The caregivers

SPECIAL REPORT

The fight against HIV/AIDS — 25 years later
By: Kristin Boyd
The physician:

Dr. Ron Nahass, age 49,

Princeton HealthCare System

   Dr. Ron Nahass landed on the frontline of an emerging epidemic when he began practicing in 1982. It was one year after the first case of HIV was diagnosed in the United States, and the young physician had decided to specialize in infectious diseases.
   "In the early 1980s, a lot of young men in their 20s were dying, and we didn’t know what from," he said. "It went from an unknown cause to being recognized as a virus."
   For nearly 25 years, he has studied the inner workings of HIV/AIDS, first as director of clinical research at the AIDS Clinical Trials Group in New Brunswick and now within his private practice. In that time, he said, the disease has shifted from a "death sentence" to a "manageable chronic disease."
   "It’s rewarding to be able to help people get past the old understandings of HIV, which most have associated with a terminal diagnosis," he said. "… In the early stages, all you could do was hold hands and comfort families. Now, it’s getting patients to understand if they take their medications, they can live a normal life."
• Princeton HealthCare System: (609) 497-4000; www.princetonhcs.org.
The case manager:

Joe Sirak, 44, director,

Case Management

and Outreach,

Mercer Area

Early Intervention Services,

Ewing
   Every morning, Joe Sirak heads to work and readies for battle with a double-headed monster: flat funding and stigma.
   "Before, we were treating four patients for every dollar. Now, we’re treating 10," said Mr. Sirak, director of Case Management and Outreach at Mercer Area Early Intervention Services in Ewing, which offers counseling, prevention resources, HIV health care and free HIV testing. "We can try to work miracles, but the magic wand is starting to smoke."
   Coaxing HIV-infected residents out of the shadows presents another challenge, said Mr. Sirak, also the former director of the now-defunct Mercer County HIV Consortium.
   "We still have HIV infection happening at the same rate as early on because of the stigma (of HIV/AIDS)," he said. "It keeps people from getting tested, and it keeps people at risk."
   Mr. Sirak said he’ll continue fighting, even when the task seems like a lost cause — because patients benefit when progress is made.
   "The people who we serve are entitled to the best care we can give and they deserve to be treated with dignity," he said.
   "Everyone is somebody’s mother, somebody’s son, somebody’s daughter, and you don’t disrespect that."
• Mercer Area Early Intervention Services, Ewing: (609) 538-0025.
The research assistant:

Cole Maloney, 25,

New Brunswick
   Cole Maloney, like others his age, first learned about HIV and AIDS from cable TV.
   He watched "Blood Brothers," the story of Joey DiPaolo, a Brooklyn boy who contracted HIV from a blood transfusion, on HBO. Then, with a click of the remote, he met Pedro Zamora, an HIV-infected man cast for MTV’s "Real World: San Francisco."
   Those two images remain with him, but Mr. Maloney’s understanding of HIV is no longer filtered through the television screen. He comes face-to-face with the disease every day.
   As a research assistant for the HIV Health Services Planning Council of Middlesex, Somerset and Hunterdon Counties, Mr. Maloney is largely responsible for interviewing HIV and AIDS patients about the services they need access to, whether transportation, counseling or dental procedures.
   "They have the courage and determination to not let this affect their lives," he said. "The ability to be able to do this work and help people, it’s definitely rewarding."
   In his personal life, Mr. Maloney strives to be a portal of information for his peers.
   "This is a problem, and you can’t just kick it under the rug," he said. "Everyone needs to make sure they’re aware of what’s going on. Go out and get informed. That’s really the only way we can combat this."
• HIV Health Services Planning Council of Middlesex, Somerset and Hunterdon Counties, New Brunswick: (732) 445-0512, ext. 107, www.mshema.org.
The social worker:

