August 25, 2009
All these conversations about health care just keep me going back to two words -- fear and denial. Remove these two words, and we would easily have a health care system that could work for every single American. Keep these two words in the equation, and you have the quagmire that we are currently engaged in. Keep these two words in the conversation, and people will continue to get ill unnecessarily. Keep these two words in the conversation, and we all lose precious ground.
I can speak from personal experience about fear and denial. I held off treatment, rather seeking the truth about my own diagnosis until it was almost too late. I was caught up in my very own mix of fear and denial -- I was completely scared that people would abandon me, simply because I had HIV. I had to be dragged almost kicking and screaming to the hospital, to find out my news. When I had stabilized, my doctor told me that I would have lived only a few days had I stayed home. Fear, denial, and a strong dose of stubbornness would have won, and I would have lost. All of this because I was scared out of my mind and was willing to do absolutely anything, including putting myself at risk, in order to avoid the potential of being alone and isolated from the people I loved.
Recently, I dated a man who practiced his own version of fear and denial. When things seemed to be getting a bit more serious, I shared with him my status. I mistakenly assumed by his silence that he was negative. He did nothing to change my mind. I shared my fears with him about losing my health coverage, being too sick to care for myself, and other nightmares that come with being a person living with AIDS.
He never said a word.
One night he finally revealed his truth. He first said he had something to tell me, something that would probably cause me to kick him out. We had been dating for a few weeks at that point, and I could honestly not imagine what he could say that would do that. I would soon find out.
He bluntly stated that he was positive and had tested in 1997. My mind could not process this information at all. It was as if he was speaking in some foreign tongue. I instantly went through every single conversation we previously had in my head and kept coming up with the same conclusion -- how could I have missed a statement like that?
He explained further that he was part of the movement that did not believe HIV causes AIDS. Instead, AIDS was variety of diseases, and that the drugs and their toxicity levels that caused most of the suffering. My mind went blank. How could anyone possibly believe this nonsense in 2009? He shared with me that upon testing positive a friend told him about this other way of thinking -- that if you did not believe HIV causes AIDS, it did not. It was all started by this woman, Christine Maggiore, who had tested positive and was, herself, initially actively involved in the "standard" AIDS movement. However, she had come to question it when people were getting sicker because of the first round of anti-virals.
This man I was dating went on to tell me that he had never done anything after learning the initial news. He never got his t-cells checked, his basic blood counts explored, his viral load discovered. He simply just tested positive and hid this knowledge from pretty much everyone in his life. And now he was passing this information on to me, and wanted me to keep his secret.
After my head stopped spinning, I told him that I originally thought I was putting him in harm's way -- but now the tables had turned, and I was the one in harm's way. Without any knowledge of what was going on his system, he could easily have passed on a number of infections, including another version of HIV, however innocently, to me. His own version of fear and denial was poised to destroy my many years of hard work maintaining my own health status.
The first question I asked him what he possibly thinking of dating me -- me, who everyone knows is HIV positive? If he was living in such denial of the virus, why did he choose to allow someone as outspoken about his status into his life?
In the middle of our moment together, Christine Maggiore died. I had heard of her in passing from time to time, but as I never gave the "Denialist" movement much credence, I never took the time to get to know the players. However, the man I was dating knew her personally and was completely stunned to hear of her passing. The City said she was being treated for pneumonia, but her husband's hired hand said died of a toxic reaction to antibiotics. A few years before her own passing, Maggiore's six year old daughter died. In Los Angeles County, when a child death is under suspicion an autopsy is automatically ordered. Maggiore's own daughter died of AIDS related causes -- again with the Maggiore's own doctor insisting it was something completely different. Maggiore's could have easily kept her daughter alive if she had simply followed a drug regimen that would prevent mother to child transmission. Instead she allowed her own beliefs to shorten her daughter's life span considerably. Many people I know would have considered this murder. Others have done less to children and have found themselves inside a jail cell for a considerable amount of time. Maggiore was allowed to spread her toxic information freely.
