By Lewis Whittington

June marked the 25th anniversary of the first AIDS cases in the U.S., but it was actually on July 3, 1981, that The New York Times ran the headline "Rare Cancer Seen in 41 Homosexuals." That first bit of publicity brought a yet-unnamed disease to public awareness.

With infections static or spiking and hot spots around the world ebbing or flowing, HIV remains a stealth pathogen that thrives. The realities change daily, and even off the front pages, it's an ongoing fight for 40 million people. Unraveling the mysteries of the disease remains an elusive holy grail. Though all attempts at a vaccine have failed, HIV/AIDS has become a manageable disease for those who have access to the new class of drugs that emerged in the mid-'90s. Throughout, obtaining accurate information, whether in the media or through clinics, has been a struggle.

Here are five lessons learned and unlearned, then and now, from a modern epidemic.

Lesson #1: AIDS is not just a gay disease

The Centers for Disease Control and Prevention (CDC) was tracking cases of a rare cancer, Kaposi's sarcoma, and pneumocystis pneumonia in homosexual men. Slowly, initial media reports on other "high risk" groups, such as intravenous drug users, Haitian immigrants and hemophiliacs started to surface - as did the theories that this was a blood-borne disease that was not just confined to homosexual men.

Newspaper reports began to surface about what was termed GRID (gay-related immune deficiency) starting in 1981.

Among the articles that sought to report accurate medical information about AIDS, there was even more neglect by news agencies squeamish about describing risky behaviors involving anal sex and exchange of body fluids through IV drug use. Prevailing homophobic attitudes in reporting news about homosexuals resulted in misinformation and ignorance. Even though AIDS has crossed every border and infected every group, it is still viewed by many in the U.S. as a homosexual disease.

Lesson #2: Reality is not pretty

Mainstream reporting about how AIDS was contracted was a hit-or-miss affair in the first years of the epidemic. The Philadelphia Inquirer published a series of articles in the early '80s that gave unflinching accounts of sexual behavior among gay men, including descriptions of rough, unsafe sex. In the U.S., sexually active gay men scoured the newspapers for any information or update as they saw the dire acceleration of the disease.

Newspaper reports would either be medical copy from the CDC or anecdotal tales of risky behaviors or possible methods of transmission. Donald Drake, medical reporter for The Philadelphia Inquirer from 1966 through 2001, was one of the first reporters on the story in the nation.

"In 1981 to 1982 my responsibility was to cover medical events, but I looked for stories that illustrated greater issues," says Drake, who is now a full-time playwright, in a phone interview earlier this summer. "When I started doing research on this disease, I thought it was going to become a catastrophic epidemic.

"As I got into it, most of my time was spent with the gay community, because in the beginning it was considered a gay disease. I saw that it was much more than a medical story. [It was also] about being in the closet, how do you keep your job - those aspects of the story."

Drake says there was resistance from editors to some of the issues surrounding AIDS. He believes that in the early years, the less-than-comprehensive coverage was as much because the disease was affecting very few people as the result of homophobia. But he acknowledges that newspapers were inattentive.

"I ran into a New York Times reporter I knew at a conference at the National Institutes of Health (NIH). I told him I was talking to researchers about this strange new disease that's taking hold. And he said, 'Oh, that,' in a very dismissive way," Drake recalls.

"The gay community claimed that the Times was homophobic, and I didn't believe it. But I remember the Gay Men's Health Crisis rented out Madison Square Garden for the Ringling Bros. circus and they sold every seat for a fundraiser. Leonard Bernstein conducted and Patti LuPone sang. It was quite an event, and what was so remarkable is that I was the only reporter there except for the Village Voice. How could [The New York Times] ignore that? So maybe there was."

Drake's research took him to a gay bathhouse in New York (with a handsome guide) where he was worried about being hit on. "Of course no one looked at me. That was the arrogance of my homophobia.

"There were some editors at the Inquirer who questioned whether the paper should be devoting so much time and space on this story," recalls Drake. "Newspapers very much look to their peers. We looked at the Times and The Washington Post, and none of the other papers were publishing much ... half-column stories, and we were devoting pages. At another paper I probably would have been shot down," Drake recalls.

Drake had the idea of showing how AIDS was affecting the world in a 24-hour period. He mobilized 27 reporters, 12 photographers, two editors and himself to bring it all together for a four-page global snapshot of the scope of the disease. He received an award from the Philadelphia Gay News for his reporting.

Lesson #3: Health and politics don't mix

In the 1980s, AIDS was one of the biggest crises of the Reagan administration, but you wouldn't have known it. By the time Ronald Reagan was convinced by advisors to declare AIDS "public health enemy No. 1" in April 1987, 20,000 Americans had already died of the disease. And infection estimates were just starting to reflect the actual scope of the epidemic.

In 1988, 107 million households in the United States received information about AIDS in the largest public health mailing ever. Surgeon General C. Everett Koop launched a campaign to make sure every American had the facts about AIDS transmission. Koop's efforts, and his stance on reality-based information for the prevention of AIDS, put him at odds with the Reagan White House. Reagan never discussed AIDS with Koop and admitted he hadn't read Koop's 1986 report on the disease six months after its release.

In Reagan's address about AIDS on April 2, 1987, the president remained obtuse about the facts: "Let's be honest with ourselves, AIDS information cannot be what some call 'value neutral.' After all, when it comes to preventing AIDS, don't medicine and morality teach the same lessons?" After Reagan was out of office, he made a public service announcement for the Pediatric AIDS Foundation that included a conciliatory statement about his past misunderstanding about AIDS.

