Subscribe to:
POZ magazine
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join

6 Reasons to Swallow


One of the biggest decisions when it comes to one's HIV care is whether or not to start taking HIV medication. It may sound like a no-brainer but for those directly affected it's not an easy decision to make. Until a cure is found, starting a HIV treatment is a lifetime commitment filled with new rules and schedules. Not only does one have to deal with the reality of HIV but also other factors come into play like cost, fear of side effects and stigma. It's a lifestyle adjustment and yet it has its benefits. Benefits such as making one's HIV manageable and the allowance of a normal life. But how does one make that choice and what should one consider before taking HIV medication?

According to the CDC just half of HIV-positive men who have sex with men got the treatment that could save their lives in 2010. During the moments after my own HIV diagnosis, one of my fears was feeling I had to rely on pills to maintain my health. I considered myself a self-sufficient person and wanted to be in the driver seat when it came to my health. I defiantly didn't want the dependency on any external factors. Especially something I seemed I had to swallow on a monthly basis. 

images (12).jpg

Despite my doubts I finally gave in and it wasn't as bad as I thought. One of the deciding factors was knowing it was much easier to address my status while I was healthy and not waiting until it became more complex. Also after seeing my t-cells drop low and watching my viral level reach new heights, I knew I had to do something and attempting to place my head in the sand wouldn't change my HIV status.  So starting a HIV medication wasn't easy but it was one of the best decisions I could make. Of course it took some adjustments but nothing I wasn't able to manage. In fact I feel starting a medication regimen has contributed to my current well being.

Not everyone who tests positive needs to take HIV meds right away. Starting medication consists of several factors your doctor will take into account. They'll take into consideration your T-cell count, viral load and any other health conditions you may have. So for those undecided I would like to offer six good reasons to consider swallowing.

1. It allows you to be proactive rather than reactive

Starting a medication regimen allows one to gain control over their health rather than feel as if you're losing control. You're now taking charge of your health and not having a feeling of 'whatever happens, happens' emotion. You're telling your own self that although you never asked for the disease, its control of you stops right here! Control is the key word as you don't give it up by taking medication. You instead are making the choice to have a long healthy life.


images (13).jpg


2. You're healthier than those without HIV

I know it may be hard to believe but in some cases those who follow a regular medication schedule which includes doctor visits, have a greater chance to receive preventive care. Taking medication requires regular visits to your doctor to see how effective the pills are. Starting out it may be monthly but as you both track your health, it can be as long as three months between visits. It's during this time your doctor check for other issues which may need addressing or show up in your blood work. Compared to those who are negative and may see a doctor only when symptoms appear, HIV positive have a more proactive head-start. So although HIV was the primary reason for your visit, you can now address any new unrelated concerns.

3. It has become simpler

In the past when a person started taking HIV medication it wasn't abnormal to take several pills a day, often as much as 10. In my case it seemed like I was taking a gazillion based on what I was prescribed. That's no longer the case for me and many others. HIV medication has become simple to take and based on when one starts, it can be easy as one pill a day. Just like taking a vitamin. It also helps for those who are not ready to explain why they have so many pills bottles in their medicine cabinet in addition to making it easier for those traveling.   

4. It's not just the pills keeping you healthy

When deciding to take HIV medication, understand it's only one part of your health plan. Just because one becomes positive doesn't strip them of their ability of self-care. Sometimes HIV medication gets all the credit when the credit is because you were already a strong individual. You just got help during this difficult time. Your medication isn't and shouldn't feel like a crutch. Knowing your determination plays a big role is crucial.  

5. Not all doctors are the same

The reality is that one may have attempted to start HIV medication but the doctor prescribing it didn't seem to care what the patient needed or wanted. With a one sided doctor-patient relationship, it may seem hopeless especially if you're having trouble with your medication. Know that there are always options especially if communication with your doctor seems like it's hitting a brick wall. No matter what your health plan is, everyone has the right to change their doctor. You want to find one that listens to you and give you options that work for your life. On the other hand if another doctor is reinforcing what your previous doctors have recommended it may be an opportunity to hear them out and make a wise decision.

6. Everyone HIV is not the same

It's true that there are some people who have been HIV positive for years and never been on medication-yet they seem to be doing fine. If your decision to delay HIV medication based on someone else's history, you should reconsider. HIV affects everyone differently. Those on a lifestyle without meds for years are not usually the norm. Your experience will be your own and shouldn't be measured simply on others. Before deciding to not take HIV medication, just realize it won't hurt to get a second opinion from a professional.