One would think that with the advent of all of the drugs, the drops in death rates, the seemingly reduction of suffering of people with AIDS globally, beliefs such as Maggiore's would die like other snake oil treatments. One would be very wrong. The Denialist Movement is in strong force and picking up numbers, much like the Klu Klux Klan did in Post 9/11 America. They currently have a movie out -- House of Numbers -- a documentary that dismisses all of the currently held science in HIV and its treatments, continuing the conversation that HIV does not cause AIDS. Many prominent scientists were interviewed for this movie -- and quoted severely out of context. You see the one thing I learned quickly about scientists -- they are geeks, they are not social animals like us Hollywood types that come seemingly born with media training skills. They like to deal with their research and their data. They do not know how to work a camera -- therefore they can easily be caught of guard and may not be the best representative for their own cause. But that's why God gave us publicists.
This movie is currently on the circuit to potentially be considered for an Oscar nomination in the Best Documentary category. I heard of the movie when it was screening at the Nashville Film Festival. Upon contacting the festival, they stated their support of the movie and they believed it presented the facts in a fair and accurate manner. My response was simply, "Would you present a movie that stated that the Holocaust never occurred?" The Chairman of the Board of the Film Festival declared that this was not the same thing.
Millions of people have died globally, people continue to die in our own country, the Reagan administration did not acknowledge this disease until the end of his tenure and only then when it had become far to obvious to avoid, and this Film Festival decides that it was okay to present a movie filled with misinformation on such a sensitive public health issue -- and then decides that comparing it to the Holocaust is completely off base.
It will never, ever cease to amaze me how much ignorance runs rampant in this country. In 2009, we are still fighting the same battles we fought in 1985, except now we do so with seemingly better health. This movie just continues that fear that we fought so hard and thought were well behind us. It lives in a past that no longer exists and expands on it much farther than what is good for public health in general, and instead of providing an alternative theory for the AIDS crisis, it helps spread the AIDS crisis.
I think if we remove the strength that fear and denial have on the conversation regarding health care, we could move through this movement without a second thought. However, the insurance companies are in fear of losing their clout, and individuals are scared of paying for a disease of a person they never met, and elected officials are just plain scared of being without a title. Without someone leading us through this moment, beyond the fear and denial, we will not get to the promised land of health coverage for all.
I am not asking for you to pay for my own mistakes. I take responsibility for them each and every day. Part of this responsibility is writing this blog. Sharing my own experiences with you, so you do not make my mistakes is something I am compelled to do, for if I can get one person to question their own practices, then I know I have accomplished something. What I really want is an America where people can live truly free. When something as tiny as a virus can knock out your entire life's savings in a few months, we have a moral responsibility to help these people out. We need to give people a true safety net and that something was really there to hold onto instead of just false promises and misleading statements of hope. We gave it to the banks, and the auto industry, why can't we give it to people?
That guy I was dating, well that eventually came to an end. I finally asked myself the very same question I asked him -- why was someone as out with his status dating someone who was not taking responsibility for his own virus -- and it was then I left him.
Now I am seeing this very wonderful man, who owns up to his status with a fearsome responsibility that I admire each and every day. Instead of fear and denial, he gives me nothing but strength to continue my own fight. He, too, wishes for an America with health care for all. He could not make the activist in me happier when he becomes enraged from the politics that become all to easily entangled with this health care discussion. Somehow, in spite of all of the curve balls life has thrown me, I got lucky and found him. I could not cherish him more and thank the universe for bringing him into my life.
So to all of you in Washington, D.C., I ask this simple question. If you were left without the health care coverage that your positions bestow upon you, what would you do? Where would you go for your own health care? Who would take care of you if you got sick and could no longer care for yourself? Would you be able to wait in line at a local clinic for even the most basic of care? How would you cover the costs your prescriptions if you were not able to work? How would the very same fear and denial that each and every one of us goes through every day effect the very life that we currently depend on to lead us through this storm?
Think of all these questions when you opt to delay health care even longer for an American people that can use it now more than ever. Think of yourself without your Congress provided health care system, and then, and only then, cast your vote.
All of our lives are counting on it.
Follow Thomas DeLorenzo on Twitter: www.twitter.com/TDeLorenzo
To contact Thomas, click here.
For more information on HIV/AIDS denialism, take a look at TheBody.com's collection of articles on the topic.