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The + and - of HIV Online Support

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The + and - of Online HIV Support 

 

Things sure has changed since the last time I was diagnosed with HIV. We're talking about 1986 when the rates of HIV were low in addition to services offering support. Learning you're HIV positive can be such a traumatic and life changing event, that it makes sense one wants to speak to anyone who can inform them of what lies ahead. In the mid 80's there were no such thing as the internet, the ability to Google or online chat rooms. And what information available was called into question as it was still a guessing game on not only how what HIV was but how to live with it. 


Push the clock forward to today and now there's so many resources at your fingertips, literally. Whether it's to find  support, locating a new HIV specialist, learning about medication options or finding a romantic partner who may or may not be HIV positive but open to dating someone who is. 


Today we have message boards both moderated and un-moderated by individuals around the country who comment to each other about their HIV status. Like me, there are others who share their stories within a blog- providing their experience in order for people to relate or be inspired. Dating apps are adding a field for people to self-identify as HIV positive,  making it easier to reveal your status to a potential partner or new friend. And information pertaining to the community is available as it shares local resources available for those living with HIV.  


Yet like anything in life there's negative and positives. Online support and information for HIV is no different than the real world as one learns how to navigate and locate correct and supportive information. HIV online support sometime comes with it's own risk and rewards.  

The following are what I consider the plus and minus: 

Plus 

  1. For those who like to remain anonymous about their status and lifestyle- this can be a way to have discussions that pertain to your situation. Whether through forums or online discussion- they can share without fully sharing personal information.  

  1. Those in rural communities and some metro areas often lack the proper access to HIV information. The internet can open this world and based on search- provide the necessary information one needs. It has the opportunity to lessen the feeling of isolation.  

  1. Dating can be difficult for those with HIV based on the stigma which exists in both the straight and LGBT communities. Along with the known online dating apps there are emerging ones specifically designed for those who are HIV positive.  

  1. One can research new studies being conducted within the field and learn about medications which are in development. This information can provide a hopeful outlook on what lies ahead in the future.  

  1. One of the greatest benefits is to create an online community which encourages you as you share information such as keeping regular doctor appointments, the positive effect of new medication you're taking or sharing with people the good news of your t-cell or viral load numbers. In effect you have the ability to create a cheering section. 

 

And as stated there are also some downsides of online HIV support which must be taken into consideration.  

  1. Although some online support groups can be a great resource, they don't have the same rules of a professional run group. Some groups may not be able to assure information you share will be held in confidence and discreetly. 

  1. Also one has to be mindful of who's in the group or who's running it. Advice given by fellow members and even the facilitator can sometimes be inaccurate. The information is sometimes only one persons opinion and not medically sound. 

  1. Online dating sites, even for those who are HIV positive may attract different people for different reasons. One may join to find a long term mate, but others may simple be looking for an immediate and one-time sexual connection. Also a risk for those who are discreet within their community, is having your picture with your status which can be shared with others locally online. 

  1. I feel one of the largest drawback of simply having your HIV support online is it can exasperate feelings of isolation, one of the precursor to depression. A balance should be in place to not only have online support but someone who can offer some type of support in person. 

  1. Another drawback is to the ease to use online HIV information in lieu of a real doctor visit or advice. It can be so easy to Google symptoms you're having and try home remedies- but when it comes to your HIV health, this can be risky and unadvised.  

 

Of course there's many plus and minus when it comes to online support. The secret as shared before is finding the proper balance to compliment your life. There are many reputable sites which has been in existence for years. Your role is to find who and what speaks to you and whether you trust it. It's hard to argue the advances which have been made and online HIV information shows just how far. 



Aundaray on: On the web

Domino Effect

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As I write this blog I'm flinching from pain. Just a few days ago I was discharged from the hospital after having a voluntary surgery completed on my right upper quad muscle. The procedure called for the doctor to open my leg, take the quad which had collapsed and re-stretch it back into shape with the goal of obtaining not all, but most of my range of motion. So what does this have to do with a blog about HIV? Everything as it highlights the domino effect of becoming resistant to your HIV mediation. 