So as I write these words, understand I was a person who was strongly against taking meds. In all my years there has been only one case when a medication caused me side effects. As I enter my 29th year with the virus, I give myself much of the credit but also have to acknowledge the assistance of the pill. So now if I'm asked if I swallow, I will gladly say yes!


Aundaray on: On the web

#HIVBlackLivesMatter Also

| 1 Comment

#HIVBlackLivesMatter Also             


Upon hearing the no indictment verdict from the Eric Garner case, I could do nothing but throw my hands up in the air and feel a wave of hopelessness wash over me. How can any grand jury view the recording of an unarmed black man, shouting his inability to breath, based on the cop's arm pressed against his throat? A choke-hold which contributed to his death and was ruled a homicide by the medical examiner. Eleven times he called out in distress to no avail. Despite the clearness of the videoed interaction, the jury still felt this was not a case worth pursuing? Again it felt as if the taking of a black life had no importance. That the justice system issues a 'not guilty' pass to those who take black lives. A 'get out of jail free' pass which communicates that everyone has rights, except if you're black; a throwback to a time when blacks had no value and were sold to the highest bidder on the auction block. So in the context of recent killings of black men by law officials and a forgiveness given to the officers, a question is asked. How does a young gay black man experiencing this inequality, feel their life matters? On a deeper level, how can we expect a young black man with HIV to look out the window of this country and find their own worth based on today's war on black bodies? Or is there a connection at all? Does the perception that black life doesn't matter as it relates to HIV, contribute to one's self care?

Attempting to navigate the reasoning for recent injustices makes it impossible to understand, especially on the heels of another 'not guilty' verdict of Mike Brown in Ferguson. Around the country people of all races are holding signs and exclaiming, #BlackLivesMatter. A powerful declaration to encompass all dark skins but especially targeted to young black males. On the macro level the urgency of the message is clear. When will the issues of the systematic destruction of black men, whether by self or others, become addressed? On a micro level and with the attachment to young gay black men, the prescribed slogan no longer becomes a statement but morphs into a question. If #BlackLivesMatter, why are HIV rates rising among young gay men of color? Why do young gay and black men feel hopeless when it comes to their health and feel HIV is their fate? Why is there no acknowledgement that they're constantly targeted by the Darren Wilsons hidden in their community? Communities filled with those who shoot their own bullets of hate and ignorance to those who happen to be gay and worse, HIV positive. What does it communicate when people cry out for the justice of a stranger but provide little empathy for their brothers who live with the virus. Does #BlackLivesMatter only if you're hetero? A man? HIV negative?  

What's the takeaway hearing #BlackLivesMatter when it's also expressed that contracting the virus is the punishment from God for being gay. Coupled with people passing theoretic judgments on why black men seemed to be favored by HIV, not understanding the failed approached of attempting to treat this disease with structures designed for the majority and not the minority. When HIV prevention generalizes a young gay black man's life and his experiences and disqualifies the societal ills he endures, instead issuing a tone-deaf mandate to simply put a condom on with little regard of the systematic tool of racism makes this one act difficult. Even with the perfect means to prevent exposure of HIV what conversations are taking place which connects race to HIV and the relation to medical adherence to those who see their existence as meaningless based on today's headlines?

People never fully understanding why young gay black men have their #HANDSUP, a display of defeat as they are consistently forced to temporarily pocket their sexuality simply to stand shoulder to shoulder with their brothers. A devalued experience of trapped between two identified communities that never offers a full embrace. One community represents place of origin and the other is a quasi-form of support from the majority gay community which offers a temporary membership, sometimes based on the fetishism or eroticism of young men and their ebony shade. The same community which expresses, "Gay Is the New Black," a mantra co-opted without the benefit of participating in the actual struggle of those who are black.


#ICANTBREATHE is a sentiment shared by those who are young, gay and black as they are no longer people but quantified as HIV statistics. How can anyone breathe when people with good intentions remind them of their deficit? Over and over, when it comes to HIV, as a young gay black man it's not a matter of if you get the virus but when? This recycled missive plugged into their heads with the messengers not realizing the long-term implications. Not taking into account how the subliminal message provides a map to predestined exposure.

If #BlackLivesMatter to certain black communities they would know that they're killing their young gay black men with the weapon of HIV stigma. That gifting tools of rejection and condemnation leads to unfulfilled access to life saving medication. Pills sometimes thrown aside as young men ask themselves, 'What's the point?" A sometimes preferred slow suicide death as the motivation for living is weighed against the decision of living on the peripheral of communities.    

