The Forgotten Epidemic 

Is anyone talking about HIV and AIDS anymore?

The student commons area at Meridian High School more closely resembled the epicenter of a 1960s anti-war demonstration. Students ditched class en masse to protest. Their numbers rivaled the turnout at school pep rallies. They chanted. They waved condoms. Some displayed an articulation beyond their years as they faced news cameras.

They weren't protesting a war overseas but another kind of battle. They were fighting for information. Their war cries were calling for the education they knew young people needed if they were to emerge victorious against the rise of HIV and AIDS.

The year was 1991.

Just days before the student rally at Meridian High School, a school nurse presented information about HIV and AIDS to students at Lowell Scott Middle School. Word of the presentation leaked home to parents, false allegations flew, and district officials slapped teachers with a gag order, preventing them from teaching students anything related to sex education or HIV and AIDS. The censorship drove Meridian High School students from classes in protest.

The biggest news story of the year at Meridian High School made it into newspapers around the country. As a high school reporter for the school's student newspaper, I jumped on the story along with my colleagues. We planned for full, front page coverage of the event.

But no one ever read the story. It never made it to print.

Instead of a news story about the protest and gag order, Meridian students opened the next issue of their high school newspaper to find a near-blank front page. A few words broke the emptiness:

"This space was reserved for the story that everyone expected to see but we weren't allowed to print."

Meridian students faced a media blackout of HIV and AIDS coverage through the early 90s. Nearly 30 years after the identification of the disease, and 17 years after the censorship in the Meridian School District, HIV and AIDS activists say the issue still remains in the dark--largely dismissed and stigmatized by the mainstream media. Researchers found that the reporting of HIV has fallen out of vogue. And activists say that when the media fails to accurately portray the realities of HIV and AIDS, one of society's most influential social institutions misses the opportunity to educate, inform and save lives.

"More and more people are getting HIV, and that's because they're not aware they're at risk. And the media can play an enormous role in educating people, raising awareness and making people understand that they can actually get this disease," said Regan Hofmann, a journalist and editor-in-chief of POZ, a lifestyle magazine for those living with HIV and AIDS.

Activists aim to close the information gap as part of this year's World AIDS Day campaign. The Dec. 1 celebration of HIV and AIDS awareness not only encourages people to take a proactive approach to preventing the spread of HIV but to broaden their understanding of the realities of those living with HIV­--realities often eclipsed by the mainstream media, activists say.

Sensationalized news coverage often swallows accounts of the reality of living with HIV, said Idaho activist Duane Quintana. The founder of Allies Linked for the Prevention of HIV and AIDS (ALPHA) noted that local media coverage of the epidemic remains largely absent until a dramatic story surfaces. He pointed to a dark spell in local coverage of the issue until prosecutors recently alleged that Kerry Stephen Thomas, a former Boise State basketball player, knowingly spread the disease. Local news outlets dedicated airtime and ink to the allegations, ensuring trial and guilty plea in volumes that surpassed typical coverage of positive news stories about HIV and AIDS, Quintana noted.

President Barack Obama's recent and historic lifting of bans prohibiting HIV-positive people from entering the country received only scant coverage in the local media--just a paragraph mention in the Idaho Statesman.

"It can be very frustrating when we send press releases out all the time, and we can't get any hits," Quintana said. "And then this Kerry case was the top story."

Punitive disclosure laws that activists say can sometimes result in "he said, she said" accusations and the sensationalized media coverage that follows cases like Thomas', have consequences, Quintana said. They stigmatize. And that deters people from getting tested and seeking treatment.

"There's no incentive to test positive," Quintana said. "And we can keep people alive if they know they have HIV."

AIDS-related deaths in Idaho have declined since 1995, but the number of people living with HIV in the state has steadily risen, according to the state Office of Epidemiology and Food Protection. The office estimates that 1,028 Idahoans are now living with HIV or AIDS. In 2006, the Centers for Disease Control and Prevention estimated that 1.1 million Americans were living with HIV and AIDS, and 20 percent of them were unaware they had been infected with the virus. In 2008, the CDC estimated that in 2006, approximately 56,300 people were newly infected with HIV.

"The pandemic is so severe, and we need every arsenal to fight it. And the media is such a powerful tool," Hofmann said.

