World AIDS Day 2015 Speak up against stigma and discrimination
INTRODUCTION
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AKNOWLEDGEMENT 4 SCORA IT
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PEOPLE´S VOICES
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DEDICATORIAL
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Introduction If one thing is true, there’s still a lot of ignorance and stigma around HIV from health care providers, resulting in a deficient and sometimes discriminatory care. This stigma is normally driven by fear of HIV and insufficient awareness of what stigma against people living with HIV looks like and what its consequences are. Consequences that can have a direct effect on the community in the form of: reduced uptake of HIV testing or a potential rejection of available treatment and preventive measures for those at risk of infection among others. In the IFMSA, as medical students, we advocate for the implementation of health-related policies that defend human rights for all including people living with HIV and aim to provide in a near future healthcare services free of discrimination and judgment, adapted to everyone’s needs. This proposed activity takes shape into a booklet that aims to collect different testimonials of people living with HIV, sharing their relevant experiences and realities with healthcare settings and providers (either bad or good). By presenting this booklet to our members and spreading it to health professionals, we aim to initiate an impulse that will destigmatize HIV. We believe that our cooperation in this with the Global Network of Young People Living with HIV and all other networks of young key populations, including young people who sell sex, use drugs etc. is essential and can help us achieve the goals of this intervention. A mentality shift towards a more accepting and non-discriminatory perspective is still much needed in future and current health care providers, but step by step we can change that. This project was a joint effort between:
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All the stories you will find in this document are from people that felt the need to share their experiences related to HIV in healthcare. They are well-intended, passionate and some of them really touching, we hope you enjoy them all! :)
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Pepe Medical Student, Spain As a medical student who has just started its fourth year, I haven’t had many experiences in the healthcare setting, as I just started my clinical rotations a few months ago and haven’t cursed many subjects yet. However, these months have been enough to witness some prejudices doctors, interns or other professionals have towards people living with HIV. If I had to choose the one that impressed me the most, I would say it was one experience I had one month ago, during my ORL rotation. During two weeks, each morning we had a practical seminar with one of the doctors. That particular morning the seminar was about how to properly explore the airway on patients. First of all, the doctor started with the theoretical part, and so far there was nothing special about it. However, afterwards the doctor told us to explore each other’s airways by pairs and that, before anything, we should wear gloves, while she asked us: “Does anyone know why it is so important?” “For hygiene reasons?” a student asked. “Well yes… but most importantly, we use gloves while exploring the patients’ airway since the AIDS epidemic started, to prevent us from getting infected”.
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I personally was very shocked. We often tend to think that healthcare professionals are over prejudice and ignorance, that this is not an issue to them. But that morning I could see how an actual doctor was suggesting that HIV could be transmitted just by exploring someone’s mouth with the bare hand… I guess it was just ignorance. I guess she didn’t exactly know how HIV is transmitted. Either way, this was an obvious proof of how apparently prepared and empathetic professionals like doctors are still ignorant and prejudiced on HIV and people living with it.
Ariadne Panama My first experience with HIV positive patients was really curious. I was involved with an organization that works with HIV positive patients and their families in my country. At first I didn´t know the people that managed this organization, but after they started introducing themselves they told me they were in fact HIV positive patients too. For me that was a shocked cause I had a made up image about how a person HIV positive looked like and they didn’t into my image. This experience changed my point of view and conception regarding persons living with HIV. Even though I never saw myself as a discriminating person, I was in fact part of the discriminative society we live in.
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Victoria Hair Dresser and Transgender Activist, Brazil Eu cresci e vivi sabendo que este corpo não era meu. Que minha vida na cultura gaúcha brasileira não era aceita. Que existem ainda sociedades, médicos que não querem encostar em mim. Que a passarela da vida não é um lugar para uma pessoa Trans, menos quando ele/ela é HIV positiva e menos quando somos das classes sociais baixas, da favela, do sujo. Fui presa em 2003 por porte de crack. O presidio (masculino) resultou ser um lugar onde encontrei mais Liberdade do que antes (mas que fique claro, essa não é a realidade para a maioria), tinha meu espaço protegido, meu marido. Estava sem Liberdade no corpo, mas minhas ideias eram livres, meu grito é livre. Agora que estou fora a única coisa da qual tenho certeza é que uma vez meu corpo é livre e meu pensamento também, meu ser é a manifestação política mais poderosa que pode existir dentro da sociedade Brasileira. Força a todas as guerreiras. Beijos, vivi.