If #BlackLivesMatter to black families, their love and support would exist despite their son's HIV status. There would be no second guessing of whether their exposure to a disease is a condition of affection. Unconditional love would be a right and not a gift to take away when one pleases.

If #BlackLivesMatter we will all stand together to protest the death of any black life from HIV, recognizing any death is one too many. As we march we send the message that all black life matters. And in the context of the statement, transform the word from a slogan into one of action.

And finally to the young gay men living with HIV navigating this alleged post racial environment, despite the headlines and statistics, your black life does matter. No one may tell you or give you the impression that it does, but you must cultivate and hold dear to the fact that you have value. Your life is valued. Your life story has a purpose. Know there are those who do march for you. Who hold up signs of awareness and take steps in your name. Recognize there are communities that don't hijack your movement and modify it into a hashtag. Instead they walk the streets in protest for your name.

10938551-large.jpgThey do this because they care and you should know your #HIVBlackLivesMatter. 

Aundaray on: On the web



I consider it a yearly tradition to reflect on my Re-Birthday. As I write this I have just passed the 28th year mark of living with HIV.  There are no balloons or cake with candles, which is okay as I don't need all that glitter. For me the biggest celebration I have is knowing how far I've come despite once believing I would never have this moment. 

There have been many lessons for me, countless moments of fear and waves of stigma and ignorance. But all of that has been overshadowed by the show of love and support people have enveloped me with.  For every person who has rejected me based on my status, two people have stepped in to fill the void.

I have to give myself credit for maintaining a healthy lifestyle. It wasn't always this way, especially when I learned about my status. I was angry. Angry at the world and mostly myself. My anger came out in self-destructive ways as I simply didn't care. I felt no one would ever love me. I didn't think I could even love myself.

The greatest loss is when I stopped dreaming. Before the virus I had my life all planned out and a long wishlist of things I wanted to do. HIV was nowhere on that list. So when my diagnoses came in like a storm and washed away my goals, I truly felt like I had nothing to live for. It felt like I was a lost ship at sea, floating aimlessly with no direction.

Yet by not giving up I realized I was here for a reason. A purpose I had yet to discover but nonetheless the man upstairs had a plan for me. As I discovered my reason I rediscovered my voice. I was brave enough to tell myself I had HIV instead of pretending the doctors made a mistake or someone like me could never get it. In that hearing of voice I started to share my status with others.

I shared it first with a dear friend who accepted me more. Next it was a support group which showed me I was not alone. Then with family as I found the courage to let the ones I love in on my little secret. And the fears I created in my head never came to life as they accepted me and didn't judge me. Finally I started to tell the world as I laid pen to paper and wrote about my experiences. As an actor I stood on the bare stage and got 'naked' with my truth and opened myself to the audience.

My dreams not only came rushing back, but they also came back in vivid color.

I was gifted with news from my doctor last month, when he reported my T-cells were 622, the highest number they've ever been. My lowest were around 75, a time in my life when the doctor's advice went in one ear and out the other as I felt I knew best. Later learning my doctor was not my enemy. HIV was my enemy and working together we could fight this disease.

I know for a fact I can't take all the credit for reaching these 28 years. I owe so much to the people in my life who never saw me simply as a person with HIV but saw me and loved me as Aundaray. It's that same love I have given myself and my once self-destructive behaviors are a thing of the past as I have learned to embrace the person I've become.

It's my Re-Birthday. 28. And although tomorrows are never promised, I will do everything in my power to remain the true person I am and with self-love, care and removal of negative energies, I will be here for 29 and beyond

Happy Re-Birthday to me

Aundaray on: On the web

Those Were the Days


It's sometimes difficult for me to believe but as I come upon my 28th year of living with HIV, I've come to realize I'm part of a special group. Not only am I considered a long-termer but I also consider myself part of what I call, the generation of 'First Wavers of HIV'. I define this term as those who have been exposed to HIV since it's discovery in the 80's and early 90's. For those unaware, it was an interesting time, to say the least. There were many firsts that those newly diagnosed couldn't comprehend.  It was a time of fear, not knowing what exactly this virus was and how to stop the spread . Accusations and conspiracy theories were given life. People were blaming the virus on everything, Haitians, the government, African monkeys and even a flight attendant. The way people had sex was transformed as everyone was now suspect, especially gay men. And although over the years some things have changed, sadly the fear and stigma of HIV remains the same.


The first time I heard of AIDS I had no immediate fear. Everywhere you looked, you would see the word displayed in bold red letters which screamed danger. From the headlines of national magazines to the leading story on newscasts. At the time it seemed to only affect gay men. I didn't consider myself gay therefore my concern was small. It also seemed the only ones greatly impacted were white men, so AIDS wasn't truly on my radar. But it was obvious others were talking about it as the very mention of the word struck fear.

