Local faces of AIDS

For many years after a bizarre immune-system-destroying disease first appeared in the United States, the faces of AIDS we saw everywhere were heart-wrenching images of death. Infection meant certain death in the worst imaginable manner—once-healthy bodies ravaged by an array of opportunistic infections and cancers.

This baffling new disease terrified doctors, blood banks and the nation. Most of the early dead were gay men, and they were blamed for their lifestyle by mainstream America and ostracized by nearly everyone. For many, the victims of AIDS were no more than strangers in media accounts; for others of us, they were our personal friends.

In 25 years, AIDS has killed more than 25 million worldwide, including a half-million Americans. At the end of 2005, the death toll in California exceeded 81,000. In the four-county capital region, 2,268 have died.

The picture improved dramatically a decade ago as new drugs transformed HIV—the virus that causes AIDS—into a manageable disease. Those infected today with HIV have a good chance of living out the same life span as anyone else. It’s no wonder then that we see more optimism now in the faces of those suffering from HIV/AIDS.

In Sacramento, the faces of AIDS look like 46-year-old Ava Gardner, who was infected 18 years ago by her husband who’d been having sex secretly on “the low” with other men. They look like Michael Jentes, who got a reprieve at death’s door three years ago and now, at 51, is also a long-term survivor of AIDS. And they look like Richard Mains, 29, and Dalene Imgraham, 49, whose virus hasn’t yet turned into AIDS. But also, today, it’s not possible to tell by looking at someone’s face anymore who’s been stricken with the disease. As Ava says: “HIV looks like you, me and everyone else.”

Locally, people with the virus parallel the population served by Sacramento’s CARES, which provides services for those with HIV and AIDS. According to the center’s Medical Director Dr. Paolo Troia, they’re still mostly men (80 percent). They’re also aging: 55 percent are between 25 and 44; and 42 percent are 45 to 64. They’re disproportionately from minority groups as compared to the total population: 22 percent are black, 15 percent are Latino, 2 percent are Asian and 57 percent are white.

Infection rates in the Sacramento area have risen over the past three years chiefly among two groups: Men having sex with men (from 58 percent in 2003 to 65 percent in 2005) and among women through heterosexual transmission (60 percent in 2003 to 72 percent in 2005).

Effective new treatments for HIV/AIDS, Troia fears, may be responsible for a complacency that’s unleashed a resurgence of risky behavior among gay men, resulting in the hikes in infection levels. Cultural and religious constraints are blamed for turning AIDS into the leading cause of death among young, heterosexual black women today.

“We’ve made a lot of progress, but it’s still a disease that a person should very much try to avoid,” Troia says. “It’s nothing to be cavalier about. It’s a disease that will change your life forever.”

As World AIDS Day approaches on December 1, here are some statistics to consider. More than 1 million Americans are living with HIV/AIDS, and as many as one-third don’t even know they’re infected. Locally, that means 5,000 people have the disease, including one-third who don’t know it. Nationally, 52 percent of new HIV infections are in people under 25 years old—every two hours, two people between 18 and 25 are infected.

Despite the changing faces of AIDS since its discovery 25 years ago, doctors like Troia remind us that it’s a preventable disease. The risk factors remain the same: unprotected sex and intravenous drug use.

Ava Gardner
Her minister husband led a secret life on the “down low.” Now, Ava’s left behind to pay the price.

Ava Gardner’s husband didn’t want to die alone. That’s why he never told her he was infected with HIV, and it was only on his deathbed that he admitted he’d married her as a cover.

Though she had a daughter from a previous long-term relationship, she describes herself as naive when she met Bernard Shipps at Bible study class. He was the first man who’d had her heart, and she married him six months later. She was 28.

Ava had no idea that while she stayed home leading the submissive life of a minister’s wife, he was having sex with men. Men who lead these double lives—many are black and Latino—call it having sex on the “down low.” They do it for fear of losing everything in their worlds, where rigid standards define manliness and churches brand homosexuality an abomination.

Raised in a Pentecostal household, that’s what Ava believed. It was the gay men dying at the UC Davis AIDS clinic she befriended after she was diagnosed with HIV who changed her mind. When they told her they were bad men, that they deserved the disease, she told them no, that Christ still wants them.

But the evangelical church where Ava’s husband ministered didn’t want her to speak the truth, and, for a couple of years after his death in 1993, she lied. She admitted that he’d had affairs but said he’d gone with women. When she finally did speak the truth about her own infection at church, she was shunned.

HIV positive after two years of marriage, Ava now has AIDS. In an odd way the disease has given her a voice, one she’d lost after years of submitting to a domineering husband. Through her evangelical ministry, “Heaven in View,” Ava now prays for gays and spreads the word about HIV. She’s particularly concerned about the women who’re living in situations similar to hers—she knows that AIDS today is the No. 1 killer of young black women in the United States.

But she won’t let AIDS get her. She works at taking care of herself. Each morning begins with prayers, meditation and affirmations: “Ava, today you are healthy. Ava, today you don’t have that disease. Ava, today the world is yours.” And whenever she steps out of the house, she says, “I always look at the beauty of the world.”

