Browsing Category: AIDS at 30

An Issue of Social Justice

by Shannon Wyss
AIDS United Grants Manager

When HIV/AIDS first hit the public consciousness in 1981, I was nine years old.  I remember little of the disease in its first decade. My first recollection was when I was watching the evening news, probably in the mid-‘80s. I remember a graphic projected on the screen to the right of the newscaster’s head. It consisted solely of the word “AIDS” in big red letters except that in place of the letter “I,” it had a test tube filled with blood. I don’t remember wondering what AIDS was, so I must have heard about it already. And yet that graphic sticks in my mind, all these years later.

So there is a degree to which HIV has always been a part of my world. While I technically experienced a “world without AIDS,” those years were early in my life, before thoughts of sex, sexuality, drug use, or anything else related to HIV. Growing up, I was fortunate to go to a school that, while devoutly Catholic, taught honest sex education to its students. Learning about safer sex was always a part of my school-based sex ed curriculum, and HIV was always taught in biology classes – although the teachers were very clear that any sexual activity outside of a monogamous, heterosexual, committed-in-marriage relationship for the purposes of procreation was both wrong and a sin. An interesting mix of the progressive and pragmatic with the conservative.

And yet, to a great extent, HIV/AIDS did not enter my life until college. Certainly, I knew about the disease’s existence. But I did not know anyone “out” about her/his HIV status until early adulthood. HIV was “out there,” a terrible scourge that I knew disproportionately affected gay and bisexual men but that did not affect my personal life. So I missed the early years – the certain death sentence that was an HIV diagnosis, attending funeral after funeral, watching friends and loved ones die a horrible death, the survivor’s guilt, the ACT UP rallies, the civil disobedience arrests.

All of those things have had an incredibly deep – indeed, a devastating – impact on the LGBTQ community, which I proudly and eagerly joined in college in 1993. HIV became more personal to me then. And yet it was still several years before I knew anyone who was out about having HIV or AIDS – and I only learned about his diagnosis after his death. Another individual, whom I knew in high school, is suspected to have died of AIDS-related complications while I was in college. But if true, that fact has been quite successfully shrouded from the public.

Being queer-identified has made HIV more “real” in some ways. I am part of a highly-stigmatized community. And that very stigma is what helps to put my sisters and brothers at greater risk of being infected. But it is not only LGBTQ people who live with this stigma. Prejudice exists against many other groups in society – people of color, immigrants, women and girls, youth, drug users, sex workers, and so many others. Members of those communities are, not coincidentally, also at great risk for HIV/AIDS. What puts them at risk is not their identities but the results of the hatred, stress, and fear under which they must live.

So while, yes, HIV/AIDS is a medical issue, it is more importantly an issue of social justice.  And while, yes, “everyone is at risk for HIV,” some are more at risk than others. And that risk springs directly from the prejudices and unequal distribution of power and resources in our country – indeed, in our world.

The fight against HIV will not be won solely by a vaccine or by distributing billions of condoms and clean needles and containers of spermicide. The fight against HIV will be won only by eliminating racism, sexism, transphobia, homophobia, xenophobia, ableism, ageism, fatphobia, and a host of other hatreds and institutional inequalities that keep some people in power and control at the expense of their fellow human beings. This is why I am honored to be a part of the fight against HIV/AIDS.

What concerns me, 30 years into this epidemic, is that we seem to have learned little about the connections between HIV and inequality, between AIDS and power and privilege and prejudice. We are very good, now, at doling out medicine. But we aren’t always very good at making prevention messages relevant to folks’ everyday lives, at keeping people under the care of a doctor once they are diagnosed, at making sure everyone can afford her/his HIV drugs, at reaching at-risk communities. And we, as a country, seem to be avoiding at all costs larger discussions about all those hatreds and inequalities that we must get rid of in order to eradicate HIV.

But that is probably not too surprising. As a country, we have yet to have a national dialogue on any of the things listed above. Why should we treat HIV any differently? But it is just such honest, painful, but necessary discussions that must be had to win the fight against HIV – and for us to reach our full potential as individuals, as one community and as various communities, as a country, and as a world of interconnected human beings.

