ADAP CRISIS & PARTISAN BICKERING

Please read my latest blog here.  http://adapadvocacyassociation.blogspot.com/2011/03/adap-crisis-lawmakers-stop-bickering.html  It covers the ADAP Crisis and the harshness of partisan bickering.  I wrote this for the ADAP Advocacy Association (aaa+).

MY AIDS CAMPAIGN

CALENDAR DATES: OBSESSIVE OR ALTRUISTIC?

One year ago this upcoming weekend I began my HIV medications.  I remember that night perfectly- from strategically planning the hour at which I would consume the pills to who I invited over my apartment to join in on an occasion I insisted be festive.  After my friends forced the pills down my throat and then headed back to their residences the idea of remaining in a celebratory state had subsided. I had a bit of quiet time to fill my “Monday through Sunday” pill box.  While doing so I listened to sappy music and cried every possible tear I could.  It wasn’t until this part of the evening did this physical illustration remind me that now that I started the medications I can never stop and that this pill box will always be replenished.  To this day this incident was the third and final time I allowed myself to be emotional at the fact that I’m HIV positive.

One common trait I’ve learned that majority of positive individuals have are remembering dates: the month, day and year of their diagnosis, when they began medication, when and if they were hospitalized, etc.  I see people on both ends of the spectrum criticize these people for being what they in their own minds would consider anal about keeping track of dates.  Such individuals tell me that as time goes on I will forget my exact dates.  That may be all right for them, but as far as I’m concerned my life began on January 21, 2010, a date that will live in my memory until God has decided that my time is up. 

My argument for remembering dates is that it recognizes taking charge of your life.  Before I had HIV, I could care less about myself.  Whether it would be reviewing my resume for dates when I held jobs, or dates from my last dental appointment, or even the date of the last time I had sex.  Sure, I may have a rough idea, but there is uncertainty.  Since my life has changed I’ve become certain of almost everything regarding my health side of things.  (Another reason why I can’t stand when people tell me my life hasn’t changed with or without HIV.  Change doesn’t necessarily equate to BAD.)

Here’s an example of why remembering dates is not only crucial to one’s internal self, but for others engaged in your life as well.  Look out- I’m going to be honest about how it works for many in the gay world.  And in my opinion, unless our world finally accepts the homosexual community as equals more and more individuals will seek affection the way I’m about to portray.  Several years ago, I met a gentleman on one of the many gay dating (sex) sites.  After a few dialogue sessions exchanging what we were “into” (meaning sexual position, safe or raw, relationship oriented or no strings attached, discreet or open, to name a few) we’ve concluded that we were a match.  One night in his hotel room (he’s from a major city two hours away from mine) we made love for a couple hours before calling it a night.  This escapade continued on and off a few times a year, when he was in town, and we were officially “buddies”- no need to add the F word before buddies. 

What began in my early twenties as an acquaintance relationship sooner turned intimate (he invited me to dinner after all these years of just having sex.) we learned that we can glamorize things and be considered friends.  Recently, he got in touch with me that he will be in town and I was the first person he wanted to see upon his arrival.  As flattered as I was, I knew I had to be honest with an old buddy.  After all, he has and deserves the right to know the truth.  Sure it will hurt if he rejects me, but that’s life.  It doesn’t mean there aren’t plenty of other guys out there I’ve yet to encounter that will care for me as me.  I told him I was positive.  I told him the date I was diagnosed, the date I started medications, my current numbers and my healthy stature, etc.  I pleaded all I could to assure him that I would never do anything to hurt him, yet I understand if our debauchery had to end.  His response, “the fact that you were so honest with me, know all your shit, like dates and all, makes me not only comfortable with you, but admire you for being educated and taking charge of your life.”  Here I was worried he’d reject me for being positive.  Now we speak on a daily basis and I teach him a thing or two about the illness that he can use at will to protect him from harm.  I laughed when he apologized for asking so many questions regarding STDs.  My response was, “Don’t ever apologize for taking charge of your health or let anyone put you down for doing so!”

My point in a nutshell, keeping track of dates and knowing your own facts, whether you are negative or positive, illustrates taking charge of one’s own life.  So, to all the critics out there who tease us for knowing ours I say, “Get over it.”  By the way, I have plans to meet up with that gentleman friend of mine very soon and I have a feeling it will be the most passionate meeting we’ve ever had.  I guess honesty really is the best policy.          

HIV, I'M BACK!

CHRISTOPHER’S, “STATE OF THE HIV WORLD” ADDRESS

To people living with HIV and AIDS, to the tireless advocates and activists globally, to politicians, case managers, medical providers, drug companies, my fellow Americans.  If I may have your attention…

Most of you may not know me, but someday soon you will.  I’m saying it loudly that my name is Christopher Myron. Last week honored my one year anniversary living with HIV.  One year ago my misinformation of HIV allowed my world to fall apart.  My diagnosis forced me to be an outcast to society.  But, here I am one year later and although in that short period of time I consider myself to be in an emotionally stable frame of mind, there still isn’t a day that I don’t fear for my life.  This fear isn’t from the possibility of passing on from this illness that consumes me.  The fear stems from the views and opinions and tactics us as human beings should otherwise forbid with something as severe as HIV.  The bigotry is what’s keeping HIV alive and every one of us on every level is to blame.