This fear was born from the fact nobody knew the answers of how you could get HIV. Could you get it from sharing an eating utensil? Would you contract it by giving someone a hug? No one knew. It seemed there was a lot of guessing on what to do and who to avoid. I recall my own moments of having wrong information dispensed to me. It happened when I was diagnosed with the virus and a health nurse came to my home to show me how to use hot water and bleach to wipe my toilet seat clean, in order to prevent anyone else to contract my HIV. My response to her was not one of anger but learning as it was the only information anyone had about the disease at the time. It seemed her information was contagious as it became a symbol of how misinformed information could spread. Yet again that was the environment.

During the early days the word HIV didn't exist. During my own diagnosis I was told I had   HTLV-III which today we know as HIV. It was even referred to as GRID (gay-related immune deficiency) by others. All the terms were the same and It simply meant, although you had the virus, it had yet advanced to AIDS. Little consolation but something that still inspired hope.


By now people are familiar with Ryan White, a 13 year old boy who was diagnosed with HIV in the 80's. It's suspected he got HIV from blood that was tainted during a lung operation. He was a poster child representing people's fears. His presence at school caused alarm and a move was made to ban him from the school grounds. It wasn't uncommon to hear on the national news how communities were attempting to ban someone from swimming pools or any public facility. The thought of that happening today would be outrageous, but unfortunately in the 80's it was the norm.

I think we all were shocked when we saw the gaunt face of Rock Hudson. Always considered a Hollywood hunk, many fans were unaware of his sexuality and equally surprised when he was diagnosed with AIDS. Always a striking leading man he now looked thin and frail, with cheeks sunken in. You can say this was the beginning of the form of stigma when a person felt they could tell who had HIV simply by the way they looked. The joke among comedians and people on the city streets was the perception that based on a person sudden thin appearance, they most likely were either on crack or had AIDS.


It was a scary time for those living with the virus as medications options were little to none. Unlike today's large category of HIV drug options, the only pill that existed was AZT. Many took the pill despite the imperfectness of it and the unknown question of whether it would work. I chose not to take it myself as I was scared of the reported side effects. I also felt it would make my situation worse as it wasn't a sure thing. It felt so temporary and I didn't want to be a trail monkey for the drug. So I went without medication during the first 10 years of my diagnosis.

As crazy as it may seem, for those who experienced those early days, we can sit back and reminisce and affirm on how fortunate those who are exposed today have it easier than we did.This statement is not meant to say anyone recently given a positive diagnose finds it any less difficult knowing your status, but the environment and resources have greatly improved since the time I was tested. With the success of today's HIV medication, people newly exposed today may be unaware of the devastation the virus was causing in the community. Not only was AIDS making the national news, but people were dying around us. Attending funerals and losing friends and loved ones was the norm. The idea that AIDS was a death sentence was born from the numerous funerals one had to attend. Today people are still passing away but not in the numbers they once were.

Finding support was difficult back then compared to today. We didn't have a  thing called the 'internet' or social media to find support. It felt like we were alone with no one to tell our story. There was no type of HIV funding for those who had other struggles, such as poverty and homelessness or simply lacked the funds to purchase medications. No community based agency existed to go to for answers or resources. It felt like we were on our own. We stopped dating as we knew the rejection was worse than the disease itself. Unlike today where some are more open minded. There was not such a thing as "Undetectable' to form a decision of whether to have sex with a person. You were simply undesirable based on the virus you carried, left to feel your status is a scarlet letter where both communities, gay and straight shunned you.


There can sometimes be a disconnect between the 'First Wavers" and the generation today as they don't have the comprehension of previous HIV battles. Sometimes it may feel like there exists a unappreciative response to the community of those in the first wave. Many benefits such as funding, resources and the creation of many community based HIV specific agencies were created by the 'First Wave". Yet to look at the current HIV outreach and messages, they seem only directed to the Second generation. Our stories are being replaced along with our faces. We're forgotten and it sometimes feels like we're not invited to today's battle. If we are, it feels more like an accommodation. There can be a value of inserting our history in the dialogue today and align it with the outgoing prevention messages. The youth are our future and currently being impacted but we also can't forget those who came before as we're still here.

There is so much each generation can offer to each other and so many lessons shared from our histories. I'm fortunate to be part of this group of men and women who have weathered the storm but also realize there are more battles ahead. And as we get older, we will create more roads of learning as we create a template on how to grow old with HIV.

