiative - GAT
Pedro Silvério Marques - Economist
Maria José Campos - Doctor
João Caçador - Musician
Maria Eugénia Saraiva - Portuguese League Against AIDS                                                      
CheckpointLX/GAT - Community centre for screening of HIV and other sexually transmitted diseases

Additional information available on:
https://www.lisboa.pt/lisboasemsida
https://www.lisboa.pt/covid-19-medidas-e-informacoes/a-cidade/saude