HIV clients leading long, productive lives

Survival rates have vastly improved since the early years

Observances of World AIDS Day in Hawaii Friday will have special meaning for Rommel Marcelino, 41, and Jaimie Kahale, 42.

They are among an estimated 2,300 to 3,200 isle residents who have the human immunodeficiency virus that causes AIDS.

The HIV/AIDS epidemic in Hawaii » An estimated 2,300-3,200 residents are HIV positive. » From 1983 to June 30 this year, 2,884 AIDS cases were reported. » Ninety-six new AIDS cases were reported from July 2005 to June, with males accounting for 89 percent. » Of all AIDS cases reported to June 30 this year, 27 percent were among Asians and Pacific Islanders. » Only 7 percent of reported AIDS cases are injection drug users, a low rate attributed partly to the statewide needle exchange program, which began in 1990. Source: STD/AIDS Prevention Branch, state Department of Health AIDS elsewhere In the nation » About 40,000 new infections occur annually. » An estimated 1 million people are living with HIV/AIDS, and an estimated 250,000 do not know they are infected. » AIDS is the fifth leading cause of death among people age 25-44 in the U.S., but more people (an estimated 415,000) are living with the virus than ever before. Internationally » An estimated 4.1 million people became infected with HIV last year. » 38.6 million people are estimated to be living with HIV/AIDS around the world, and about half are women. » AIDS caused an estimated 2.8 million deaths in 2005. Source: STD/AIDS Prevention Branch, state Department of Health

Marcelino learned he had HIV at age 18 in San Diego. He said he had had sex with men and got tested because he was planning to be married. "When I found out, when I told my fiancee, to this day we're best friends. She can't thank me enough for protecting her."

Kahale and her two children were tested for HIV about 16 years ago after her husband became sick and was diagnosed with the disease. He did not know he had it until then, she said.

"When they looked back, when they looked at risk behavior, it was probably anywhere from eight to 10 years previous to him being sick," she said. "It was either through unprotected sex or an IV drug needle."

Their children, now 20 and 16, were negative, but she was positive. Her husband died about four years later.

Marcelino and Kahale work at the Life Foundation, the oldest and largest Hawaii organization providing services to residents with HIV and AIDS. They started as clients and volunteers.

Marcelino, a case manager's assistant, is attending Kapiolani Community College with hopes of getting a sociology degree to become a case manager. Kahale works in the Life Foundation's prevention department.

The two, in separate interviews, noted many changes over the years in treatment of the virus.

"Basically, back then everybody was dropping like flies," Marcelino said. "It was really a scary time."

He came to Hawaii in 1991 "to start my life over again," and "everything pretty much fell in place for me."

He said he did not start taking medicines until 15 years after his diagnosis. "I can remember taking 24 or 25 pills. I think it was even 30 at the time. I just couldn't deal with that."

With newer medicines, he now takes five in the morning and four at night, as well as vitamins, he said. "I feel awesome and I look great," he added, noting he recently had facial surgery.

Marcelino said he has "always had a happy-go-lucky attitude about life." A positive attitude is essential, he said, advising others, "Simplify your surroundings, and when you find yourself bored, get up and do something positive and creative."

Kahale said she is "doing pretty good overall" but recently started taking medicines after 4 1/2 years without them because of continual sinus and ear infections and stress after her grandfather died.

She took medicines for seven years before the break, but they were no longer working. The doctors thought she might have started taking medicines too early, and told her she could stop taking them and monitor herself, she said.

"My hope was to buy six months of time for new medicines with less side effects. I ended up with 4 1/2 years when I was off the medicines."

Treatment protocols had changed in the meantime, she said.

"In the beginning you be aggressive and you hit hard, fast. But because we know the long-term effects of drugs and we know they work much better in combination, we're not as aggressive in treating so quickly."

With improved drugs extending lives of HIVAIDS patients, some complacency is developing, Kahale said. "Some people are saying, 'Oh, well, there's drugs; it's not a death sentence anymore.'"

People know about the disease and they know the risks but feel, "Oh, well, it doesn't happen as much," she said.

She said her department focuses on prevention because "just educating people doesn't change behavior. The same amount of people are becoming infected. We feel prevention does work. It has to be complemented with awareness and anti-stigma education."

Rapid on-the-spot testing, held up by the state Health Department's administrative rules process, would be a big boost to prevention, Kahale said.

World AIDS Day, which began in 1988, is the only international day of coordinated action to address the epidemic, still spreading worldwide, said Nancy Kern, HIVSTD prevention coordinator in the Health Department.

"It is an opportunity for residents of Hawaii to learn how the epidemic affects not only people living in countries abroad hardest hit by this disease, but also how our friends, neighbors and co-workers right here in Hawaii are impacted."

Hawaii's theme for this year's World AIDS Day is "HIV in Hawaii: Local People, Local Stories," which is the title of a film produced by the Department of Education to increase awareness of HIV-positive isle residents.

Featured are Paul Kaleolani Smith, Kahale and her sons, Brandon and Nainoa.

Kern said the film "has a lot of emotional impact." It is hoped the real stories will help to increase respect and compassion for HIV-positive residents, she said, adding, "Twenty-four years have passed since HIV was identified, and HIV-related discrimination and prejudice continue in Hawaii and around the world."

The film is a resource for health teachers and others in local schools, and for agencies involved in HIVAIDS prevention or care.