Is HIV Being Shortchanged?

by Seth Rosen

photo by Adam Fredericks

Every 9.5 minutes another person contracts HIV in the United States. Approximately 1.2 million Americans are living with HIV, but almost one in five is unaware of his or her HIV status. In 2009, 17,000 people died from AIDS in the U.S., and the CDC calls this a "stable" trend. Of course, that's unless you are black (12 to 14 percent of the population but 44 percent of new infections), gay or bisexual (4 percent of the population but 63 percent of new infections) or under age 25 (where 26 percent of new HIV cases are found). Over 619,000 Americans have died from AIDS since the epidemic began.

Major philanthropists are ignoring the continuing AIDS crisis in the United States, and people are dying because of it. Sounds harsh? It is, but only because it's true. The Chronicle of Philanthropy recently released a list of the top 50 American donors in 2012, and only two donors, Jon Stryker and David Geffen, gave significant funds to combat HIV and AIDS in the United States. I do not mean to diminish the outstanding generosity of the other 48 people on the list, but why is HIV no longer a top priority among those with the means to do something about a still-spreading disease that can only be held at bay with costly medications and cannot be cured? And it certainly cannot be ignored that HIV hits gay and bisexual men and African Americans, two groups that already face pervasive stigma and discrimination, the hardest.

The fact that many of our country's most wealthy individuals are not funding HIV services is not a surprise to me. As the Managing Director of Development at Gay Men's Health Crisis (GHMHC), the nation's first organization dedicated to AIDS services, I know how difficult it is to raise money to help people living with or affected by HIV and AIDS, let alone find money to prevent future infections. When I first took this position, many of my colleagues in fundraising warned me that raising money for AIDS was becoming more difficult every year, and that I could find easier and less stressful jobs at other nonprofits with more embraced causes.

Of course I knew they were right. AIDS service organizations live at the nexus of what we as a society avert our eyes from: sex, drugs, poverty and race. Everyone needs a hand in life, and I have been lucky enough to receive one myself many times. I am proud to be part of a group that is tackling issues not because they are easy but because doing so is the right thing to do. We will never see progress if we gravitate toward the easy. Combatting HIV and AIDS is difficult work, but as a society we must commit to reaching an AIDS-free generation. We cannot abandon those most vulnerable to becoming infected and those living with HIV who need life-sustaining support to live long, healthy lives.

I have come to terms with the fact that fighting AIDS in the United States may not have many champions among the wealthiest Americans, although I have a lot of fundraising left in me, and I do intend to find them. Instead I seek inspiration from fighters like the people at the Keith Haring Foundation and Joy Tomchin, the producer of the Oscar-nominated documentary How to Survive a Plague, who are being honored at our spring gala, Savor, on March 21 in New York City. I also look to fundraisers like Craig R. Miller, who founded AIDS Walk New York, which benefits GMHC and 40 other AIDS service organizations and will again bring 45,000 people to Central Park on May 19. Along with our clients, these are the people who inspire me to go to work every day with a hunger to fight.

Working at GMHC has made me and my husband dedicate our own philanthropy to fighting HIV and AIDS. We might not be in the Chronicle's top 50, but we will never turn away from this fight, no matter how hard it is, and no matter how long it takes to win. I hope you will join us and GMHC in the fight.
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Seth Rosen is the Managing Director of Development at GMHC. His article originally appeared in the Huffington Post on February 20, 2013.

What We Really Want on Valentine's Day: Sex Education in Schools

by Eric Kutscher and Adam Warwinsky

Today it seems that access to comprehensive sexual education in the United States is a privilege. According to a 2006-2008 National Survey on Family Growth, 46 percent of males and 33 percent of females do not receive formal education regarding contraception prior to losing their virginity. Only 21 states and the District of Columbia mandate sex education in schools. Even where sex ed does occur, problems persist.

Adam: Take my sister, for example. She came out as a lesbian in the smallest public high school in rural New Jersey, where hunting, high school sports and maintaining a certain small-town way of life take priority. In my hometown, homosexuality seemed like a foreign concept. Being the first openly gay student in our community, she faced severe harassment, including schoolmates writing "dyke" on her locker and tearing down pictures of her and her girlfriend, and childhood friends abandoning her. While our high school did have a sexual education program that addressed safer sex, sexually transmitted infections (STIs) and HIV, the program failed to create a safe environment to discuss individual sexual identities and sexual health. Without an LGBT-inclusive curriculum, homosexuality was received with hostility and disapproval. As her little brother, watching her suffer and not being able to do anything to stop the homophobia infuriated me.

