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December 1, 2011 10:24 am

World AIDS Day: The Fight is Not Over

I remember Linda Ellerbee, the anchor for Nick News, addressing an audience of curious tweens. Her tone, often upbeat, was unusually serious at the start of this particular episode. As the program began, Ellerbee informed the audience of what was then an epidemic in full swing: HIV/AIDS.

The year was 1992 and I was only seven years old, but I remember this television moment with particular vividness. I can recall her interview with Magic Johnson, and the demonstration of effective condom use that followed. An already neurotic child, I catalogued this experience in the folder I kept full of things to worry about.

Some time later I remember having a conversation with my mother about the topic. My mother was never shy about educating me, and she told me that HIV/AIDS was a disease that gay men got. I do not believe—because it is not in my mother’s nature—that this statement was the result of prejudice or bias; at the time, it was a disease that mostly affected gay men. However, to my young ears, what my mother said sounded like, “If you are gay, you will get AIDS.”

It was an alarming moment, then, when I realized I was gay. At that time, HIV/AIDS began to fade from the public consciousness; the advent of the “cocktail therapy” had extended life expectancy and created the perception that the disease could be a chronic yet manageable condition.

HIV/AIDS slowly became just another risk associated with sexual activity, breezed over in health class among the panoply of viral and bacterial consequences drilled into the heads of hormonally-active teenagers. The privilege to avoid confronting HIV/AIDS continued into college, even when I came out to my parents and friends. Among the small group of gay friends I developed, no one had been personally impacted by the disease and it simply was not discussed.

It wasn’t until I was twenty-three that I befriended someone who identified as HIV-positive. I was introduced to this person by an acquaintance who informed me of his status prior to our meeting. Being uncomfortable with the topic, I feigned ignorance when he disclosed his status to me one night over dinner. But I listened with rapt attention as he told me about being diagnosed in 1986 and not having any idea what came next, or even whether he would be alive to experience a next anything.

I learned that my friend’s partner at the time also tested positive and passed away several years after his diagnosis. My friend showed me an address book that he used that contained hundreds of names, the majority of which were crossed out, indicating that the person died from the disease. It’s hard to explain the emotions that this interaction evoked, because there were many, but one of the most prominent was a sense of guilt: I felt guilty for not taking the steps necessary to fully understand the epidemic and its history.

While I lived through the earliest years of the epidemic, my age effectively shielded me from what many painfully endured. My own awareness was raised slowly over time, and I am now in a position to effect changes in the attitudes and perceptions of others through my work at GLAD. It has been an eye-opening personal journey.

In my two years here, I have assisted Bennett Klein, our AIDS Law Project Director, with cases that would boggle the mind of anyone convinced that the stigma and discrimination tied to HIV/AIDS are concerns relegated to the past. Insurers still routinely deny coverage for necessary treatments related to HIV/AIDS, communities still discriminate against HIV-positive individuals, and HIV-positive individuals are still viewed by many as dangerous and distinctly “other.” HIV/AIDS has not gone away; it has just faded into the background.

In November, Magic Johnson renewed the focus on the epidemic when he reminded the world that he is still HIV-positive, twenty years after he first made his announcement. During his interview, he reflected on those first moments after receiving his diagnosis, and the considerations that influenced his disclosure. For me, his interview was a timely reminder that the enormous progress made during the past twenty years is contingent upon a continued campaign of consciousness-raising and education.

It is my hope that members of my own generation—those who grew up amid pervasive fear but came of age amid rising hope—remember the life or death struggle and reignite in themselves that sense of urgency and passion that existed in the earliest years of the epidemic. The fight is not over, but with every passing day it looks more and more winnable.

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