Still, she gets sick a couple of times a year, and illness can lay her out for months at a time. Ava’s a delicate woman, just 5 foot 3 inches and 114 pounds, and keeping her weight up is a constant problem. An illness can cause her to lose 5 pounds in a week.

Ava’s 46 now and looks forward to 50. She tells her doctors she wants to be the oldest surviving AIDS patient. Wanting to know her grandchildren—to leave them with a memory—keeps her fighting.

She also refuses to let her former husband win. The hurt of his betrayal has become her strength: “It’s like a thorn in my flesh—it keeps me going.”

Though 1,000 people came to see Bernard laid to rest 13 years ago, few today can locate the plot where he’s buried. Ava’s not yet ready to mark his grave with a headstone.

Robert Mains
After hearing he was HIV positive, Robert worried that he’d never have sex again. But not anymore.

No doubt like many people who’ve tested positive for HIV, Robert Mains thinks he knows the exact encounter that changed his life. It happened last September. Having just lost a boyfriend, he was in a “What difference does it make?” kind of mood when he hooked up with a man in a San Francisco club. They didn’t use condoms. Neither bothered to ask about HIV.

“Afterward,” Robert says, “I just had a feeling he was an IV drug user.” Five months later, the test came back positive.

Just 28 then, Robert didn’t fear HIV. He hadn’t seen the ravages of AIDS on earlier generations, and he found sexual freedom in the fact that new medicines meant getting infected doesn’t equate to a death sentence. He wasn’t trying to get infected, he just didn’t think about it much. Robert’s high sexuality and low impulse control led him to some reckless choices: He had sex with strangers, even with men from different countries, and used protection only about half of the time for more than a decade. He’d made it this far, he figured, he wasn’t scared at all.

Today, Robert worries about HIV. When he masturbates, his HIV-infected semen scares him. When he has sex, the virus inhibits him. Whenever he cuts himself, he worries about protecting others.

But his fear immediately after testing positive, that he’d never have sex again, no longer troubles him. Plenty of men are downright eager to have sex with him, and that kind of freaks Robert out. He’s mildly shocked by a cavalier 18-year-old who’s willing to have sex with him, all the while knowing he’s HIV positive. Equally shocking are those men who have proposed “bareback” sex, and then just pulling out as a hedge against infection. Worse are the many men who never mention their status or lie about it. Even more bewildering is the world of “bug chasers” and “gift givers” that Robert’s just starting to hear about. These chasers seek out sex with HIV-positive givers in order to get infected, having somehow turned the reality of becoming infected into an erotic fantasy.

Testing positive may no longer mean certain early death from AIDS, but “it’s a wake-up call.” Robert insists on telling everyone about his HIV before he dates them. He also refuses to take the “HIV+” out of his online profile as friends have advised. “I don’t want to be the person who didn’t tell somebody and the condom broke.”

For HIV-positive people, it’s still possible to be infected with a different strain of the virus through unprotected sex, including a potentially untreatable strain known as a supervirus. So, it’s condoms 100 percent of the time, forever. “It has to be,” Robert says.

Dalene Imgraham
Infected in the 1980s at a shooting gallery in Del Paso Heights, Dalene fought her way back to sobriety

When Dalene Imgraham gave her daughter life, she also delivered a death sentence. The baby was born four months premature and with AIDS. Today, the chances of a child of an HIV-positive mother being born with AIDS are less than 1 percent with early detection. But 12 years ago when Dalene gave birth, the risk ranged between 30 percent and 40 percent.

Today, when she talks about infecting her daughter, Dalene tears up and looks away: “It messes me up—it eats me up on a regular basis—it breaks my heart.”

A permanent reminder is tattooed on the inside of Dalene’s right calf: Her daughter’s name on the red loop of ribbon that’s come to symbolize the AIDS struggle. A son’s name is also tattooed there as a reminder of the cost of addiction. She lost both to social services and adoption. She has two other children, including a 27-year-old son who refuses to believe she’s sick.

A third-generation addict, Dalene was infected at a shooting gallery in Del Paso Heights in the late 1980s. In those days, no one talked about HIV or AIDS. Fellow addicts disappeared for weeks and then showed up again, skinny and drawn. Some just never returned.

Secrets ruled Dalene’s life, as well. When she tested positive, that became a secret. She told no one how she felt—dirty, less than, like a freak—or that she was dying. There was no one to listen anyway. Even later when in recovery group she admitted she’d been infected, she’d say it defiantly, hoping that would keep them away from her. She felt unworthy. Counselors helped her recover a sense of self-esteem and persuaded her of the dangers of keeping secrets. Thinking back to the loneliness of that time, Dalene’s emotions overpower her still today: “I’ll be damned if I’ll let anyone go through that.”

Clean and sober since February 7, 1996, 49-year-old Dalene is active in helping others with HIV/AIDS. She was named the local Sunburst Project’s first HIV Woman of the Year.