In many ways, the Reagan-era brand of nonleadership and moralizing still prevails. Just this year, Rep. Mark Souder, head of the House subcommittee on drug policy, prevented the CDC from criticizing the current administration's "abstinence only" prevention programs. There were also governmental maneuvers to remove members of the CDC panel who didn't align themselves with Bush policies on the matter.

Dr. Jonathan Zenilman, a professor in the Division of Infectious Diseases at Johns Hopkins University School of Medicine in Baltimore, Md., has worked for 20 years in public health and has been a scientific partner at the CDC.After an AIDS conference at the CDC last spring, Zenilman publicly criticized Bush administration efforts to censor the CDC's recommendations for new HIV/AIDS education materials.In a phone interview earlier this month, he said the CDC was subjected to "political pressure from the [Bush] administration."

He's said that his comments that the CDC scientists were "beside themselves" over the government's intrusions have caused problems for them. "It's safe to say that morale is terrible at CDC. This administration is at odds with evidence-based health. When the science does not agree there is a standard formula - they either negate or obfuscate the science," he said.

Even now, there is confusion as to the scope of the disease. Susan Hunter's new book "AIDS in America" (Palgrave Macmillan) focuses on the epidemic in nonurban areas. Hunter's book is a service AIDS manual for its time, the human "reality" story of getting an HIV diagnosis and the behavioral impact in nonurban regions. Dire statistics, warnings and instructional prevention materials are ignored by much of the public. Among Hunter's provocative assertions is a claim that infection rates in the U.S. are currently grossly underreported by health officials by 20,000 per year.

Lesson #4: Treatment is not a cure

"Huge Sale, Buy Crystal, Get HIV Free!" The glossy posters screamed out from phone booths in Chelsea in New York's gay ghetto in 2004. They were paid for by Peter Staley, ex-user and one of the subjects in Rock Bottom, a new documentary by filmmaker Jay Corcoran. Corcoran gained the trust of five people in the throes of meth addiction (and some of their sex partners) and filmed them over a two-year period. "It was the perfect drug for a person with HIV with a midlife crisis," Staley says of the drug's addictive powers in the opening of the film.

Sexually active adults started to practice safe sex, but the '90s also brought safe-sex fatigue, a drop-off in HIV testing and a return to unsafe behavior among many young gay men who felt that if they didn't have sex with anybody outside of their generation, they wouldn't be infected.

"[The scene] reminded me of the '80s before protease drugs," Corcoran said of the craze. A subculture of gay men emerged who were addicted to meth and having sex on meth. The kick is the same for many - dance for hours, do more drugs in the bathroom, lose all inhibitions and override feelings of loneliness.

"A good friend of mine called me from the hospital. He had just had a staph infection and [was] near death," recalls Corcoran. "And it brought up again the wave of confusion and anger, sadness and just thinking, What are we doing? What have we learned in 25 years? Do we still want to kill ourselves? Why do we hate ourselves? I don't mean that 'we' as every gay man, but seeing it reminded me of these negative emotional attitudes about our sexual behavior and homosexuality."

Lesson #5: Different strategies for different demographics

The Special Immunology Clinics at the Children's Hospital of Philadelphia (CHOP) have treated families dealing with HIV/AIDS for more than 20 years. "The information about HIV/AIDS is out there," says Laura Hinds, manager of family services since 2003. But "there's a lot of denial about it."
Dr. Richard Rutstein handles the clinical side of AIDS for HIV-infected infants, children and adolescents and "continuity of care" for the family. The Special Immunology Family Clinic was the first in the nation to set up strategies to address the medical, psychological and social aspects of families dealing with HIV/AIDS.

The sexually active teens he sees "get all the questions right," says Rutstein. "If you ask, 'How do you catch HIV?' they will say, 'By having sex, by having anal sex, by having intercourse.'"

Even with a drop-off of outreach AIDS education, Rutstein believes "every teen in this country knows [the facts], but only 20 to 30 percent, depending on where you are, used a condom last night." Both clinicians are fighting not only the spread of the disease, but also the complex social problems that come into play.

"There's an incredibly fatalistic attitude among urban youth, teen city youth," Rutstein believes. "HIV is not what worries them. They worry much more about a slew of things that go along with living in parts of the city. And their mortality in their minds is more likely to come with violence and high-risk life."

Hinds says there is the added problem of dual risks of pregnancy and being exposed to STDs. "There's a huge number of teenage girls who want to be pregnant. It's still a phenomenon throughout the city," she says. "The unconditional love of a baby that they can create. The proof that they were desirable [to] someone of the opposite sex. Those are chief motivators for teens in the inner city. So [AIDS] is not their primary fear."

Since drug protocols are particularly effective for pregnant women with HIV, the services at CHOP can be completely successful with the thorough treatment they provide. "Paranatal HIV programs save an estimated 35 to 50 lives a year. With HIV, we can tell mothers, 'If you take this medicine for four months and your baby does, you will have a healthy baby,'" says Rutstein.

There have been complete success stories at CHOP's pediatric AIDS unit. This year there is a patient entering the 21st year of treatment, but there are also unnecessary tragedies. "Just last year we saw a child under 1 die from AIDS who was literally born on the street," says Hinds. CV

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