A Generation’s Awakening Awareness of HIV/AIDS

June 9, 2011 in AIDS at 30

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?

in AIDS at 30, President's Message

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.

Team NOLA: AmeriCorps Week in the Garden

June 7, 2011 in AmeriCorps

For our long-term project, we are creating a community garden. Our mission is to provide a safe, social space for people infected and affected by HIV/AIDS and to promote awareness.

In observation of AmeriCorps Week, we held an event in the garden. Flyers, emails, and Facebook invitations were sent out to friends, community members, and local HIV/AIDS agencies. This outreach explained the mission of our garden and highlighted the contributions of AmeriCorps. We delivered brochures about AmeriCorps to the community center across the street from the garden.
During our event, volunteers helped pick up rocks and broken glass from the ground. Others started building a wooden fence in the back of the garden. They dug holes, inserted fence posts, then mixed & poured concrete.

Later we nailed slats to the fence posts and painted it with primer & sealant. Two members of Team Carolina were in town visiting and graciously took some time out of their vacation to help us out.

Over the past few months we’ve battled fire ants, hornets, weeds, and the hot Louisiana sun. We’ve picked up garbage, dug up rocks, whacked weeds, poured poison over ant hills, and consumed lots of water.

And it’s not over yet.

We’re currently working on painting a mural on the wooden fence in the back of the garden. It will be unveiled to the public on June 30th during the New Orleans National HIV Testing Day Event. So stay tuned!

For more pictures, visit our facebook page.

Team DC gears up for its 2nd annual long term project at DC Public Libraries

in AmeriCorps

AIDS United AmeriCorps Team Washington DC is excited to announce its 2nd annual long term project, joining forces with the DC Public Library system to commemorate 2011 National HIV Testing Day. Team DC will be conducting a two-day HIV testing effort at multiple public libraries in the metro DC area.

Events on Friday, June 24 will consist of smaller-scale testing events at Martin Luther King Jr Memorial, Petworth, Benning, and Anacostia Public Libraries. On June 25 we will host a large-scale testing event of free HIV testing, community resources, condom demonstrations, games, prizes, and a public screening of the community-made documentary ‘The Other City’, which follows several DC residents’ stories of living with HIV/AIDS as well as outlines the epidemic that affects the Washington DC community (www.theothercity.com).

Team DC is currently busy getting the word out to agencies, media, and the community at large. We hope to have the full community’s support as we proceed in our effort to sustain HIV testing in public libraries.

Mission Accomplished: Team Chicago’s Long Term Project

in AmeriCorps

As everyone who joins the AIDS United AmeriCorps Caring Counts program knows, the idea of creating a long term project and executing it within approximately ten months is extremely daunting.  But not at the beginning.  In the beginning, each member thinks of all of the amazing projects that a motivated group of individuals can accomplish.  There’s a sense of “we can do anything!” that comes out during the first few 5th day meetings when team members bounce ideas around.  Eventually, two or three months into the service year, team members start feeling that there isn’t anything they can accomplish together.  The project ideas that bounce around become simpler and seemingly more attainable but finding a consensus seems utterly impossible.

For our team, there was a day when one of our members put all of our ideas into perspective and our long term project was discovered.  We knew we wanted to reach out to young people with limited access to education about safe sex.  We knew, as a team, we wanted a part of the project to include outreach in the Chicago community and a part that would provide solid education and a chance for young people to ask questions.

After encountering various obstacles and regrouping to come up with some different ideas, we decided to work in collaboration with a neighborhood YMCA to put on a health fair for high school-aged young people in South Chicago.  We worked hard to raise funds for the project which included organizing a bar event, writing letters to companies for in-kind and cash donations, and soliciting friends, family members and coworkers for donations on our IndieGoGo website.  We ended up raising around $1,300 for the project which was more than enough to buy supplies and a hefty amount of raffle prizes.

Despite some rather unfortunate weather, we had a solid turn-out at the event.  At all times someone was having an HIV test and being counseled on how to protect themselves.  We provided condoms and various pamphlets to young people aged 13-19 who were interested in our services.  Team members made flashy posters displaying information about HIV and STIs.  We also included a question activity where people could pick a question and try to answer it or find the answer on the board.  The questions focused on common myths about HIV and STIs.

