ONCE UPON A TIME... LETTERS FROM ADOLESCENTS LIVING WITH HIV IN latin AMERICA AND THE CARIBBEAN
“Once upon a time…” Letters from adolescents living with HIV in Latin America and the Caribbean
©United Nations Children's Fund, UNICEF Regional Office for Latin America and the Caribbean Calle Alberto Tejada, Building 102, City of Knowledge Panama City, Republic of Panama Post Office Box: 0843-03045 Telephone: (507) 301-7400 www.unicef.org/lac The comments and opinions expressed in this publication do not necessarily represent the official policy or view of UNICEF
Acknowledgments: : To all of the adolescents who shared their stories and messages in this publication. To Tito, Thiago, L’Orangelis, Tami, Leandro, Micaela, Barby and Antonio. To Mariana, Pablo and Carlo to make this initiative possible. To Natalie Bailey, Jessica Rodrigues, Adriana Negry, Hervé Bessou and José Bergua for their collaboration in translating this publication into English, Portuguese, French and Spanish. To Oscar Acuña for the collection design. To Federico Simcic and Gladys Hauck for the graphic adaptation of the four language editions.
ONCE UPON A TIME... LETTERS FROM ADOLESCENTS LIVING WITH HIV IN latin AMERICA AND THE CARIBBEAN
Dear Reader: It is my great pleasure to present to you “Once Upon a Time…”, this short but intense collection of stories and messages that recount to us the challenges that adolescents living with HIV face in Latin America and the Caribbean. This first edition focuses above all on the lights and shadows (pros and cons) in regards to the medication – the famous antiretrovirals (ARVs) that keep AIDS at a distance, but that also create a series of challenges and uncertainties for those who have to take them every day. In 2014, as we celebrate the 25th Anniversary of the Convention on the Rights of the Child and as we are defining the new global development goals we can celebrate incredible advances in the fight against AIDS: for example, we are very close to the elimination of mother-to-child transmission of HIV, and finally there are medicines that enable people with HIV to live happy and fruitful lives. At the same time, we know that AIDS is the second highest cause of death among adolescents in the world, following traffic accidents; that adolescents between 10 and 19 years old are the only age group which has seen an increase in AIDS-related deaths in the last seven years, and that, unfortunately, stigma and discrimination against adolescents are still very far from being eliminated. I sincerely believe that this publication, although it represents a small grain of sand, helps us better understand young people living with HIV, to visualize the challenges they experience, to further understand that they are much more than carriers of a virus, they are like all other adolescents with their anxieties and problems, but also with hopes and dreams for the future. In sum, I would like to profoundly thank all of the adolescents that have shared their stories and personal messages to create this publication: Tito, Thiago, L’Orangelis, Tami, Leandro, Micaela, Barby and Antonio. Also to Mariana, Pablo and Carlo for putting this initiative in place. Bernt Aasen, Regional Director, UNICEF Latin America and the Caribbean
Once Upon a Time…... The bedtime stories and the fairy tales that we tell all of the little ones have a great influence on the way we see the world as adults. The fantasy-like nature of these stories, the illusions they give us, many times distract us from our day to day lives, which are not as fantastical. Once Upon a Time… is rooted in the day to day life. In a world where we have more and more empirical data and in which numbers inform the way we make decisions, we have to ask ourselves, ‘Where does our humanity reside? Where are the people who calculate these numbers?’ Are they just another number? We are quick to rely on statistics, and we forget we are dealing with human beings and all of the problems and situations that affect our relationships. Once Upon a Time seeks to tell this story. It aims to tell the stories of all young people, who were born in the time when we were fighting for the first HIV treatment. It is the story that only we can tell. Today, the advances in HIV treatment offer an unprecedented opportunity to improve one’s quality of life. Nevertheless, each day that a young person is diagnosed with HIV, even with different perspectives, we confront the same struggles before a system that doesn’t prioritize our needs. Our story is also your story. It is a story for International Organizations, Donor Agencies, Ministries of Health and all decision makers. It is for you, because in each one of these stories, there is a life. A personal look at our treatment, our growth and our development. Our relationships, our families, our adherence, institutional violence, love and life’s challenges. These are only some of the unedited stories that thousands of us live, without a face and without a voice. Once Upon a Time… is our story. This is the version of the truth that has been forgotten 30 years after the epidemic began. These are the stories that really remind of us of how much time has passed since it began. And nevertheless, which many of us live as if it has just begun.
