Monday, January 31, 2011
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
, 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. Fort Lauderdale, Florida
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
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. Florida
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/.