I grew up and lived knowing that this body wasn't mine. That my life in the Brazilian “gaucho” culture was far from accepted. That there are still societies, doctors that don't want to touch me. That the life´s runway is not a place for a Trans person, lot less when he/she is HIV positive and lot less when we come from low social classes, from the favelas, the dirt. I was detained in 2003 by crack manipulation. The (masculine) prison resulted to be a place where I found more freedom than before (but to
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be clear, that is not the reality for the majority), I had my protected space, my husband. I was without physical freedom but my ideas were free, my screams were free. Now that I’m out the only thing that I’m certain about is that once my body and my thoughts are free my being is the most powerful political manifestation that can exist in today's Brazilian society. Strength to all the female warriors. Kisses, vivi.
Maria Medical Student, Ecuador 58 year old male, single, heterosexual, musician, who used to travel all around the world with sexual experiences with both genders came to our hospital because one of his Spanish friends told him one of his previous sexual partners has just been diagnosed with AIDS with complicated TB and cryptococcosis. Worried by these news he got tested positive for HIV at another health center, where he gets referred to our hospital which is considered the top center for HIV. After all the required exams, viral load and CD4 he came back for treatment, then he told us about his ex-partner that had died back in Spain. Her family didn`t want anything to do with her anymore, even less prepare a funeral, he needed to travel to say good bye for the last time.
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Leonardo Medical Student, Ecuador 16 year old male comes into the HIV clinic with his mother because a month ago he presented with fever to the emergency room, gets dismissed as the cause is not apparent and sent home with antipyretics and hydration. Goes back 2 days after with the same result, goes to another hospital with diminished mental status. Where after many tests someone decides to test for HIV. Which comes back positive, they test again, positive. Third time lucky? Once again positive. His sister, a doctor, brings him to us. He refers to having started his sexual life 2 weeks before the onset of symptoms, still 15 at the time. His very first sexual contact has passed on the HIV. His mother just can`t believe it, she didn’t even know he had started having sex.
Agoyi, Medicine and Surgery Student, Nigeria Looking at the sickly patient on the hospital bed, she felt pity, wishing he had come earlier, known his status‌ His health could have been salvaged. Well, now he’s here. There is little she could do for him. She being the newly posted medical officer to the unit of the
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hospital. Today, the patient suddenly regressed and seemed to be going into Organ failure, so his blood sample was requested to run some investigations. She got the syringe, needle and sample bottle… in a hurry to draw the blood, send it to the lab and save his life, in such a hurry that she forgot to wear gloves. She drew the blood, capped the bottle but forgot to cap the needle and dispose into the sharps box… “Hello, is this the staff lab? I just sustained a needle prick injury”. She said in a clear shaky voice, what should I do? … an hour before, while trying to tidy the table she felt a sting, only to look at the source and it dawned on her that she had mistakenly used her hands to prick a needle used for an HIV patient. Fear sets in as she saw the tiny blood ball form on her finger, she ran to wash her hand, she used all antiseptic solutions available but the deed had been done. “Calm down ma, when and how did this happen? ... Sadly, she recounted the event. Six months later, she is being prepared for her elective CS by senior colleagues to save her baby from the virus she got trying to save a life. She is positive, her baby negative. This is the situation many Healthcare Providers find themselves. Some may have died but those alive are living positively and still in the business of saving lives.