There once was an adolescent living with HIV... Well, first, I have been on medication for as long as I can remember. I remember going to the clinic once a month where I was given intravenous medication in addition to the pills I was taking. When I was very young, I would take liquid medication, before I ever knew what it was for. Now I take only pills. The doses were increasing until I was 9 years old, I used to take about 13 pills every day, while the intravenous medication decreased until the late 90s when they stopped the intravenous medication all together. In 2000, when I was 11 years old, my mother died, so I had to learn to take the medication myself without sufficient support, and at age 15 I went to my appointments by myself. I was very careless, and changed therapy twice, unable to make any decisions about my medical care. I never received sex education, although "self-esteem" was the main theme of each class. Regardless, there were too many pills to lead a completely normal life, I was taking them three times a day. They made me sick to my stomach, they changed my mood, made me feel weak and like my body was intoxicated. Sometimes I missed class or just stayed home from school, making my grades suffer. I did not know how to talk to my teachers about my situation. My eyes became yellow and my classmates asked me if I had Hepatitis. I felt the medicine was worse than HIV. For this reason, when I was 14, I stopped taking the drugs until age 20, but continued for the next four years attending my medical appointments to at least know how I was. I felt that not taking medication was the best way to enjoy my adolescence, and to try to forget I had HIV. I was never hospitalized during that time, I also kept exercising, which kept me strong during this period, until I considered suicide, which made me decide to go back to medical care still today.
“In 2012, worldwide 1.3 million adolescents died. According to a report from the World Health Organization (WHO), the second leading cause of these deaths was HIV/AIDS."
L’ORANGELIS puerto rico
There once was an adolescent living with HIV... Since I can remember I have been taking medication. At first I did not know why, but I knew that if I did not take it I would die. When I was 12 years old, I found out the reason why I had to take so many pills and a horrible syrup. Since this day I had in mind that I did not have much time to live. I could not believe I had lived 12 years without knowing. When I was 15 I found out more about the virus, and I met young people who had the same thing, the same concerns, problems with the medicine, the fear of disclosure and other fears that we had at that age. I grew stronger and I became an activist in the Argentina Network of HIV Positive Youth and Adolescents until today. When I was 18 I decided to stop taking the medicine for an indefinite amount of time, until my body said enough. We all have our problems with adherence. Today it is difficult to return to how I was. I don’t want to have anything to do with medications. It angers me to know that my life depends on treatment. I don’t know any other life than the one I live. It has been five years that I have not taken medicine. In this time nothing unusual has happened to me, but I developed a painful rash and I stayed in bed with a fever for two or three days. As each day passes, I realize that I really need medicine, but it is very difficult to be consistent with the treatment.
"In 2012, worldwide 1.3 million adolescents died. According to a report from the World Health Organization (WHO), the second leading cause of these deaths was HIV/AIDS."