Those were the days  and ones I hope we won't have to repeat. There exist many obstacles when it come to HIV but looking back at our history we can see our battles have made some difference. For our new soldiers they should be encouraged and know victories don't rise overnight. But with your hard work, the second generation will be able to look back and hopefully document the progress made and lessons learned. Already we see signs of further acceptance with high profile individuals coming out with their status, numerous articles and blogs of people telling their stories and even dating sites exclusively for the HIV population. Advances we didn't see happening in the early days.

Those were the days and together we can make a difference for the coming ones as we look back on our HIV.

Aundaray on: On the web

His Story


Last week I had a somber encounter with a person I have known casually for a few years. For the sake of this post I'll call him Tony. In reality his name doesn't matter as he represents so many who lives with HIV. As a HIV positive person for two decades, he is a member of the group of men and women who have been positive for a large part of their lives.  In fact Tony has been positive for twenty something years. So his story speaks to the long-term survivors who are creating new chapters of dialogue. A unique audience in which the spotlight of HIV discussion often fails to illuminate.


Somehow in our conversation we started to talk about medication adherence. I was letting him know, although I wanted to take a 'holiday' (a break from my medication), I knew the risk of it. He looked at me plainly and shared he was no longer on HIV medication.

His reason was sad to hear. He reported it wasn't his choice; he recently became resistant to all available HIV medication, including his own regimen. He described how when taking his medication it would immediately leave his body either by regurgitating it or having extreme diarrhea. His doctors informed him he had no immediate options.

I knew his story as I was once resistant to my own medication and flew solo. None of the drug classes would help me. It was a scary time as it seemed I was on my own. Each month my t-cells were dropping lower and my anxiety was rising higher. What's worse, it was during the flu and cold season when it seemed everyone around me was sneezing or coughing. So it was a careful navigation of avoiding any contagious environments. Not an easy task living in New York City. it was a reminder that HIV doesn't kill but the opportunist infections one gets. So in my case, a simple bug which which before my body could fight, now had no protection.

My resistance came from not adhering to my medication. I took the pills for granted and somehow convinced myself they were only a crutch I could use when needed. So I knew my story, but I didn't want to make the same assumption about Tony. I figured there had to be some option. Alternatives such as participating in studies of upcoming HIV trial medications. This was my life-saver as I was introduced to a study which eventually was approved. A study which opened the door for new medication to help.

Sadly he let me know it didn't matter. He then said two words I sometimes said to myself but never uttered out loud.

"I'm tired"


And in that statement my attempt to persuade him to not give up was shot down. Now I knew his story. As someone who lived with HIV for two decades he was growing tired of the battle. Someone from the outside would think he was tired of taking pills but for those who are HIV positive they know it's more than that. It's sometimes the physical toll your body goes through. Maybe it's the emotional aspect that makes it difficult. And there's always the never ending stigma which trails you and seems unbeatable. And in Tony's case a new battle we all must face, aging. Only his aging included a disease which accelerated the process. An expedited process which remained unknown on what the full effect of taking HIV medication for a long term does to one organs. He was tired and I understood.

There have been days when I think I've reached my own limits. When I find myself in those alone space. When you have the countless needles injected in your arm, drawing your tainted blood for lab work. When your body starts to give up before you do. And for some, those endless days when potential relationships are cut short when they hear the words, HIV. Luckily for me I had a cheering section of friends and loved ones who kept me motivated. I also had a good life with dreams and goals. I had a reason for life.

I didn't know his story.

In his case his loved ones may have moved on or passed away which resulted in his loneliness. Maybe his reality was accepting the knowledge as you get older you have more acquaintances than friends, true friends. Perhaps his dreams were deferred and now seemed out of reach. Or maybe he reached his goals and felt there were no new roads to discover.

In his tiredness he didn't tell me he wanted to die, but in his voice I heard acceptance if that was the result, then so be it. As if his HIV had taken away his purpose.

It seemed the soft killing of his dreams and hope took out the fight he once had.

Someone who didn't have the disease or someone newly diagnosed, sleeping on clouds of optimism would judge him and tell him to keep fighting. Those who were fresh to the battle and had yet earned their battle scars, could pass incorrect conclusions. Not knowing the miles he has walked.

It made me wonder, as a long term survivor myself, was his story soon going to be mine. Would it be a test of who gives up first, me or my body?  What did my future hold as someone living with this disease for almost three decades? And looking at the physical toll these HIV medications causes as we age, what new battles waited and would I be ready?

