New hope and new struggles in treating AIDS patientsPublished 6:15am Thursday, October 4, 2012
A memorial garden with a statue of an angel overlooks the Pacific, just a few steps away 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, the illness doesn’t typically prove fatal in the U.S. 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 need to takes 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 or anyone impaired by addiction is 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 forget to take their meds sometimes 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, experts say, in addition to kidney and liver damage and dental infections.