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

The Specialty of HIV


It was a normal day when I saw my pharmacy calling me. It wasn't unusual to receive a phone call from my pharmacist. Sometimes they would call to remind me my prescriptions were ready and yes, even check-in to see how I was doing.  I was fortunate as I frequent them often for my prescription needs. They have been so much part of my life in the last eleven years that I even wrote about them in a previous blog post.  For those who are unfamiliar with that blog, I spoke of how the people at the pharmacy helped me find my new HIV doctor, encouraged me to seek a simpler medication regimen and the greatest help, connecting me to the AIDS Drugs Assistance Program (ADAP). At that time I was struggling to pay my co-pay which was rising faster than my paycheck. So when my phone rang I wasn't expecting to hear anything bad from them. Unfortunately it was the beginning of my hell and my unfortunate introduction to 'specialty pharmacy service'.

                Specialty pharmacy service basically limits how and where you can get your prescription filled based on your disease. For me, according to New York University (NYU), the issuer of my medical coverage, my HIV diagnoses fell into the specialty category. That meant my only choice was to receive my prescriptions by mail or visit any national CVS drugstore. The small neighborhood pharmacy I frequented for the past years would no longer be able to fill my HIV prescriptions. So instead of walking the three blocks in my neighborhood, I'm now forced to ride a subway to a pharmacy twenty blocks away.  In addition instead of the specialized care one gets from a local pharmacy, I'm now one of thousands at a national corporation. What's so special about that?  

The other option for me is the mail delivery option. This is a monthly drop-off service of your pills at your doorstep. This may sound ideal but for those who have yet to share their status or living in a situation where it's not safe to reveal, this is not an option to consider. And since each package has to be signed for, the added expense of a P.O. Box along with the additional cost, makes it less attractive. Besides anyone who has a package delivered by UPS, knows the frustration of getting a pink slip letting you know you missed them. This often leads into a frustrating game of playing tag to get your package so you won't have to miss any dosages. There is also an option of delivery to your work space but again if your co-workers don't know about your status they may start to wonder about the regular shipments of pills.

I wanted to opt out of the specialty care program and continue my relationship with my current pharmacist. I first had to discover where this mandate came from. That meant my first call went to United Healthcare, the name of the insurance company on my card. They informed me their hands were tied and I had to speak to the HR department at NYU as this order came from them. From there I went into representative hell as the people I called were the first line to protect the decision makers. I knew the frontline staff wouldn't be able to help but I had to start somewhere. It was an endless game of repeating my frustration to each person as I was shifted from one to the next.

          I was always polite as I knew it wasn't their fault. I called so much they even knew me by name and we would talk about the weather. Some also sympathized with me and felt it wasn't right I was being pigeonholed. One rep even wanted me to keep her updated on my battle. I finally made headway but only by letting NYU know that I was planning a protest of this decision. My protest would consist of me refusing to set up new service at CVS which of course meant that I would be without meds. I was prepared to not get my meds refilled and inform NYU that their decision was affecting my health and life.

        It was a gamble but it worked as I finally spoke to a senior official in the HR department. She told me that NYU was doing me a favor by making it easier for me to obtain my pills and they were doing this for me. It was as if she had the script prepared for this conversation. I wanted her to know I found this discriminatory to those with HIV and in a way a punishment. I asked her where she got her prescriptions filled and was met with a non-response as I'm sure she could go anywhere, even if it was a local pharmacy three blocks away. NYU is not looking out for my health as she claimed. They are looking to save money. That's the only reason this was decided. Their ability to save dollars overruled my health.

      I have yet to have them reverse their decision as it's a waiting game. They don't have to worry about their refills running out. So those who are in the processing of fighting this requirement often give up as they're interrupting their medication regime, something strongly advised not to do.

     As usual my local pharmacy provided me with good insight as they have seen other HIV customers simply give up fighting. I'm not the only one. There are others like me with HIV who has spoken out against specialty pharmacy programs and tried to remain with their local pharmacy instead of a chain. In fact last year New York passed the Anti-Mandatory Mail Order Pharmacy bill. The bill closes a loophole in state law that currently allows the health insurance industry to prevent local pharmacies from qualifying to fill prescriptions deemed "specialty" by the industry, even if they match the cost. Unfortunately for me since NYU pays full coverage they have found a loophole to allow them to discriminate.

     Claims of discrimination may seem harsh but there's no other way to look at it. There's no other word that describes the fact that because you have a certain health condition you have these limited options versus others who have the same insurance but because they don't have HIV, have a range of choice.

     And that's what it comes down, choice. And I feel simply because I have HIV my choice shouldn't be taken away, especially so someone can make a profit. At this moment my battle continues to restore that choice and I hope in the end to help others like myself who are forced to fight for the right to choose where they get their prescriptions filled.

    I would love to hear from others who were forced into specialty pharmacy programs and how you handled it. The more sharing of this blatant discrimination, the more ammunition can be used to defeat this practice.