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Lungile I went to the health center to immunize my baby after six weeks from birth. The health worker forced me to do family planning, when telling her that I was not ready and I have to consult my husband before undergoing the family planning process, she told me that I should make a quick decision because my blood is dirty and there are a lot of patients awaiting to be attended to. I am a woman living with HIV and understanding that I am still a human being, I felt insulted to be reminded that my blood is not clean is dirty. I had no choice I agreed to family planning and they inserted implant which gave me problems after sometime, I work as a community volunteer and after my paid job I do house chores at home, as a result the implant lose position. When I went back to the health facility to give them feedback about the implant they told me that I was not supposed to do hard work. By that time I regretted my decision of family planning I did not want to hear anything about it. The nurse suggested that I should choose among the other contraceptive methods, again I had no choice she did not even give me time to think about it I just chose tablets. It is said that people should all fight stigma and discrimination of any form against people living with HIV, but with HIV positive women is not practical in some instances.
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Why should a health worker always refer to my HIV status when she or he supposed to be guiding me to take an informed decision? Why should I be forced to enroll to family planning? Why am I not involved to make a decision about my own health? I still have my own choices and they should be respected.
Franklin Costa Rica Soy Franklin Chaves, para 1996 tenía treinta y seis años. Para saber si tenía VIH debía esperar por el resultado dos semanas, luego fui referido al Hospital San Juan de Dios, confirmando con el Western Blot el diagnóstico de VIH. Siete meses después en mi primera cita, mi CD4, era bajo pero no habían medicamentos y la incertidumbre y dudas pasaban por la mente deprimiéndome pensando en mi muerte, y en el estrés de pensar a quién decírselo. Comencé a confiar y comentar con mis amistades, el cual fue la primera DISCRIMINACIÓN de rechazo donde fui señalado. Asistí cuando se fundaron las primeras asociaciones de personas con VIH en Costa Rica, donde obtuve el apoyo de un grupo los Retrovirales. En el Hogar la familia fue un peso, pues no quería que mis padres sufrieran, hable con mi hermano mayor, el cual no me dio apoyo por mi orientación sexual, me hizo sentir denigrante y recurrí con los amigos, unos no volvieron a comunicarse. Yo sentía miedo por mi profesión en el área de
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Gastronomía, podía perder mi trabajo, las citas eran seguidas, los exámenes igual, fueron casi dos años en la sombra de la muerte, sufriendo y viviendo temores diarios. Llegaron los Retrovirales y al inició se sentía mirada fría e indiferente de las personas que nos daban el medicamento. Recibí el apoyo de mis padres que hoy no están, mis hermanos y hermana, duraron años en entender que la DISCRIMINACIÓN mata, aísla al ser humano. Gracias por poner atención a mi historia con el fin que usted se cuide, se haga la prueba, y cuide a los demás divulgando la enseñanza de este mensaje. Bendiciones, Franklin Chaves.
My name is Frankiln Chaves. In 1996 I was 36 years old. To know if I had HIV I had to wait two weeks for the results, after that, I was sent to the San Juan de Dios hospital, with the confirmed diagnosis by a Western Blot test. Seven months after my first appointment, my CD4 count was low but there was no medication and the uncertainty and doubts passed through my mind depressing me and thinking about my death and in the stress of thinking who to tell this. I started to trust and tell to my friends. That was the first situation of DISCRIMINATION I experienced. I saw the first associations of people living with HIV in Costa Rica being founded, where I received support of a group of people under my same condition and fought to obtain the antiretrovirals. At home my family was a hard one, because
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I didn't want my parents to suffer, I spoke to my eldest brother, he didn´t give me support because of my sexual orientation, he made me feel diminished so I talked to friends, some didn't talk to me again . I was afraid for my profession in the area of Gastronomy, I could lose my job, appointments were frequent, and the exams were the same, two years under death´s shadow, suffering and living daily fears. Antiretrovirals arrived and at first we felt the cold and indifferent look of the people that gave us the medication. I received support from my parents who are not here today, my brothers and sister understood that DISCRIMINATION kills and isolates the human being. Thank you for paying attention to my story. Please, take care of yourself, get tested, and take care of others by spreading the teaching of this message. Blessings, Franklin Chaves.