I am hopeful that those of us who realize the critical importance of making our society – our world – a more just, peaceful, and healthy place can continue to influence those around us who may not be “there” yet. We can attempt to model that all-important goal of Social Justice not only through our jobs but through our interactions with our families, friends, colleagues, neighbors, religious communities, and strangers on the street.

While I cannot change the world, I will work as hard as I can to improve my little corner of it so that no one has to live either with HIV/AIDS or with the hatred, fear, and inequality that put so many at risk for this completely unnecessary, totally preventable, and yet still incurable disease.

What will you do to help stop HIV?

A Generation’s Awakening Awareness of HIV/AIDS

This entry is part of a new blog series about the 30th anniversary of the AIDS epidemic in America.  Submissions are invited from all AIDS United stakeholders, including Community Partnerships (and their grantee organizations), grantees, funders, Trustees, staff, advocates, Facebook and Twitter friends and followers, and anyone who has been impacted by HIV/AIDS who reads this blog.  For submission guidelines, email communications@aidsunited.org

by Joe W
Boston, MA

I remember Linda Ellerbee, the anchor for Nick News, addressing an audience of curious tweens. Her tone, frequently upbeat and professorial, was unusually serious and deliberate 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 of things to worry about. But I knew no one with HIV/AIDS, and at the age of seven, my world consisted of the relative safety of home, school, and friends.

Some time later I remember having a conversation with my mother about the topic. My mother, no doubt preempting a bout of hypochondria on my part, made the disease sound even more remote and removed from my realm of concerns. This was probably easy for her to do, as she did not know anyone with the disease either.

My mother was never shy about educating her children, 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, the information relayed was converted into, “If you are gay, you will get AIDS.”

My belief that HIV/AIDS was a disease conjured into existence as a result of each same-sex interaction persisted for many years. It was a personally alarming turn of events then when I realized I was gay. At the time, however, HIV/AIDS began to disappear from the public consciousness as a concern warranting immediate attention. This was in the mid to late 1990s, the beginning of the so-called cocktail therapy, and the death and dying that had elicited calls to action just a few years earlier began to subside.

HIV/AIDS soon became just another risk associated with sexual activity, as it was breezed over in health class among the panoply of viral and bacterial consequences drilled into the heads of hormonally-active teenagers. The comfortable isolation afforded by high school health curriculum 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 was simply not discussed. I learned that an issue of no personal relevance quickly loses its importance and fades into the background.

It wasn’t until I was twenty-three that I first met someone with HIV. I was introduced to Greg by an acquaintance who informed me of his status prior to our meeting. Being not at all comfortable 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 the early years of the crisis and not having any idea what came next, or even if he would be alive to experience a next anything.

I learned that his partner at the time also tested positive and passed away several years later. I was shown an address book that he used that contained hundreds of names, the majority of which were crossed out, indicating that the person had died. 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 learning more or doing more to combat this epidemic.

As a gay man, I had devoted little attention to HIV/AIDS because I was in the privileged position of not being affected by the disease while simultaneously living through the earliest years of the epidemic. My age and innocence effectively shielded me from what many painfully endured. Once that changed, the entire spectrum of historical struggles and present concerns became immediate and pressing. I wanted to make up for nearly two decades of my childhood and adolescence and contribute to the fight.

I’m now in a position to do just that, working at Gay and Lesbian Advocates and Defenders (GLAD), an incredible nonprofit legal organization based in Boston that is dedicated to ending discrimination on the basis of HIV status, sexual orientation, and gender identity and expression. It has been an eye-opening personal journey, and my education continues through my work as the epidemic enters its thirtieth year. And my guilt, that personal reaction to my own years of inaction, has been replaced by a sense of enormous gratitude as Greg, who I am now proud to call my partner, lives every day of his life as a testament to what is possible.

It is my hope that members of my own generation remember those who came before and reignite in themselves that sense of urgency and passion that existed in the earliest years of the epidemic. HIV/AIDS has not gone away; it has just been quietly removed from our sight. The fight is not over but with every passing day it looks more and more winnable.