If the people who love me left one by one and I was now in the golden years of my life, would I still want to keep going or simply raise my hands and tell myself, what comes, come. Would I now be Tony?

He was tired and his story didn't leave for any solutions. I just took comfort in him knowing no matter what decision he made about his life I would be there for him as a friend. Even if it meant the end.

That was my story.

Aundaray on: On the web

And the Band Stopped Playing

| No Comments

As the beat of the music roared in my head, I looked around at the large gathering. In the crowd were some recognizable faces and others I had never seen before in my life. In the middle of the group were two shirtless go-go dancers gyrating to the heavy thumping electronic beat, drawing a large crowd of smiling men of all ages. In the audience at the bar was another group of unrecognizable faces as the free alcohol was being poured into bottomless cups. It was the Christmas season so everyone was in a festive holiday mood, and the open bar and complimentary food added to the excitement. 

This wasn't a banker's party or a shindig thrown by the boys on Wall Street. It was a party organized by GMAD (Gay Men of African Descent), my employer at the time. An NYC based agency that was in the fight against HIV among gay black men. The atmosphere could have symbolized that the fight against HIV was over, but sadly the fight was just beginning.

In the last few years, many organizations whose mission was to outreach and provide HIV prevention to the people of color communities, have either seen their doors closed or they remain open with drastically reduced funding and staffing or program cuts.  There is much speculation on the cause in the decline of financial support programs, especially to New York City non-profits working with HIV clients. Causes have ranged from racism, accusations of misappropriated funds, the shift in focus to gay marriage and an unproven perception that, since HIV has decreased in the white community, resources are no longer needed in the people of color communities.  One thing is clear, though: from a non-profit standpoint, since the arrival of HIV more than 30 years ago, HIV has morphed from a grassroots cause into a business. This business of tackling HIV in NYC has greatly affected the gay men and women of color caught in the middle of this battle. How this model came to pass requires a look at the past.

In the 1990's, many HIV non-profit agencies opened their doors to specifically service the growing number of people of color who were quickly becoming infected with the HIV virus. During this time, agencies such as GMAD and POCC (People of Color in Crisis) grew from informal organizations, meeting in free to low cost community spaces, to brick and mortar institutions. Meetings of friends, who gathered to address a common goal, were now replaced with boards and bylaws to govern how to create innovative ways to educate the target population and prevent HIV.

New ideas were created that seemed to resonate with the community's needs. Local NYC areas saw the introduction of programs such as "Brothers Gonna Work It Out", a behavioral intervention program that provides an opportunity for black gay men to explore their decision making processes related to their health; and SISTA, a program designed to increase condom use among African American women.  Social marketing awareness campaigns were born and provided a visual context for the discussion about HIV in the black community. Support groups that focused only on people of color issues emerged as discussions of racism and inequality were inserted in the dialogue. A dialogue that gay white men didn't have to address as it was insignificant in their HIV treatment.

Financial support was abundant for HIV agencies, and once simple potluck gatherings turned into black tie affairs. Awareness of agencies serving the people of color communities increased both locally and nationally. GMAD introduced Pulse, a new glossy lifestyle magazine filled with vistas of beautiful homes and quasi celebrities. Except for the few pages which addressed HIV, the bulk of the magazine showcased exotic trips and high end clothing.The magazine was introduced during a time when sales of traditional print media were decreasing and consumption of internet media was increasing. I'm sure people were wondering why a social service agency was moving into the magazine publishing business. If it was to create a cash flow independent of grants, it would have been seen as a great move.  But the opportunity to generate revenue was lost as the magazine was offered free.

When it came to visual social marketing, young cute boys dominated the advertising of HIV agencies, as if to communicate that these young men were the only victims of this deadly disease. The sad fact is that they were not the only representation of HIV. According to recent statistics, HIV has greatly impacted the entire black and Latino communities, especially in major cities like New York City. The CDC reports that in 2011, 23,168 people of color in the United States are diagnosed with HIV and the age group affected the most are those between 40-49, yet the age group is not reflected in outreach and prevention efforts. Unlike the young men represented in HIV advertising, most individuals with HIV are not wearing designer clothing nor do they have a reason to smile. Most are classified as low income and may have very few resources. They frequently receive substandard health care and live in fear of HIV stigma and the consequences of people from their community learning about their status. In addition they are faced with other societal barriers, such as poverty and crime. For some, HIV status is a low priority when more immediate concerns, such as surviving day-to-day dominate their lives. Yet somehow these individuals have become the forgotten, even by the agencies which were formed to meet their needs.

