Getting a Seat at the Table

The Monday 18th of July I had the opportunity to be in a panel named: Getting a seat at the table, young leaders share the highs and lows of leadership and accountability. This panel was a collaboration between Link Up, Athena Network and the participants where; Raoul Franzen, Mimi Melles, Jacqueline Alesi, Myo Thet Oo, Linda Mafu and myself. The propose of this session was to brings together a group of young people who are involved in such spaces, at the country or global level, including the Country Coordinating Mechanism (CCM) of the Global Fund, the UNAIDS Programme Board Committee (PCB), and the UNAIDS Dialogue Platform for Women Living with HIV. The session explored some of the strategies employed by young people to make the most effective use of their engagement; their successes in representing different constituencies of young people; how they remain accountable to the communities they represent; and, any challenges they have encountered, and how we have overcome these.

I was asked about what barriers to young people in their diversity face to getting access to decision making spaces:

1. Language.

We use language to create realities, we can build and destroy paradigms by using different words or even creating more options that we weren’t able to describe because we don’t have the correct words to do so, or just to make a distinction. So, when we talk about language we must know that many terms are new for different people, and young people who may just start doing activism or understanding the HIV (and HIV related themes) world. This way, when we use technical language, maybe from the academia, science or UN system, we can get a bit lost, and of course of participation will be affected.

Idiom as well, is a huge gap. My first idiom and language is Spanish, and many people still believe that is English. And it’s because my English has been improving since 2012, and also because I know that if I want to have a greater impact, I would need to speak a more common idiom and language. When we go to spaces like International Aids Conference, big part of the event is in English, when it’s supposed to be “International”. Translation can be a fundamental key for many people that don’t have the resources to learn an additional idiom, and can improve their participation. However, having translation not necessarily may solve all the issue, since we know that the translation is not 100% accurate, for example in Spanish I can say “hombres que tienen sexo con otros hombres”, which means “men who have sex with other men”, but maybe the translation may say “men who sleep with other men”. It may sound something not important, but when we are talking about declarations that will get the compromise from the governments, between “sex” and “sleep”, there’s a difference.

2. Economic.

This theme can have a couple of layers. We can start by thinking about the number of young people that participate in processes like the High Level Meeting, just for using an example. In this kind of processes you will have many people living with HIV and many allies that don’t live with HIV but somehow, their work is connected with HIV. So, it’s good to ask ourselves, when we talk about participation; participation of who, where and how? We have awesome youth advocates, but how this advocates are representative enough? It’s very common that young advocates who don’t live with HIV, are in this processes because they work (with a salary) in the NGO they
represent. On other hand, is also very common that young people with HIV representing NGO and Networks, are there because they got their participation funded, but in fact, their work is volunteer with no salary at all.

So, when your activism and/or political work is funded is easier to participate, because activism is your work and job, so the time you invest is not your limited and free time, instead, the quality time. Sometimes we go to a meeting or event that may be a week long, and those days are our “vacation” days, that we took from our jobs. But if you’re out of “vacation days” from your job, that week you won’t get paid, and not being pay for a week, can mean not having enough money for paying something as basic like your rent, and the rent is something that we may not want to stop paying.

Definitely working on the HIV response with a salary can allow you to organize better your time and resources. Also, you don’t need to choose between HIV work and your job that pays your basic needs. You can even have a job in a NGO that works something related with HIV or specifically with HIV, but your position doesn’t allow you to take a week of to the High Level Meeting, for example, again. Another example can be the internet access. With better access to internet you can follow better the conversations on real time, help you to build a stronger movement outside your country, gives you more access to information and to respond to the actual communications platforms where you may find a lot of young people you can engage with. If you work in a national, local or in the very grassroots is easier with no internet access, but if you want to engage in a different level, you might need to invest in a good internet access, otherwise, is complicated to follow up. When I say invest, I mean money. You can even go to a Cyber Café, but you will need to at least buy the coffee. This still a huge barrier, I think not specifically of young people but, a lot of activism.