Bobbie Feuerlicht, 71,

East Brunswick
   When the Visiting Nurse Association of Central Jersey received its first wave of HIV/AIDS clients in 1989, employees erred on the side of caution, Bobbie Feuerlicht remembered.
   "In the beginning, it was a little frightening," said Ms. Feuerlicht, who was a case manager at the time, but now oversees the agency’s North Brunswick office. "We had heard so many stories about how this disease was transmittable. We went out overly cautious. The VNA gave us masks and gloves."
   Ms. Feuerlicht said she tossed her mask and gloves after shaking hands with an HIV-infected patient.
   "I realized we didn’t have to be frightened by this," she said. "They were very vulnerable people who needed our care and help. After that, I was never worried about the disease being transmitted to me."
   More than 15 years later, Ms. Feuerlicht still offers gentle gestures — a handshake, a hug, a soft pat on the back.
   "AIDS did not go away, even though the public concept now is that it’s a chronic disease. We still see people dying every day," she said, pausing. "But I don’t care what the illness is. Touch is so important."
• Visiting Nurse Association of Central Jersey, North Brunswick: (800) 862-3330; www.vnacj.org
The health center:

HiTOPS, Princeton
   With sports magazines strewn across a coffee table and funky posters taped to the wall, the HiTOPS Health Center in Princeton looks more like a teenager’s bedroom than a health clinic. Luckily, that’s the point.
   The laid-back environment makes both teens — and sometimes their parents —feel more comfortable during visits, said Sandy Friedman, director of health services. When teens are at ease, she added, they’re more likely to open up and ask questions, particularly about sexually transmitted infections like HIV/AIDS.
   "We want to provide young people with access to information and resources so they can make responsible decisions and have bright futures," said Lori Heninger, executive director. "Our kids are motivated to learn how to be health-literate."
   The health center offers comprehensive resources, including free, confidential HIV testing, stress management and adolescent support groups.
   "We don’t just address sex," Ms. Friedman said, adding parents can call for information as well. "We deal with the whole person."
• HiTOPS Inc., Teen Health and Educational Center, Princeton: (609) 683-5155; www.hitops.org.
The foundation:

Hyacinth AIDS Foundation,

New Brunswick
   Riki Jacobs, executive director of the Hyacinth AIDS Foundation, has faced the same challenge for more than a decade: How can her staff convince residents to undergo HIV testing when they face being ostracized, judged or even shunned?
   "I worry about all the folks who are not visible," Ms. Jacobs said. "HIV makes people want to hide."
   The Hyacinth AIDS Foundation has been a safe haven for HIV-infected residents since its founding in 1985. It is New Jersey’s first and largest AIDS organization, with offices in New Brunswick, Trenton, Jersey City, Newark, Paterson and North Plainfield.
   The foundation started with a group of volunteers who offered support group services and eventually began to help HIV patients with basic needs, like supermarket shopping, laundry and transportation, Ms. Jacobs said.
   The network has since grown into an essential nonprofit agency, providing comprehensive services for people living with HIV, advocating on their behalf and pushing for improved public health policies.
   "This is a complex condition," Ms. Jacobs said. "We see the big picture. We have been able to keep educating and creating services that make sense. …We are a vital and dynamic organization that takes care of people."
   Still, smashing the stigma associated with HIV continues to present a challenge both for the foundation and the people it serves.
   "We have some very smart and committed people who’ve worked here for a long time and are not letting go until we get it right," Ms. Jacobs said.
• Hyacinth AIDS Foundation, New Brunswick: (732) 246-0204, www.hyacinth.org.
Other resources
   • Centers for Disease Control and Prevention, www.cdc.gov;
   • National HIV Testing Resources: (800) 232-4636; www.hivtest.org;
   • New Jersey AIDS/STD Hotline: (800) 624-2377;
   • New Jersey Department of Health and Senior Services, Division of HIV/AIDS Services, Trenton: (609) 984-5940; www.state.nj.us/health/aids;
   • New Jersey Women and AIDS Network, New Brunswick: (732) 846-4462; www.njwan.org;
   • Princeton AIDS Initiative at Princeton University: www.wws.princeton.edu/pai/people.html;
   • World AIDS Day: www.worldaidsday.org