In NYC, the party continued. GMHC (Gay Men Health Crisis) held star-studded fund-raisers, which gave a stage to the growing Ball scene. Described as an underground LGBT sub-cultural communal event in the United States in which people "walk" (i.e., compete) for trophies and prizes. They swarmed in large numbers to the welcoming atmosphere of community. Not to be outdone, POCC held well attended, extravagant gay Black Pride celebrations at the city beaches.  Excitement was contagious each year with the inclusion of A-list celebrities headlining the evening concerts. One year, it was rumored that Janet Jackson was to be extended an invitation to perform.

Big money was flowing and it seemed like the agencies serving the community had plenty of it to spend. Everything was big-perhaps to reflect the spirit of New York City. Yet, from an outside perspective, it appeared many of the functions were less about addressing the growing HIV epidemic and more about egos. Often times it seemed no expense was spared to top what was done the previous year. The events were getting bigger and bigger along with the increase of infection in the black communities.

Criticism was even directed at the city and the financial gains one could receive for having a positive HIV diagnoses.  Although the requirements have changed, simply being positive in NYC allowed an individual to obtain housing, health care and a monthly stipend. This appeared to be beneficial especially for those who were homeless and had little resources. A story in OUT Magazine featured a story of men who expressed how having a positive status, advantageous to their way of life.

The growing practice of HIV agencies in NYC to entice prospective clients with monetary incentives became the norm. Agencies discovered it was effective at bringing clients in their doors by enticing clients with gifts such as movie tickets, gift cards and subway passes. As a result, attitudes in the community started to shift. People who wanted to learn their HIV status now demanded to receive compensation for doing so. An informal client information network was formed allowing people to find loopholes in a system that didn't properly track duplicating clients. This allowed an individual to receive incentives at multiple agencies around the city for taking HIV tests and receiving incentives, despite knowing their HIV status. It wasn't unusual to have a person call GMAD and rather than ask if support was offered for those with HIV, the question was focused more on what incentive was offered. Oftentimes the financial incentive was the motivation driving people as opposed to the sense of well-being and personal comfort derived from knowing one's health condition. This exploited opportunity made it unfair for the people who were truly in need of incentives provided.

Yet agencies didn't change their practice because the number of client contacts was becoming increasingly important. Non-profits, accepting funding support from the NYCDOHMH (New York City Department of Health and mental Hygiene), were obligated to deliver a certain number of clients each quarter. Targets had to be met or agencies risked a reduction in future funding. These funding criteria created a system of agencies in competition with each other to bring in as many people as possible by any means necessary. Although New York City is vast, the many HIV non-profits often serviced the same individuals who went back and forth to the agencies. And with limited HIV funding, agencies, instead of working together, were in direct competition with one another over the small pool of funding. This created a lost opportunity of collaboration and duplication of services.

Meanwhile, the rates of infection in the black community continued to rise. But the face of HIV also was starting to have a different look. Straight women and elder populations, two groups that were afterthoughts to many agencies were beginning to quickly become affected and infected by the HIV virus. Despite the rise in exposures they were often the last ones asked to sit at the table (in deciding how to address HIV), if they were invited at all. Agencies that worked exclusively with gay black men also struggled with how to respond to rising infection rates in the growing transgender community.  These agencies often unsuccessfully used organizational models suited for the gay black men instead of creating a new framework designed exclusively for the transgender community. Providing a safe space for transgender people was no easy task. The transgender community has historically always resided on the fringes (or just outside the edge) of the mainstream gay world and some gay-focused agencies were having internal difficulties in accepting the group. 

However, the party was winding down for many HIV agencies. The celebrity hosted fundraisers were slowly becoming less affordable. And the agencies' one hundred percent reliance on government grants resulted in many missed opportunities to obtain more unrestricted private funding sources. These same agencies did not have the foresight to set aside capital obtained from their years of previous well attended events.  Instead additional money were directed to ever increasing staff and consultant salaries along with moves into more prestigious but unaffordable office spaces.

Non-profits combating HIV was now in the position of keeping their doors open as those looking for services were next on the priority list. To remain sustainable, non-profits started to change their mission and work to meet the changing need of funding. Innovation was replaced by outdated approaches. Risk-taking was seen as a bad business strategy because agencies feared losing funding if they were unsuccessful.   

Ultimately, under the scrutiny of accountability and inadequacies in prevention programming, increased oversight by government grantors revealed the widening cracks in the walls. In one such example, the executive director of POCC was investigated for improper use of city funds. According to published reports in Gay City News and other media, the POCC executive director at the time spent nearly 80,000 dollars of agency money on personal expenses, including numerous round trip flights to Los Angeles to visit his partner. There were also accusations that agency money was used to bail friends out of jail.  And the most damning allegation of all? The infamous "POCC casting couch'' for those looking for a job at the agency.