3. Time.

Is much related with economic issues, but in this case is related to the engagement and expertise young people may have. The longer you are engage with the HIV response, more information and experience you MAY have. Even though young people are kind of experts with social media and accessing online information, there are some skills you get with the actual participation which gives you experience. Isn’t just only about having the info, it’s about knowing how, where and when to use it, and sometimes this skills comes with experience. A young person who had the opportunity to be in many spaces, will have more skills on how to use an info, that a young person with less opportunity to be in those spaces, even with the same info.

Experience isn’t necessarily related to age, but with opportunities and the time you spend in activism and participating. But again, if you don’t receive any remuneration, who much time can you expend to have more experience that improve your participation, and by the time you get experienced enough, you might have more than 30 years. The issue here is that, when you are confident enough about your experience and skills, and you have more than 30, the agendas and spaces don’t applies you anymore. This is why we need to engage a whole lot more with adolescents.

About time, is very important to keep in mind that the agendas must me dynamic and scrollable to follow a generation in their different development areas. For example, the UNAIDS 90-90-90 cannot look the same for young people, adolescents and adult people all the way until 2030, because now I’m 28 years old, but in 2030 I will be 42 years old. So, in 2030 I will be a different adult, than today’s adults, and if the agenda don’t respond to my generation, but only to my age, how effective can be?

During the International Aids Conference I had heard a lot about “young women need to raise their voices” and “young women must have a seat at the table”, but once I have my seat at the table, WHAT HAPPEN? Once our voices are up, WHAT WE HAVE TO SAY?

We are more than voices and seats…


WomenNow! 2016

Women Now! 2016 is the Pan African Women’s Summit on the framework of the International AIDS Conference 2016, which after sixteen years is back to Durban, South Africa. The primary goal of Women NOW! Was to bring together a broad diversity of leaders and emerging leaders who are concerned and working on women’s sexual health and development to influence the agenda at the International AIDS Conference (AIDS2016), and to impact institutional and community responses to HIV among Black Women around the world. An opportunity to assess the content and execution of the IAC for its meaningful inclusion of women’s and girls’ sexual & reproductive health and justice, especially women and girls of African descent, who bear the brunt of the HIV pandemic among women worldwide, was addressed during this three days of work and sisterhood. This summit addressed critical areas of concern for women’s human rights, through an intersectional lens, including key issues of race, economic status, gender equality, women’s empowerment, gender-based trauma and violence, and sexual and reproductive health, rights and justice.

A very good number of Sub-Saharan countries were represented, including leaders from USA, and strong young women from the Caribbean. This was one of the few spaces that I have ever been, where intersectionality between race, gender and HIV was addressed as the main issue, what allowed me to have a different perspective on HIV, and even though for many people this could be an excluding space because of race and/or gender, this was and still a pending conversation.

There’s no denying that a big number, more than the 50% to be super conservative, of women living with HIV are black. Either you’re African, African- American, Afro-Caribbean, or any other identity in the Pan-African or African descendant spectrum and context, many of us, all around the world, look kind of the same. We know that the Sub-Saharan African countries have the highest number of infections, followed by the Caribbean. If we look at the USA statistic, black women represent more than the 65% of the total number of new HIV diagnosis among heterosexual women. This is why we need to be able to study more the race issue as a health determinant. We live our blackness in different ways according to our context, but this space allowed me to see how those differences came together as one, to deliver a response that understand all our complexity and diversity.

During this Pre Conference, we were able to meet Dr. Olive Shisana, AIDS 2016 Local Co-Chair, Princess Mukelile of Zulu the Nation, Musa Njoko an HIV positive musician and a big group of women leaders living with HIV. This event was well balanced between academic and performative sessions, with a good intergenerational conversations. We have the opportunity to learn how disconnected the agendas can be from the grassroots and how to implement powerful but simple initiatives that can change the life of young women, adolescents, girls and boys sexual education. I may say, this has been one of the best places during my journey at Durban, to feel the sisterhood, embrace our diversity and connect all together to move forward as one. We always have something new to learn from one to another.

