Posts Tagged ‘living with hiv’

“She grabbed me in her arms, put me in her arms, and whispered in my ear ‘we will get through this’ to hear those words by my mother were like…it was the most amazing moment in life.”

Adrian Neil Jr. Shares his heart warming story about when he was first diagnosed.

 

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catharsis dec. 14

 

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Catharsis: A World AIDS Day Event

Date: Monday, November 30, 2015

I am Thomas John Davis an NMAC Youth Scholar

To kick off World AIDS Day I am collaborating with The Lula Washington Dance Theater with an event entitled “Catharsis”. The goal of this event is to raise awareness around HIV & AIDS by using performance art as the ice breaker to start conversations between parents, youth, artists, and advocates about disclosure, support, getting tested, and what living with HIV is like. The event will feature professional dancers and testimonies from people living with HIV as well as their allies.

Target Audience and Importance

The doors are open to everyone but the focused group is Parents and their children. I’ve chosen to focus on these two groups in particular because that’s where the information needs to start to make a change in how we talk about HIV when it comes to prevention. Children follow what their parents know weather they are aware of it or not. To lower stigma and increase the flow of valid information into a child’s life we have to also give parents the information so they are informed and up-to-date. By having youth attend with their families we are giving them an opportunity to ask questions about what they saw and to give them information that may be updated from what their parents know. This way the child and parent are getting information together.

 

The agenda for the evening

The event will start out with a quick “what do you know about HIV?” to figure out where the audience stands. This is meant to be a brief but informative section that will transition into the first performance. The first piece is about the challenges two friends face when one of them discloses that he is HIV+. This piece will be followed by a testimony from an ally who saw a family member pass away from HIV related complications. The second piece is about a patient going to the clinic to get their labs drawn for the first time. This piece is followed by a testimony from Thomas Davis and what it was like to be told that he was HIV+ and what he did from there. The final piece is a duet followed by a testimony from a sero-discordant couple and how they navigate their relationship where HIV is concerned. After each testimony/story questions and conversations are encouraged.

                                                                                    

Why dance?

When it comes to talking about HIV we tend to find the same conversations happening over and over again and as necessary as these conversations are we need to find more innovative and engaging ways of presenting them. Using dance as a way to communicate and tell a story is a great way to educate and inspire people. You are able to escape the idea that everything you say needs to be “Politically Correct”. It’s a way for the audience to experience a story rather then having one talked at them. To show this one of the pieces being shown is filmed below. This is a story of the struggles a couple goes through when HIV is introduced into their relationship. This piece is about the anxieties of the waiting room and was used to start conversations about testing, doctors visits, support, and dating. Do you go and get tested with your partner? When was the last time you two talked about your sexual health to each other? If one of you was positive would the other stay? All these questions and many more are asked in the heads of these two individuals as they wait.

The Long Wait

Choreographed by: Thomas Davis

https://www.youtube.com/watch?v=Zm6f1PhG5eo

 

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So in life we as humans are constantly growing and evolving. It’s an attempt to better us and strive to achieve the unthinkable. So many times I have caught myself being ok with the status quo and being surrounded by those individuals who didn’t have my back or best interests. Being diagnosed with HIV in 2011 really forced me to go through a sort of metamorphosis and reassess my life.

Recently many folks have been asking, “Did you go and decide to end ThePozLife.com?” The truth is that I decided to do some serious soul searching and adult decision-making. Believe it or not I used to fly before for a regional airline; however, I was sexually assaulted on an overnight and that scarred me so much flying and overnighting in hotel rooms were never the same. That night in Chicago I learned to stop being so naïve and trusting of others. Since then I had gone to working within the for profit sector before transitioning to non-profits and finally a state health department. Since being diagnosed with HIV I have been seeing a mental health professional, discovering who I was, pushing myself to go outside of my perceived limits, and then going back to accomplish my dreams. While working in the HIV field I honestly became disgusted and annoyed. I felt as if I was in a remake of the movie Mean Girls and was among folks who were in the market of making themselves “famous and notarized,” by their work rather than letting the work speak for itself. I found myself surrounding by cliques of academics, community mobilizers, social media gurus, and socialites and began to lose my identity and purpose. That was not Patrick. I was far from my roots of just posting long ass YouTube videos where I’d vent and just aimlessly talk. More importantly I lost focus and connection on the actual experience of living with and moving through life with HIV. I was now in a place where I was talking at people rather than sharing my experiences. Am I bitter how individuals in the field treated me? Yes, however I have had so many great experiences with a handful of folks who have given me so much more than a clique can; therefore, the positive experiences outweigh the negative ones.IMG_6644

