A memorial garden with a statue of an angel overlooks the Pacific, just a few steps from the former Boom Boom Room, Laguna Beach’s legendary gay nightclub. Scattered between the stepping-stones are tributes to lives lost to AIDS: an empty champagne bottle, a picture of a young man, a candle.
Thirty years after it was first discovered, HIV-AIDS remains a scourge that kills nearly 2 million people each year, mainly in the developing world. But patients lucky enough to have access to powerful new anti-viral medications are no longer facing a guaranteed death sentence.
Still, not dying from a disease is no guarantee of living with it well. Caregivers and patients in Orange County say that staying healthy in this new era of AIDS has proven to be challenging.
Younger patients don’t always take their medicines reliably, which can trigger serious health ramifications, while aging patients grapple with compromised immune systems, confusing medicines, social isolation and in some cases, profound trauma.
Orange County’s AIDS Epicenter
Nowhere is this new reality more evident than in Laguna Beach. Though long past its heyday as a glamorous gay haven, the city remains ground zero for AIDS in Orange County.
Laguna Beach claims the county’s highest rate of HIV-AIDS patients by far with 18 people for every 1,000 residents, more than four times Santa Ana’s rate. In 1989, Laguna Beach was the AIDS capital of the nation as measured by incidence rate, and death was a constant presence.
These days in the U.S., the illness typically doesn’t prove fatal unless people don’t know they have it or don’t adhere to their medical regimens, said Dr. Korey Jorgensen, an HIV disease specialist at the Laguna Beach Community Clinic.
But any patient who tests positive for the virus is encouraged to go on HIV-suppressing medicines right away, Jorgensen said. Consistent use of the meds can lower the virus to nearly undetectable levels, allowing patients to live mostly normally.
A Strict Regimen
Commitment is key, because patients must take medicines every day and report to doctors for the rest of their lives, Jorgensen said. When patients skip their pills, the virus develops a resistance to the medicine, and a new regimen is necessary, experts say.
Still, patients often fall off the wagon. Some simply neglect their own care or feel healthy enough to discontinue their regimens. Homeless patients and those impaired by drug addiction are also vulnerable to adherence problems, he said. Cost is not typically an issue, because poor patients can receive coverage under the Ryan White CARE Act.
Young people who didn’t live through the frightening early years of the illness can become lax, said Jorgensen, who has treated AIDS patients for 30 years.
“I’ve seen lots of people die of it — I’m 68,” Jorgensen said. “But for a 20-year-old who has never known anybody with HIV or AIDS, they have an unreasonable expectation that it’s not a big deal. Of course it’s a big deal. You’ve got to get medical care regularly for the rest of your life. You’re going to have to take medicine and you’re going to have side effects.”
Ill effects of the medicine were a problem for Stephen Williams, 29, who has HIV and runs a support group at The Center OC in Santa Ana, which serves the gay, lesbian and transgender community. Allergic to his first medicine and nauseated by his second one, Williams is now in his third regimen, which is going smoothly. But he and some of the young men in his group sometimes forget to take their meds and don’t look forward to a lifetime of it.
“I have skipped, I’m not going to lie,” Williams said.
Longer-term side effects include cardiovascular disease, high cholesterol and thinning of bones in addition to kidney and liver damage and dental infections, experts say,
A 52-year-old longtime patient from North Orange County, who asked not to be identified, said the medicines have caused her and her husband, also HIV positive, a variety of problems over the years. These include high cholesterol, neuropathy, nightmares, constipation and redistribution of body fat to the back of the neck and arms.
Further, HIV accelerates aging, she said, and she believes her longevity is compromised. But she also is grateful to be otherwise healthy and alive 19 years since testing positive. She feared at one time that she might die before her son was old enough to remember her.
Another challenge to healthy living with HIV or AIDS is managing medicines.
While younger patients sometimes take a pill a day, older patients often have far more complicated regimens or “cocktails,” to which they add meds to combat conditions such as high cholesterol, hepatitis and depression. Recreational drugs as well as supplements also can cause harmful mixes.
“I’ve seen up to 30 to 40 pills a day,” said pharmacist Michelle Sherman at Laguna Drug. She specializes in serving HIV and AIDS patients and helps manage the meds of about 400 patients.
“Patients get confused or take the wrong medication, or the doctor changed medication and they don’t realize it. They forget what they’ve been told by different doctors: the HIV doctor, the psychiatrist, the cardiologist. If they don’t go to a pharmacist who knows all about these prescriptions, someone can get killed,” Sherman said.
Profound Losses
Beyond medical needs, older HIV and AIDS patients struggle with loneliness and loss. By 1990, AIDS was the leading cause of death among men in alifornia 25 to 44 years old. The HIV-positive survivors of the disease’s first two decades witnessed the demise of countless friends and lovers in addition to facing their own mortality.
“How do you start thinking about your future when you’ve already given it up?” said Bruce Vancil of Shanti Orange County, which assists HIV and AIDS patients. “Some people sold their life insurance policies, some engaged in risky lifestyles. They figured, why worry about it? People have lost so many friends. They’ve watched entire communities decimated. The people left are the odd duck out.”
In Laguna Beach, half of the people living with HIV or AIDS are over 50, and many are disabled and need assistance with housing, transportation and food. Meanwhile, experts are concerned about a rise in the infection rate among young people for lack of regular HIV testing and education.
“Testing needs to become routine,” said Philip Yager, CEO of the AIDS Services Foundation of Orange County. He said research shows that a third of doctors in the county are reluctant to test and to talk to patients about sex.
Misconceptions about transmission are common, experts say. For example, some believe that if an HIV patient takes medicines to lower his viral presence to undetectable levels, he can’t pass it on to a partner. But experts say the virus can hide in certain cells and still infect others.
The potential for infection is enhanced by popular phone apps like Grindr, which allow young men to find sexual partners instantly in their vicinity. And improbable as it might seem, some young gay men, called “bug catchers,” seek to contract the virus, .
Bug catchers are not an urban myth, said Williams, who tested positive five years ago when he was 24 . “It’s true. I had a friend who asked me to have sex with him so he could get it [HIV]. … I told him he needs to go see a psychiatrist.”
The friend thought if he got the virus he could have unsafe sex with other HIV-positive men. But experts say that someone with HIV can still contract other forms of the virus in unprotected sex with another HIV-positive partner.
Williams encourages the members of his support group to use protection. But he also offers a message of hope: “I tell newly diagnosed patients that it’s not the end. Don’t give up. Live your life. Don’t let this become your life. Let it be a part of your life.”
Amy DePaul is a Voice of OC contributing writer and lecturer in the UC Irvine literary journalism program. You can reach her directly at depaula@uci.edu