This past weekend I had the privilege to attend the 2011 Emergency ADAP Summit in Fort Lauderdale, Florida, hosted by the ADAP Advocacy Association.  The forum included representatives nationwide from drug companies, nonprofit HIV/ AIDS organizations, case managers, and everyday citizens.  I’m not here to discuss the specifics of the conference, but I will tell you what I got out of it on a personal note.  As a former resident of the sunshine state, and perhaps down the road I will be again, I wanted to attend to see what someone in my shoes can do to help the thousands of Americans on “waitlists” with no access to their medications.  Not to mention I will soon be the newest enroller in the ADAP program in my state.  The good news is that I live in a state that hasn’t yet run out of funding for the government assistance program.  The bad news is that I had a price to pay to get said funding.      

Let’s back track for a moment.  I’m an example of an under-insured individual.  As if stress and mishap of dealing with an HIV diagnosis alone wasn’t enough, I still have so many other things to consider.  Being HIV positive is a financial burden.  I work two jobs just to survive.  The only insurance I was able to obtain in a sickening economy is through a union position at a job where I am abused.  I deal with it because it is my only source of receiving my medications that keep me alive.  Just to see my specialist and receive my quarterly blood tests I have to attend of a number of unnecessary doctor appointments so I may obtain a referral.  I can overlook this absurdity if I didn’t have to pay for all these treatments out of my own pocket, simply because I disqualify for ADAP in my state by a mere $500.

Being HIV positive I’m prone to fatigue.  Working two jobs results in eating less, lack of a good night’s rest, or exercise the way my body should- all these factors that are imperative for an HIV positive person need to remain in good spirits with to stay healthy.  The only solution to these problems is to leave my job with the limited insurance and give up being a responsible citizen in order to qualify for ADAP.  In turn, I’m forced to give up my home and move back in with my aging parents so I can save a few dollars.  Not only are my dreams and freedoms being slowly taken from me, but now I am risking the chance of being “waitlisted” in my state if they succumb to the same fate as Florida and many other states.  HIV is not easy for anyone to deal with.  Yet, I don’t think it’s fair for it to be an ongoing punishment.  These are a few examples of why I knew early on that I need to do what I can to help the generations to come to make their lives just a bit easier.    

As I sat in the forum and I listened to the arguments and the “agree to disagree” remarks I remain in silence and my opinions prevail.  I’m worrisome that we as a community cannot remain to the crisis at hand- that people have no access to the care they need to survive.  All I heard from numerous individuals from all points on the spectrum is a sense of entitlement.  I was overwhelmed with numbers and policies and I am confident that the new generation of the HIV community shares my feelings.  It wasn’t until the final minutes of the conference was I able to get a word in edge wise so I can make myself heard.  I didn’t get to say exactly what I wanted to say, but now that I have the time to express it here, this is what I needed to say:

I’m not an African American living with HIV.  I’m not a long term survivor of HIV.  I’m not a woman living with HIV.  I’m not employed in the HIV community- yet.  What I am—I AM THE NEW GENERATION OF HIV—who after one short year of being positive is frustrated and tired of doors being closed in my face from doctors, government officials, pharmacies, case workers, and people living with or affected by HIV and AIDS.  Past experience and status quo does not entitle any of us to be more important than the other while HIV is still alive and winning. 

I don’t know habeas corpus, I don’t know pricing policy, and I am fully aware that I wasn’t suffering in the 1980’s when this epidemic was a death sentence.  However, I will be the new generation’s representative to continue the fight against HIV and to hopefully one day live to see the cure.  But, I can’t do it alone.  You can’t do it alone.  I reach out to all individuals I described, especially my peers under the age of thirty, to make your voices heard.  If our voices don’t speak collectively and in large quantities, the White House will not be there to listen.

Once again all I ask is that we lift the sense of entitlement or expressing sympathy for other groups.  As HIV knowingly survives over thirty years we all need to understand that we equally need help.  Younger people like me need leaders and voices to follow in past footsteps.  The past foot steps need to remember in order to create new footsteps you need to let someone like me in.  Our message to the White House is universal and clear.  And that message is this- WE NEED HELP AND WE NEED IT YESTERDAY.      

WE NEED HELP AND WE NEED IT YESTERDAY.

WE NEED HELP AND WE NEED IT YESTERDAY!

To learn more about the ADAP advocacy Association and how you could get involved, visit the website here: http://www.adapadvocacyassociation.org/.