It’s very frustrating to work among people who had no passion or drive to really touch people’s lives. More importantly among people who use HIV and people living with it as a tool to gain personal profits and increased social status.   I had a coming to Jesus moment where I had to really think about my future. Did I really want to wake up one day 60 years old and had been totally committed to ending the epidemic of HIV that I was not able to pursue my dreams, work within my dream job and primarily being surrounding by people who were in the same situation. Or did I want to break back into a dream job that I loved doing where I could utilize all of my talents. At that point I was close to a decision to go back to being a flight attendant.

The final straw that broke my back was being at a conference in Atlanta earlier this year where someone tried to tell me to look and carry myself a certain way when around people of power and influence. I was very confused at to why I would be invited to become part of an organization but then forced to change to be the ultra conservative, suit wearing, name throwing, and inability to have humility that they had. It wasn’t my thing and seeing how particular folks can be really changed my perspective on the colleagues in the field I worked with.

Since leaving I have not heard from many folks in the HIV and Public Health field and if I have heard from them it is honestly for something they want. I am not writing that to complain but to let you know that in life you come across people throughout your individual journey to greatness and you may not take them to you. It is ok for them to come and go. This is simply apart of the human experience. It is so important to focus on your dreams and the necessary people you either have to knock over or get through to get to the finish line. The other important thing is to make sure that you keep those valuable friends and allies on your side. These folks will support you when you are up or down in the dumps.

Being a flight attendant for one of the greatest airlines in the world is a blessing. The experience of living with HIV within a Fortune 500 company is different but I am ready for the challenge and blessed that I am able to share every moment I can with you. Remember living and with HIV is a unique situation. We have many ups and downs the others will never know about. I just keep my faith and positivity that things will work out. This ideology has not failed me yet.IMG_6617

“Im going back, back, back to my roots

Where my love can be found and my heart rings true

Im going back, back, back to my roots

To the time and the place, coming back to you.” – Rupaul 

On the Daybreak this morning, Noel Cayasso-Smith and guest speaker Thomas Davis talk about CAF’s mission.

Mr. Davis’ presentation will focus on the stigma and discrimination with persons living with HIV/AIDS.

Mr. Cayasso-Smith says that there’s so much discrimination and that it has stopped people from getting tested.”It’s a community awareness thing with the stigma and awareness that we are trying to break,” he said.

Mr. Davis shares his story of when he was diagnosed with HIV in his early 20′s. He also said education is important and that not educating young people can cause more harm than good.

This is the third year that CAF has hosted this event.

Like it or not but HIV related stigma can be seen everywhere. From the entertainment industry all the way to our phones. Mobile networking apps or as I like to call them “FCK or Hookup apps,” carry much of the stigma. Many of these companies like Grindr, Scruff, Jack’d, and Adam4Adam do provide ways for AIDS Service Organizations/Community-based organizations to advertise services, and is a great opportunity to outreach to our community. Many of these applications allow for you to share your status, and even note your last testing date if you are positive; however, we are still turned down, blocked, or face ridiculous comments when we disclose our status to people or reach out to them as a openly positive person.  So here goes a list of the SHIT IGNORANT GUYS SAY TO POZ GUYS Online:    

 

“Are you clean/DDF?IMG_6869

Let’s face it before you can even get into saying what you are into or what your favored dick size is you are faced with either reading this in a profile or after a light exchange of messages. What tickles us is the fact that folks common sense would either be confused by what someone means by clean or not disclose one’s STD and HIV status in order to bust a nut or avoid being discriminated against. Let’s not mention the fact that many are positive yet just do not know it.  How about saying something like “I frequently test and currently negative for all STDs including HIV.  How about you?”  We are all clean.  Let’s stop using cleanliness to describe status and keep it in the hygiene category.

