AIDS United

Finding a Way to Get Through This: My Story of Being Tested for HIV After Exposure

June 29, 2011 in Policy/Advocacy, Uncategorized

by Jimmy Schneidewind, Public Policy Associate

The most difficult three months of my life were the three months I spent wondering if I was HIV positive. I suspect that similarly, they were also three of the most difficult months my family has ever endured. Though I had volunteered in numerous HIV testing clinics and had trained hundreds of HIV educators on the values of getting regularly tested for HIV, there was nothing that could have prepared me or my family for the stress, anxiety, and heartache that we felt when my own status was in doubt.  Nearly three years later, I can still recall with extraordinary vividness the thoughts and emotions that ran through me during those months, and the pain that I felt as I considered what the rest of my life would be like if I were to contract HIV at age 24.

I had been living in Mozambique, a Portuguese-speaking country found on the south-eastern most part of Africa, for 14 months when I was exposed to HIV. I lived in a small rural village called Nicoadala (pronounced: nick-wa-dah-la) where I worked as a consultant to a civil group of Mozambicans who were working in collaboration with an international non-governmental organization to build up the health infrastructure of the town. Overall, I was enjoying my experience, though I would often be consumed in my private time by feelings of isolation as the only American.

Although I was aware that I had been exposed to HIV, the notion that I might have contracted the virus was not one that immediately dawned on me, strangely enough. It started as a small seed of doubt and ultimately morphed into an overwhelming panic, the intensity of which was almost paralyzing. I think I was hoping to wake up one day and realize that it had not really happened or that I would eventually succeed in convincing myself that it wasn’t really as serious as other cases of HIV exposure. After a month, I was completely taken over by fear, and belatedly took the two kilometer walk from my house to the local hospital where I had encouraged hundreds of Mozambicans to get tested for HIV, but had never once been tested myself.

The only available HIV tests in Mozambique are rapid tests. This testing method returns results in about 20 minutes, however, there is usually a latency period of between six weeks to three months for the virus to become detectable in most peoples’ bodies. When the nurse took my blood (note that the vast majority of rapid tests in the United States use a mouth swab) and dripped it onto the rectangular testing area, I turned my head away, unable to watch as my results emerged. The irony was not lost on me that as a white, heterosexual, upper-middle class, college-educated, American male, from an overly-supportive two parent family, I was probably the least likely person on the planet, statistically, to become infected with HIV. And yet, there I was, half a world away from family and friends, waiting and wondering; scared.

Though my initial test results came out negative, I spent the next two months in a state of melancholy while I waited for the three month mark post-exposure when I could finally be sure of my status. I wondered if my family would accept me. I wondered which of my friends would still hug me. I wondered who would want to marry me, and how I would ever become a father. Who would love me if I had HIV? As I contemplated what life would be like if I had HIV, I remember feeling as stripped down to my fundamental core as I imagine a human can feel and thinking that these are the same fears that everyone has when they are uncertain about their health status.

The reasons why I was terrified to get my test results then are the same reasons why I choose to get tested now. The faces of people who I love and for whom I care deeply drift into my mind whenever I am waiting to get tested or awaiting my results: My parents, my brother, my aunts, uncles, cousins,  and my friends. I realize in those moments when I am most scared that my life is valuable primarily because of the love given to me by all those faces I see and my decision to get tested derives purpose from that realization.

When I called my parents to tell them that I knew for certain that I had been exposed to HIV, my mom spoke first, after a slight pause, and said, “Whatever the results are, we will find a way to get through this.” I will never forget that. In varying degrees, I am still afraid every time I go to get tested, but I think the fear is good because it is a reminder of why I now get tested regularly and what is truly important to me. I continue to get tested for HIV because I want to be proactive and responsible about my health; I find meaning in my testing because I recognize the love people have for me, and the love I have for myself.

Although this blog was written in recognition of National HIV Testing Day, June 27, it appears on our website and in our Weekly Update after the day as a reminder that it is important to get tested no matter what day it is. AIDS United encourages everyone to find out their HIV status by getting tested today and by making it a regular part of your health check-up routine. To learn more about National HIV Testing Day, please visit the National Association of People Living With AIDS (NAPWA) website. To find the testing site closest to you, please use this link.