My downward spiral has been documented in my previous postings as I sounded the alarm on how not to become resistant to your HIV medication. Rather than come from a scholarly direction, I instead shared my personal experience of becoming resistant to my medications.

Simply put, I wasn't taking the prescribed medication as I was supposed to. Instead I chose to take it when I 'felt like it' and most of the time I didn't feel like it. It was more than a drug holiday, it was a refusal to comply. About the only time I would take them consistently was when I knew I had an upcoming doctor's appointment and he would be looking at my viral load and t-cell numbers.

This may work in science fiction but in real life, your body is completely aware of your behaviors and it seems the HIV virus is even smarter as my inconsistency of my meds provided a window for the virus to build up a protection and make the drugs I was taking no longer effective.

The kicker is that I started out not wanting to take HIV medications, but now the choice was no longer mine based on my resistance. In fact the only option was an injectable medication named Fuzion. So I went from the simple choice of easily swallowing several pills a day to the hard choice of pushing a needle into my body, twice a day.

This is where the domino effect begins as often our body no longer has the assistance of medication to keep the HIV at bay. One thing leads to another which leads to another. A cold may lead into a flu which may lead into a more serious matter. A twisted chain reaction. For myself my domino effect was injecting myself with a needle into a muscle that didn't quite like it. It was not the medication but the way I was pushing the needle into my leg. Stubbornly using the same leg when I was told not to. That led into the muscle developing a weakness which limited my range of motion. With the limited range other parts of my body had to compensate which was now throwing off the natural movement of self. And as I became aware of the falling dominoes I knew that if I didn't address the muscle damage I would be facing a lifetime of using walking devices especially as I got older.  

Already my walk was being transformed, and not in a good way. People would ask why I was limping, not realizing that I had a quad muscle that was weak. A weakness which's origin began with developing a resistance to my medication. The loss of range in my leg affected other areas of my life as I could no longer go to the theater as bending my knee in a sitting position was difficult. I no longer had the ability to ride a bike or to even run. And the simple act of climbing stairs was difficult with me holding onto the handrail to go up or down.

Thankfully I have a job which allows me to not only complete the surgery but also the ability to work at home for the month it will take me to recover. I was able to stop the domino effect of all these negative actions working against me.

So for those who wonder what's on the other side of the HIV resistance wall. I will say your wish of not taking a pill is there. But just know along with that desire comes the unexpected consequences. If it's really difficult to take your HIV medication on schedule, I encourage you to talk to your doctor to find a routine that fits you and your lifestyle. I can guarantee the domino chain of events which follows drug resistance is not a game you desire to play.

Happily to share that since my reawakening I'm on a once a day regimen which has made my pill consumption so much easier and with this recent surgery I will be able to resume the full life I felt was denied me. There's no more dominos falling in my life!



Aundaray on: On the web

Maybe This Time

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As I write this blog post, America is still celebrating the rights of same-sex couples to marry. Of course not everyone is celebrating. Surprisingly, along with conservatives and individuals who have opposition based on their illogical religious beliefs, there's another small group of dissenters. A small rising group of LGBTQ community members who recognize the fight for marriage has distracted from issues such as rights for the trans community, the continuing racial divide in the gay community and most importantly, the impact of HIV/AIDS which has lost its significance. It's not as if members within the gay community don't feel same-sex marriage shouldn't be celebrated but asking- is it our time again? With this battle won is this the time for HIV/AIDS to come back to the fore front? Is this the moment when we look to see what needs to be addressed and maybe this time, using the same energy and efforts to pass gay marriage, do the same to end or reduce HIV/AIDS?