Sociologists recognize the important role the mass media plays as an agent of socialization. It's full of symbols that create meaning for us about the world. It shapes our ideas, beliefs and understanding about ourselves and others.

"(A) good news story can really educate people about what can and cannot be done and show that people can't only survive [HIV] but live full lives in spite of it. And at the end of the day, it makes people less afraid of the disease and more likely to get tested," Hofmann said.

A 2004 study published in the Columbia Journalism Review found that the overall media coverage of the U.S. AIDS epidemic has decreased since 1981. Researchers from the Kaiser Family Foundation and Princeton Survey Research Associates International attributed the decline to what some have called "AIDS fatigue on the part of media organizations." Domestic coverage of the epidemic spiked in 1987, then declined with minor peaks following Magic Johnson's 1991 announcement that he was HIV-positive and the introduction of highly effective anti-viral drug therapies in 1996. Those minor peaks began to paint a picture of HIV as a manageable, chronic disease.

"That's good and bad," Quintana said of the media's spotlight on Johnson and life-saving therapies. Quintana and other activists worry that apathy has become a side effect of such coverage.

"People just aren't worried. And maybe that's why it's just not getting covered as much ... fewer people are dying," Quintana said. "We're keeping people alive, and that needs to be celebrated to some extent. But we also need to keep other people from getting it as well. And we keep people alive if they know they have HIV."

ALPHA encourages Idahoans to KYS or "Know Your Status," and each year more and more people line up at ALPHA testing sites for a quick mouth swab that can reveal their status in minutes. More than 1,000 people have taken HIV tests through ALPHA this year.

"Every year that goes by there is an increased awareness in the health-care provider community. Each year I see more health-care providers doing HIV screenings," said Dr. Clay Roscoe, a physician at Boise's Wellness Center, Idaho's only clinic dedicated solely to the care of HIV patients. "[Yet] we really haven't seen a drop in new infection rates, and I'd like to see that in my lifetime."

Apathy partly stands in the way of that drop, Roscoe said.

"There's more of a laissez-faire attitude because it's known that the anti-viral treatments are well tolerated. I'm always a bit worried the guard is down, especially with the younger generation."

Generation Y never woke up to headlines reporting the death toll of a mysterious new disease called AIDS. For some, it seems Magic Johnson has lived a lifetime being HIV-positive. Idaho's youngest generation can't recall the time their Meridian predecessors walked out of class to protest a gag order that silenced discussion about STDs. And activists note that editors aren't clamoring to fill newspapers and newscasts with HIV stories.

"It isn't a sexy issue," said Jose Alfredo Hernandez, a case manager at the Wellness Center.

The Meridian School district eventually lifted the gag order and offered parents the option of enrolling their students in sex education classes that covered information about HIV and other STDs. And administrators scaled back their censorship of Meridian High School's student newspaper. As the veil of silence lifted, students started reading about what it was like to live with HIV.

In a 1994 Meridian Warwhoop article, Meridian students met a vibrant young man who loved photography and painting. Rick Clara was a popular Borah High School student. He liked to use the word "normal" as the adjective that best described him. He also contracted HIV at the age of 22.

Clara started his days by swallowing four pills. He took another four pills in the afternoon. He finished his day with a dose of another seven pills. Intravenous drips punctuated the 17 pill-a-day regimen.

"What I dislike most about having AIDS, is people judge you before they even know you. There's this stigmatism that comes with having AIDS--that you're gay, a drug user, a bad person," Clara told student reporters.

Young, white men, the demographic profile Rick Clara fit at the time he was exposed to the virus, still test positive for HIV at a rate that surpasses any other Idaho demographic group.

Idaho's 20- to 29-year-olds are contracting the virus faster than any other age group in the state. The rate of infection for that group increased by 147 percent between 2002 and 2007, according to the Idaho Department of Health and Welfare's Office of Epidemiology and Food Protection.

But the disease cuts across race, class and gender lines­--a fact that not everyone gets, Hernandez said. He said that race, class and gender play roles in who gets tested and when.

"We know that Latinos are not getting tested until very late into the disease," he said.

Whites accounted for 77 percent of Idaho diagnoses between 2002 and 2007. But the Office of Epidemiology and Food Protection noted increasing numbers of diagnoses among Hispanics and blacks.