Dalene’s T-cells haven’t dipped low enough (below 200) to earn her the AIDS label, but she complains of an array of maladies. She suffers from diabetes, numbness in her hands, stabbing pains in her calves, kidney stones, headaches and night sweats, to mention a few. Whether those are caused by the virus or the 25-plus pills a day she’s taken for more than a dozen years, no one knows.

Her daughter, who just figured out that she has AIDS a year ago, has been off medication for a year and is healthy. Dalene stays involved in her life, encouraged by the adoptive mother who a decade ago convinced her to kick her meth habit. The 12-year-old’s a lively red-headed girl who plays violin, piano, soccer, baseball and dances. She’s “a social butterfly, queen bee of her class.”

And she forgives her mother, though Dalene has yet to forgive herself. “I’m working on it,” she says.

Michael Jentes
A long-term AIDS survivor, Michael is now devoted to preventing the spread of the disease

Michael Jentes shouldn’t be alive. That’s what research had shown for someone infected with HIV two decades ago. That’s what his own experience has shown; he’s lost 65 friends to AIDS. And that’s what doctors told him in 2002 when they diagnosed stage-four anal cancer—there is no stage five.

Twenty years ago when Michael tested positive for the virus, the disease was called GRID, or gay-related immune deficiency, even though AIDS had been defined several years earlier. No matter the name, Michael’s positive test changed his life. He spiraled quickly out of control. “I didn’t care anymore,” he says. “I figured I was going to die anyway.”

Broken-hearted after separating from his partner of many years, Michael moved from Sonoma to San Francisco. There, he traded a sedate middle-class lifestyle for one of bathhouses and drugs. It wasn’t long before he started injecting, and “crystal meth absolutely took control of me.”

Michael returned to his hometown of Sacramento and kept mainlining meth until in 2001—on Valentine’s Day—he put the needle down for the last time. Just a year into his recovery, however, Michael learned of his cancer. Doctors didn’t know if they could save his life. They questioned whether he could survive the additional strain of chemotherapy and radiation on his AIDS-compromised immune system. His T-cell count stood at 44—far below the 500 to 1,600 range required to fight off deadly opportunistic infections and cancers.

In the hospital, he cried, and he bargained: “If there’s a god or a universe, let me live,” he pleaded. “I’ll devote my life to helping others.”

Over the two years it took him to recover from radiation therapy, Michael was nursed back to health by his sister and his best friend. “I can’t explain the pain—it was beyond, beyond,” he says. He swallowed 44 medicines twice a day, walked only with help from a walker and was too weak to lift even a bag of groceries. His 6-foot-1-inch frame carried only 110 pounds.

“My cancer has been in remission since August 2002,” Michael says. “My T-cells are just starting to come back now. My viral load is good. AIDS medication has kept me going—without it, I’d be dead.”

Michael decided that AIDS would either be a crutch or a tool. He chose tool, and he’s spent much of the past three years learning everything he can about the disease. He’s taken the cause to Capitol Hill and every day shares his knowledge and support with strangers over the Internet. He’s become a bit evangelical about it all and is now in training to become a peer counselor at CARES.

Michael also expends tremendous effort taking care of himself: He attends meetings to maintain his recovery, takes classes on managing his anger, meditates and exercises, eats well, and runs straight to triage at the first hint of a cold. There’s also plenty of playtime with his two adopted kittens and long, hot baths.

Michael is one of the epidemic’s growing fraternity of long-term survivors. Today, he’s optimistic about his future—he intends to live to 100. He’s 51 now, so that leaves another 49 years of living to go.

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In 2006, more than 1 million people in the United States are living with HIV/AIDS, and an estimated 40,000 new HIV infections are expected to occur before the end of the year.

In Sacramento, rates of HIV infection among women via heterosexual contact rose from 60 percent in 2002 to 72 percent in 2005.

AIDS is caused by a virus known as human immunodeficiency virus, which destroys the immune system.

HIV/AIDS is preventable: Risky behaviors include engaging in unprotected sex and sharing needles for intravenous drug injection.

Since first identified 25 years ago, AIDS has claimed the lives of more than 22 million people worldwide, including 500,000-plus in the United States, with nearly 2,300 of them residents of the four-county Sacramento region.

For another view of HIV/AIDS in Sacramento, check out the local PBS affiliate’s AIDS at Home program at www.kvie.org.

Today, AIDS is the leading cause of death among black women ages 25 to 44 in the United States.

In Sacramento, rates of HIV infection for men having sex with men rose from 58 percent in 2002 to 65 percent in 2005.

Transmission rates of AIDS to children born to infected mothers was once as high as 30 percent to 40 percent. Today, when infection in a pregnant woman is detected early, transmission to her newborn can be prevented 99 percent of the time.

In Sacramento, rates of HIV infection among both male and female intravenous-drug users declined from 2002 to 2005.

CARES, an HIV/AIDS health center in Sacramento, provides services for an aging population: 55 percent are between the ages of 25 and 44; 42 percent are 45 to 64.

In Sacramento, as across the rest of the nation, minority men and women are disproportionately represented among those diagnosed with HIV and AIDS.

Check out the CARES Web site, www.caresclinic.org/get-tested.php, for a list of clinics where you can receive anonymous or confidential testing for HIV.