For myself I celebrate the notion that people can get married but also recognize it's not high in what I consider important. I say this as a gay black man living with HIV and recognize the many issues that declaration comes with. Gay. Black. Man. Yes the gay part of me joins in the celebration but the black male part of me doesn't see the progress. Not when those in my community, the gay black, are still impacted by this disease. Make no mistake, despite being a gay man I will always be identified as black despite my HIV status. Even if I don't place the 'black' distinctiveness on myself, the minute I walk outside the doors of my home, society has placed this identity on me and treats me accordingly. So understand that this victory is bittersweet when HIV continues to heavily impact communities of color and the resounding silence it brings within the LGBTQ community.  

As important as the issue of marriage is, even in the early days of fighting for the right to marry, it was evident it was going to shift the focus from HIV/AIDS. One reason being the white gay men, who were the early victims of HIV, were no longer exposed at the same rate as young gay black men of color. The call for action and the rambunctious protests of groups such as ACT-UP had now turned a different corner. With the shift was the loss of financial support. Funding agencies, whether public or private, once provided support to communities along with resources. These resources addressed the issues of stigma and testing, other factors which contributed to HIV infection. Admittedly there were some abuse in the funding system as some agencies were not accountable for monies given, but it was more reckless to throw the baby out with the bath water as crucial services were either cut or defunded.

One unintentional ally was the media, as it spread the news of how HIV was affecting people's lives. Past the sensationalism coverage were also the stories of people who placed a human face on the disease. Across the country we were able to see that HIV was not a gay man disease, but the impact it had on women, children and those who identified as straight. The press helped to make HIV relevant and kept it on the radar of America's conscious- even if one thought they were not affected.

The war for the right to marry took away the warriors and left people living with HIV, alone on the battlefield. They were stripped of their armor and weapons and left to fend for themselves. LGBT organizations which provided the call to battle left their post for a new dawn. A non-concern rose among the medical ranks as they now saw the disease as a life long illness and not the death sentence it once was. In their absence there was now a single pill which was to be the salvation for those either infected or as a PReP for others.

So with the recent victory of gay marriage, I believe that I and others are wondering if maybe this time people will bring the focus back on a community which never left and in fact has grown. That maybe this time, we can bring back our stories and in the telling of them, hear how the lives of those with HIV are affected. And mostly, maybe this time, the financial support which supported many community driven efforts are replenished for both the existing soldiers on the battlefield and the new ones to come. 

Maybe this time next year, we have another reason to celebrate as we see the rates of infection are decreasing across the board. And we can start to see victory.

Maybe.......

 



Aundaray on: On the web

Hurt/Hate/Heal

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Hurt

Damn, I'm gay, have HIV and black. It seemed the odds were not stacked in my favor. I was just entering my twenties but it felt like my life was already over. Asking myself, 'why me?' was an empty gesture but it didn't stop me from asking anyway. Of all the emotions I experienced, hurt was more pronounced. The stigma of HIV made it difficult to find someone to share my hurt and I defiantly had it to spare.

I should have been used to this feeling called hurt as it came early in my life when I was sexually abused as a child. Not once or twice, although I don't know if it would have been any better, but over a years' time.

The hurt came from my family who suspected I was gay at a young age and as if to scare it out of me, letting me know what they thought about 'faggots'. This was further compounded by a mother who pulled me aside to let me know, "if you ever turn out to be gay, I'll kill you." The hurt came from the person who gave me the virus as I gave my 'stuff' to him thinking he was going to be the one. And like an absentee father, left me alone with my 'gift' to bring into the world.

Sadly hurt became a tapestry of my life. A thread I couldn't remove no matter how I tried. The more I pulled the more it unraveled the broken child inside. My greatest hurt came from the feeling of rejection as I was made to feel like the 'other'.  It seemed everyone was clean and I was 'dirty'. My hurt prevented me from reaching out for support as I didn't have the words to explain my situation. Even within my community, the 'gay' community, I was the 'other'. This was shown to me time and time again once my status was known by those I shared. I was never asked to be someone lovers but was often told, "We can still be friends".  And after that announcement, it seemed the phone stopped ringing and I was blocked, not only from their address book but also from knowing their heart. So my secret became my secret. It wasn't to hurt or to deceive. It was to feel loved. It was to enjoy the pleasures of someone, even a stranger, to hold me close. The hurting pain of rejection caused me to live this double life.