 

“Sooo… can you still fuck?IMG_7183

I take it that the  lack of comprehensive sex education and just lack of contact with positive guys attributes to this. It is really sad that guys think that an HIV positive diagnosis means that we have to give up our sexual pleasure. Yes, guys who are positive can have sex and lots of it. Many use the term “undetectable to share that they are virally suppressed and on top of the virus.” Studies have shown that an undetectable viral load means a significant decrease of being infected with HIV if exposed.

 

“Why are you still having sex and/or bare backing if you are positive?”  

IMG_7108 The answer is simply because I can. Just because someone is HIV positive doesn’t mean they have to confine themselves to a life of celibacy nor only have sex with positive guys. It’s all about sex positivity. If both parties are cool with it then so be it.

 

 

 

IMG_9305

“But you’re such a good guy.”

 I’m still a good guy. Being HIV positive doesn’t change who I am as a person.  

 

 

 

 

 

 

 

“I prefer my guys clean or DDF.”

IMG_4643Yet if no one even mentioned HIV you wouldn’t have brought it up or asked when the last time I tested (or cared if it was more than a year). So many put clean or DDF in their profile yet don’t understand you are basically saying anyone who is not STI or HIV free is dirty. Plenty of times you wouldn’t even be able to know a person’s actual status based of off window periods.  We need to learn to have healthy conversations surrounding current STI and HIV status.

 

 

 

How did you get it?

IMG_0683 HIV isn’t something you just pick up off the sale rack at TJ MAXX. Everyone’s experience with the virus is different. More importantly, it’s probably not your business. There are some people who are willing to talk about their own story, but that doesn’t mean you should assume it’s okay to ask other poz people the same question. It could be a difficult conversation for some people to have based off of past negative or traumatic experiences . Don’t be that person who reopens old and unhealed wounds.

 

 

“Who gave it to you?”tumblr_n8qcsl5s0w1tdjuqvo1_500

Who gave you Herpes? Oops was that too much? I mean it’s like asking someone what they went to jail for. Let the person tell you that information when they feel comfortable around you. Again there is such a thing as too much information.

 

 

 

 

 

 

“Well you don’t look like you have it?”IMG_8295

What does someone who has HIV look like? Remember we are now in 2015 not the 80s. Due to the available and much needed medications, research, medical services, behavioral health services, prevention options, and so many other programs we have the necessary things to stay healthy. Folks living with HIV keep their viral loads down, their CD4 counts/percentages up, and overall holistic health flourishing. Some people don’t look like total a-holes but hey looks can be deceiving, am I right? Listen, people with HIV look like you or me or him or her or them. HIV doesn’t look any specific way. Did you think I’d be wasting away? That we’d be frail and sickly little things? On the contrary, there are lots of hot guys out there living with HIV! (See thepozlife.com and this article for perfect examples.)

 

 

“Isn’t it like you just take a pill and everything is good?”

IMG_0743If only that was the case. Folks who are positive deal with so much stuff that goes beyond just taking a pill. Remember the fact that stigma creates barriers to staying adherent to medication and add a host of other mental and social issues. I hear horror stories of how people hid their meds in over-the-counter bottles, take their meds in secret, or even suffer from behavioral health issues. I have even been open about my own chronic depression and PTSD, which can cause huge barriers socially and to medication adherence. It takes those who truly understand the nature and severity of what people living with HIV are going through to understand that it isn’t just like a antiretroviral HIV pill(s) can fix things. So much time is spent with a mental health professional and a medical provider always checking to makes sure things are well.

 

“Do you think I need to be tested?” IMG_9925 Only you can answer that question. I would say if you haven’t tested in 6-12 months and have been potentially exposed to HIV then yes you should. In addition, if your local health department has contacted you or Disease Intervention Specialist (DIS) and they confirm you may have been exposed then testing would be advantageous.

 

“I was tested for HIV last year?”