Tami/Argentina Argentina Network of HIV Positive Youth and Adolescents
There once was an adolescent living with HIV... When I was 11 or 12, I found out I had HIV. I was born with HIV, but I did not know until I was hospitalized with pneumonia. The doctors told me. Since then I take the medication. It is not easy living with the virus, much less in this society, where people, due to fear or a lack of knowledge, discriminate against you and keep their distance. Over time I learned not to care about people like this. Taking the medicine every day is not easy. There comes a time when you get tired and stop taking it. I did this and it was a mistake, because I ended up in the hospital a lot. One has to be very strong and know that they are not alone in this struggle. Yes, I'm still standing and I have started taking treatment again. It is not easy, but I have my family and friends who give me the strength to continue. It is not easy living day to day with pills, but it is the only thing that is going to me keep me standing, and enable me to live like anyone else and not become another HIV statistic. I choose to continue taking the medication. It is not easy and no one said that life would be easy. You have to be conscientious and learn how to face the struggle. ‘There is no death for those who fight’. Being around people who love me eases the pain. I hope that this inspires others and raises awareness that it isn’t easy to live with treatment every day, but it is the right thing to do. “In 2012, worldwide 1.3 million adolescents died. According to a report from the World Health Organization (WHO), the second leading cause of these deaths was HIV/AIDS."
Leandro/ 20 years/ Argentina Member of Argentina Network of HIV Positive Youth and Adolescents
THE ONLY TEACHER Once upon a time there was a teenager living with their grandmother, their uncle and their friends, their dreams, their ideas, their fantasies, and their HIV status. His HIV was called VIH, and he was born with it. It was not the HIV of others: it was his HIV. It had its own form, its own mutation, its own resistance, its own medication, its own treatment and its own history. But when the teenager was able, with great effort, to accept these reasons, he realized that his HIV was not another person’s problem, like conservative people used to say in the 80s, but it was very much his own problem. He learned how to avoid heavy storms and to prevent flu, he learned how to take whole bottles of poison and salvation full of magic drugs, and he learned how to inject himself with a beta version of a new drug that was in development, from the age of five to seventeen. When he reached puberty he wanted to be one of the heartthrobs of his oversexed generation in the 90s and 2000s. Unfortunately, in the end, he came up against a wall of prejudice that was not there before, and not part of his thinking or being. Then, he realized that HIV was not just his problem, but it was now the problem of others. He now knew the world has a knowledge of others that is the product of pain and prejudice. Growing little by little, still in his teens, he wanted to be free - an unbound, libertarian, lover of adventure, eternal nomad traveller of the world seas, vagabond artist, and a romantic social activist against caste, corruption and oppression. He wanted to become all of the things that he had learned about through literature in the solitary confinement of his childhood brought on by weeks of illness, along with the fears of death and abandonment. But even so, the third essential point appeared - it was turning to part the waters and let his HIV be a complicated matter: he wanted to enjoy all of these impulses, every instinct, and he wanted to discover what it means to live in the world. In spite of it all, finally, he could not. No, he could not, by the mere fact of living and being tied to others – having a nationality, having a passport, being part of a social network. Without work and tied to state support to receive the good will of the bureaucracy, to be born in Argentina where people with AIDS are taken care of or to be born in Angola where there is no law
at all, or to be born in the United States where there is the law of supply and demand; HIV was no longer just his problem, but others’ problem as well. Individual and social, HIV was also a political and economic problem. There was a time that he heard another teenager, who was also living with HIV, saying: "HIV helped me see this, it helped see the other.� And he thought about all the problems that HIV had brought him in life. Problems of loneliness; problems of health, body and mind. Problems in society: problems with others, prejudice, uncertainties, the decision not to speak up and the decision to speak up. Problems with power: government, politics and social problems; nations that give services for free, nations that charge for services and nations that do not give at all. There was a nagging paranoia that it could not be then and it could never be that his HIV had taught him anything and that the other teenager was very mistaken. And he realized that no, actually his HIV had not taught him anything, he was his only teacher. And if it was not so, then HIV would have already taught him death before he had the chance to live. And it happened with the support of family, friends and love, and the merit of his own strength. He was his only teacher.
"In 2012, worldwide 1.3 million adolescents died. According to a report from the World Health Organization (WHO), the second leading cause of these deaths was HIV/AIDS."
