After 40 years of HIV, stigma still affects most HIV positive

Four decades after the start of the AIDS epidemic and the advance in prevention and treatment therapies, stigma and discrimination are still part of the daily lives of most people living with HIV in Brazil.

A study by Unaids (United Nations program on HIV/AIDS) with 1,784 HIV-positive people shows that 64% have already suffered some type of discrimination: 46% through comments from family, neighbors and friends, 25% through verbal harassment and 20% arrived to have lost source of income or were rejected in a job offer.

The data enabled the creation of a stigma index in relation to people living with HIV/AIDS. About 15% of respondents report having suffered discrimination in health services in the 12 months prior to the survey, which was carried out in seven Brazilian capitals in 2019.

Among the attitudes of health professionals were mentioned, for example, avoiding physical contact (6.8%) and breaking the confidentiality of information about health (5.8%). This totally contradicts SUS protocols and laws that guarantee that no one should go through this type of constraint or aggression.

The stigma is such that 81% of those interviewed by Unaids say it is still very difficult to reveal their serology to others.

Retired professor Jenice Pizão, 62, who has been living with HIV since 1990, says that, although antiretroviral therapies have advanced a lot in recent decades, giving people the possibility of quality healthcare, stigma remains the main obstacle in the routine of seropositive.

“We have treatment, we have 40 years of information, but there are many reports of people who are in great mental suffering, very vulnerable, for fear of prejudice. To this day, there are people who point out each other in the street and say that evil, horrible word , she says, who founded the MNCP (National Movement of Positive Citizens) in 2005.

For Pizão, this stigma not only makes life difficult for those who have the virus, but also prevents other people, out of fear, from taking an HIV test and/or not seeking care services to start treatment early. “When they go looking for it, it may be that they already have an AIDS-related illness.”

She was found to be HIV positive when she had a checkup to investigate hair loss, which had nothing to do with her HIV infection. At that time, the doctor told him that the prognosis was very poor, that his patients had a survival of at most six years after diagnosis.

“I had a teenage daughter at the time and I only thought about the impact that it would have been for her to have a mother dying of AIDS, the suffering and prejudice she would face. Not that today would be any different”, says the activist from Campinas (SP), grandmother of three grandchildren.

Pizão says that, like many cisgender and heterosexual women, she did not see herself as part of a risk group and felt immune to the virus. “I wasn’t a sex worker, I didn’t inject drugs, I had a boyfriend every six months who wasn’t gay,” she says.

Taking care of physical and mental health and joining other people who faced the same reality was the way for the teacher to face the new reality. “Activism in AIDS was crucial to get out of the victim’s chair and pursue public policies, fight for life,” she says.

Diagnosed with HIV in 1989, USP mathematics professor Jorge Beloqui, 72, experienced all the advances in prevention, diagnosis and treatment methods, but says that the stigma and prejudice remain very similar to that of the 1980s.

“Today, when diagnosed, people don’t know anything about viral load, CD4 cells and everything else, but everyone knows about the discrimination and stigma they will face. Discrimination is ingrained in our society. It is a very big obstacle for testing and to continue with treatment. Sometimes, the person does not get treatment because they do not have privacy at home”, says he, who works at the GIV (Grupo de Incentivo à Vida), an organization that supports HIV-positive people.

Beloqui has had an undetectable viral load since 2004. In his opinion, people need to accept the fact that we live in a society where HIV is present. “It’s no use thinking: ‘my friends are not promiscuous, I don’t have people with HIV around me.’ With that, people don’t want to use condoms, they don’t want to use PrEP and PEP [profilaxias pré e pós exposição].”

Decorator Américo Nunes, 60, says that he sees in young people today the same fear of discrimination he felt when he discovered he was HIV positive in 1988, six years after the first case reported in Brazil. He had no symptoms but decided to get tested for HIV.

“With the positive result, I received a death sentence. The doctor said: ‘you have AIDS, your life expectancy is at most six months. There is no treatment, no medication, nothing'”, he says.

He remembers that, at that time, there was no difference between having the HIV virus and having the AIDS disease. “Then came ghosts: do I tell people? If I told my parents, I would have to reveal my sexual orientation. If I told friends, I was afraid of discrimination.”

As the months went by and the realization that he was still alive and without symptoms, he told a friend. But the family only found out many years later, when he was already a volunteer for an NGO supporting AIDS patients. He is currently the director and founder of Instituto Vida Nova, in São Paulo.

​Aids Agency launches webseries on the history of the epidemic

This Wednesday (1st), World AIDS Day, the AIDS News Agency launches the webseries “HIV 40 Years: AIDS and Its Stories”, at CineSesc, in São Paulo.

With free entry, the film will be shown at 8 pm and features stories from different generations: Beto Volpe, Jenice Pizão and Américo Nunes Neto, all three are over 60 years old and have been living with HIV for at least 30; and three young people who received the diagnosis less than ten years ago: Marina Vergueiro, Priscila Obaci and Diego Krausz.

They are stories of resilience and resilience, in which the characters report how each one experienced the revelation of the diagnosis and how they followed their path, despite prejudice.

Respondents shared information ranging from changes in treatment to the HIV status over the 40 years of the virus’s existence. Journalist Roseli Tardelli conceived the webseries, conducted the interviews and signed the direction along with Aline Sasahara.