Born with HIV & SRHR

During the LIVING Positive Leadership Summit in Durban, South Africa, I have the opportunity to participate on the morning plenary. LIVING 2016 was a two-day exchange, learning and empowerment meeting of people living with HIV. LIVING 2016 was designed to produce concrete results for action, so people living with HIV get the access, equity and rights they deserve. As such, LIVING 2016 delivered a common advocacy agenda on five top priority issues to the Community and specific processes and corresponding mechanisms for collective action on those priorities. I was nominated to give a presentation on Day 2, titled SRHR needs of young people born with HIV and GIPA: experiences of involvement in (high-profile) speaking opportunities, tokenism or meaningful engagement, during the morning plenary hosted by Rachel Ong & Lorraine Anyango. During this space, the needs of other populations were also addressed, with Cecilia Chung, Svitlana Moroz and a young women representing sex workers. Below my presentation:


Hermanas y Hermanos. Sisters and brothers. I am very excited to be here sharing this amazing space of celebration. I am L’Orangelis Thomas Negron, from Puerto Rico. I was diagnosed in 1991, and then, the doctors said I only would live 3 more years, and 25 years after that, here I am, I’m 28 years old and still counting. I’m standing here being brave and strong in my mom’s memory and of those who came first, because brave and strong is the only way to be. Brave enough to be vulnerable and open myself to confront my fears and my contradictions. And strong enough to be unapologetic, bold and call out anyone, regardless the power position, age, race, gender and HIV status, to remember what do we fight for, because sometimes we forget who the politician is and who the activist is.

We cannot change our past and stories, but we can change the way we see them, we can change our narrative, and we are the only ones who have the power to change our lives. We, young adults who grew up with HIV, many times are invited to speak about our experiences in high level panels, this is what they want to hear from me: I lost my mom when I was 11, I was sexually assaulted, I was segregated, I took up to thirteen pills a day during my adolescence, I attempted suicide and I got other curable STIs. And how I have been resilient enough to made out of that struggle, a powerful and empowering tools not only for us, but for those who may come after us and need to be empowered. But I’m tired to repeat this and many more, in those high level panels and spaces, because I’m tired of inaction. I’m tired of being used as a token to arrive home and notice that after many years, many policies, laws and harmful practices haven’t change. To know that young adults who were born with HIV, are still dying because the available ARV alternatives don’t work or us anymore because we may have tried them all. To know that that many young people and adolescents are not able to enjoy their sexual and reproductive life, because growing up with HIV they were told “You are a mortal weapon”, “your child will be positive too”.

Our rights and dignity are still getting violated not only by societies, but by governments, health care providers and others, with harmful policies and practices, instead of ensuring the exercise of our human rights, including our sexual and reproductive rights. We need to talk about sexual and reproductive justice, because talking about rights is not enough anymore.

We are not symbols, and we are not the future. We are the present. We don’t come to this spaces to make anyone look good, and we cannot continue leaving decisions impacting millions of people, our lives and bodies, in the hands of the political will of governments and people in power positions. Identify your own privilege and use it for all, recognize in which shoulders your standing. Trust the diversity, trust young people, and trust in our political character, because we won’t wait anymore, we are not asking for permission to anyone. Having said that, what are a few of the many needs of young people who were born with HIV?

  1. We demand access. Access to the variety and new ARVs that the privileged of our world have. I come from the children that almost ran out of options of treatment because we burned out all our therapies. We need to stop running out of alternatives of ARVs. We don’t need to change our therapy every time the pharmaceutics release a new one, because we don’t take medications for making the pharma industry rich, it’s about options, quality, access and rights. And you need to stop pushing us to take the medication without even asking us what’s happening, as we didn’t have any autonomy over our bodies. My age doesn’t give you any permission to run over my body. Empowering it’s about intersectionality, and recognizing that we deal with medication and sexuality, both, in our bodies it what give us the power and the right, not only to have access to information, but to make informed decision, even when they are not convenient.
  2. We must insist in sexual and reproductive health, rights and justice. We still need access to contraceptives, condoms, safe abortion and a comprehensive and positive sexual education. We still need to eradicate forced and coerced sterilization.
  3. We demand a positive sexuality. When was the last time that your health care provider asked you if you were enjoying sex? So many young people who grew up with HIV, start having sex before they even know they are living with HIV. Sometimes we are the last to know we have HIV. Our uncle knows first, our parents friends knows first, the teacher and even our neighbor know it first than us. And if by any chance we get to know it before adolescence, we could grew up hearing many negative messages about our sexuality and the risk we are for other people, that today, even when we have better evidence based information, some young people still fear of onward transmission, have difficulty in negotiating use of the male and female condom, or worry about being parents. We must promote gender sensitive, trans sensitive and LGBQI affirming sexual health literacy programmes for young people, including children in foster care.
  4. People need to stop infantilizing young people who were born with HIV, and know that we also enjoy sex, and we also want sexual pleasure. That not everyone is looking for love every time, but pleasure just for pleasure. We must break with the myth that anal sex is only for men who have sex with men, and oral sex only for women who have sex with women. And even with the culture of women just practicing oral sex to men, and not vice versa. Dear heterosexual men, we, women also enjoy oral sex, get in there. We must learn about the diversity of sexual practices and how to make them safer and pleasurable. We must start touching our bodies, to feel our bodies and recognizing how it really works.