My hurt with HIV was also physical as I struggled to swallow pills that stuck in my throat and refused to go down. Dry heaves overcame me as it felt like my insides were coming up to greet the sunlight. And my satisfaction was short when I was reminded I would go through the same experience the next day. The needles pushed into my arm to monitor my t-cell levels were always moments of fear. I grew up hating needles but as the years passed they no longer caused pain. Just like my life with HIV I became used to pain.

My greatest hurt was my belief that I was being punished by God for being gay. I was always a religious person and had a strong faith but now that faith was being tested. Was I really that bad a person that I deserved this? Was I cursed? Even in my darkest moments when I felt no one had my back I knew I could always count on God. But it seemed like even he stopped shining his light on me. I felt I had no one. My back was against the wall. It was me against the world.

 

 Hate

The hate in me came in like a storm. My wings of anger morphed the more I walked my path. The shadow that once walked behind me turned into my hatred which now walked in front of me. I hurt people because I was hurt. And I had no shame in letting people know how I felt.

My hateful actions meant turning off my inner voice and simply living life with no regards for people or their feelings. I simply didn't care. I was so hateful that if you told me you loved me, I told myself it was a lie. I saw it as a trick for me to lower my walls in order for that person to come in and do more damage. That simply wasn't going to happen to me anymore. I had been hurt enough. My hurt didn't allow me to be held or experience a hug. The thought of someone attempting to hug me out of affection made me jump. It was a knee jerk reaction of me pulling away. To touch me also brought forth in me those memories as a child when I didn't have the power to say no. I had to regain that control.

Lie, cheat and steal was my motto. I was living for the moment as a life with HIV meant I didn't have no future. It was the dawn of my destructive behaviors. I didn't do drugs or over indulge in alcohol. No my vice was sex. The one thing that was forced on me, the one thing that gave me this curse, was the one thing I turned to in order to heal my pain.

I swam in the lake of promiscuity with no life vest. I pushed myself into years of anonymous sex, standing in rooms of unknown naked men all with the goal of inserting their manhood into each other. My apartment door was replaced with one that revolved as one after the other, men of all races walked through to take pieces of me away. If by chance there was an attraction or a show of affection, I sabotage it right away as there was no way anyone could love me. I didn't love me. I created online profiles and in the HIV status field, I placed the word 'negative' because that was how I felt. I wanted to live my life as I didn't have a disease.  I was in a place where I simple didn't care.

I hated myself. I felt I never would find love and dreaded holidays like Valentine Day as it was a reminder of what was out of reach. Looking back I actually was presented with people with loving ways but rejected them as they didn't fit my list of what I was looking for in a man. Yet ironically I didn't use that same list when it came to having sex as my standards were lowered when it came to someone entering my ass as opposed to my heart.

I simply hated. I hated my father who ran didn't raise me. I hated my friends and family who didn't have to live with this disease day to day and asked me things like, "what's wrong" and me unable to share that truth. I hated the gay community as it was not at a place where I could say I was gay-yet jealous they could live that life freely. I hated life and wished my disease could take me sooner than later. I hated people who were in love.

I was on a crash course with myself. Tears which fell only at night were now falling at all times of the day. They fell because I knew my actions were not me. I knew the young boy with the innocent smile was trying to come out and I didn't know how to let him. The last time I let him he was hurt. Like an overbearing mother I built walls so no one could ever hurt him again. My tears fell because I spent most of my life living in shame, holding my head low instead of raising it to see my potential. My tears fell because I felt I let my mother down. I didn't listen to her warning and was paying the price. I was crying because simply dealing with HIV was a luxury as my daily battle was more about me being black than the disease itself. I was trying to survive in a world built with systems not designed for me and as a gay black man the only time I was visible was when I saw myself on posters holding a condom.

