Twenty-five years later, HIV/AIDS rages on

Vidya Rao and
Howard Manly

So many have died.

And yet so many more are alive.

At last count, 25 million people have died since the first reported case of AIDS in June 1981. But now, years after the development of antiretroviral treatment cocktails, nearly 40 million people are living with HIV/AIDS.

Like Catherine duBois Gaynes.

She was a party girl in college, an avid substance abuser who used alcohol, marijuana and cocaine as well as heroin — addictions that would continue for decades.

Gaynes was engaging in risky behaviors long before the public and many in the medical community had any inkling of the devastating scope of HIV/AIDS, and she had no idea that being an IV drug user made her a prime target for the virus. At the age of 48, she made the decision to sober up. But it was too late.

Three years later, in 1997, Gaynes was diagnosed with HIV. “I was totally flabbergasted,” she explains. “I had already reached menopause when I was diagnosed and I just thought, ‘I’m too old to have babies, I’m too old to catch anything.’”

Gaynes never thought that HIV would affect her. In fact, at the time of her diagnosis, she barely even knew what HIV was.

“I had heard the messages about AIDS,” she recalls. “But like a lot of other people, I ignored them because I thought it was a gay white man’s disease.”

A week after her diagnosis, Gaynes told her family about her status. “My family was supportive from the beginning,” she says. “I could talk to my daughter or to my cousin, who is a nurse, about my condition, but if someone’s not living with the virus, then they just don’t get it.”

Living with the virus has increasingly become a heavy burden in communities of color.

African Americans make up just 13 percent of the U.S. population, but account for an astounding 51 percent of new HIV diagnoses. Black men are diagnosed at more than seven times the rate of white men, black females at 20 times the rate of white women.

“HIV is one of the greatest crises threatening the black community,” Cathy Cohen, a political scientist at the University of Chicago and author of a book about blacks and AIDS, told Newsweek. “It’s the life and death of black people.”

The experience of Vanessa Jackson (not her real name) sheds light on what is becoming an almost daily occurrence.

She had had a string of bad luck: with men, with her career and with her health. But nothing compared to the emotional rollercoaster that she would ride beginning in 1995.

At the age of 38, Jackson suffered a stroke that left her temporarily unable to speak. While in the hospital, she developed flu-like symptoms. After doctors administered several tests, they discovered that Jackson had been HIV-positive — for six to eight years.

“When the test came back positive, I was so angry and also scared to death — I thought I would die,” she recalls.

Jackson didn’t really understand the diagnosis and couldn’t believe that the virus had gone undetected for so long. “I had numerous doctors’ visits because I was suffering from endometriosis and was anemic. They handled my blood all the time but they never suggested that I should get tested.”

Jackson had heard that HIV was a disease that affected gay white men and IV drug users, so she never thought that she could be a victim. She realized that she had been infected by a sexual partner — her ex-husband, who had turned out to be bisexual and had engaged in sexual encounters outside of the marriage.

Shortly after her diagnosis, Jackson was laid off from her job at Fleet Bank and was unable to work due to a lack of energy. She and her daughters became homeless and were forced to live in her car. A friend put Jackson in touch with a doctor at UMass Worcester, who connected her with the Boston Living Center, a nonprofit community center that offers various support services to people living with HIV. Jackson was then assisted by the Sidney Borum Jr. Health Clinic in receiving social security disability payments.

At least Jackson was able to find help. The down-low phenomenon, where supposedly heterosexual men engage in unprotected sex with both men and women, is raging through the black community.

Among African Americans, heterosexual transmissions accounts for 25 percent of male infections and 78 percent of female infections. Many don’t even know they have the virus. Worse, some that do know are not telling their partners.

When it comes to sex, individual responsibility is often the last topic discussed, while placing blame on politicians and black preachers remains near the top of the list. Ignorance has also served as a stumbling block. In a 2005 poll, for instance, 27 percent of blacks said they believed that “AIDS was produced in a government laboratory.”

A recent study demonstrates that is not the case. Studies of chimpanzee feces confirmed long-held suspicions that HIV, the virus that causes AIDS, originated in wild chimpanzees in southern Cameroon, where the primates are considered a delicacy. In examining the samples, researchers found signs of chimpanzee simian immunodeficiency virus, a close relative to HIV-1, one of the strains affecting humans.

The research, coupled with the emergence of antiretroviral treatments, has clearly prolonged the lives of those infected. But problems remain.

Rep. Henry Waxman, a California Democrat, is a frequent critic of the Bush administration’s focus on abstinence education when it comes to preventing unwanted pregnancies or sexually transmitted diseases.

In 1999, the Centers for Disease Control and Prevention, or CDC, published summaries of 24 initiatives shown to reduce transmission of HIV, the virus that causes AIDS. Today, those strategies guide the actions of HIV prevention programs nationwide because they met the agency’s guidelines for scientific evaluation.

Waxman says the CDC itself has found numerous other programs to be effective. In a letter sent last month to CDC director Julie Gerberding, he questioned why the guidance had not been updated to include those programs.

He suggested that politics might be a factor.

“It is perhaps not coincidental that the new prevention programs include interventions that some political constituencies oppose, such as condom instruction for high-risk populations,” Waxman said.

Some health analysts agreed with Waxman’s assessment that an update of the guidebook was warranted.

“There is incredible pressure to make sure that we’re using our scarce prevention resources well with interventions proven to be effective,” said Julie Scofield, executive director of the National Alliance of State & Territorial AIDS Directors. “Relying on interventions from ’99 in 2006 is really quite unacceptable.”

She said that AIDS directors at state and local health departments were particularly looking for programs proven effective in reaching high-risk populations in the black and Hispanic community.

“Their numbers are clearly increasing in the epidemic,” Scofield said. “We’re very much concerned, and we don’t have the right arsenal of interventions to use to try to reach those populations.”

Annual HIV incidences peaked in the mid-1980s, when more than 150,000 new infections were reported. Since the mid-to-late 1990s, the number of new infections has stabilized at about 40,000 a year, according to the Kaiser Family Foundation, which conducts health research.

Blacks made up 49 percent of new AIDS cases in 2003; whites, 28 percent; and Hispanics, 20 percent, the foundation said.

Gaynes, the self-admitted party girl, has vowed to do her part. Now 60 years old, she has decided to devote her life to educating the public about HIV/AIDS.

She not only speaks about her experience to various community groups and Boston Public School students, but also serves as an advocate for other women of color who are battling the virus through her role as co-chair of the Quincy South Shore AIDS Consortium and her work with the AIDS Action Committee.

In 2002, she was a recipient of the Martin Luther King Jr. Community Service Award for all of the work that she has done around HIV prevention.

Gaynes says that in many ways, HIV has helped her change for the better. She is healthier now than she has ever been, living free of drugs and alcohol. She has also become politically active and insists that other women of color who are infected should utilize their powers as citizens.

“I am more politically astute now,” she says. “People need to realize that HIV/ AIDS is directly tied in with politics: who are the victims of the disease, who gets the care and what programs are cut from the budget?”

The Associated Press contributed to this story.

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