We demand actions, we demand accountability, not only for governments and the UN system, but for donors and us, activism. If they don’t take us in account, we must create our own spaces, our own mechanism, we must be creative, because no one will do this for us, if we don’t start ourselves.

I still have many questions, since sometime it’s feels like many of the strategies are made to make us less infectious. How this agendas actually looks in a local scale? What does it mean for us in a grassroots level? How this plans may look in our bodies? And how we can implement this strategies with less funding? It’s horrible to know that frontiers actually define the quality of the treatment in one region. And it’s a shame that we have more studies in biological issues than in psyco-social matters, since mental health, stigma and discrimination are the main barriers for adherence.

We, young people who were born with HIV, need to reduce, until we eliminate, the self-stigma, low self-esteem & feeling ‘dirty’ or ‘guilty’. We must be peers, we must be mentors. And we must to eliminate the term “mother to child transmission”, since this is the only term on the transmission ways, that make reference to whom infected who, what increases the burden and discrimination for HIV positive mothers.

If we want to end Aids, we must think, what does this mean for each one of us? I don’t know what means to live without HIV, but not because I was born with it, but for the time I’ve been aware of its existence in my body. We must talk about the things that happens to us, otherwise, we allow them to happen, not only to us, but for other people.

Let us share our stories for the right reasons.

Personal is political, must of the times, that’s why we can’t be afraid to be reckless, bold and to leave the political correctness at the door sometimes.

In this last 16 years a lot has change. But this isn’t over and we cannot wait two more years for the next International Aids Conference, or five more years until the next High Level Meeting, or even fifth teen more years for the next Development Goals.

Young people who were born with HIV are still here. We are still here, we are not extinct and we are not going anywhere. There is not political freedom, without sexual freedom.

¡Seguimos en pie de lucha!

Informe Reuniones para J+LAC


Esta reunión mantuvo una agenda abierta y conto con la participación de Cesar Núñez de ONUSIDA. En esta participo la mayoría de las personas de Latinoamérica y el Caribe Hispano. En esta se discutieron tres asuntos principales:

  1. Participación LAC en eventos globales: se le dejo saber al representante de LATAM en la IAS (International Aids Society, organización que organiza la conferencia) el descontento por la baja participación de LATAM en las pasadas dos conferencias y la baja otorgación de becas para que más personas de la región pudieran participar.
  2. Proceso de la Reunión de Alto Nivel: se compartió la experiencia de quienes participaron durante los pasados cuatro meses del proceso, las ganancias y las pérdidas. Se habló sobre la falta de transparencia del proceso, la mala comunicación que existe entre las Misiones que se encuentran en NYC y las delegaciones de los países, la falta de conocimiento de muchas de las delegaciones en temas de VIH y los determinantes de la salud, y por último, la articulación de la sociedad civil ya que el mismo proceso de alguna manera genero una división entre el apoyo a las Poblaciones Claves y las ganancias para las mujeres.
  3. Cooperación con Venezuela: se dialogó sobre la situación en Venezuela y la falta de suministros, reactivos y otros artículos. Se mencionó la importancia de las comunicaciones ya que son muy pocos los artículos que reflejan la realidad de la situación de Venezuela, ya que unos exageran y otros ocultan cosas. La mayor problemática es que el mismo gobierno no reconoce la problemática, lo que evita que se dé la cooperación desde ONUSIDA y otras agencias. Se inició un equipo de colaboración Latina, aun esperamos comunicación.


