feature
Leading the promise: Revitalizing AIDS education and advocacy in an age of complacency
Published Thursday, 29-Nov-2007 in issue 1040
The third time his partner was hospitalized with pneumonia, Shelton Jackson began to wonder whether he’d have his happily ever after.
He was suddenly faced with a barrage of what ifs and harsh realities.
His partner, Conan, had been diagnosed with AIDS two years after they had started dating. Jackson, at the time, figured the only way the two would survive Conan’s diagnosis was together. So Jackson decided to have unprotected sex and become infected. It was, he thought, the “ultimate expression of love” and a means to the happy ending he so desired.
Jackson tested positive three months later.
Jackson managed to ignore his early symptoms, but Conan’s failing health was a reminder of the virus’ ever-present impact – a not-so-happy ending Jackson hadn’t considered.
After Conan’s fourth bout with pneumonia, doctors performed surgery to remove scar tissue from his lungs. A week later, Conan’s body began to shut down. He couldn’t breathe on his own. He was put on a respirator, and on June 25, 2002, Jackson had the respirator removed. He held Conan’s hand; he told him he’d take care of his mother and sister, and he watched him die.
In April, Jackson will have lived 10 years with HIV, the human immunodeficiency virus that causes AIDS. He didn’t think he’d live this long. He remembers a retreat a therapist suggested he attend after Conan’s death. He met men and women who had lived with HIV for 10 or 15 years.
“You mean, I don’t have to die?” he asked the others. They responded – a resounding, “No!”
“I needed to hear that, I needed to hear their stories,” said Jackson, who spoke at the University of San Diego Tuesday, to kick off the university’s week-long observance of World AIDS Day, Dec. 1.
Now, Jackson shares his story, because he hopes to educate and inspire others. His story is unique, he says, because he chose to become infected. Also, Jackson is black, and the black community, he says, needs leaders to talk about HIV/AIDS. In fact, Jackson is only one of the three black males working with the “Does HIV Look Like Me?” campaign, which launched in September.
Produced by Hope’s Voice, the campaign features videos of young adults living with HIV/AIDS. Jackson is one of the campaign’s nearly 20 “ambassadors” who travel the country sharing their stories and fighting misconceptions and stigmas.
“We need more leaders,” said Todd Murray, the executive director of Hope’s Voice. “These are people who have committed their lives, their voices, their faces to fight this epidemic, and this campaign is giving young people a platform to be leaders.”
Jackson said it’s important to give a voice to people who are living with HIV/AIDS in the black community. The 2007 AIDS Epidemic Update by the Joint United Nations Programme on HIV/AIDS (UNAIDS) reported that blacks in the United States accounted for 48 percent of new HIV or AIDS diagnoses in 2005, and it was the fourth leading cause of death in the community among people aged 25-44 years in 2004.
One life lost to HIV/AIDS, in his community or in any other, is one too many, Jackson said – so he’ll continue to share his story.
More than 26 years after the first documented cases of HIV/AIDS, rates of HIV infection are increasing, and the Global Steering Committee of the World AIDS Campaign is calling for leadership. Leadership is the theme of World AIDS Day 2007 and falls under a five-year campaign titled, “Stop AIDS. Keep the promise.”
While researchers, politicians and advocates are expected to lead, so, too, are everyday people.
“We are still dying,” said Delores Dockrey, chair of the Global Network of People Living with HIV/AIDS in a statement through the UNAIDS. “Leadership requires that we face this reality.”
According to the report released by UNAIDS and the World Health Organization, in 2007, 33.2 million people were estimated to be living with HIV, 2.5 million people were newly infected with HIV; and 2.1 million people died of AIDS.
On average, there were 6,500 new HIV infections each day.
According to the UNAIDS report, the Unites States is one of the countries with the largest numbers of HIV infections in the world.
Men accounted for 74 percent of HIV or AIDS diagnoses in 2005.
In the regions of North America, and Western and Central Europe, the total number of people living with HIV is increasing, due, in part, to the life-prolonging effects of antiretroviral therapy, increases in HIV diagnoses in Western Europe, and a steady number of new HIV infections in North America.
Unprotected sex between men continues to account for the largest number, 45 percent, of new HIV infections.
While the UNAIDS/WHO update on the epidemic garnered news attention for announcing a decline in AIDS deaths, the decline is mostly attributed to new methods of gathering figures. Critics said the figures are “guesswork” and, if accurate, would actually be much higher.