Funders began to realize that they had not provided sufficient oversight. Following an investigation, the ED was fired, the agency (which had a two million dollar budget) had its funding pulled, forcing it to close its doors.  And a much needed resource for people in the gay black community was gone. Next, the spotlight was pointed at the New York State Gay Black Network.  Shortly after, an extensive audit uncovered unaccounted for city funds, the agency was de-funded and also forced to close its doors. The next major agency to be affected by the increased oversight was the Bronx Gay and Lesbian Center. It was forced to close after the agency's former chief was charged with stealing $338, 000 dollars for personal use, including vacations and dog walkers. Now many in the Bronx, especially LGBT youth of color, are left with few resources.

The Band Stopped Playing

As I made my way to the window of the holiday party overlooking the Hudson, I saw my reflection and knew, as a gay black man living with HIV in NYC; it was the end of the party. When it came to HIV, the priority was no longer there. Gay marriage was driving the discussion and money was shifting in that direction. Based simply on the shifting focus of resources, you would think the battle to end HIV was won. Sadly, though, it remains a critically important health issue in certain communities. But instead of preparing for battle, here we were celebrating with rivers of alcohol flowing and unlimited hors d'oeuvres to consume.

Perhaps it would be the last lavish celebration thrown by an HIV agency. The focus was now squarely on us at GMAD and the deals done in the dark that were now coming to light. The community was learning that staff was not getting paid regularly but were told to keep quiet about it. Employees, once having the benefit of their payroll direct deposited, were no longer available as it was easier for GMAD those weeks when it was uncertain if payroll was going to be met. Community reaction to both GMAD's effectiveness and its predicament was mixed.  Some supported the agency and others felt the leadership was no longer in tune with the growing need of the gay black community.

As the party ended, GMAD's own crisis loomed. The director was questioned about missing donated funds, followed by an unfavorable news story which resulted in his resignation. Since then, GMAD has been in a fight to keep its doors open in the midst of recent cuts to programming and funding. The once great agency, which in the past could afford to rent the historic Apollo Theatre for fashion shows, was now trying to figure out how to pay the rent.

The party is definitely over and the band has gone home. In its place, a new approach on how to confront HIV is developing. With new leadership at mentioned HIV non-profits, there are new opportunities to refocus on the communities that were briefly ignored. There are prospects to explore 'out of the box' fresh ideas, on how to tackle a disease which continues to ravage certain communities. Perhaps this is a chance to revisit grassroots efforts, a time when missions were driven by the work and not by the funding. When HIV was about people and not about business. Whoever is in charge will have to be creative. Have the ability to reach out to the forgotten community of women, elders and Trans. In the process restore the faith within the community that HIV agencies in NYC have their best interest in mind.

Funding that was once easy to obtain is now scarce. And the funding which is available has shifted to a medical model of living with HIV as a long term disease. Efforts to develop and create innovate ways to reach those who are hard to reach should be explored. And if successful, the onus of the community will be to hold agencies accountable and not celebrate as if the fight against HIV has been won.  

 Additional links:

Story on POCC

Story on GMAD

Story on Bronx Gay and Lesbian Center

Aundaray on: On the web



Blog Roll

Subscribe to Blog

Find recent content on the main index or look in the archives to find all content.

Recent Comments

  • Tanya : Thanks for your blog Aundaray. Swallowing those three little pills read more
  • Reggie Glover : Good article! However, I thought that after receiving the diagnosis read more
  • Donnie: I was diagnosed in 1995 and I was put on read more
  • musicmuse4u2: Starting medical treatment for HIV as soon as possible after read more
  • Charles: Great stuff! When I was diagnosed, my very life was read more
  • Tommy: Thank you for being a rare and persistent voice of read more
  • Mark Mitchell: Mr. Guess, I just wanted to take the time to read more
  • wolverinex: Hi guy, thanks for the motivation through these 4 years read more
  • Lawrence Lewis: Happy Birthday! As I approach my 17th its good to read more
  • rob hamilton: Congratulations on making it through all those hard times! Wishing read more


The opinions expressed by the bloggers and by people providing comments are theirs alone. They do not necessarily reflect the opinions of Smart + Strong and/or its employees.

Smart + Strong is not responsible for the accuracy of any of the information contained in the blogs or within any comments posted to the blogs.

© 2015 Smart + Strong. All Rights Reserved. Terms of use and Your privacy