El propósito de esta reunión fue conocer a los y las jóvenes latinxs que estábamos en la conferencia, independientemente de su lugar de residencia, estatus serológico e involucramiento en redes nacionales. Los temas discutidos fueron:

  1. Acceso a los Servicios de Salud: se dialogó sobre la calidad de los servicios en los diferentes países para jóvenes y personas con VIH, así mismo como su prevención y el uso del PreP.
  2. Financiamiento de Servicios: discutimos cuanto del financiamiento para la respuesta del VIH en nuestros países es cooperación internacional, aportación interna y como se verán afectados los programas de VIH con el retiro del Fondo Mundial.
  3. Latinoamericanxs en USA: pudimos hablar acerca de las condiciones de vida en las que viven las personas latinas con VIH en los Estados Unidos y como estrechar lazos podría crear una colaboración entre la Sociedad Civil en Latinoamérica y la Sociedad Civil Latina en USA.
  4. Trabajo de las Redes Nacionales: Argentina, Costa Rica y Brasil.
  5. Agenda para Reunión con Luiz Loures: Esta agenda fue construida por los y las jóvenes que estuvimos en esta reunión y NO fue exclusiva de J+LAC.


En esta reunión participó Luiz Loures (Director Ejecutivo Adjunto), Rubén Pagés (Encargado de Juventud) & Cesar Núñez (Director para LATAM).


  • Avances de J+LAC desde Melbourne.
  • Buenas Practicas sobre las colaboraciones entre J+LAC, las redes nacionales y Comunicaciones.
  • Líneas de Comunicación para fortalecer en trabajo nacional
  • Articulación de estrategias que nos permitan la creación y el desarrollo de las redes de jóvenes.
  • Capacitación y/o Apoyo Técnico sobre la implementación de la Agendas y la Eficiente rendición de cuentas.
  • Apoyo para la creación de una plataforma virtual que nos permita llegar a más jóvenes y atraer recursos para las redes nacionales.
  • Colaboración Sur – Sur.

Compromisos de ONUSIDA:

  • Se continua la colaboración de ONUSIDA con J+LAC.
  • Crear los enlaces posibles con las redes a nivel nacional.
  • Apoyo para crear una aplicación móvil que permita difundir información sobre los países, sus redes y atraer recursos de otros sectores.

Comentarios adicionales de ONUSIDA:

  • Los encuentros no están teniendo el impacto esperado.
  • Tener un máximo de tres metas concretas.
  • Renovación de liderazgos.
  • Enlazar la creación de las redes con metas específicas.
  • Documentar el proceso de J+LAC desde su inicio.
  • Tomar en consideración que las muertes están disminuyendo y la incidencia subiendo, y ver como eso impacta el trabajo que hacemos.
  • Evaluar el trabajo para con el Caribe.


Tuvimos varias reuniones de Latinoamérica y AY+ (Red Regional Africana de Jóvenes Positivos- Red de Redes). En una de ellas tuvimos la oportunidad de presentar la iniciativa a Luiz Loures y Rubén Pagés. Esta iniciativa es muy nueva, hay muchas personas interesadas en que esta colaboración se concrete, y hay mucho que hacer aquí. Los puntos finales alrededor de los cuales estaremos trabajando y desarrollando un plan serán:

  1. Aprender y compartir lo que está haciendo cada red.
  2. El fortalecimiento Regional y Nacional de las Redes de Jóvenes que viven con VIH en África, América Latina y el Caribe.
  3. Desarrollo de Capacidades de las redes y grupos de jóvenes viviendo con VIH.
  4. La programación conjunta y la movilización de recursos.
  5. Desarrollar agendas conjuntas de promoción a nivel nacional, regional y nivel internacional, especialmente en torno a los jóvenes de las poblaciones claves.
  6. Abogacía Nacional y Regional sobre Financiamiento Interno.
  7. Los Datos desagregados específicos de juventud.
  8. Construir redes capacitadas para influir en la revisión de políticas y su desarrollo, en sus países y comunidades.