Revitalizing HIV Education in the Workplace

June 27, 2011 in President's Message

by Mark Ishaug, President & CEO

Just a few weeks ago, we marked the 30^th anniversary of the AIDS epidemic, and since that time we have been taking stock of what we have accomplished, how we have responded to challenges, and where we see the most promise in ending HIV/AIDS.

Today is National HIV Testing Day (NHTD), which gives us another important opportunity this month to recognize the impact of HIV/AIDS in America, and to educate ourselves about one of the most significant actions that we can take as individuals in the fight against the AIDS epidemic – getting an HIV test – so we can all know our status.

CDC estimates approximately 21 percent of the 1.3 million Americans living with HIV are unaware of their HIV status.  If we don’t know our status, we won’t connect to the life-saving care and treatment.  If we don’t know our status, we won’t take steps to prevent transmitting HIV to others.  If we don’t know our status, we won’t be able to end the HIV epidemic.  It’s that simple.

What may not be that simple though, is figuring out where to get more information on HIV/AIDS, and where to find confidential HIV testing   Especially if you live in a smaller community or rural area.

Levi Strauss & Co. came to us at AIDS United to help address this issue for their employees in the United States – many who live in smaller communities.  We worked with them to create an innovative partnership with local AIDS organizations. The goal: to help connect employees with the resources they need to manage HIV/AIDS at work and in their lives – even if they don’t live in a big city.

Starting today Levi Strauss & Co. employees around the country will have access to HIV/AIDS education, testing and care in a new effort called HIVConnect. From our perspective at AIDS United, this effort revitalizes the HIV/AIDS in the Workplace effort in the U.S. – an effort that Levi’s® helped pioneer in the earliest days of the epidemic.

Together with local AIDS organizations and AIDS United partners, the company will train employees in workplaces around the country. This will ensure their colleagues can learn more about HIV/AIDS to fight stigma and discrimination, and protect themselves.  And, most importantly, employees can connect to trusted organizations, ready to meet their needs, no matter where they are.  HIVConnect stands to provide important – and potentially life-saving – information to thousands of Levi’s employees in the U.S. about HIV/AIDS, many of whom might have never had the opportunity or the motivation to seek these resources otherwise.

This is exactly the kind of leadership and initiative we need to be seeing in many, many more American companies.  A revitalization of the workplace HIV/AIDS effort is needed in the U.S. particularly when HIV resources are tight.  And ending AIDS requires we work across sectors to improve access to much needed services.   We are so proud to be working with a company like Levi’s that shares our vision of the end of AIDS in America, and that invests in the well-being of its employees.

This June, AIDS United stands with Levi’s and hundreds of HIV/AIDS organizations around the country in proclaiming that 30 years of this epidemic is enough.  We must work even harder to bring about a new anniversary to actually celebrate: The End of HIV/AIDS.  HIV/AIDS is a winnable battle and you can help us win.  Take the test. Know your status.  Take control of your life.  Be well!

To read more about HIVConnect, click here to read “Unzipped,” the Levi Strauss & Co. blog

Winning the Battle Against HIV/AIDS

June 24, 2011 in AIDS at 30

by David Ernesto Munar, President/CEO of the AIDS Foundation of Chicago (AFC)

I am honored that the White House chose to commemorate the 30th Anniversary of the HIV/AIDS pandemic with me and other openly HIV-positive organizers from across the country. We gathered recently with federal officials to reflect on the salient lessons learned and milestones marked in the fight against HIV/AIDS over the past three decades.

Reflecting on this solemn occasion stirs a mix of emotions.

In 30 years, HIV has caused tremendous loss and human suffering in every corner of the inhabited world. But it has also inspired heroic acts of kindness, generosity, and leadership. Looking back, we must laud the significant medical, political, and scientific advances achieved but also sustain a firm understanding of the unfinished work that lies ahead. With record numbers of people living with HIV and increasing numbers of new infections, we must reinvigorate efforts to provide people with and at risk for HIV/AIDS with the health and social services, housing, prevention, and human-rights protections they so desperately need and deserve. HIV knows no borders and neither should our compassion and actions.