Tito
There once was an adolescent living with HIV... I contracted HIV when I was 15, after sharing injectable drugs. But I do not believe that the way I contracted HIV is important or critical to define how I live every day, facing all of the consequences of my actions. After finding out that you are likely to contract the virus through sharing needles, I was tested after the three month window period. During this time, I had a health crisis, during which I stayed in bed for a week with a throat infection, fever, night sweats and pain throughout my whole body. There were a few turbulent years before I initiated treatment first with Combivir (zidovudine + lamivudine) and Efavirenz. However, AZT caused me many unpleasant side effects, including frequent nausea and bloating. I started to hate the taste of coffee, which was something I had loved. I started to lose a lot of weight too because I could not eat anything even though I was hungry. This continued until I made an appointment after doing some research in which I found out that a combination of drugs less aggressive were available to me. It was clear that I was given these drugs based on accepted medical practice, and the doctors were complying with protocol by prescribing the more aggressive medicine instead of the less strong. So I changed medication, which I am still taking today - Tenofovir, Lamivudine and Efavirenz. I do not have any discomfort with the current combination and I'm learning more every day about living with the drugs. But still, I want to clarify that my life is not limited to drugs, and my health is not only dependent on these drugs. My life depends first of all on Living. My life depends on basic conditions for the development of body, mind and soul. I will not have a dignified life if I only live on medication and believe that medicine is the only thing that will keep me healthy. I want more. I don’t accept, nor do I believe that giving me medicine while taking away all of the other things in which I have a right to. I want to live in good conditions, I want to eat healthy food, I want good relationships, I want to learn, I want freedom, and I want the respect of someone who has control of their life. "In 2012, worldwide 1.3 million adolescents died. According to a report from the World Health Organization (WHO), the second leading cause of these deaths was HIV/AIDS."
Thiago Belo Horizonte, MG – Brazil 27 years
There once was an adolescent living with HIV... I have been living with HIV since I was born, 25 years ago. And since the age of six, I have been taking antiretrovirals. I know that many people died because this medicine did not exist before. I have always had difficulties taking this medicine as a child, because the taste is bitter and the pills are big. In my adolescence, I stopped taking the medication various times because although I was told that they are good for me and my test results were good, I did not feel good physically and this has not changed. I know the importance of taking this medicine and I am grateful for all of the activists who struggled to make this medicine free. But we are 30 years into the epidemic and for as many people who were saved, there is much that has not advanced. I am in a moment when I can’t stand taking the medicine. My body cannot take it anymore – my bones, my stomach, my kidneys, my liver – each day they are weaker, and I ask myself, ‘Is it worth an undetectable viral load, a high CD4 count? What is it worth if I cannot have a good quality of life? If I cannot have fun, study or work?’ The pharmaceutical industry invests in new medicines, but they are missing medicine that is good for children and women. I am tired of seeing people die – whether they are adherent or not. I am tired of how we have advanced in many ways, but are stagnant in others. I am stagnant. The doctors tell me that if I do not take my medicine, I will die. But many have died and how many more people need to die for the life of a person living with HIV to really change? For us to have a better quality of life? Today, the medicine I am taking is not having a bad effect on my body and in the last consultation I was prescribed Bactrim while I wait for my genotype so that I know which medications I can take. At Emillio Ribas Hospital, which is the reference hospital for HIV/AIDS treatment, there has been a stock out of Bactrim for more than a month. And while I wait for this exam, I continue to struggle. How long will I have to struggle against these medicines? And what is it worth? As a young person living with HIV in Brazil, a leading country in HIV treatment, a country that is hosting the World Cup - I demand new HIV research. I demand a specific look at each person living with HIV. I demand a CURE.
Micaela / J+ LAC rnajvcha-brazil
"In 2012, worldwide 1.3 million adolescents died. According to a report from the World Health Organization (WHO), the second leading cause of these deaths was HIV/AIDS."