Ronaldo sex worker I started in this business because my mother had to go to the doctor. We didn't have money to cover the chemotherapy sessions. That was when I was 14. I am a heterosexual man, although most of my clients are men. I am HIV +. I didn't follow mi contagion line because I knew one day I was going to get it anyway. I was diagnosed with 19, I remember the look at the doctor's face. You know? Like when someone
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really judges you for your life, your actions, some decisions. I didn’t even open the envelope when he said: “you need treatment”, I didn’t want to cry or anything, I just responded “give me the pills then”. So he did, I left the office. I was never the smart guy but I know how to take care of myself. I learned the hard way. Please seek for each other. Peace and Love
Maria Julietta mother, Brazil I will never know if my husband cheated at me. I found I had HIV after he died. Everything happened so fast. He already was weak because of a kidney transplant in 1996. He was really handsome and I always say it was his traditional Brazilian smile that took my heart. We were having lunch in the summer close to the Guaiba River in 2008, it was a really hot day. He fainted after complaining of strong headaches, I called the ambulance. He was taken to the hospital to the ICU. He died 46h later because of neurotoxoplasmosis. They tested me too, then I found out I was HIV positive. I remember to have a burning feeling in the chest of anger. Julio died that day, but he wasn't alone, the truth died together with him. What will I tell my kids now? Will I live enough to see them grow up? Get married?
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I mourned Julio for 6 months, with questions in my mind all the time. It still lasted 2 or 3 months to start getting treated. My life was falling into pieces just as it happens in soap operas. Bracing myself as a human probably was the key to deal with the pain. Accepting that it all was an accident, I doubt my husband wished for me to have the virus. For all I know he didn´t knew he had the virus as well, that is why it evolved into the syndrome so fast. I stopped blaming him or blaming me… The problem of this disease is that you always look to point at someone, blame someone. That will never let you see good things in life. Yes, I’m ill but I’ve never tasted life like I do now. I´m definitely a better person. And yes, I saw my kids graduate. Currently waiting for my eldest son to find a girl for him to love. Thank you for this space to tell my story. Good Luck with your project.
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Jose Pablo Costa Rica Mi vida con VIH Romper estigmas Cuando recibí mi diagnóstico me encontraba ya muy mal de salud. Había perdido unos 20 kilos en cuestión de meses y sentía que era incapaz de subirlos. Tenía varios síntomas, sudoración nocturna, diarreas constantes, casi no comía y adquirí una toxoplasmosis que me llevó a perder la movilidad de una de mis piernas. El diagnóstico me lo dio mi tía, médico; y fue con una tranquilidad que marcó el resto de mi vida: "salió reactivo, que dicha que es eso lo que tenía, hay tratamientos muy buenos" y se fue a trabajar. Creo que estuve a punto de llorar desesperado cinco minutos, pero la manera en que mi tía me dio la noticia fue tan tranquila, que tuve chance de analizar la situación y de recordar a los amigos que tenía en ese momento que vivían con VIH y que vivían plenos y felices. Al momento decidí contar mi diagnóstico a mis amigos más cercanos, personas que habían estado ya por más de quince años en mi vida y me hice desde ese momento de un grupo de apoyo. Yo sabía que iba a estar bien.