So shame on you NYU for treating me like the 'other' and adding to the stigma of HIV. 

Aundaray on: On the web

The Ouchiness of HIV


Recalling a conversation I had early in my life, it was a simple question asked by a colleague. I was sharing my news of being HIV positive and he appeared to have sympathy to my story. I wasn't looking for it but nonetheless it was offered. Unfamiliar speaking to someone HIV he then asked me a question that made me winch, "Was I going to die?" Again I knew he wasn't coming from a place of malicious intent but unknowingly to him he brought forth in me an uncomfortable state. It was an 'ouch' moment. A statement that was inappropriate based on the sensitivity of the subject-me, and my current situation-my status. But again, not knowing- him, he asked an inappropriate question.


It seems like a no-win situation if people who don't know about HIV, are unable to ask questions based on the perceived insensitivity. How can people not offend or place one in a box? It's a tricky question as like my friend, it's not their intent. They just don't have the understanding that there are certain sayings that should be avoided to not invoke an 'ouch' moment.

To help bridge the dialogue I'll point out certain remarks which can cause an 'ouch.  Not everyone will agree with the list as we all have different level of tolerance. Not to mention the overly politically correctness of said statements and how some may feel a backbone is needed. In my defense as a man who has lived with HIV for twenty something years, my 'ouches' are less painful but for someone newly diagnosed, they may have yet to build a resilience to such questions.

So I present my 'ouches'

1.       Are you going to die?

We're all going to die, so my immediate response would be yes. In relation to HIV the answer is no. This question establishes a connection between death and one's status which today is not the case anymore. This stigma belief has been attached to the HIV since its birth when men were literally dying. Yet unlike previous years medical treatment has advanced greatly and the numbers of death from HIV has decreased. Someone with HIV today is more likely to get hit by a bus than die from the disease.

2.       Who gave it to you

For me this is 'none of your business' question. It resonates with gossip as any information I provide won't help me with the support system I need. It also makes a person relieve that moment that some may want to forget. Also there may be a perception that judgment will be placed and questions will be raised about a person sexual practice. For those who haven't come out, the question is especially terrifying and may prevent them from seeking additional health services. The only one who may ask this question in a different way is a doctor as he/she is asking to determine a course of treatment for you based on your sexual history.

 Are you clean?                                                


This is a question not asking about the condition of your house or whether you've taken a bath lately. This is another way to ask whether you're HIV positive. You'll most likely be asked this on online hook up sites. There are various campaigns which points out the detrimental aspects of this term and the stigmatizing aspects of this phrase. Immediately one relates the opposite of clean is dirty and by asking, if the answer is yes the assumption is that the person is dirty, unworthy, damaged goods. Asking someone their status before sex is smart, for everyone, not just those HIV negative. Yet to use this particular phrase is troublesome.

 Are you undetectable?

This is a fairly new question usually by those who have a desire to engage in unsafe sex. Unfortunately this term has created a subgroup within a group. The intent to have sex with you is not based solely on you as a person but on a set of numbers provided to you by the doctor. There are recent studies that show if someone is undetectable and regularly follow their regimen the risk on HIV exposure is small, yet there is still a chance. Also for those who aren't undetectable for any reason they can still use safe sex methods and not be disqualified. The worrisome nature of this question also provides the impression HIV is the only concern and not any other STD's which should also be in the dialogue.

 You don't look like you have HIV

This is more a statement than a question and I still laugh when people share this with me after all these years. I always feel it's someone's way of giving me a compliment. It's unfortunate that after all these years there are those who insist that one can look at a another person and know whether or not they're HIV positive. This has existed since the early days of HIV when people developed gaunt features and visible sores, but that is no longer the case. HIV does not have a look, smell or feel. You can be muscular or thin as a rail, rich or poor, any race or gender and still have HIV. So sharing this statement is also sharing that you don't have full knowledge about HIV.

 Are you infected? 


This is my own 'ouch' statement and may not exist on anyone else list. The word just doesn't bring forth to me a positive image. The word itself has such a similarity with words like contaminate, ruin and blight. To me it builds on the stigma that having HIV makes one less of an individual. In my writings I tend to use 'exposed' when describing a person's status. It doesn't seem to have such a negative image that the word infected creates. But again this is just my own feeling.

What are your 'ouch' moments or am I and others being to overly sensitive. Share and discuss how we can move past the 'ouchiness' of HIV


Aundaray on: On the web

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



Blog Roll

Subscribe to Blog

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

Recent Comments

  • Louie P: Hi, If you have UHC and their pharmacy benefit is read more
  • Alvin David: You are being discriminated against because of an ADA defined read more
  • MDP: It is no different than any other illness -- people read more
  • Blessnlovely: I can relate. But on the other hand, I keep read more
  • Marvin Innes: I really think you hit the nail on the head read more
  • JS: Excellent post! I'm of two opinions... On one hand, everyone read more
  • 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


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