IMG_6565 This is a tricky one. When I provide HIV counseling to many people who happen to be young and old alike I have to remind them of the window period, the need to frequently test, and the fact that based off of things like the amount of sex and number of partners may create the benefit of screening multiple times within a year (3-6 months). I tend to recommend HIV and STI testing every 3-6 months for folks who are highly sexually active

“Will you die?” IMG_7275

Chile boo. I am not going anywhere. As long as I take my meds as prescribed, go to my doctors visit, and live an overall holistic healthy lifestyle I will be just as old if not older than you. Yes! And so will you! I’m assuming most guys mean to ask; will you die due to HIV related causes? C’mon guys. Great strides have been made in enhancing treat and the lives of those living with the virus, and discovering out how to control it in order to live a full life. As long as a poz person stays in care and/or sticks to their medications then there’s hardly a reason that their lifespan is decreased BECAUSE of HIV.

 

“But you’re such a good person.” annoyed-2 Sooooo everyone else that has HIV are terrible people? No my friend HIV doesn’t discriminate. It doesn’t care which walk of life you come from. You could be the biggest sinner around or a total saint!  You could have a purse so heavy making Oprah dollars or dirt poor.  Keep your pre-conceived judgments to yourself.

 

 

 

“How did you get it?”annoyedgif

The same ways HIV is transmitted. Did you want some elaborate story? Well that depends on how comfortable the poz guy you’re talking to is up to sharing.

 

 

 

 

“Who gave it to you?” tumblr_m9ckn3wgDj1qfc8cw Again this is probably not your business and probably not the most comfortable conversation to have. Also, does it matter? If you’re worried about knowing who has “it,” and who doesn’t so you can know whom to avoid, then you probably should be taking other precautions. Like, I don’t know, talking about the matter with your intimate partners, condom use, and even PrEP?

 

“I prefer my guys clean.” not-mr-clean Hey good for you! Some like ’em clean, some like ’em smelly! STOP equating being negative to being clean! If negative is too difficult of a word to type out, use “neg,” maybe? It’s also only one syllable!

 

 

 

 

 

 

“I’m so sorry for you.”

tumblr_nlahy4GIv81rl3tufo4_r1_400 And I am so sorry that you are ignorant as hell. No one asked for apologies. Why? Who died? Is my dog okay? Dude, where’s my car? I kindly reject your invite to the pity party. Instead of feeling sorry or sad for me, you could try to support the HIV community by broadening your horizons and giving back. Educate yourself and start the conversation with your friends. I’m only sorry that people still cringe at the acronyms HIV and AIDS.

 

 

 

 

 

“Why does it always have to be the cute guys?” small-violin

Why does it have to be anyone at all? Why do folks think that HIV only goes after a certain look? Although certain populations are impacted greater than others anyone can be HIV-positive. It does not matter how you look, your socioeconomic status, the amount of followers or likes you have, or even if you identify as a top or bottom. Trust there are some positive tops out there.

 

 


 

Patrick Ingram and Adrian Castellanos are two awesome gay men of color living with HIV sharing their experiences.  Please share, spread the word, and continue to keep in touch with ThePozLife.com.  For media inquiries please contact Patrick@thepozlife.com

 

 

 


Thomas shares the moment when he told his parents he was HIV+ and talks about what the year was like disclosing.

Sources: CDC Fact sheets (Understanding the continuum)

Initial Investment to Help Research, Identify and Apply Innovative Solutions in Baltimore, Maryland and Jackson, Mississippi – Two of the Cities Hardest Hit by HIV/AIDS 


 Research Triangle Park, NC – February 4, 2015 – ViiV Healthcare today announced the launch of a four-year, $10 million initial investment to fuel a concerted community response to the HIV epidemic among Black Men who have Sex with Men (MSM) in Baltimore, Maryland and Jackson, Mississippi, two U.S. cities hard hit by HIV/AIDS. The goal for this new initiative named ACCELERATE!, is to help speed up community-driven solutions to increase access and engagement in supportive HIV care and services by Black MSM. ACCELERATE! aligns with the National HIV/AIDS Strategy and its imperative to focus on communities most disproportionately impacted by HIV/AIDS.

