In the News

AIDS Activist Lives Life to Fullest

It was 1988 when Lorraine Brown walked into her then 6-year-old daughter's room to find her packing a little suitcase.

The first-grader said she was going away because kids at school kept calling her mother a whore or a junkie, after word spread of Brown's HIV status.

"She didn't know what the words meant, but she knew they were bad and hurtful," said 43-year-old Brown, who at that time had battled AIDS for two years. "She then said she wanted me to make the HIV go away. She couldn't understand why I couldn't fix it."

Seventeen years later, Brown is now known throughout the Valley for championing women and children with HIV through her job as a family advocate for the Maricopa Integrated Health System. She's driven to educate Valley residents about the disease, but especially Arizona's minority women who are many times more likely to contract HIV than White women because of cultural barriers and socioeconomic status.

Nationally, women and girls are the fastest-growing group among the HIV/AIDS population, with Blacks and Latinas accounting for more than 75 percent of all reported HIV infections among women, according to the Centers for Disease Control and Prevention. What's more, women are more vulnerable to HIV infection, which can debilitate a person's immune system and leave them open to life-threatening illnesses. Health officials estimate that male-to-female transmission is twice as likely to occur as female-to-male transmission.

For Latinos, language and culture, in addition to socioeconomic status, often serve as contributing factors, experts say. But the machismo that often permeates minority communities also fuels the problem, with men refusing to acknowledge risky sexual behaviors and women avoiding the subject because they're taught to defer to their husbands.

"That's often a problem in minority cultures where women are raised to abide by their husbands' wishes," said Freddy Román, assistant director for wellness and health promotions for Arizona State University at the Tempe campus. "But not all Latino cultures are the same either, which can make reaching these populations a challenge."

Arizona currently has about 10,200 people living with HIV or AIDS, according to the Arizona Department of Health Services. Most of those infected are men who have sex with men. But the percentage of female cases, especially among minorities, is increasing.

In Arizona, Latinas are more than twice as likely as White women to contract HIV, while Black women are more than 15 times as likely as White women to test HIV positive.

Brown, who's African-American and Puerto Rican, claims she contracted HIV from her then common-law husband. She wouldn't name him, but said he is healthy and hasn't required any HIV-related treatments, she added. Brown also won't identify her children because of the stigma that often surrounds those battling HIV.

"This isn't their fight, so I'd rather leave them out of the public eye," she said.

Little-known disease

In 1986, Brown fell ill with pneumocystis carinii pneumonia, a deadly respiratory condition that then mostly afflicted gay men. The doctors couldn't diagnose what was wrong with her.

"When they ran out of options they tested me for HIV and it came back positive," said Brown, who was living in Tucson. "I was dumbfounded because back then it was known as GRID (gay-related immunodeficiency disease). How could I have a gay disease?"

It's a sentiment often shared by women with HIV because male-to-female intercourse and intravenous drug use are the top forms of transmission for women. Heterosexual contact accounts for more than half of all transmissions.

Since her diagnosis, Brown has been in and out of hospitals battling several illnesses, including additional bouts of pneumocystis, tuberculosis, thrush (a yeast infection of the mouth and tongue), and shingles, an outbreak of rash or blisters accompanied by fever, chills, headache and upset stomach.

"I've been deathly ill more times than I care to remember," Brown said. "But I'm a fighter. I had to fight. I had two little girls."

Brown swiftly fell into the role of activist because early in her illness there were few resources available for women and children, she said.

By the time she moved to Phoenix in 2001, Brown had already gained a reputation as one of the longest-surviving HIV/AIDS patients. Thanks to a multiprong approach, including antiviral drug cocktails, naturopathic medicine such as natural vitamins and supplements, acupuncture and daily meditation, Brown has remained relatively healthy for the past five years. She has a decent T-cell count of about 400 and an undetected HIV viral load.

It didn't take long for Maricopa Integrated Health System to offer Brown a job as a family advocate. Operated by the county, Maricopa Integrated Health System is the primary source for low-income health care in Phoenix. Brown works at the McDowell Health Center for the agency's Ryan White Title IV Program, which offers more than 900 clients testing, counseling, prevention and referral services.

"Women are raised to be the caretakers, so they're less likely to seek out services because it's about taking care of others, not themselves," Brown said. "We need to change that mentality."

Living the struggle

Brown trains peer educators, talks to community groups, churches, support agencies and families to encourage women to get tested and receive the medical care or prevention services they need to remain healthy. She also started an electronic mailing list to spread the word on HIV/AIDS resources that has grown to 450-plus recipients.

"Lorraine is the perfect person for this job because she's lived this struggle and the women know it," said Cheri Tomlinson, Maricopa Integrated Health Systems' grants manager. "The fact that she's been positive for so long is a great symbol of hope. It shows them that you can live a long life if you work to preserve your health."

Mark Green, Brown's naturopathic physician, said she's the perfect patient because she understands the power of positive thinking and how alternative care can boost one's health. Brown accesses her naturopathic services at Body Positive, a non-profit HIV/AIDS research and resource center in Phoenix serving more than 1,700 people annually.

"The mental outlook of a patient has a huge effect on their immune system and their illnesses. Studies have shown that," Green said. "So being committed about remaining healthy and being hands-on about your health care can make all the difference in the world."

A glance at Brown demonstrates as much. Her buzz-cut hairstyle seems to epitomize her no-nonsense approach to tackling her disease, while her regal demeanor and warm smile hint at her inner peace.

She's come a long way from the days when her children were afraid of eating meals with her and Brown had to swallow 730 pills a month.

Today, she experiences joy in the events many people often take for granted: holding hands with her current partner of two years, watching her eldest daughter walk down the wedding aisle, and the sweet scent of her 2-month-old "grandbaby."

"There was a time I wasn't sure I would see my daughters reach adulthood, but look at me now," she says, while shaking her head. "I plan to live to 150."

Still, she's not one to remain complacent because there's much work to be done to assist women with HIV.

"Women always think they've done something wrong," she said. "But it's not about what you did wrong. It's about what you can do to live a healthy long life and ultimately watch your children grow old."

Reprinted from the Arizona Republic.
Written by Carlos Chavez, August 25, 2005
Used with permission. Permission does not imply endorsement.

Last updated on December 3, 2008