Conferencia Internacional de Sida 2014

Del 20 al 25 de julio se celebro en la ciudad de Melbourne, Australia la XX Conferencia Internacional de Sida, conocida popularmente como AIDS2014 o IAC2014 (por sus siglas en ingles). Esta es una de las conferencias mas grande a nivel mundial o internacional, si no es la mas grande, en las que se habla de un solo tema de salud; VIH/Sida. A la misma de dan cita entre 5’000 y 10’000 personas, entre académicos/as, científicos/as, ministerios de salud, agencias no gubernamentales, farmacéuticas, organismos de las Naciones Unidas, y lo mas importante, sociedad civil, o sea, personas viviendo con VIH. Esto dependiendo de cuan accesible sea y de cuantas becas se proporcionen. Esta conferencia estuvo caracterizada por ser la que ha contado con la mayor participación de personas provenientes de Asia y las Islas del Pacifico, y como era de esperarse con muy poca participación de personas Latinoamericanas o Caribeñas, ya que Australia es un país caro y para la sociedad civil no es muy accesible que digamos.


Tuve la oportunidad de participar de seis espacios diferentes, entre conferencia de prensa, paneles, simposios y plenarias. El primer espacio, fue una sesión satélite sobre el VIH, las Mujeres y las Enfermedades No Comunicables, en colaboración con Management Sciences for Health. Aquí se discutió acerca de  las comorbilidades del VIH, incluidos los efectos secundarios a largo plazo de los medicamentos antirretrovirales, el envejecimiento prematuro en jóvenes que hemos crecido con VIH, y por último, pero no menos importante, la salud mental.

Dentro de la Conferencia, hay un espacio llamado la “Aldea Global”, el cual es abierto al publico en general. Este es el lugar donde encuentras a todas las organizaciones, redes y agencias que trabajan directa o indirectamente con VIH a nivel global. En este lugar hubieron espacios llamados “networking zones”, donde se llevaban a cabo, las conversaciones de manera informal pero mucho mas participativas y colectivas, en las cuales podías exponer tu punto de vista y experiencias para contribuir a la conversación. En resumen, aquí es el lugar donde podías encontrar las necesidades de la comunidad, donde ocurría toda la acción y donde se generaban las colaboraciones y redes de trabajo.

Chicas de Indonesia!
Chicas de Indonesia!

En la Aldea Global, participe de dos paneles; el primero en el “Women Networking Zone”, que es donde se encontraban muchas de las organizaciones y redes de mujeres, principalmente ICW, sobre salud sexual y reproductiva. Parte de mi contribución a este espacio, fue exponer la situación de las mujeres migrantes en Puerto Rico según mi experiencia trabajando en prevención, la educación sexual dentro de las clínicas de inmunología, y las barreras y oportunidades sobre las investigaciones clínicas dándole una perspectiva de género. El segundo dio lugar en el “Access to treatment Networking Zone” de ITPC, acerca de la medicación en la adolescencia. En este espacio pude hablar un poco sobre mis y las complicaciones del tratamiento y el cuidado de salud en esta etapa, y como estos servicios pudiesen ser mas comprensivos, accesibles y amigables para los y las adolecentes. En este panel se dio un buen debate sobre a cual edad se esta listo/a para la toma de decisiones sobre nuestro cuerpo, y cual edad es la ideal para conocer nuestro estatus serológico en el caso de quienes hemos nacido con VIH.


El tema de participación de juventud, lo toque específicamente en una conferencia de prensa que tuve con otros jóvenes que eran parte del “Melbourne Youth Force”, los cuales crearon un Plan de Acción Juvenil en la Pre-Conferencia (en la cual yo no participe) que se enfoca en “Tratar. Reformar. Educar. Amar.” Dentro de la conversación que allí se dio, se trajo la preocupación de la invisibilidad de la juventud en espacios de participación, a lo cual yo respondí dando el más reciente ejemplo de la Conferencia Mundial en Juventud celebrada en Sri Lanka el pasado mes mayo, en la cual pude participar. Las negociaciones se hicieron a puerta cerrada, mientras que nosotros/as, los y las jóvenes discutíamos sobre lo que debería incluirse en la declaración que de allí saldría en las mesas de trabajo. Con muy poca participación juvenil y con muchos representantes de gobiernos adultos, la declaración final resulto ser una muy poco progresista y representativa de juventud. Al final, se dice “esto es lo que la juventud quiere”. Esto es algo que esta sucediendo alrededor del mundo, con el VIH y diversos temas, a nivel de que muchas veces los espacios de participación son meros fiascos, mas sin embargo, tengo la certeza de que este Plan de Acción si fue uno creado por jóvenes.

