Since 2016, Daniel Lima has been living with HIV, the acquired immunodeficiency virus. He started treatment after a few months by SUS (Unified Health System) and takes two pills a day, preferably in the morning, after going to the gym.
At 32, the writer and pharmacy supervisor has no side effects and, nowadays, he even forgets he has HIV. “I only remember that I have it when I go to take the medicine or when someone says something nonsense and I go there to discuss it”, he says.
After receiving his diagnosis, Daniel spent a good deal of time helping other patients. That’s why he created an Instagram page called “Positivei”, where he shares ideas, stories, and other people’s stories.
When he published the last chapter of his stories, his followers were saddened by the decision, but the writer did not cut off contact, he continues talking and helping people who seek him out. Also, created a podcast.
“But I’m also much more than all that. I work as a supervisor in a pharmacy, from Sunday to Sunday, until 11 pm. I’m going to college, I go to the gym and, currently, I live in Santa Catarina, and I have my family in São Paulo. It’s all right,” he says.
Today, he sees HIV as a small detail in his life. “I have a great life and I see only a detail in it. HIV is more in people’s heads than in my body. Even because I’m also undetectable”, he explains.
This means that the drug treatment is working and, therefore, the person no longer transmits HIV during sexual intercourse. To be undetectable means to be untransferable. With this, it is possible to prevent the case from evolving to AIDS, which is when the condition enters an advanced stage, already with opportunistic infections, such as tuberculosis or neurotoxoplasmosis.
“I haven’t stopped eating anything and I don’t feel like it either. I just can’t drink alcohol in excess,” he says. “I go out on weekends, I’m single and I enjoy all the things in life. HIV is on people’s minds.”
Even though Daniel is someone well resolved with his diagnosis, that doesn’t mean that people should downplay the situation. “You can’t say that it’s ‘nothing’ when someone decides to open up about having HIV. I know they just want to be nice, but be careful not to diminish. Just offer a hug, hug and say that you love her. You don’t even need to talk. so much, just listen,” he says.
Adherence to treatment is essential
It is necessary to reinforce that no one is romanticizing the diagnosis, but, contrary to what many people still think, having HIV and treating it correctly does not prevent this patient from having a normal life. Also because medications have evolved a lot over time and, nowadays, they cause few side effects compared to the past.
This issue is explained by Ricardo Diaz, professor of infectology at Unifesp (Federal University of São Paulo). According to him, any medication can have side effects. “There are people who take aspirin and feel sick. But the medications [contra HIV] today they are so modern that, for the most part, they have no effect. This is a great advantage because, before, they had a lot of side effects,” he says.
In the past, the patient also needed to take several pills, but now it is possible to find drugs with more “friendly” dosages, with little need for adjustment, according to Ledívia Nogueira Espinheira, infectious disease and professor at Unime Lauro de Freitas College, in Bahia. “We live a great evolution in this aspect, with the emergence of new drugs, with varying degrees of efficacy and tolerance”, he explains.
For the professor, the problem is that the patients arrive, in different regions of the country, in an advanced state, already with AIDS — causing a whole compromise to his health and with possible sequelae.
Therefore, the sooner this patient seeks help and starts treatment, the better. “If it takes a long time, this person may not even feel it, but the body begins to suffer a lot of damage and degenerates more quickly, affecting bones and tissues”, says the infectologist at Unifesp.
And if it takes too long, the medications may not respond as expected and immunity may not return to normal, even compromising your life expectancy. “Between 10% to 30% of patients do not get a good immune response. After 1 year it even becomes undetectable, but immunity does not return. She does not have AIDS, but life expectancy is reduced”, explains Diaz.
In fact, if this patient treats the disease early, and the drugs show a good response, with immunity returning to “normal”, it has a better life expectancy than someone who does not have HIV, according to the infectologist. “This is really a surprise, but it’s basically because this person goes to the doctor more often. With this, she has the opportunity to discover other comorbidities”, he says.
Prevention and testing
And, of course, all of this has a very big impact on the HIV transmission chain. By treating the patient early, it is also possible to prevent more people from being infected. Therefore, one of the ways to prevent HIV and, consequently, AIDS, is testing. In addition to the use of condoms during sexual intercourse.
“Don’t be afraid to test, we have several specialists all day long at health posts, in addition to free access to treatment. Testing is one of the best ways to prevent,” says the doctor from Bahia.
Espinheira makes another important warning: with the availability of effective and free treatment, many people have begun to take more risks, forgetting that the infection can be potentially fatal. “This worries a lot. We need to prevent it with safe sex practices and adherence to treatment”, he concludes.
HIV still carries stigma
Although it is just a detail in the lives of patients, it does not mean that the diagnosis is free from stigma and prejudice. “It is possible, yes, to have this quality of life, but stigma still affects many patients”, explains Diaz.
According to a study carried out in Brazil, between April and August 2019, with 1,784 people, most people living with HIV or AIDS have already experienced at least some situation of discrimination throughout their lives.
According to the survey “Index of stigma in relation to people living with HIV/AIDS – Brazil”, 64.1% of respondents have already suffered some form of stigma or discrimination for living with HIV or AIDS.
Discriminatory or speculative comments have already affected 46.3% of them, while 41% of the group say they have been the target of comments made by members of their own family. The survey also shows that many of these people have already gone through other situations of discrimination, including verbal harassment (25.3%), loss of source of income or employment (19.6%) and even physical aggression (6%).
Another worrying fact is that almost half of the participants, or 47.9% of them, declared to have been diagnosed with a mental health problem in the last year.