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Los problemas de peso, de estómago, la sudoración y la toxoplasmosis me llevaron a internarme en el hospital. Fue mi mejor amigo quien me llevó. Durante 17 días estuve en tratamientos para luchar contra la toxoplasmosis y recuperar la movilidad de mi pierna. Me hicieron exámenes de VIH los cuales confirmaron que tenía una carga viral gigantesca y un cd4 de 46. A pesar de tales resultados yo sabía que iba a estar bien. Al hospital me visitaba mi hermana y mi tía, mi expareja y mis amigos. Lo único que extrañaba era a mi perra. Cuando salí del hospital fue con un daño el riñón que por suerte se estabilizó, salí caminando y con retrovirales. Yo sabía que iba a estar bien desde el principio y así fue. Llegué a la casa y la perra me saltó encima y estuve feliz. Desde mi diagnostico siento que la vida me ha brindado una oportunidad de ser feliz, de ser pleno, de poder conocer y apoyar a personas que han estado mal y que necesitan una mano que les guíe a romper los estigmas del VIH. El VIH no es muerte, no es un castigo, sólo es algo que pasa, una consecuencia que no debe marcar nuestras vidas de manera negativa. Vivir es una oportunidad, no hay que vivir por vivir, si no marcar de buena manera nuestro espacio en el mundo. Entrar a la Asociación MANU me terminó de dar un norte en la manera de vivir con el virus en mi vida. Tuve un espacio para llevar a personas que habían recibido un diagnóstico de VIH y que como yo, aprendieron muchísimo en ese espacio tan rico de conocimientos, en donde todas las historias, te
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identifiquen o no, aportan un granito de arena para romper la estigma y el miedo y de hacer de este mundo un lugar mejor. Mi nombre es José Pablo y tengo 3 años de conocer mi diagnóstico. Tomo medicamentos para controlar los niveles de VIH en mi sangre y actualmente me encuentro indetectable. Me realizo exámenes y chequeos médicos en el Hospital Calderón Guardia donde mi cd4 se hace cada vez más fuerte. Mi médico es seria pero satisfecha con los resultados en cuestión de mi salud. He aprendido a ser responsable con mi sexualidad, a quererme más yo mismo, a fortalecerme. Recuperé mi peso, tengo una pareja seronegativa, tengo una familia, tengo amigos, tengo trabajo y tengo mucha salud. Mi vida es plena y esto me da las herramientas para afectar de manera positiva a las personas que me rodean. Vivir con VIH me ha dado una conciencia importante sobre mí mismo. Yo sabía que iba a estar bien y estoy bien, no habló abiertamente de mi diagnóstico pro no lo oculto. No me da vergüenza ser quien soy, la vida me ha dado una oportunidad de hacer cosas importantes para los demás y la he tomado.
When I received my diagnosis I was already very ill. I had lost 20 kilos in a few months and felt I was unable to raise them. I had several symptoms, night sweats, constant diarrhea, hardly
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ate and bought a toxoplasmosis led me to lose the mobility of one of my legs. My aunt, a doctor, gave me the diagnosis; her calmness marked the rest of my life, " the test was positive, it´s good to know that´s what you had, there are very good treatments " and she went to work. I think I was desperately mourning for five minutes, but the way my aunt gave me the news was so quiet , I had a chance to analyze the situation and to remember the friends I had at that time living with HIV and how they lived at best and happy. I decided to tell my diagnosis to my close friends right away, those who had been for more than fifteen years in my life and from that moment I made myself a support group. I knew I would be fine. Weight problems, stomach, sweating and toxoplasmosis led me to stay in the hospital. My best friend took care of me. For 17 days I was in treatments to combat toxoplasmosis and regain mobility in my leg. I did HIV testing which confirmed that I had a huge viral load and CD4 at 46. Despite these results I knew I would be fine. At the hospital I was visited by my sister and my aunt, my ex-partner and friends. The only thing I missed was my dog . When I left the hospital it was with an impaired kidney that luckily stabilized, I left walking and on antiretrovirals. I knew it would be good from the start
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and it was. I got home and the dog jumped on me and I was happy. Since my diagnosis, I feel that life has given me a chance to be happy, and be able to know and support people who have been ill and who need a hand to guide them through things that should not mark our lives negatively. Life is an opportunity, do not live just to live, but in a good way mark your place in the world. Entering the MANU association gave me a north regarding living with the virus in my life. I had a place to take people who had received a diagnosis of HIV and as I learned a lot in that space so full of knowledge , where every story ,even you identify yourself with them or not , contribute a bit to break the stigma and fear and makes this world a better place. My name is Jose Pablo and it’s been 3 years since I knew my diagnosis. I take medication to control the levels of HIV in my blood and I am currently undetectable. I performed tests and checkups at the Calderon Guardia Hospital where my CD4 is becoming stronger. My doctor is very serious but she is satisfied with the results regarding my health. I have learned to be responsible with my sexuality, to love myself more, to strengthen me. I regained my weight, I have a seronegative partner, I have a family, I have friends, I have a job and I have great health. My life is full and this gives me
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the tools to positively affect the people around me. Living with HIV has given me an important awareness about myself. I knew I would be fine and I'm fine, I do not openly talk about my diagnosis but I don’t hide it either. I'm not ashamed of who I am, life gave me an opportunity to do important things for others, and I took it.
