“Vertical” was originally published in spanish in january 26th 2016 on Roja Vida by L’Orangelis Thomas Negrón, member of ICW’s Chapter of Young Women, Adolescents and Girls, living in the Hispanic Caribbean, Puerto Rico.
This is the first time I write about The Cure for HIV in my blog. I never before had written on this subject and I had, and still have, some contradictory feelings and thoughts, but things have happened in recent months and I think it’s time.
As you may know, I grew up with HIV and no, I don’t know what it is live without it, but not for its time in my body, but the time I’ve been aware of its existence in me (since I’m 8 years). HIV is part of the group of things that construct my identity as a human being on this earth and its societies, and has predisposed and put me in situations that, in other ways, possibly haven’t occurred. For better or worse, many of the most important and decisive things in my life, HIV has had an influence. From my closest friends, my most significant works and experiences, thought the way I see the world and understand it. All this and more is due to HIV, and having the thought that the HIV would no longer be part of me, scares me and gives me that loss feeling. It is a kind of Stockholm syndrome, HIV being my kidnapper.
The cure for this syndrome, in my case, I think it would be to realize that there are hundreds of young people who have no access to medication or who simply don’t take it, for any reasons, and they are dying. That doesn’t matter how I may feel when we talk about the lives of hundreds. Currently the only or main alternative we have to keep the virus low, is to take medication, but what do we do with those who no longer have more options? What do we do with those who are weary and tired? I have no answer, but what if we talk about a cure?
The vast majority of global and national strategies are based on the medicalization and condomization of people with HIV or who are “at risk” to reach the “end of AIDS“, not the End of VIH by the way. So, we have strategies that talk about “detect“, “treat” and “suppress“, but not necessarily speak of access to mental health, sexual pleasure, institutionalized and social stigma, free access to information and human rights. People talk about reducing viral load, but suddenly many people make it sounds as easy as lowering the volume of the music, when between the viral load and strategies, are human beings who carries the virus in our blood and medication by our mouths.
Treatment now is prevention, and no, I don’t speak of Truvada as PrEP. I speak that once you’re undetectable, the possibility of transmitting HIV decreases enough to not infect someone else, but God, Buddha, Allah, Pachamama, Krishna and Changó keeps you from having sex without a condom!! It sounds cute “Treatment as Prevention“, but if people will call us irresponsible when we are undetectable and have sex without a condom, so why we even use both words in the same sentence? And I don’t really think it’s because of other STI or pregnancy, because usually strategies are designed to make us less infectious.
Getting tired for a while is valid, and also getting tired indefinitely. For more wishing that people have on young people who grew with HIV, to be 100% adherent, at the end of the day, the ones who places in their mouths the pills and swallow them, are us. When we speak and say “My Body, My Territory” is not only to decide whether or not to abort, it also comes to taking medication or not, going to a protest or not, having sex or not. It’s the right to have alternatives, availability, accessibility and the power to decide on them although the decision is appropriate, correct or NOT.
Not every young person who doesn’t take the medication, do it on purpose or in a conscious manner. Not all the young people who don’t take medication, do so because they have surrendered or because they are irresponsible. The desire to live, to be healthy, to have goals and dreams, is NOT synonymous of adherence. If I think about this, with this co-dependent mindset, it makes me see ourselves as machines of taking medication, it’s makes me feel that we were born to take medication and that no matter what we want, HIV is what determines and decides what is possible for us and what’s not. This kind of view, also makes me feel like if I’m resting us humanity, and that we are nothing more than a diagnosis. And this does NOT mean that I am against medication.
Willing to live is human, just as willing to be healthy, to have goals and dreams, regardless of a diagnosis. Good and bad things will always happen, and there will always be barriers, and because of this reason, it is necessary to develop new strategies and ways to maintain good health and quality of life. Strategies that are based on dignity and participation; shifting the power “over“, for the power “of“, “for” and “with“. Inclusion, because integration is not enough. Empowerment to speak out, instead of lying every time we go to the doctor when we are not adherent, because we don’t want to hear the nagging again (I’ve been listening since he was 15 and has not changed doctor after doctor). Including medication, but also advocate for a cure.
Including medication, but understanding that we are whole beings, and that HIV does NOT have a Velcro that you can take out to treat without having to deal with the rest. Including a cure, which currently does not exist (but that doesn’t mean we won’t ask for one), but it would be a final solution to the deaths among young people. As someone who has grown up with HIV, I get tired and always has complications with adherence. However, I know my body and I stay aware of how I feel, and having this consciousness supports me. But consciousness is not all, I have to keep this present in my mind all the time and that is no simple task, even after all this time. If anything has supported me is to be honest with myself and my health care providers, recognizing which my barriers are, and from that honesty with myself, look for my true alternatives from my reality.
Even if we don’t like it, speaking of adherence it is no longer enough. Much less when we speak of vertical transmission, that although the incidence has declined, those of us who still here, sometimes are the ones having more difficulties, and no wonder. A lot is required, a lot of support, mind and heart, because sometimes it feels like we are in danger of extinction.