My journey with HIV began in 1995, and I still remember the first time I discussed AIDS publicly, in a Speech Communication class I was attending, in 1997. The final segment was to be a Persuasion speech, and I decided to speak in favor of expanding resources for the prevention of, and more support for those living with, AIDS. My first line was, My name is Mark Janes, and I am a person living with AIDS.” I went on to discuss why prevention was money well spent, research our best hope, and why those who have it deserve support and compassion.
I had numerous struggles with opportunistic infections, including chemo for Kaposi’s Sarcoma, which was relatively mild in me, but not entirely invisible. I agreed to be involved in numerous drug trials, some of which were truly hard (like eight large capsules at a time), and at least one of which is now listed as an allergen on my chart. I remember the summer of 2002 receiving a call from my HIV pharmacist, offering a trial for a drug then called T-20, that was injected twice daily. Six months of that finally gave me viral control. The day that blood was drawn was March 3, 2003.
My re-entry into the world of HIV support and advocacy began on Facebook; I was poking around in a few HIV Groups there, when a woman by the name “Maria HIV” asked me if I would be willing to help her admin a new Group she’d started, “International Group for people with HIV/AIDS, and the people who love us.” At that time it had maybe 400 members; it currently has around 14,000 and is among the largest of its kind on Facebook. I soon found myself answering all sorts of questions from around the globe, and have learned many valuable lessons both from Maria Mejia and from the Group as a collective.
It was Eddie Hamilton who suggested that I apply to attend the ADAP Advocacy Association’s annual Conference in Washington, DC. I did so, and was approved for a partial scholarship; my parents paid for my airfare. It was the first time I’d flown since 1999, and an extraordinary welcome back: Virgin America Flight 1, from San Francisco to Washington National; a World War II Honor Flight- veterans going to see the newly-completed memorial. The flight left on time and arrived a few minutes early. The vets were treated like royalty and the rest of us weren’t forgotten. The plane was showered by the airport fire trucks on arrival. But the best was yet to come: I was paired with Bob Skinner, who is both a strong advocate and a really good man in general. I learned a lot, and grew a lot, that first time. It made me more effective online.
The following year I attended AIDSWatch, and actually met my Congressman; he was gracious enough to give us a couple minutes of his time. That September I attended USCA, and had a impromptu teaching moment with the TSA as I was going through security at Washington National. The agent told me he “felt something loose on my upper thigh” and that secondary screening was needed. We went into a small room, I pulled my pants down, and showed him the loose skin, “From just under a decade of injecting Fuzeon twice a day, to treat HIV.”
I hear from people newly diagnosed from all around the globe on an almost daily basis. I do my best to offer advice that is as accurate as possible, and I also believe it’s important that our representatives in Congress are aware of our existence and what our needs are. Simply put, no government tries to just dump money on random items; there needs to be a call, a demand, for resources. I still believe that people speaking out and asserting their needs, is part of living in a nation like the United States, and my main issue is HIV.
Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.
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