Recognizing the rapid maturity of HIV medical, behavioral and social sciences, the U.S. Centers for Disease Control and Prevention now considers HIV a winnable battle. To truly win the future, the U.S. must not relent until we’ve won the fight against HIV/AIDS.

Thankfully, the U.S. is poised to make tremendous progress. For the first time, the U.S. has a comprehensive National HIV/AIDS Strategy, which President Obama unveiled in July 2010. The Strategy provides a thorough analysis of the HIV/AIDS epidemic in the U.S. and maps a pathway to decrease HIV infections, improve health outcomes for those of us living with HIV, and decrease HIV-related health disparities among the three groups most severely impacted: African Americans, Latinos, and men who have sex with other men. Winning the battle against HIV must start with realizing the measurable targets of the Strategy.

In 2010, Congress enacted and President Obama signed into law the Patient Protection and Affordable Care Act, which could quite literally reverse the epidemic’s spread once the law is fully implemented.  From the very beginning, inadequate healthcare access, discrimination, and indifference sowed the seeds of today’s burgeoning epidemic. By eliminating healthcare insurance discrimination against those who desperately need it, expanding public and private sources of affordable insurance, and guaranteeing a minimum standard benefit, HIV care will become more readily accessible than ever before.

But the most significant portions of the law will not take effect until 2014, which is why our current safety-net systems—namely Medicaid, Medicare, and the Ryan White HIV Act—are so critically important.  In over a dozen states, nearly 10,000 individuals with HIV languish on waiting lists for medications through their state’s overburdened AIDS Drug Assistance Programs, which desperately need an infusion of state and federal funds. Hundreds of thousands of other HIV-positive Americans remain unaware of their infection or have simply given up and are not seeking or receiving medical attention, at grave danger to themselves and others. Engaging and assisting these individuals will take valiant efforts but will also pay dividends to the nation by realizing future healthcare savings.

Even after federal health reform is fully implemented in 2014, the Ryan White program will be instrumental in providing wrap-around services not covered by healthcare insurance for low-income people with HIV. Moreover, a small number of people in the U.S. will remain ineligible for federal healthcare assistance that can only be met through Ryan White services.

U.S. leadership in response to global AIDS must also grow so that the poorest and most affected countries in the world benefit from the very best tools and knowledge available to control HIV. Our nation’s continued leadership in response to global AIDS—spearheaded by leadership from President George W. Bush who created and rapidly expanded the President’s Emergency Plan for AIDS Relief—will also ensure that the wealthy nations of the world sustain and grow their investments in stopping HIV/AIDS globally. Increasing investments in global AIDS is not just a moral and public health imperative but, as documented by the CIA, will help abate civil unrest and destabilization that can breed factions sympathetic to terrorism and threaten global security.

Earlier this year, groundbreaking, new evidence that antiretroviral therapy not only stabilizes HIV-positive people medically but also dramatically curbs new infections heightens the urgency to expand healthcare and testing access and wrap-around services, such as housing and case management, that are instrumental in successful and continuous medical engagement. Scaling access to medical care in an ethical and responsible way without losing focus on human rights and other pivotal strategies will be the basis for a successful and comprehensive anti-HIV approach moving forward.

It is worth underscoring that the battle against HIV/AIDS is waged daily in communities around the world by non-governmental organizations such as the AIDS Foundation of Chicago that keep urgency to the fight, demand accountability, and innovate creative, new ways to inspire individuals, institutions, and large public and private bureaucracies to do more against HIV, do it better, and continuously aim to achieve greater results.

Inspired by those of us living with HIV—who stand the most to gain or lose from society’s responses to this epidemic—the HIV/AIDS advocacy movement is by itself among the greater accomplishments of the history of the pandemic. We have changed the way affected community members are engaged in healthcare decision-making, awoken political awareness among the most disenfranchised segments of society, and shined a light on the symptoms and causes of structural inequities.

The fourth decade of HIV/AIDS will be marked by how well, or how poorly, societies around the world address such fundamental determinants of health as poverty, access to healthcare and prevention, housing, and basic human and civil rights needed for individuals and communities to thrive.