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Carlos Medical Student, Brazil When I entered med school, I was confident that I was going to find a place of clinical understanding about AIDS, numbers, and amazing facts and how science will be present for the rest of my life. That happened until the day I met M. I was in my third semester, taking my semiology class. I had an assignment to take medical history of any patient I wanted. Naturally, I went to the pediatrics department (you know, to cheer up my day from happy vibes from little kids). I chose Duda, a girl from the countryside that was in the hospital because she had seizures and AIDS. I then decided to enter the room, took a deep breath (first time talking to a patient ever) and opened the door. I entered the room and nervously smiled at M, Duda´s mom. I rapidly started to look at the drawing in the walls for M not to think I was a newbie at this. I then looked at Duda; she was a beautiful girl, dark skin like mine with green eyes and pink clothes. I greeted M and Duda, introduced myself and started asking a bunch of questions just as I have rehearsed from the books. Duda´s face immediately lid up with boredom, naturally. M continued answering; while Sarah grabbed a teddy bear and put it on her forehead not to see me. M: “I think she is ashamed”, I responded: she shouldn´t be, M: not because of her, but because of me, I
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responded: how come? You seem to be a good mother to her, M sighed…. I am HIV + and so is Duda because I passed “it” to her. My blood flow augmented and started sweating. M started crying. I really didn't know what to tell her that moment. I just hugged her. “Sarah has AIDS now,” she said. A bomb fell inside me. “I honestly know nothing about the disease or anything about medicine at this point but thank you for sharing this with me” I said and stared to seek for body language that evidenced anger to exit the room. Sarah takes the teddy bear and throws it at me. She laughs, Duda's laughter definitely makes M much happier. I laughed as well, although my teachers tell me not to the whole time. M hugged me back. “I feel lonely”, she said. “She feels lonely when I’m sick” Duda said. I had an idea. How about a game? Duda and M agreed. The rest of my interview annotations were full of crayon scribbles, glitter and possible mermaid names to start an underwater kingdom. I really don't know how it is to live with HIV or if I’m supposed to know how to take guilt and sadness from people as a future doctor. I definitely knew that in that moment I wouldn't like to feel lonely, not in that situation. I visited Duda 2 more times before she left in October that year. She didn´t made me a better doctor or a better person. I just saw the world with brand new eyes.
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Laura Medical Student, Spain When I started my rotation in the Infectious Diseases service I wasn’t sure what to expect. We have all heard lots of horror stories of discrimination: how much of this would I find? Would disrespectful attitudes be the norm? No. I’ve never seen such human and close doctors. In outpatient setting, most of them didn’t even wear a white coat. Doctors asked truly interested, genuine questions about the personal life of patients (I am using this word as I am speaking strictly of visits): How are things going at work? Have you found a moment to tell your parents? How are you feeling about this situation? Can I help you with anything? I was so happy. I was really amazed. This was way beyond what I expected from any doctor with any patient. There I was, believing no such thing as stigma existed, when I decided to explain all this to a friend of mine -not related to the medical world. Then came the question: “Are you taking care?” “What do you mean?” “Well, you know… aren’t you afraid of getting it?” At first, I was in shock. How could someone believe, in 2015, that HIV can be transmitted by sneezes or a hand-shake? How could anyone be afraid of being in the same room with a person living with HIV? But then I realized I was being unfair: it is easy for me, for any of us medical students, to be aware of the reality that surrounds HIV-AIDS. It’s our obligation. For everyone else, HIV knowledge comes from whatever they may hear on TV, find on the Internet or
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remember from the ‘90s. Information ends ignorance, which is the beginning of prejudice, stigma and discrimination. It is our responsibility, as young, informed and motivated future health professionals, to transmit this knowledge to all of society.
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This booklet is dedicated to anyone who has ever fought to free the world of stigma and discrimination.
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