I didn't realize my tears were falling because it was cleansing me. Not knowing It was getting me ready for my final transformation.....healing.

Heal

I never set out to find a place of healing. I felt I was always going to a person walking with rage. I was scared that if I let go of my anger, I would be setting myself up to be hurt again. My anger was my shield of protection.

My healing came when I allowed myself to cry. When I stopped trying to hold back my tears. When I stopped punishing myself for tears which were due to me. I earned each drop for all that I suffered. The child abuse. The rejection from family. The announcement of my HIV. The times I was called a nigger, those tears were mine and I was denying myself each drop.  I  never knew that those moments I would cry I was actually healing. The water was nurturing the open wounds that existed on me. Cleansing my soul.

The biggest moment came when I stopped blaming myself for my circumstance. It wasn't my fault that I was sexually abused as a child. It wasn't my fault that I was gay, as I came to accept that I was born this way and it was something to be celebrated instead of hated. And although I placed myself in the situation to be exposed to HIV, I had to stop blaming myself for my life choices and find a way to move away from the bitterness that was overtaking my life.

Instead of living in a place of blaming I started to exist in a place of forgiveness. That included all of the negative actions of my life when I was so angry. In that forgiveness I started to see the person I was supposed to be. I let the child in me, out, to experience the world again. I was learning how to fly again and be free.

My healing allowed me to let God back into my life. It made me understand that although I was giving him the silent treatment, he never did the same to me. That he was always there for me, through all the pain. And it was because of him I was able to bear.

The last act of healing was me coming to a place of acceptance. I think for so long I was in moments of denial and never fully embraced my circumstance. It seemed I was always living someone else's lie. I was living other people life. Constantly trying to be that someone that others wanted to see. I was the 'straight black man', I was the' passive bottom', I was the 'strong male', I was a 'cumdump', I was 'HIV negative', I was everything people wanted me to be. Always morphing my identity, auditioning in the hopes I would be liked. I never allowed myself to simply be me. I never took the time to make that discovery.  I was now giving myself that permission.

I finally place myself on that journey to find not only who I was but who I was supposed to be. I had to rediscover my voice. And to truly move on I had to forgive the people who I felt place hurt on me. That included the person who took my childhood and most importantly the person who gave me HIV. I couldn't move on if I held on to the anger I felt toward them. And yes I had to forgive myself.

I had to let people go. Those who only wanted to take and not give. I had to recognize that family can be the greatest source of pain and sometimes you have to sever the ties of hurt. I had to understand that if someone didn't accept me as a gay black HIV positive man, then they couldn't appreciate and deserve the beauty I had to offer. I could no longer fragment myself for others. Giving people only the pieces they liked. They had to accept the wholeness of me.  I had to stop giving my body away to strangers and those who only saw me for their sexual pleasure. Stop placing my body parts on social media as if I was standing on an auction block. Giving myself away to the lowest bidder. I had to stop asking for love until I knew what love was. I had to learn the difference between the acts of someone simply wanting to just having sex with you and the act of someone wanting to be in love with me.

Since the discovery of my truths I've never been freer. I'm no longer tied to people's opinion of me. I don't mean this as a disregard of people or to say they don't matter, I say this knowing my actions will be dictated by how I can best show I love myself. And that's the greatest gift you can give yourself, the ability to love the skin you're in.

The greatest thing is accepting that I'll have some doubts and may even have some setbacks on this healing journey.  But to use those setback moments as reflections and restart my journey toward healing and love of self.

Now when someone asks me who I am I can say proudly I'm gay, black, HIV Positive, caring, crazy, Extrovert, outspoken, soft spoken, funny, impulsive, introvert, moody, sincere.........the list goes on. But one thing I know is that they all add up to one thing...loving. That's me. Aundaray



Aundaray on: On the web

Spring Into Fitness

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At the beginning of the New Year we all make a resolution to start working out and/or eat healthier. But let's face it- who likes to work out during the cold winter months? Before you know it our resolution becomes an impossible task. That's the great thing about Spring- we all get a start over and an ability to design a realistic health program. A fitness program is great for anyone and all body types but especially for those with HIV. I make this testimony as I feel my health routine over the last ten years has contributed to my continued well-being despite my status.