"We've done a good job with [testing] women as it relates to pregnancy. At primary care health clinics like Terry Reilly, for example, they do a really good job of doing OB [HIV] screenings for their patients, and we've gotten a handful of patients through that process," Hernandez said.

The Centers for Disease Control and Prevention now recommends that women undergo pre-natal HIV screenings. It's just one of the many new guidelines that have changed the way HIV is now treated and diagnosed.

Activists and doctors say a lot has changed, and at the same time, too little has changed since students first meet Rick Clara.

In 1994, ALPHA was nearly a decade from inception. Wellness Center funding was still down the pipeline. And many considered the disease a death sentence.

"It's night and day," Roscoe said of the treatment he has seen evolve since his med school days in the '90s. "I was seeing people take a cereal bowl full of pills with lots of side effects."

Now many HIV patients stave off AIDS with just one pill a day. Many can even hold off on taking medications.

"You're not going to die of AIDS in this country," Roscoe said, noting that with monitoring and treatment, people with HIV can have a normal life expectancy and now die of the same things that kill the general non-HIV positive population.

The care of HIV patients has also become less fragmented, said Wellness Center manager Jamie Perry. People who test positive for HIV can now find a health-care home at the clinic housed under the Family Medicine Residency of Idaho program. Beginning next year, the program is slated to become just one of two residency programs in the United States that trains HIV specialists.

The Wellness Center brought HIV medical care, referral services, support programs, nutrition, testing, counseling and case management under one roof in 1998. The center and its satellite clinic in Pocatello saw 511 patients last year. Between 2007 and 2008 the number of patients treated at the clinic jumped between, but for the most part, patient volumes have held steady over the years with only slight increases from one year to the next. And the center treats everyone--regardless of if they have health insurance.

A joint study between Harvard and Stanford universities estimates the average cost of treating an HIV patient at $20,000 per year. Funds from the Ryan White Treatment Modernization Act help the Wellness Center cover medical costs for middle- to low-income patients. And the clinic works with all patients to ensure that they get the care that they need. If a person is diagnosed as HIV-positive tomorrow, they can be assured that they can access medical care through the clinic, regardless of their ability to pay, Perry said.

But challenges still slow the fight against the disease.

More physicians need to make HIV tests as routine as cholesterol tests, Roscoe said.

"If you're a health-care provider in rural Idaho, it's not going to be on your mind every day," he said.

And HIV patients still face a host of social challenges, Hernandez said. Low incomes, difficulty accessing housing and a shortage of rural health-care providers may hamper some patients' ability to comply with treatment, he said.

And there's still a fight to change attitudes.

Nearly 30 years after researchers first identified HIV and AIDS, people with the infection still face stigmatization. People still hold prejudices about who gets HIV, POZ's Hofmann said. And many still face an uncompassionate community, according to Hernandez. The Wellness Center recently changed its name from the HIV Services Clinic at patients' request. They felt stigmatized just walking into an office displaying the letters HIV, Hernandez said.

If Hofmann fits a stereotype, it's that of a successful, professional woman. She's well educated and well published. She excelled in her journalism career, earning command posts at East Coast magazines. And the cover of Hofmann's memoir shows a beautiful woman with a long mane of blonde hair, perched atop a horse. The book's title also hints at the secret she kept for so long. I Have Something to Tell You reveals how Hofmann came out as HIV-positive.

"I wanted people to know that HIV was alive and well. And I wanted to contribute to the de-stigmatization of the disease."

In I Have Something to Tell You, Hofmann reflects on coming out very publicly--on the cover of POZ--and about life as a journalist, and the power of the media in fighting the disease.

"One of the things that I think about as a journalist is, 'Why do we always have to go to the negative, the dark side?'" Hofmann said. "There are some remarkable stories about remarkable people doing extraordinary things in and around the world of HIV."

Quintana will tell you remarkable stories, if you ask. He'll tell you about the scores of volunteers who have passed through the doors of ALPHA headquarters. He'll tell you about how ALPHA grew from his single vision to become a hub for HIV education, outreach and testing. And if you prod him, he'll humbly tell you his own remarkable story--of how he grew from a school kid in small-town Wendell, Idaho, where sex education wasn't on the curriculum, to a filmmaker, activist and sought-after HIV-AIDS educator. He'll tell you that as a 19-year-old living in Phoenix, he didn't think HIV could touch him. So when a friend went to get tested for HIV on a regular May day nearly a decade ago, Quintana merely went along for support. Quintana's test came back positive.