In recent years, there have been increased efforts to address health disparities and social drivers that contribute to the disproportionate impact of HIV/AIDS in Black communities. However, the data continue to tell the story of an enduring and persistent epidemic among Black Americans, and Black MSM in particular. A recent study in The Lancet found disparities across the HIV Care Continuum –

the series of steps from when a person is diagnosed with HIV through the successful treatment of their infection with HIV medications – with 1 in 3 Black MSM found to be HIV-positive, compared with less than 1 in 10 White MSM. The study also found just 24 percent of Black MSM stay in care and 16 percent achieve viral suppression, compared with 43 percent and 34 percent respectively for White MSM.[i] These devastating data, along with the stories of individuals, families and communities affected, mandate the urgent need for new, community-driven approaches and solutions.

“As we commemorate National Black HIV/AIDS Awareness Day, we are proud to announce our ACCELERATE! Initiative, conceived in collaboration with national and community partners to help address the toll HIV/AIDS continues to take on Black communities,” said Bill Collier, Head of North America, ViiV Healthcare. “It’s our ambition that this investment will help build innovative, community-driven solutions to help reduce the HIV epidemic among Black MSM, and strengthen services and communities to support them.”

The ACCELERATE! Initiative leverages what ViiV Healthcare has gleaned from a range of community stakeholders and builds on available insights, community dynamics, best practices, evaluative measures and the conditions that present persistent challenges in Baltimore and Jackson.

Consistent with other ViiV Healthcare-supported programs conducted over the last five years, this initiative began with a convening of a wide range of stakeholders. The Baltimore meeting was held at Johns Hopkins University and included community representatives, allies, state and local health officials, healthcare professionals and academic researchers. The Jackson meeting was held at the Mississippi State Department of Health’s Office of Epidemiology and included a similar range of voices. These discussions, and other conversations with Black MSM and key stakeholders, confirmed the collective will and commitment to accelerating the response.

David Holtgrave, Ph.D., Professor, Department Chair, and Co-Director of the Center for Implementation Research at Johns Hopkins Bloomberg School of Public Health, welcomes the ViiVHealthcare community innovation investment. “The disproportionate impact of HIV among Black MSM in our city is a truly urgent public health issue, and there are unmet public health needs that must rapidly be addressed. We welcome an accelerated response to HIV/AIDS in our own backyard, and appreciate this unique opportunity to participate in a discussion with our colleagues and friends in community organizations, health departments, other academic institutions and those with allied concerns, to help conceive, apply and evaluate innovative and evidence-based services so that we can urgently address this critical health disparity.

“Jackson, Mississippi has alarmingly high rates of HIV infection among young Black men; our city’s infection rates are among the highest in the country. We applaud ViiV Healthcare’s commitment to investing in innovative programs to reduce HIV/AIDS-related health disparities in Jackson. We believe that participation from the private sector is an important complement to our local efforts and programs to reduce these disparities,” said Leandro A. Mena, M.D., MPH, Associate Professor of Medicine, Division of Infectious Disease and Director, Center for HIV/AIDS Research, Education and Policy at the University of Mississippi Medical Center.

The first phase of the ACCELERATE! Initiative will include ethnographic research with Black MSM and community members to identify gaps, assets, challenges and priorities, along with an intensive mapping process. ViiV Healthcare is in discussions with academic centers in Baltimore and Jackson for the Initiative’s research, monitoring and evaluation activities. The insights obtained will help determine the right approach and inform the next phase of this initiative in the effort to reduce the HIV epidemic among Black MSM and affected communities, and strengthen the systems that support and sustain programs that work.

About ViiV Healthcare 
ViiV Healthcare is a global specialist HIV company established in November 2009 by GlaxoSmithKline (LSE: GSK) and Pfizer (NYSE: PFE) dedicated to delivering advances in treatment and care for people living with HIV. Shionogi joined as a shareholder in October 2012. The company’s aim is to take a deeper and broader interest in HIV/AIDS than any company has done before and take a new approach to deliver effective and new HIV medicines, as well as support communities affected by HIV. For more information on the company, its management, portfolio, pipeline, and commitment, please visit www.viivhealthcare.com.