“Because the vast majority of people who are infected with HIV don’t know it, there is actually no way to know if this new WHO figure of 33.2 million is any more reliable than the previous estimation of 39 million,” said Michael Weinstein, president of AIDS Healthcare Foundation in a statement. “There is certainly no basis for believing that half as many people were infected this year than last, as is also being reported – especially not when you can consider that most of the millions of people infected with the virus are unaware of their positive status and are unknowingly transmitting the virus to others. These figures are rough numbers based upon extrapolations gleaned from unreliable data since so few people are being tested. Let’s stop guessing and make routine testing worldwide a priority.”
Organizations, including the World AIDS Campaign, have pushed for universal access to prevention, treatment, care and support, and have challenged governments, health care workers, policy makers and advocates to intensify actions toward meeting the goal by 2010.
“While leadership is a strong call and can easily be embraced, I have been very disappointed with our leaders,” Dockrey said. “While scaling up of HIV care is prioritized, it is under funded and poorly implemented. Faith leaders continue to deny the existence of HIV/AIDS in the communities and congregations they serve. Governments are complacent, and have not provided the leadership needed to end the epidemic.”
Nina is 23 years old from Dacatur, Ga.
Vannessa is 25 from Brooklyn, N.Y.
Christina is 23 from Long Beach, Calif.
Kevin is 23 from Baltimore, Md.
Jonnah is 29 from New York City.
Bob is 27 from Philadelphia.
Nina, Vannessa, Christina, Kevin, Jonnah and Bob are all involved with the “Does HIV Look Like Me?” campaign, geared toward college-age students and young adults.
Somewhere in the figures – 33.2 million people, 2.5 million new infections and 2.1 million deaths – the human impact of the epidemic can be lost. But the campaign ambassadors’ stories remind us: From Nina, who was diagnosed with HIV at birth, to Jonnah, a transgender woman who was diagnosed with HIV three years ago, each of the ambassadors shares a message – hope, concern, the need for advocacy.
“[HIV/AIDS] is manageable, but at what cost?” Christina says.
“We are living, breathing proof that it’s possible to survive,” says Bob.
“I see so much ignorance and lack of knowledge in relation to HIV,” Kevin says.
“Your life hasn’t ended – be strong, find support,” says Vannessa.
And while not all of the ambassadors consider themselves leaders in the fight against HIV/AIDS, they all see a need for more education and advocacy – to erase stigmas, to encourage young HIV-positive people to live productive lives and to warn HIV-negative people about the risks of unprotected sex or drug and alcohol abuse.
Bob, who is new to the campaign, is anxious to begin speaking at colleges and universities. He wants to tell his story. In the interim, he’s created a blog and online community, www.poziam.com, for HIV-positive people to network and share stories.
“People are still contracting this disease, and they need to be educated – the statistics are higher, and I don’t want people to feel like they’re only a number,” he said. “If we don’t do something, more people will be infected – so many more.”
So, Bob counts himself among the number of young leaders who are organizing grassroots campaigns or participating in nationwide public service announcements to help end the epidemic.
Bob and the other ambassadors see the need to combat complacency – longer life spans and developments in treatment are all advancements that should be celebrated, they say.
“There is some complacency, especially with youth, but we shouldn’t deny our progress to battle complacency,” Jonnah. “We can counteract complacency with education.”
Education is the route many advocates are taking – finding new and creative ways to get a message across, such as the video segments used by the “Does HIV Look Like Me?” campaign.
“At the end of the day, you have to remember that this isn’t over,” Murray said. “No, it isn’t as bad as it used to be, but HIV infection rates are up, and anyone who is concerned should be involved. Change only happens when you’re willing to be a part of the
Media leadership challenges HIV/AIDS with television programming
Be it through print, radio, television or the Internet, the use of media has remain a leading tool to disseminate messages about HIV/AIDS.
In the early 1980s, when HIV/AIDS was first revealed to be a major health crisis, the public was gripped by fear, much of it fed by flawed anti-gay media coverage.
However, in 1985 the Gay & Lesbian Alliance Against Defamation (GLAAD) was founded to protest this defamatory and sensational reporting.
As the faces of the disease have been revealed in the years since, a new dialogue about the global pandemic has started.
In 2004, former UN Secretary-General Kofi Annan, in coordination with the Kaiser Family Foundation and UNAIDS, launched the Global Media AIDS Initiative (GMAI). Since then, media companies around the world have leveraged their resources to address information about HIV/AIDS and challenge stigma related to the disease.
In honor of this endeavor, and in conjunction with this year’s World AIDS Day “Leadership” theme, many broadcast and cable networks will air special programming to further educate the public about the ongoing fight against HIV/AIDS around the world.
On Saturday, Dec. 1, at the Annual Ribbon of Hope Celebration, the Academy of Television Arts & Sciences will honor media companies, programs, producers and individuals whose personal and professional commitment continues to keep HIV/AIDS awareness in the forefront.
