SPECIAL REPORT
The fight against HIV/AIDS — 25 years later
By: Kristin Boyd
The Name Keeper:
Maria Betters,
The NAMES Project,
Central New Jersey Chapter,
North Brunswick
Maria Betters sat in small New Brunswick restaurant, her eyes welling with tears as she talked about the Central Jersey AIDS Memorial Quilt. The panels, she said, are her babies, and she protects them like a mother guarding her newborn child.
"It’s almost a sacred thing, not to sound corny," said Ms. Betters, chapter chair for the NAMES Project Foundation and AIDS Memorial Quilt. "But these are lives. They’re no different than the lives that are around the corner in the cemetery. The quilt just brings it closer to you."
Each section of the Central Jersey AIDS Memorial Quilt spans 12-feet-by-12-feet. Ms. Betters cares for 45 sections, many of which have been displayed at churches, libraries, schools and businesses throughout the state.
"You have to touch it to really understand," Ms. Betters said. "It means so much more when you read the name and touch that panel. You see that person’s life."
More than a decade after first seeing the quilt at a charity softball game, Ms. Betters has devoted herself to the NAMES Project. She wants to ensure the names and stories patched together on the quilt are never forgotten.
"Those are my babies," she said. "I owe them at least that."
NAMES Project Foundation/AIDS Memorial Quilt, Central New Jersey Chapter, New Brunswick: (732) 249-3933; www.aidsquilt-nj.org; ww.aidsquilt.org.
The fundraiser:
New Jersey AIDS Partnership,
Lawrence
New Jersey ranks fifth in the country in the number of reported HIV/AIDS cases, said Marcia Harman, project coordinator for the New Jersey AIDS Partnership. That statistic follows her as she moves through her day.
"The more you become involved, the more you realize the toll HIV has taken," she said.
The New Jersey AIDS Partnership is one of 29 such partnerships that make up the National AIDS Fund. The partnerships work on a local level to address HIV/AIDS-related issues, including prevention, education, counseling and medical treatment.
Private and corporate sources donate funding to the New Jersey AIDS Partnership, which then provides about 20 annual grants to local programs. The selected programs provide some type of HIV/AIDS education, care or treatment services.
"Each year we have more of an impact," Ms. Harman said. "Certainly, I wish we could raise more money." However, doing so presents a continual challenge, especially as other global concerns such as Darfur and the Iraq war emerge, she said.
"HIV hit with such force. It was so in your face in the 1980s, when people were always dying," she said. "AIDS is not viewed as the same urgent problem these days because people are living longer. But not everyone lives as long or as healthfully as a Magic Johnson (retired basketball star) does."
New Jersey AIDS Partnership, Lawrence: (609) 219-1800; www.pacf.org/aids.html.
The director:
Chavonne Lenoir, 29,
Director of TeenPEP,
Princeton
Chavonne Lenoir listened as an African-American woman described contracting HIV from her husband, an intravenous drug user. Ms. Lenoir was in high school, and the woman was part of a video about HIV.
"She stuck with me the most," Ms. Lenoir said. "I could relate to her."
When teens find someone they can relate to, they start getting serious about protecting themselves from HIV, said Ms. Lenoir, director of TeenPEP, a peer sexual health education program.
Implemented in 48 high schools statewide, TeenPEP is sponsored by the state Department of Health and Senior Services, the Princeton Center for Leadership Training and HiTOPS. The program offers resources and open dialogue, allowing teens to make responsible sexual health decisions.
Throughout the school year, TeenPEP’s peer leaders, chosen by school advisers and trained, work to personalize HIV/AIDS through interactive skits, workshops and activities.
"Teens may think they know what they need to know, but they’re still surprised at what they learn," Ms. Lenoir said. "We try to bring it home and let them know it doesn’t matter what your age or your color or how smart you are," she said.
"If you’re doing the things that are risky, you can be at risk."
TeenPEP, Princeton Center for Leadership Training, Princeton: (609) 252-9300, www.princetonleadership.org/teenpep.html.
The teenagers:
HiTOPS Peer Educators,
Princeton and South Brunswick
These are the teens who’ve never known the world without HIV or AIDS. They wear their red ribbons like badges of honor, and many can rattle off the lyrics from "Rent" without missing a beat or describe a Keith Haring painting from memory.
"HIV doesn’t discriminate," said peer educator Shamika Boswell, 17, a senior at South Brunswick High School. "It’s sad there’s no cure for it."
"That makes what we’re doing even more important," added peer educator Rey Quiles, 17, a senior at Princeton High School. "Until there’s a cure, we have to let people know how they can protect themselves."
The peer educators are members of the HiTOPS Teen Council, which leads workshops on sexual health, including pregnancy prevention, homophobia reduction and HIV/AIDS. The teens, all high school seniors, are trained in leadership and sexuality issues. They use skits and activities to dispel myths, raise awareness and prompt conversation. Their motto is: "It’s not who you are, but what you do."
Ms. Boswell and Mr. Quiles passed along the motto to a group of middle-school boys who participated in a recent HiTOPS workshop at the Princeton Public Library. The boys nodded in agreement. They got it.
"I feel like more than a high school senior," said peer educator Esther Lerner, 17, as the room emptied. "I feel like I’m really making a difference."
HiTOPS, Inc., Teen Health and Educational Center, Princeton: (609) 683-5155, www.hitops.org.
The role players:
SHADES, Rutgers University,
New Brunswick
Francesca Maresca grew up in the early 1980s, a time when the mention of HIV sparked fear and panic. "I remember people being petrified that they would catch it by sitting next to someone," the 30-something said.
That fear has since lessened. But now apathy is setting in, particularly among young adults, said Ms. Maresca, producer for SHADES, an interactive theater group at Rutgers University.
"These kids know people who have HIV, but they don’t know someone who has died from AIDS," she said. "They think, ‘Oh, it’s not going to kill you right away. There’s medicine now. You can live with it.’"
Members of SHADES Student Health Advocates Developing Educational Scenarios write and perform skits about body image, racism, alcohol and HIV-related issues.
"SHADES gives people that safe place to talk," said Ms. Maresca, also the coordinator of health promotion at Rutgers.
"We try to explore all facets of how this disease is really manifesting itself. There is a sense of apathy about it, and I don’t know how to break through. But it doesn’t mean you stop trying."
SHADES Student Health Advocates Developing Educational Scenarios, Rutgers University, New Brunswick: (732) 932-7402, ext. 272, http://health.rutgers.edu.