Jacqueline Allen found out she was HIV positive at age 22.
Now as a peer counselor and program coordinator with the New Jersey Women and AIDS Network, Allen said she has experienced the stigma of people thinking they could catch the disease just by being in her presence.
Allen was one of four women, and one of two who are HIV positive, who spoke of living with and working in the field of HIV/AIDS, the stigmas associated with the disease and what should be done to prevent infection at the National Latina Health Network's "A Discussion on Women and HIV/AIDS in the 21st Century" last week.
"We don't see the reality as much as we should- hear people that speak about it, their experiences," said panelist Consuelo Bonillas, an assistant professor in the department of health education at Kean University.
Nancy Soto, advisor to the department of Health Office of Women's Health on HIV/AIDS, said when people hear a person is HIV positive, they cannot help but wonder how that person got infected and think somehow that person is at fault.
Patricia Barahona, a Douglass College alumna and public education coordinator for the New Jersey Coalition Against Sexual Assault, said there is also a stigma associated with particular demographics being more at risk for HIV infection.
"I do think people see it as a heterosexual disease and a gay male disease," Barahona said.
The lesbian community is not as encouraged to get tested as the gay male and heterosexual communities are, even though a person participating in any kind of sexual activity is at risk, Barahona said.
"One of the things we can do to change the stigmas about HIV is to start having conversations about it," said event host and Douglass College alumna Patricia Teffenhart-Maikos, program coordinator of the NLHN.
Soto said she believes the stigma will change when society views HIV/AIDS as a disease that [can] affect everyone and when people reconsider their actions.
Teffenhart-Maikos said people should be health leaders in their communities and should get tested. Bonillas agreed that every person should get tested - even those in committed relationships.
"Reality is what reality is - even for a woman who is married to a man," she said. "You're in a monogamous relationship, but you still have to take care of you . . . the only person who is going to take care of you, is you."
Bonillas - also a member of the board of trustees at the Hyacinth AIDS Foundation - described the typical thought process of people who are not getting tested for HIV/AIDS.
"It's there, but it's not here," Bonillas said.
Audience member and sexual health advocate Temi Adegbola, a Livingston College sophomore, said denial is one of the main factors that deters young people from getting tested.
"It's just one of those things you don't want to face," said Rutgers College junior and sexual health advocate Kristen Rescigno.
Soto, who is HIV positive, said many people are also becoming less worried about contracting the virus because those infected with HIV are able to live longer lives.
"Because it has become such a chronic disease, people think you can live with it," Soto said. Yes, you can live with it, but it's going to be a very, very hard life. You need to use protection. One decision can change your life forever."
Barahona said that people should be careful when it comes to sex.
"Sex is good. We want you to have great sex," said Barahona. "But what we're talking about is having consent, having communication, having condoms and having dental dams."
The NJWAN reported that as of 2005, New Jersey ranked fifth in the number of cumulative AIDS cases and third in the number of reported HIV cases among adults and adolescents. The organization also reported that one in every three people living with HIV in New Jersey is female. Minorities accounted for 75 percent of all adults and adolescents living with HIV/AIDS in the state.
"There's something scary going on in our community," said audience member Viktoriya Davydan, external vice president of the Douglass College Governing Association. "The number one killer of black women is HIV/AIDS."
The Foundation for AIDS Research cites a report by the U.S. Centers for Disease Control and Prevention that states blacks make up 12 percent of the country's population, but represent nearly 50 percent of the estimated 1.2 million Americans living with HIV/AIDS.
In 2001-2004, amfAR also found blacks represented 61 percent of people under 25 diagnosed with HIV/AIDS. Black women comprised 67 percent of new AIDS diagnoses among women in 2004, and the rate of AIDS diagnoses for black women was approximately 23 times the rate for white women.