The ceremony will take place at Television Academy’s Leonard H. Goldenson Theatre (5230 Lankerhsim Blvd, North Hollywood) at 7:30 p.m. and will be taped live by here! Networks and for later broadcast in the spring of 2008.
Below is a list of World AIDS Day television programming:
“I see so much ignorance and lack of knowledge in relation to HIV.”
Friday, Nov. 30
Positive Voices: Women and HIV
Showtime at 9 p.m.
This documentary, hosted by actress and activist Gloria Reuben, explores the lives of six women who have been affected by HIV and AIDS.
“India’s Hidden Plague”
National Geographic Channel at 10 p.m.
Ashley Judd, the Global Ambassador for YouthAIDS, hosts this world premiere about the rapid spread of HIV in India.
Saturday, Dec. 1
The Ride: Seven Days to End AIDS
Logo at 8 a.m.
This original documentary series follows a diverse group of cyclists taking part in AIDS/Lifecycle 4, a 585-mile race to raise money for HIV and AIDS research.
Longtime Companion
Logo at 11 a.m.
Set in 1981 – but made in 1990 – this feature film follows eight people’s lives and shows how they were each affected by the AIDS crisis, when AIDS was being referred to as a “gay cancer.”
It’s My Party
Logo at 1 p.m.
In this 1996 feature, Nick (Eric Roberts) reveals to Brandon (Gregory Harrison) that he is HIV-positive. As a result, Brandon leaves him. Determined to die with good memories, Nick gathers his friends for one last hurrah.
Stephen Fry: HIV & Me
Sundance Channel at 2 p.m.
In this new documentary, out British actor Stephen Fry examines HIV and AIDS in Great Britain today.
Beat the Drum
Showtime at 3 p.m.
This film tells the story of Musa, a young orphan who leaves his Zulu village in search of his uncle in Johannesburg. While on his quest, Musa learns about the “mysterious illness” plaguing the country.
Behind the Red Door
Logo at 4 p.m.
In this 2003 drama, a gay man dying of AIDS-related causes (Kiefer Sutherland) reunites with his sister (Kyra Sedgwick) to confront their violent past.
The Origins of AIDS
Sundance Channel at 4 p.m.
This documentary investigates a theory detailed in journalist Edward Hooper’s controversial book The River, addressing the possibility that the deadliest disease known to humankind came as a result of a risky, mass inoculation of an experimental polio vaccine during the late 1950s.
I Want to Be a Pilot
Sundance Channel at 5:30 p.m.
The U.S. television premiere of this award-winning short film based on the testimonies of 50 AIDS orphans in the Kibera area of Nairobi.
Positive Voices: Matthew Cusick
Sundance Channel at 5:45 p.m.
This 12-minute documentary focuses on the workplace discrimination against Matthew Cusick, an HIV-positive performer with Cirque du Soleil.
In the Gloaming
Logo at 6 p.m.
In this 1997 film, Danny (Robert Sean Leonard) is a gay man dying of AIDS-related causes. He returns home so that his mother (Glenn Close) can take care of him.
Jeffrey
Logo at 7:30 p.m.
In this 1995 comedy/drama, Jeffrey (Steven Weber) is a young gay man living in New York City, frustrated with the singles scene. He then meets Steve (Michael T. Weiss), the man of his dreams who happens to be HIV-positive. Jeffrey must get over the fear of Steve dying before he can experience what will be the greatest love of his life.
3 Needles
Showtime Too at 9 p.m.
This 2006 feature film weaves three separate tales of how HIV/AIDS has affected humanity on a global scale.
Close to Leo
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When 21-year-old Leo announces to his family that he is HIV-positive, it is decided that his 11-year-old brother Marcel is too young to understand. But when the two travel to Paris together, Marcel confronts Leo with his suspicions. This 2002 film is in French, with English subtitles.
Days
here!, Cox Communications customers check listings
Claudio has been HIV-positive for 10 years. He feels trapped in his boring life until he meets a handsome waiter named Andrea, who restores his faith in love. This 2001 drama is in Italian, with English subtitles.
“Here to Remember”
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Hosted by Leslie Jordan, this 2004 special includes a series of personal accounts from celebrities telling stories of loved ones they have lost to AIDS.
“The Unknown Cyclist”
here!, Cox Communications customers check listings
A man’s dying wish is for the people in his life to participate in a 450-mile charity bicycle ride through Northern California. Nominated for a GLAAD Media Award for Outstanding TV Movie or Miniseries in 2000.
A Year Without Love
“We are living, breathing proof that it’s possible to survive.”
here!, Cox Communications customers check listings
In this 2005 film, Pablo is an HIV-positive gay poet. Instead of wallowing in sorrow, he goes on a journey to find the love of his life.
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