AmeriCorps Week in Tulsa

June 23, 2011 in AmeriCorps

For AmeriCorps week 2011, Team Tulsa headed west to Clara Waters Community Correctional Facility in Oklahoma City. The facility, which sits right next to the biggest theme park in Oklahoma, holds about 275 men. It is a step below minimum security (note the word community in the title) and the offenders are allowed to walk around freely for the most part.

Team Tulsa headed down with former AmeriCorps member, Michelle Sullivan, for a health fair at the correctional center. Every one of our host sites was represented at the health fair along with many other organizations, including the Oklahoma State Department of Health, Guiding Right, Inc. and many more. The most popular booth seemed to be the ones that offered either candy or essential hygiene products, like toothbrushes and toothpaste, but offenders were encouraged to visit all the booths.

During the health fair, many of the booth representatives taught classes in another building. Our own Danielle Matheny taught a packed class about Hepatitis C transmission, prevention, testing and treatment. The offenders were offered a cookie and a toothbrush if they attended a class, an offer which many took advantage of.

Overall, the health fair was a major success. The offenders were able to socialize, snack and gain valuable knowledge about their health, both inside the facility and out. The health fair also gave Team Tulsa the opportunity to see inside one of Oklahoma’s many correctional facilities, and hear the stories of the men who reside there.

HIV Theatre in New Mexico for AmeriCorps Week

June 17, 2011 in AmeriCorps

On May 19 and May 20, Team New Mexico presented Voices behind the Virus: A performance based on the true stories of New Mexicans living with HIV.  The performance took place at Warehouse 21 in Santa Fe, and at the Filling Station in Albuquerque, and was part of a series of events for AmeriCorps week.   The events both featured free, anonymous HIV testing, with rapid testing sponsored by Southwest CARE Center at the Santa Fe performance, and testing sponsored by the HIV/AIDS Advocacy Network at the Albuquerque show.  We hosted receptions during both performances, with food sponsored by the New Mexico Commission for Community Volunteerism.

Tickets to the show were sold for a suggested donation of 10 to 15 dollars.  Proceeds were matched by AIDS United and went to benefit Camp Corazones, a Santa Fe camp for children affected and infected by HIV that recently began experiencing financial difficulties.  Much of the HIV/AIDS community in New Mexico had rallied to support Camp Corazones and we thought this was a great cause for our performance.

Voices began as an idea to portray first person narratives of people living with HIV through monologues style theatre.  Our goal was not only to give voice to those infected by HIV, but also to educate, create awareness, and provide insight and perspective in to their lives.

We began by conducting interviews with community members, and compiled portions of those interviews verbatim into a script.  We were also fortunate enough to have the assistance of Skye Fort and Diana Delgado, two UNM Theatre and Dance students who took the script and turned it into a performance.  Skye and Diana began rehearsals about one month before our scheduled performances, and were able to develop and create several original pieces inspired not only by peoples’ stories, but also by prevention materials, condoms and HIV testing.  The performance featured several short skits on condoms including a demonstration, and also rapid testing being acted out on stage.  It also dealt with the issue of medication and HIV treatment, and illustrated the difficulties and overwhelming nature of treatment.  Several stories were told through monologues which were broken up into parts during the performance.  The stories and performance pieces ranged from powerful, emotional and thought provoking, to inspirational and light-hearted.

It was amazing to listen to some of the feedback we received from those who attended, particularly those whose stories were used in the performance.  Since the performance, we have received interest from other organizations interested in hosting a performance of Voices.  We filmed both the performance and rehearsals, and we plan to distribute the video among prevention programs around the state, as well as to other organizations interested in using the performance to educate about HIV.

We would like to take this opportunity to thank everyone who was willing to sit down with us and share their story.  We would also like to thank our producer Skye Fort and director Diana Delgado; as well as the actors: Nate Warren, Drew Morrison, Christie Carter, Craig McAdams, and Tori Corcoran; and crew: David Torres and Joe Montoya.  We would also like to thank the New Mexico Commission on Community Volunteerism for sponsoring our event.

An Issue of Social Justice

in AIDS at 30

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?