Eric: Growing up in Northern Westchester, I was privileged to attend one of the best public school systems in the country. We had access to everything: dozens of Advanced Placement classes, after-school activities and even basic health education starting in fifth grade. However, we did not have trained professionals to discuss sex and sexuality. Health classes were taught by gym instructors, leaving a void that other teachers felt the need to fill. My twelfth grade English teacher tried to open up a dialogue about LGBT identities by showing a video on transgender individuals and proposing that in a class of 20, two students were probably transgender or gay. Though the information was wrong, it did not stop the speculation as to which students in the class were actually transgender. Misinformation led to "gay-hunting," teasing and a misunderstanding about basic human sexuality.

As students in America, we have a right to unbiased and uncensored information. We have a right to be provided with accurate materials about health and sexuality from certified and trained professionals.

Growing up without a comprehensive sexual education system has left our generation with a myriad of problems. HIV rates are on the rise among young Americans for the first time since the epidemic broke out in the 1980s. Young people aged 13 to 29 account for over 30 percent of the 50,000 new HIV infections each year. Broken down, this means that every hour, two individuals in our generation are infected with the virus. Even more, a disproportionate number of young gay and bisexual men of color must face the brunt of the epidemic. Though antiretrovirals have greatly extended the life expectancy of those living with HIV, a mixture of physical, mental and financial stresses still makes living with the virus a daily challenge.

These concerns led us to conduct preliminary research as interns for the Public Policy Department at Gay Men's Health Crisis (GMHC) about HIV-risk perception among men who have sex with men, knowledge about HIV and successful preventative measures. The answers we received from the participants in our study were far below acceptable standards. In terms of understanding how the virus could be transmitted, 24 percent of participants believed that HIV could be transmitted through mutual masturbation, and 7 percent were confident that HIV could not be transmitted through unprotected anal intercourse. When discussing how long after exposure to HIV most tests can detect the virus, only half (74) of the men correctly responded that the exposure window was three months. A quarter of the men felt surprisingly insecure about being able to voice a desire to use condoms, citing a fear of rejection from their partner as well as assuming that requesting condoms would make them appear to have HIV or other STIs.

At the same time, other young people are also at risk. In the United States, we have one of the highest teen pregnancy rates in the developed world. Of the 750,000 pregnancies among women aged 15 to 19 each year, 80 percent of them are unintended. These pregnancies are so commonplace that they are even the focal point of television series, such as MTV's Teen Mom.

Our generation is facing the consequences of sexual liberation without sexual education. The results show why we need sex ed. Our parents and previous generations fought for the rights of individuals to express themselves in all ways possible, a noble and important cause, but what they missed was a critical moment in history to implement programs that provide young people the right to information in order to make healthy and responsible decisions about their sexual health.

In the current congressional session, Sen. Frank Lautenberg (D-N.J.) and Rep. Barbara Lee (D-Calif.) introduced the Real Education for Healthy Youth Act. The bill includes guidelines as to what sexual education programs must (and must not) include to receive federal funding, ensures that students at all level of schooling have access to sexual education, trains instructors on how to best inform students of important yet possibly uncomfortable information and allows for sexual education that is inclusive of LGBT identities to be presented in the classroom. Importantly, the act would strike language from the Public Health Services Act that prevents schoolteachers from using any language that "promotes" homosexuality or discusses it in a positive light.

By passing the Real Education for Health Youth Act, we would ensure that Americans know their bodies, know their health and are empowered through comprehensive sexual education programs to make healthy and responsible decisions about sexual health. We must continue to spark dialogues and ensure that students have a forum in which to voice concerns and receive accurate answers to questions on sexuality and sexual health.

For more information on the current state of sex and HIV education in the United States, click here.
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 Eric and Adam's article was originally published in the Huffington Post on February 14, 2013

Continuing the Family Legacy in AIDS Activism

by Joseph Neese

photo by Adam Fredericks

When my late uncle, Rodger McFarlane, became the first paid Executive Director of Gay Men's Health Crisis in 1982, he was just 27-years-old. His generation was the last to be born into a world without HIV and AIDS.

For as long as I can remember, I heard stories of Rodger's friends, whose lives were claimed by AIDS on a daily basis in the early 1980s. I was just in the eighth grade when I first read Larry Kramer's The Normal Heart, the Tony Award-winning play about Rodger and the other men who helped organize GMHC, the world's first HIV/AIDS service organization, in response to the tragic loss in their community, and was incredibly moved.