There's been studies which shows that there's a relationship between a healthy lifestyle and an increase in one t-cell numbers. Also working out has benefited my overall well-being, and for many who participate in a health program, it has helped keep depression and anxiety in control.

And not to mention the added benefits one with HIV can receive such as:

·         The prevention of muscle loss and strength often seen in those with HIV

·          Lower levels of blood fats and sugars which can raised by HIV medications

·         Higher levels of HDL cholesterol (the good stuff) and lower levels of LDL cholesterol- the bad kind which has been connected to faster HIV progression.

So as we spring forward I offer my seven ways to have a healthy season.

1.       Do it for you- The worst mistake one can make in starting a fitness regime is to do it for the benefit of someone else. We all want to look attractive to others but when you step into the gym or start exercising, how someone sees you that shouldn't be your marker of being fit. The person we should make happy when looking in the mirror is ourselves. Keeping that in mind you'll find yourself more motivated and determined to get the results you want.

 Start at your own pace- Whether it's jogging or lifting weights, don't compare yourself to others. If you see someone jogging without breaking a sweat or lifting a huge amount of weight-just know they were once like you, starting from the beginning. The worst thing you could do is to try to keep up with someone who has been doing a routine for months. You not only risk hurting yourself but you also may get frustrated and give up.

Check with your doctor before beginning- This may seem like an obsolete suggestion but for those who are HIV it may have an added benefit. One reason is that there may be a medical reason you don't feel motivated to work out. You may find yourself always without energy and don't know why. It has been shown that those with HIV may experience low levels of testosterone based on many factors. For many that's the fuel to provide the boost you need to even do the simple day to day activities. Because we often don't know our levels are low it's best to check In with your doctor and they may start you on a testosterone treatment program.

Control the vices- In our busy lives we sometimes wish we had to time to have a proper meal, but the reality for some is that fast food is usually the only option. Yet making fast food your go to is not good for you or your body. In addition other vices like smoking and drinking can make a health regimen redundant. Look at ways to reduce eating junk food by always having healthy options around. Also seek support from others if you're trying to stop smoking or excessively drink. Remember your body is your temple so if you want it to be nice to you- you have to be nice to it.

Keep a diary- We sometimes don't give ourselves enough credit for our successes, even the small ones. A diary is an excellent roadmap of where one used to be and where they're at now. There are so many online options which make it easy to collect your results and place them in a place where you can review them. Also many are now creating a picture diary which allows them to visually see the results their making.

 

6.      Stay off the scale- If you want to really get frustrated and derail your efforts, step on a scale. A scale doesn't accurately inform you of the progress you're making. People who work out can't understand why it looks like they're gaining weight. The truth of the matter is you're not. As you lose fat mass you're gaining muscle mass which is good. So when you step on the scale it's reflecting the muscle which you're developing. Understanding this you'll see that a daily scale check is often misleading and not an accurate barometer of your real results

 

7.       Find what works for you- For some going to the local gym is a preferred way to stay in shape. For others it may be jogging through the local park. Other non-traditional programs such as yoga are considered a good way to workout. No matter what you do, do something and you'll not only feel good but feel good about yourself. And most importantly you can start today as it takes one step at a time to be the best health you want to be.

 So as the warms sunny days of summer slowly approach, start making today your day to spring forward into a healthy life! 



Aundaray on: On the web

The Specialty of HIV

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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


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  • Jonsey: Thank you for sharing this, Aundaray. Resume keywords are way read more
  • josé alfredo diaz: My God. That is beautiful. Thank you so much for read more
  • Dani: Beautiful!:D read more
  • Richard: This is shocking to hear, frankly. UHC just settled a read more
  • WILLIAM COLLINS-CURRIE: Hello...I do not have this issue, but I understand. I read more
  • 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

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