There once was an adolescent living with HIV in ecuador... The “right” thing is not always the good thing. Fear, ignorance, shame and misinformation led me to make a decision, that, at the time, I considered “correct.” When I was 17 years old, I was three months pregnant and found out I was living with HIV. A psychiatrist gave me the news and said, “Every action in life has a consequence and the consequence of your actions is that you have HIV. Now we should make sure your baby is born negative.” In that moment, everything became a labyrinth. On one hand, I wanted to do everything necessary so that my child was born free of HIV. On the other hand, I didn’t understand, Why me? Why HIV? I wanted to give up on life, but I had a reason to continue. During the eight months of my pregnancy, I was hoping for psychological and social care in addition to the medical care that provided me with ARVs and vitamins. In my last check up with the gynaecologist, when they scheduled my Caesarean section, they said, “Let’s take advantage of the time your delivery to tie your tubes. It will be best that you don’t have any more children, because a child really takes a toll on a woman’s body. Now, you are young, and you had an early diagnosis, and you took all of the medication, so we are confident that your child will not be born with HIV, but if you do not tie your tubes, and in the future you want to have a child, your body will be affected by HIV, the child that you want to have may not be born free of HIV and this will not be fair to the child. Also, a child needs a mother who is alive and we do not know how HIV will affect you. Since you are 18 years old, you can sign the consent. Think about it, and on the day of the Caesarean section you can tell us your decision.’ And the only thing that went through my mind was that a child needs a mother. Months later, after seeing my child grow to be HIV free, I began to find out more about HIV and about my rights. When I reflected on my experience, I realized that a majority of my rights were violated – taking the test without consent and without pre- or postcounselling, telling my mom of the test results only with the phrase ‘Take her to the public hospital to be cared for there,’ disclosing my diagnosis to my family and to my ex-partner without my consent. And the most serious of the violations - insisting on my sterilization. After learning a lot, I understood that I could be a mother again, but because of the lack of information and infringement of my rights, I was led to make an irreversible decision that I believed was right at the time. The “right” thing is not always the good thing. Fear, ignorance, shame and misinformation led me to make a decision, that, at the time, I considered “correct.”
barby / J+ LAC /J+ ecuador ecuador
"In 2012, worldwide 1.3 million adolescents died. According to a report from the World Health Organization (WHO), the second leading cause of these deaths was HIV/AIDS."
There once was an adolescent living with HIV in mexico... When I was 16, I found out I was HIV positive. In that moment I was alone and worried because my family, especially my mother, wouldn’t know what to do with this news. Some months later I received the final results and then I was able to receive health services offered in the hospital. Surprisingly, the day I gave the documents to the social worker, he did not want to assist me and start the process of registering me with clinical services, arguing that I wasn’t 18 years old and because I did not have any family members with me. A few years passed before the doctor prescribed antiretroviral treatment. Until this day I kept on doing what I always did, but it had caused a lot of damage in my life. I had lost almost 20 kilos (44 lbs) which was horrifying. I couldn’t look at myself in the mirror and I afraid to meet new people and go out with my friends, fearing them saying, ‘You’re too thin’, ‘Are you eating well?’, ‘What happened to you?’ and ‘Are you healthy?’ These are some of the phrases that bothered me and made me very scared. These fears and insecurities made me think about giving up on the medication, but in some moments, it made me think and remember that all of the difficulties that I experienced with my family and friends and people close to me, had made me very brave and had strengthened my self-esteem, my security, my love for my body and for myself.
"In 2012, worldwide 1.3 million adolescents died. According to a report from the World Health Organization (WHO), the second leading cause of these deaths was HIV/AIDS."
Antonio/J+ LAC /J+ Mexico
ORIGINAL IDEA: MARIANA IACONO PABLO AGUILERA CARLO ANDRE OLIVARES
WE THANK THE PARTICIPATION OF: MEMBERS OF J+ LAC RAJAP AND REDE J+ BRASIL