30 Years of HIV/AIDS: How Many More?

by Mark Ishaug, President and CEO

This month, we mark the 30th year of the HIV/AIDS epidemic.  On June 5, 1981 the Centers for Disease Control and Prevention (CDC)’s Morbidity and Mortality Weekly Report published the first mention of what later is determined to be HIV.   During that first decade that followed, we stood on a precipice of doom.  More and more people were presenting with the disease, and then soon after were dying painful and horrifying deaths.   Doctors felt helpless, people were terrified, and the public was panicking.   Acquired Immune Deficiency Syndrome was the clinical term used to describe the sudden cases of Kaposi’s sarcoma or pneumonia infection in previously healthy people.  But AIDS became the loaded term that struck fear into the hearts of humanity.

We certainly have come a long way since that June day 30 years ago.  The discovery of the virus that causes AIDS, human immunodeficiency virus (HIV) – as well as the ways it is transmitted and the way it could be diagnosed – helped propel us forward with the knowledge of how to prevent the spread of the virus and ultimately how to treat it.   The discovery of antiretroviral (ARV) therapy and subsequent advances in that treatment helped shift the course of the disease, plummeting the number of AIDS-related deaths, saving countless lives and shifting HIV/AIDS from being a deadly disease to a chronic condition.

But make no mistake – despite numerous advances, HIV/AIDS is not over.  Every nine and a half minutes, someone in the United States becomes infected with the virus.  More than one million people are living with HIV in the United States. One in five of those people living with HIV is unaware of his or her infection.  And while the annual number of new HIV infections remains stable, the infection rate is still far too high, with an estimated 56,300 Americans becoming infected with HIV each year.  HIV/AIDS continues to disproportionately affect our nation’s most vulnerable populations: Communities of color (especially African-Americans); men who have sex with men (MSM); women; and low-income, poor and homeless individuals.  The epidemic continues to be driven by stigma, which has a significant impact on prevention and treatment efforts in those communities hardest hit by it.   More than 640,000 people living with HIV, many of whom know their status, are not in the care of an HIV-specializing medical provider.

In the last year alone leading up to this 30th anniversary, we’ve experienced both great hope and maddening frustration in our efforts to fight the epidemic.  The ban was lifted on the use of federal funds for syringe exchange programs, which have been proven to reduce transmission of HIV and other blood borne illnesses.  The White House released the first-ever National HIV/AIDS Strategy (NHAS), which has given us the blueprint for a focused and coordinated response to America’s HIV/AIDS epidemic.  We’ve learned of promising new findings on vaccine research, microbicides and ARV treatment as prevention.  But we also have witnessed the explosion of waiting lists of people who need their life-saving HIV medications from state AIDS Drug Assistance Programs (ADAP).  We’ve had to fight back the Draconian budget cuts to critical federal HIV/AIDS programs in the 2011 federal budget and are facing even bigger budget battles for 2012.

But this is no time to give up!  If fact, observing the 30th anniversary of AIDS can inspire us to work even harder to ensure that there are as few of these anniversaries left as possible.  We all have a role to play!

As individuals, we must educate ourselves about HIV/AIDS.  We must know our HIV status and get tested.  We must practice safer sex.  We must learn about local, state and federal public policy and programs that promote the health and well being of people living with and affected by HIV/AIDS.  We must communicate with our lawmakers and let them know that critical HIV/AIDS services are in need of funding.

As HIV/AIDS organizations, we must develop innovative ways to reach those who need us the most.  We must cultivate strategic collaborations with one another that help make our work more effective and efficient.  We must advocate for sound HIV/AIDS policy, for increased federal and state resources, and for full implementation of the Affordable Care Act.  We must fight for effective vaccines, microbicides,  and other promising prevention tools.

As private sector companies and philanthropists, we must increase investments in both innovation and evidence-based programs that support community-driven responses to the HIV/AIDS epidemic.

As Americans we must remember that HIV/AIDS is a preventable disease, and a winnable battle!  We must work together to create a new anniversary that will be cause for real celebration: the end of AIDS in America.