I was unaware of HIV entirely until my uncle passed away at the age of 28 after a late HIV diagnosis. It arose that he had been living with HIV for around 10 years before a definitive diagnosis, which by that time the HIV had developed into AIDS. I was only 12 years old at the time and did not fully understand the effects of the virus. My family and I all lived in the same house, we were all very close, but still no one knew that my uncle was suffering. We were uneducated about HIV and did not know the full extent of his illness. It was only after his death that a lot of us learnt about the virus and its effects.
My uncle Josafá was a beautiful man and even though I was only young when he passed away, he taught me so much. He had amazing friends and family surrounding him and our house was always filled with laughter and fun. Him and his friends used to gather together at my grandmother’s house where he loved to dress up and dance around with us, in his high heels, singing Rick Astley songs. He loved Rick Astley. He also loved his family and we loved him greatly. When he fell ill with AIDS in the mid 90s, the doctor believed that he had caught the virus around 1984. The first case of HIV in Brazil was in 1982. When the virus emerged, it was primarily thought to be spread between men who had sex with men (MSM) and became known as “GRID” (gay-related immune deficiency). Although it was not entirely determined that Josafá had contracted the virus via sexual transmission, he was a gay man, and it is likely that he had contracted HIV through MSM. Transmission rates among men who have sex with men in Brazil remains fairly common with a prevalence of 18.4% (2016) however the stigma associated with HIV only being of risk to gay men is wholly false.
Other factors continue to play a role in HIV transmission, but back then no one wanted to believe that anyone could be affected by the deadly virus. Sex work in Brazil is legal and in 2015 it was found that only 17.5% of sex workers in Brazil were regularly tested for HIV. It was additionally found that just under 50% of sex workers living with HIV were unaware of their status. Another factor that played a role in HIV transmission rates in Brazil was the introduction of crack cocaine in the mid-late 1980s. The illicit drug swiftly circulated across the cities of South America and dealers in the cities were known to explicitly exploit those in the poorer areas and favelas. People who injected these sorts of drugs began to fall ill with HIV, since the virus is transmissible through blood, which in turn further escalated the HIV/AIDS epidemic. People in the 1980s were prejudice towards gay men as a result of the HIV epidemic but realistically it was not just men who had sex with men who were responsible for the HIV/AIDS epidemic. Regardless, it was not their fault. Those who chose to have unprotected sex were inevitably at risk of contracting sexually transmitted infections but testing back then was not widely available and stigma that came about from HIV transmission surely increased the fear of testing when it was already scarce.
My uncle Josafá had been asymptomatic for many years. The doctor predicted that he most likely contracted the virus in his late teens. He was never a big man but after a while I remember clearly that he began to wear 2 pairs of jeans, one underneath the other due to his rapid weight loss. Regardless, he still never assumed that he was severely ill. That was until he was diagnosed with late stage HIV. My mother cared for him whilst he spent his time in and out of the hospital, however my grandmother remained in denial the whole time. God forbid the church found out about this. Our family was largely religious, but we were not the only ones. Brazil was and is still very much a church orientated country. When neighbours would ask why my uncle was unwell, they hid the truth and said that he was sick with cancer. To this day I still believe that one of the main reasons why he and so many others never got tested was because for them, knowing that they were HIV positive was much worse than being in the dark about their status. After what happened to my uncle, my mum did all she could to look after another one of his friends who was diagnosed with HIV. Fortunately, he was diagnosed much sooner than my uncle and began treatment to prevent the progression of the virus.
As a 12-year-old girl, I still remember to this day feeling scared, and most of all sorry. I hated that something so imperceptible could cause so much damage. The days that weren’t spent in hospital, were spent at home with us. It felt like we were on edge the whole time, not knowing what to do or what to say to make him feel better, but we liked to think that we filled his days at home with love and compassion. One day I remember that he was in a lot of discomfort, his body was covered in red patches that looked like bruises and he was endlessly itching his frail body. He had asked me to put some cream on his back to ease the sores. I froze. I wasn’t sure if I was the one who should be doing that, but he just smiled and asked again kindly. I took the cream and helped to smooth it over his sores. I like to think I helped him as much as I could in his last few weeks, but there wasn’t much else that I could do. And then one day he went into hospital and he never came out. That was in 1994.
Skip forward to 2020, an increasing number of countries are beginning to take a stand to the HIV/AIDS epidemic. In 2014, UNAIDS published targets of 90-90-90 whereby 90% of people living with HIV are diagnosed, 90% of those receive antiretroviral treatment and 90% of those are virally suppressed. Brazil is so close to achieving those goals but there is still a lot more than can be done globally in return to the epidemic. Nevertheless, Brazil has continuously been known for having a strong response to the HIV/AIDS epidemic. In 2013, the Brazilian government began to provide free antiretroviral treatment to all HIV positive individuals despite their HIV stage. This largely helped with decreasing the death rates among those who were living with HIV. However, testing was still fairly inadequate. That was until the beginning of 2019 when the Ministry of Health in Brazil began to offer free self-tests for HIV diagnosis. Testing in Brazil was previously only available in private pharmacies and may have explained why many people did not test due to poverty among the poorer communities in Brazil. The HIV/AIDS epidemic is currently considered as stable in Brazil with a HIV prevalence amongst adults at 0.5%. Regardless, approximately 30% of the global population are unaware of their HIV status and this is something that needs to be addressed worldwide.
When I myself read articles about U=U or meet people living with HIV, I think about my uncle Josafá and how he could have achieved so much, if only he had tested and known his status sooner. It frustrates me that there is still so much social stigma attached to testing and HIV in general. The fact is that the attitude towards HIV testing is still largely negative, especially in the South American culture, if we all were more open minded about testing maybe people would feel less afraid to test. The only way to know your status is to test. There is no time like the present.
1966 - 1994
Written by - Izabel Woskett