Cleve Jones has known death all too well since the AIDS era began 20 years ago — he's buried many friends and seen the memorial patchwork quilt he started grow to 50 miles of fabric.
In the United States alone, more than 438,000 men, women and children have died of AIDS. The death toll is greater than U.S. casualties in World Wars I and II combined.
But for all the ghosts, Jones, a longtime AIDS survivor, sees a gradual rebirth.
"The early years were years of terror, of mystery, uncertainty … people died so quickly," recalled Jones, who was diagnosed HIV positive in 1985 and who began the AIDS Memorial Quilt that year. "Now our lives are about trying to lead as much of a normal life as we can."
The nation is a far different place than it was on June 5, 1981, when the first report of a mysterious disease surfaced in a Centers for Disease Control publication. In time, the disease thrust sexual minorities onto the public's consciousness, forced frank discussions about sex and morality, and changed the way many Americans approach their own health care.
"HIV/AIDS affects our culture in so many different ways," Jones says. "To address AIDS, one must address issues of such as the conditions of prison, prostitution, drug use, issues of health care, research, on a more global front, the treatment of women, racism. AIDS sits at the intersection of a great many issues."
To mark the 20-year anniversary, a three-day rally sponsored by Jones' AIDS Memorial Quilt, the National Minority AIDS Council and the National Association of People With AIDS begins today in Washington, D.C.
The Activists' Road to Gay Tolerance
The first targets of the disease — medically as well as socially — were gay men.
"Twenty years ago, my friends and I were having a discussion on how AIDS would destroy gay people and the gay movement," said Jones. "But the exact opposite has happened. People were forced out of the closet. People were not going to lie about their relationships as they watched their partners of 20 years die. They were forced into action."
Today, more than 150 openly gay politicians hold elective office. On television, characters on NBC's Will & Grace and the WB's Buffy the Vampire Slayer have had significant roles. And gay-straight student alliances have formed in schools around the country.
Alan Carlson confesses to being surprised at this development. As president of the Rockford, Ill.-based Howard Center for Family, Religion & Society, Carlson said he thought "AIDS would remind society that sex is not a play thing."
"I thought it would remind people that when you get away from relationships between a man and a woman, traditional sex, bad things happen like disease. … People didn't learn from that, and I guess that's a sign basic moral teachings and understandings is weaker in this country," Carlson said.
The first call to action came from gay activists, who lobbied for more money for drug research and pressured the Food and Drug Administration to make drugs available quickly to sick patients. Thousands were dying quickly, these activists argued, and countless more would die if the FDA treated AIDS like a typical disease and took years to approve drugs.
"AIDS activists were very vocal and effective very early in the disease," said Dr. John Bartlett, chief of the division of infectious diseases at Johns Hopkins School of Medicine in Baltimore. "They inserted themselves into the decision-making [process], and that has extrapolated to other parts of medicine. People have learned from that."
Largely because of this work, AIDS today is not the quick death sentence it used to be. While there is no cure or vaccine, there are drugs to keep AIDS at bay. The death toll in the United States has dropped every year since 1996.
"We've gone from counseling patients and getting them ready to die to looking at the long-term, seeing how we can help patients live longer lives," said Dr. Margaret Fischl of the University of Miami School of Medicine. "Patients are healthier, going back to work and for the most part functioning and trying to live normal lives. We couldn't say that 20 years ago."
Stigmas and Complacency
Still, the face of AIDS and attitudes toward the disease have not changed so dramatically in some communities.
While the rates of reported infections have generally plateaued at 40,000 a year, there has been an increase in infections among people of color and young people between the ages 13 and 24. According to the CDC, African-Americans are making up 54 percent of new infections. And a CDC survey released Thursday said 4.4 percent of gay and bisexual men ages 23 to 29 are newly infected each year with HIV.
Dr. Robert Scott, who has been treating AIDS patients in a predominantly African-American community in Oakland, Calif., for 20 years, believes part of the reason for this trend is because drug addicts and prostitutes have been unwilling — or unable — to change their behavior. Another reason, Scott said, is the deep stigma people of color link to AIDS.
"Many families I still see lost their loved ones to AIDS, and they haven't gotten over it," Scott said. "In my community, I had a mother who told me her son had AIDS, and she said, 'Well, I hope he got it shooting up with some girl because certainly he's not gay.'"
"What we have to remember is many people of color are concentrated in poor areas and may not be able to afford the treatment to combat HIV," said AIDS activist Diana McCague. "In many ways, this is still a nation of haves and have nots."
For younger Americans, Scott and other doctors note the success of HIV therapy has contributed to the steady rate of infections. Unlike their surviving 40-something predecessors, the HIV patients of this new generation have not watched a slew of their friends die.
They did not see actor Rock Hudson in his final days or the deterioration of an AIDS patient. Instead, they see famous HIV-infected sports figures such as Magic Johnson and Greg Louganis leading productive lives and attractive vibrant models on billboards advertising HIV medications. They arguably are being lulled into complacency.
"Some [older] patients have told me that they've lost all their friends, people they've grown up with, to this disease, that they're the only ones left. That's dramatic," Scott continued. "If you're young and haven't had the losses — because sometimes death scares you into doing what you need to do — then it won't have an effect."
Reevaluating the Drug War
Intravenous drug users have always been a group at high risk for AIDS. Today, IV drug users make up 25 percent of annual new infections. But attempts to combat this with needle-exchange proposals have run head-on into the government's war on drugs.
McCague, founder of the New Jersey-based Chai Project, the state's first needle exchange program, has been arrested several times for providing clean syringes to drug users.
"We deal with preventing people from getting the disease in the first place," McCague said. "The U.S.'s war on drugs has failed and failed miserably, and the only way we're going to stop the spread of HIV among drug users is with needle exchange."
But others believe needle exchange programs will only encourage drug use and only exacerbate the spread of HIV.
"It's only adding on to the problem," said Alan Carlson. "When someone is putting something dangerous and destructive in their system, it doesn't help to provide them with clean needles. It's only encouraging the problem."
The Crisis Continues
What will the third decade of HIV/AIDS bring?
"The one thing we've learned about AIDS is that it moves with a velocity like no other disease," said Bartlett. "We've learned that whatever we say now about the disease is going to look pretty silly five years from now."
The debate over how much sex education to give teenagers will continue. Some stress abstinence programs are enough while others argue the "no sex" approach alone is not a realistic way to deal with more sophisticated teenagers.
"We have state-after-state adopting legislation mandating abstinence only education in secondary schools," said Reginald Fennel, University of Miami sex education professor who has given AIDS workshops around the world. "It is ironic that school systems would be teaching these programs when students in these systems are pregnant."
Cleve Jones hopes the public will remember the AIDS crisis is not over.
"We must move forward on all the fronts," Jones said. He knows that his life will be shortened by the HIV virus but is grateful he has lived through the first 20 years of the disease. And he still has hope that he'll continue to survive for 20 more years.
"I still have this perverse hope that I am going to live a long life," Jones said. "I'm 46 … I'm getting there."