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Institute on Urban Health Research - Saving Madeline Article

Saving Madeline

Article from HIV Conference in City Weekly section of Boston Globe (4/27/03)

As funding is cut, rising number of women with AIDS try to stay afloat

By Jeff Lemberg, Globe Correspondent, 4/27/2003

Twelve pills and three bottles of baby formula a day. They are the onlyconstants these days for Madeline Gonzalez, a single mother with HIV.

Unemployed and dependent on state welfare, Gonzalez, 30, spends every day caring for her 11-month-old son, Robert, and counting the minutes until his father is released from prison. Tucked away in a small Section 8-subsidized apartment on the Cambridge-Medford line, she is as invisible as her disease, which she said she acquired through unprotected sex with a previous boyfriend. But for one Wednesday afternoon earlier this month, at the John F. Kennedy Library and Museum in Boston, stories like Gonzalez's took center stage. At the Lemuel Shattuck Hospital's seventh annual HIV conference, the spotlight was on women like Gonzalez -- minorities who are young, poor, not college educated. They are the fastest-growing population with HIV. "The number of women who are getting HIV is going up substantially, and the number of women reported to be at risk through heterosexual sex is also increasing," said Dr. Alfred DeMaria Jr., assistant commissioner at the Massachusetts Department of Public Health's Bureau of Communicable Disease Control. "Clearly we're not getting the message out effectively anymore," he added. "Maybe it's message fatigue.... Young people don't know anyone who has HIV, and so they don't think about the risks." According to a December report by the Massachusetts Department of Publicn Health, the number of HIV/AIDS cases reached its highest level in state history last year, with slightly more than 14,000 reported. Of those, 28 percent are women - more than twice the percentage of a decade ago. Yet the number that has Dr. Hortensia Amaro most concerned is the percentage of minority women, both in Boston and beyond, who are becoming infected. African-Americans and Hispanics make up 82 percent of all women infected with HIV/AIDS in Boston (796 out of 972, according to the state Department of Public Health), even though they account for just 39 percent of the city's female population. Comparatively, black and Hispanic men, 35 percent of the population, account for 56 percent of those infected in the city. It's a trend common throughout the country, says Amaro, director of the Institute on Urban Health Research at Northeastern University. In a 2001 report by the Centers for Disease Control in Atlanta, African-American women represented 64 percent of all newly reported female AIDS cases in the United States, even though they accounted for just 15 percent of the US female population. In a study released last month, more than 90 percent of HIV-positive women in New York state were black or Hispanic. Amaro says approximately 66 percent of all US women diagnosed with the disease in 2001 acquired it through heterosexual sex, with 32 percent from intravenous drug use. Factors such as gender and cultural roles, histories of mental illness and physical abuse, and a lack of proper health care and educational opportunities are responsible for the growing numbers of women with HIV, she says. Madeline Gonzalez's life doesn't fit neatly into any one of those categories.

Born and raised in Brighton, Gonzalez was taken from her home at age 13, in part, she says, because of misbehavior and her mother's neglect. Gonzalez spent the next year in and out of four foster homes, then three years at the Everett House in Dorchester, a group home for girls with chronic behavior problems. Gonzalez quickly began a life of promiscuity and drugs. She became pregnant at the age of 17, then again five years later. In both cases the state stepped in and took the children away because Gonzalez -- a homeless high school dropout with a cocaine habit -- was deemed an unfit parent. Her mother currently holds custody of the oldest child, now 12, while the other child, who was born with Down syndrome, was put up for adoption at age 4. Two miscarriages and the loss of countless friends and family members to AIDS followed. Gonzalez says she acquired HIV from a boyfriend who had promised her that he was not infected. "People told me he had HIV, but I didn't believe it," she says. "He was so handsome and really, really healthy, I just thought they were jealous of me. I trusted him. I told him, `I couldn't care less if you have it. I just want to protect myself.' I couldn't believe he lied to me." Soon after she was told she tested positive for HIV on June 11, 1999 (''You never forget the exact day,'' she says), Gonzalez began using heroin. She eventually entered a rehab program for women at the Latinas y Ninos Center in Roxbury, then got pregnant again in August 2001. Of that night and of her boyfriend, Tony, she said: "It had been a long time since either of us were intimate with someone, and neither of us were about to go to Store24 at 3 in the morning." Gonzalez says her son and her boyfriend have repeatedly tested negative for HIV. "Tony knew about my health, and he didn't care,'' says Gonzalez of her boyfriend, who has been incarcerated at the Suffolk County House of Corrections since October 2001. Gonzalez says he was sent to jail for "something to do with drugs, although I'm not really sure and I don't want to know,'' and that he is to be released in late May. (He was convicted of two counts of drug possession with the intent to sell, including one count in a school zone). While the story of Gonzalez's life is filled with more tragedy than triumph, it is hardly unique. With the number of minority women acquiring HIV through heterosexual sex, many in the health care industry are calling on state leaders to increase funding for educational opportunities in inner-city communities. Yet in Boston, funding seems to be going the other way. This past February, the Boston public school system cut funding for the Boston Living Center's Positive Educators Reaching Youth program, in which people with HIV visit middle schools and high schools to talk to students about their lives. Because of a state deficit of nearly $3 billion this fiscal year, the Boston school system was forced to cut $120 million from its budget. "It was helpful to have people go into the schools and talk about the disease," says David Hough, spokesman for the Boston Living Center, a membership-based service organization for those living with HIV and AIDS. "To say 'Hi, and this is how I became positive, and this is how my life is now,' is so important. Maybe there are some kids who will say, 'Wow, this person's life was a lot like mine now, and maybe I should look at what I'm doing.' " According to Amaro, one of the main values of AIDS education is to deconstruct cultural norms that put minority women at risk. "It is important to consider that gender roles vary across cultures, and these roles have been found to impact HIV risk behavior," Amaro said in her HIV conference presentation. ''So we can't just work with women. We really have to do much more work in intervention programs for heterosexual men. "Among Latinos, if the men hold more traditional beliefs in the role of men, they're going to hold more power in the relationship," she later said. "The decision of condom use is largely about power and who makes decisions." Gonzalez says she is confident she will live at least 30 more years if she continues to take her medication regularly, but admits to often feeling overwhelmed by her situation. What makes her feel better, she says, is sharing her story with the hope that other women will avoid the many mistakes she made. "When I contracted the virus, I was so closed-minded about getting it," said Gonzalez, her son laughing and bouncing on her lap. "But it's so possible. Like they say, HIV does not discriminate."

This story ran on page CI1 of the Boston Globe on 4/27/2003.

Copyright 2003 Globe Newspaper Company.

Stanley M. Slotnick
Director of Communications
Lemuel Shattuck Hospital
170 Morton Street
Jamaica Plain, MA 02130

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