As is often the case in life, I don't think the full impact of the epidemic hit me until I encountered it head on. After I returned from a semester abroad in Buenos Aires, Argentina, in late 2009, I received the devastating news that my boyfriend during that time, a handsome, young Peruvian man, had tested HIV-positive.

As fate would have it, I had just completed a routine HIV test earlier that day and received a negative result, which I attribute to what I learned from my uncle. I came out to Rodger one night in college, and he followed up with a comprehensive sex education discussion the very next morning.

When Rodger died four years ago, Mr. Kramer, with whom he had helped build GMHC, told The Advocate that my uncle had done more for the gay world than any other individual had ever done. "I don't think the gay world knew or knows how great he was, and how much he did for us, and how much we need him still and how much we will miss him," he said.

Although the great loss of my uncle is still felt in the world of HIV and AIDS activism, I have never once given up hope. The first thing I did when I moved to New York was do what my uncle did 30 years ago -- establish myself as a volunteer at GMHC. Their life-affirming programs, including safer-sex education, crisis counseling, hot meals, case management and legal counseling still save lives and extend GMHC's message of "Fight AIDS. Love life."

The HIV/AIDS epidemic is still very real, and its shift in demographics is alarming, with a disproportionate effect on the young, gay, poor and of communities of color. Yet I still hope for a world with zero new HIV infections and zero deaths from AIDS -- a message that was heralded at last year's International AIDS Conference.

A crucial part of achieving an AIDS free generation is recruiting a new contingent of HIV and AIDS activists to carry on the work that my uncle began. That is why I joined GMHC's Millennial Committee which is developing new, young donors.

I want the next generation -- including me -- to step up and be counted to give millions of people affected by HIV and AIDS hope for a better world.

Please join me at GMHC's annual gala, Savor on March 21. For more information, please visit gmhc.org.
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Joseph's article was originally published in the Huffington Post on February 13, 2013

The Impact of AIDS Activism: An Interview with David France

By Larkin Callaghan

The development of an award-winning film about AIDS activism and what we can learn from it

How to Survive a Plague, an Academy-Award nominated documentary released in the fall of 2012, chronicles the start of ACT UP (AIDS Coalition To Unleash Power), an AIDS activist organization started by newly diagnosed HIV-positive individuals and their advocates in New York City in 1987. The film details how ACT UP grew from a small, local, grassroots initiative aimed at forcing the public to acknowledge the epidemic and its devastating impact, to an organization with thousands of members that transformed AIDS drug policy. Through political action like protests, public funeral ceremonies, and storming the buildings of the National Institutes of Health, ACT UP initiated ‘treatment activism,’ accelerating the development and distribution of AIDS treatment drugs and changing the pharmaceutical industry’s closed door research and development process to one that incorporated the insight and research of activists themselves. By including footage from ACT UP activists and interviewing organizers who became lifelong advocates in the fight against AIDS, writer and director David France crafts a compelling storyline underscoring how the movement opened the eyes of the public to the struggles of those with HIV/AIDS and how ACT UP’s unrelenting demands for government acknowledgement and action changed the landscape and future of those diagnosed with the virus from a death sentence to a manageable, chronic disease. Mr. France discusses the development and evolution of the film and helps articulate what viewers can take from it.

Editor’s Note: See if How to Survive a Plague wins an Oscar during the 85^th Annual Academy Awards on February 24^th, 2013.

You wrote extensively about HIV and AIDS for publications like New York magazine, and other writings of yours have inspired films. What was it that compelled you to take on the task of writing and then directing a film about the history of AIDS activism as opposed to staying in the writer’s chair?

I wanted to go back and look again at those years before 1996, and revisit them in order to try to make some sort of sense about what happened then. To mine those years for the lessons; the legacy; for a deeper understanding about what it meant that we’d all been through such a dark period of plague at a time when so few people were paying attention to it. That was my challenge.

The first thing I did was return to some of the videotape that I knew existed because as anybody who was doing reporting on the ground back then knew, cameras were everywhere—people with AIDS and their advocates, activists and artists, family members, and independent news gatherers were all shooting. That was all made possible with the arrival in 1982 with the revolution of the prosumer video cameras. They were suddenly available, and suddenly cheap, and they were taken up by this community in a remarkable way.

So I went to look at some of the tapes; there is a collection at the New York Library of some of the video work produced by ACT UP itself. And then I thought, you really can’t tell the story without the cameras, because the cameras played such an integral part. In fact, the camera itself was kind of a character in those years. And I thought, I’m actually looking at the project—the project is in trying to tell the story and make sense of it by going back and actually re-purposing those images for future generations.
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To read more of David France's interview with Larkin Callaghan of the 2x2 Project, click here.