The event ended with our raffle which included prizes like iPod Nanos, Target gift cards, Chicago Transit Authority passes, and the grand prize of a one-year membership to the YMCA, our hosts.  Many of the attendees who stayed until the raffle won a prize and people left smiling.

We learned a lot about working as a team and collaborating with other organizations throughout this project.  One of the most important lessons we learned was how to be flexible.  Everything demanded us to think flexibly and plan flexibly for unforeseen obstacles that we may encounter.  We learned to plan ahead and consider everything and anything that could get in our way.  It was an experience that tested our patience and creativity but, in the end, was a success.

Turning HIV Prevention for Girls “Inside Out!”

May 27, 2011 in GENERATIONS

by Traci Callender
Bronx AIDS Services

Known as one of the epicenters for the HIV virus, New York City is home to more than 40,000 women living with HIV/AIDS (New York City Department of Health 2010).  Bronx AIDS Services (BAS) is located in the Bronx, New York, where the impact of HIV/AIDS has been disproportionate and deadly. Twenty three percent of all black female PLWHA’s in NYC who died in 2008 were from the Bronx and 43.8% of all NYC Latina PLWHA deaths were among Bronx female residents (NYCHOHMH 2008).

Since 1998, BAS’ GO GIRL program has provided sexual health-related services to adolescent girls and young women (ages 12-24) including community outreach; HIV/ STI prevention; HIV counseling and testing; substance abuse prevention counseling; peer leadership and education training and a youth prevention theater program. While the existing GO GIRL curricula more than adequately educated participants on HIV transmission and safer sex strategies, program staff recognizes that participants deal with additional risk factors that are not covered by the interventions, more specifically: lack of self-esteem, low familial expectations, depression, low self-efficacy, insufficient support systems, and a wide range of mental health issues. Armed with a clear gap in community needs versus resources and a grant from AIDS United’s GENERATIONS program, BAS has developed the Inside Out intervention which aims to address the needs of urban adolescent girls who are facing personal risk factors that are beyond the scope of our existing HIV/AIDS prevention curricula.

Inside Out is an eight week, 16 session HIV prevention intervention designed to take young women (ages 14-18) who already possess a basic level of knowledge about HIV risk factors and prevention strategies and provide them with a second level intervention that delves into their personal risk factors and triggers for risky sexual behaviors. The curriculum, developed by BAS with the assistance of the AIDS United TA team, consists of eight group sessions and eight individual sessions. The eight group sessions focus on maintaining optimal sexual health: assertive communication, sexual readiness, sexual coercion, healthy relationships, coping skills/resiliency, self-esteem building, goal setting, and gender roles and expectations. The general structure of each session includes an icebreaker, 2 or more activities followed by a discussion, journal writing, and a Facebook note. Participants also meet individually with a licensed clinical social worker, or Adolescent Wellness Coordinator, to reinforce concepts from group but also to discuss ongoing personal issues that may affect their ability to implement safer sex strategies into their lives.

Since the start of the grant, BAS has completed the curriculum and implemented services with 28 young women. By adding the Inside Out intervention to the services that BAS already renders to the targeted population, we have been able to retain some of the higher risk (and harder to reach) participants and engage them in discussions and activities that aim to guide them in maintaining optimal sexual health. Participants have reported looking forward to Inside Out as the next step in their HIV prevention education at BAS. After successfully completing Inside Out, 17 year old Tayanna commented “This is information that I can use, not just stuff to know.” Shawna, a 16 year old graduate of the program, stated “They should teach us this kinda stuff in school instead of Geometry. Maybe so many girls wouldn’t get pregnant or catch something even worse.”

The AIDS United grant has absolutely increased BAS’s ability to provide a more comprehensive HIV prevention program for one of the most vulnerable populations. Simply put, condom distribution and demonstrations does not begin to scratch the surface of HIV prevention with young women of color. Giving information does little when a person is not empowered to use it. Inside Out has afforded BAS the opportunity to have those difficult conversations with young people and aid them in identifying their personal barriers to protecting their greatest resource… their health.

For more information about the Inside Out program. please contact: Traci Callender at tcallender@basnyc.org.