"Ever since that day in May, I have struggled with myself. I struggle with my health, my self-worth, my thrive for life, my hopes of love, and my dreams of success," Quintana wrote during the infancy of his activism career on a Web site he launched to help others cope with an HIV diagnosis.

Quintana, like Hofmann, could have kept his disease private. But like Hofmann, he saw silence as fuel for stigma. Today, Quintana thrives and survives despite struggles--struggles that activists say shouldn't be eclipsed by media hype of the innovations in HIV treatment.

"People want to see people who are well. So you may be sick, but you're smiling about it. And when people see that, they don't get the reality of what you go through," Quintana said.

It's hard not to feel Quintana's forceful spirit: It's inspiring. Relentless. Real. And honest.

"Even though I feel like I can live, something deep inside me tells me the worst thing I can ever do is transmit this to someone else. That it's a horrible thing to go through, and I wouldn't want anyone else to go through that," Quintana said.

Quintana sinks back in his chair and pauses for a moment. The homey ALPHA meeting room filled with overstuffed, slip-covered furniture grows silent as Quintana mentally rewinds the last decade of his life.

"I feel like a lot of my youth, a lot of the things that you do as you grow older, were robbed from me ... not being able to be a dude. I've been the AIDS boy."

Quintana's truthfulness and openness have helped pushed HIV awareness forward in Idaho. It helped lift ALPHA from a little known nonprofit to becoming the state's largest HIV testing organization. To many students, he is the gentle herald of HIV prevention.

He breaks stereotypes as a vocal advocate of prevention. Once you see Quintana, once you talk to him, you realize he could be just like you--a young, affable Boise guy known to offer hugs and to frequent coffee shops. He gives HIV a face. And he shares his story again and again­--in classrooms, on the Web and on film.

His ambitious film documentary, I'm Just Me, Just Like You, presents the extraordinary journey of Quintana and his family's experience with HIV. Through a camera lens and Quintana's brute honesty, viewers realize that Quintana is, in many ways, just like them.

But Quintana's education efforts haven't always been met with open doors. He has struggled to reach students. He found some schools welcome HIV-positive women into the classroom but won't allow HIV-infected males to speak to classes. There's still ignorance to penetrate, he said.

"A lot of people have no clue that they should be nervous about HIV."

Meridian High School students rallied on behalf of their peers and successors left without a clue. They demonstrated in 1991 because they knew that to prevent the next generation of HIV and AIDS infections, young people would have to have a clue. They would have to learn about sex and protection and STDs. They knew students had to talk about HIV and AIDS.

By 1992, the Meridian School District lifted its gag order. And soon after, sex education was put on the curriculum. But not all Meridian students learned about HIV and AIDS at school.

The sex education courses developed by the district offered parents and students one of three options: They could sign up for a health course that delved into all issues surrounding sex--reproduction, sexually transmitted diseases and contraception; they could take a course that just covered biological reproduction; or they could take a health course that skipped over sex ed.

District spokesperson Eric Exline said most students sign up for the class that puts sex under the microscope and delves into issues surrounding the transmission and prevention of STDs, including HIV and AIDS. And because in recent years, fewer students opted for the class that didn't cover STD education, that course is no longer offered.

"The numbers were so small. You just can't afford to offer a class for seven students," Exline said.

Parents who don't want the Meridian district teaching their children about STDs can have their students opt out of their health classes when talk rolls around to sex education. The district offers these parents the option to homeschool their children on the issue instead. But some AIDS activists say that when sex education is left to parents, kids may not get all the facts.

Information and education still isn't reaching some of the most-at-risk groups, Quintana said. People still have unprotected sex, and many still engage in unsafe sex practices with little fear, he said.

In that way, for some, little has change since the 1990s, when media coverage of the disease continued a steady nosedive. In 1994, Meridian school administrators halted student's efforts to reverse that trend. Despite putting sex education back on the curriculum, school officials still wouldn't let the Meridian High newspaper staff survey students about their awareness surrounding HIV. Another hole, with a short explanation, appeared on the pages of the newspaper:

"A story based upon student's attitudes and degree of knowledge about STDs was planned for this space ... However because of the subject matter of the survey, the school board would not allow us to continue with our research. For now, just pretend that sex and STDs don't exist."

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