El simposio se llevó a cabo el penúltimo día de conferencia y el tema fue sobre las Inequidades de Genero (para ver el video), donde hable sobre el ser mujer y vivir con VIH en Puerto Rico, y mas adelante acerca del rol de los medios de comunicación y como su lenguaje puede influir para bien o para mal en la reproducción de la inequidad y estigma en las mujeres viviendo con VIH. Además se toco el tema del estigma y la percepción entre las mujeres que vivimos con VIH y como para unas tiene mayor impacto que para otras. Este mismo día tuve tres entrevistas, una para un documental que Salamander Trust de UK esta realizando, la segunda para una organización Brasileña y para Joy 94.9 una emisora radial LGBTQI de Melbourne (para escuchar audio).

El 25 de julio, el último día de conferencia fue mi oportunidad para hablar frente a miles de personas sobre la adolescencia y el VIH (para ver el video, desde 56:00 a 1:10:20). El objetivo principal de este espacio era el que yo hablara sobre mi experiencia viviendo y creciendo con VIH, lo cual no se dio, pues teniendo una oportunidad tan privilegiada como esta, sentí la responsabilidad de llevar un discurso muy político. Me enfoque en la participación, los derechos humanos, derechos sexuales y reproductivos, acceso a la salud y la urgencia de acción.

Photo by Karen Slater
Photo by Karen Slater

Sobre la participación, cuestione los espacios de toma de decisiones y cuan significativa o real puede ser nuestra participación, si no somos creadores/as, desarrolladores/as, implementadores/as  y evaluadores/as, incluidos espacios, como en el que ese momento estaba, una plenaria, los cuales están reservados principalmente para la comunidad científica y académica, en vez de para personas viviendo con VIH, quienes somos la razón de ser de todo el asunto. Acerca del acceso a la salud, sobre lo que significa tener calidad de vida, más allá de tener la terapia antirretroviral disponible, servicios complementarios y cosas esenciales como techo, agua y nutrición, hasta la manera en la que somos tratados/as por profesionales de la salud y como esto violenta nuestro derecho a llevar una vida digna. En derechos sexuales y reproductivos, el acceso al testeo confidencial y seguro para adolecentes sin el consentimiento de sus padres, la esterilización forzada a mujeres VIH positivas que aun no se logra erradicar, y la realidad, los y las adolecentes están teniendo sexo y el no proveerles la educación y protección necesaria fomenta la incidencia.

Hice mención de las poblaciones claves y como el no reconocerlas es una agresión a su propia existencia y mas aun cuando se es adolecente. La expectativa de vida, que se dice que es la misma que las personas que no viven con VIH, y cuan real es esto, cuando hay países que criminalizan el VIH y la homosexualidad; cuando quienes hemos vivido toda la vida con VIH no sabremos que pasara con nuestros cuerpos en 5 o 10 años porque no hay estudios suficientes; cuando las mujeres y Transgéneros somos víctimas de violencia de genero; ó cuando migrantes y trabajadores/as sexuales no tienen acceso a la salud. Sobre todo, el hecho de que países desarrollados están a punto de firmar acuerdos que afectara el costo de los medicamentos genéricos de los cuales los países en desarrollo depende, ¿cuan asequible es la expectativa de vida de jóvenes y adolecentes viviendo con VIH en el mundo?

Les recordé, y les recuerdo: el Sida es la 2da causa de mortalidad en adolecentes en el mundo. La primera, accidentes en la carretera, o sea; no hay ninguna otra epidemia o condición de salud que este por encima del VIH/Sida actualmente. Si fallamos en establecer en VIH como prioridad en la agenda Post2015 (MDG) y dejamos que se diluya dentro de otros temas de salud, ¿Qué pasara en 15 años más cuando tengamos que establecer nuevas metas? ¿Continuaremos hablando del “Fin del Sida” en 2030? Nos encontraremos allá y veremos…

Where are we headed with HIV & Adolescent. LORANGELIS