Chicago Tribune - August 18, 2004
Connie Lauerman, Tribune staff reporter

But the true extent of the epidemic is not known, because data reported to the federal Centers for Disease Control comes from only 29 states. Chances are the toll is much greater.

At year-end 2003, 19.2 million women worldwide--a number equal to the combined populations of Lon-don, New York and Singapore--were living with HIV/AIDS, almost half of the estimated 40 million adults with the virus, according to the World Health Organization.

In the U.S., heterosexual African-American women are experiencing the greatest increases in AIDS diagnoses--a rate 23 times greater than that of white women, according to the CDC.

In Chicago, the number of AIDS diagnoses has de-clined overall--but not for women. During 1991 to '92, women represented 13 percent of newly diagnosed AIDS cases. Ten years later women accounted for 24 percent of all AIDS diagnoses. The number of Chicago HIV/AIDS cases in Hispanic women rose from 13 percent of all diagnosed Hispanic cases to 16 percent during the same period.

The virus does not discriminate, infecting women from all walks of life and demographic categories.

Still, with the advent of powerful anti-retroviral medications in the mid-1990s, those who seek treatment "are living longer and living well" with HIV, said Dr. Mardge Cohen, founder of the Women and Children HIV program at Cook County's Ruth M. Rothstein Core Center and director of Women's HIV Research.

In a three-part series in WN, reporter Connie Lauerman and photographer Candice C. Cusic put a female face on the epidemic, parting the veil of fear and se-crecy surrounding women and AIDS.

You will meet women who have borne shock, shame and denial and come to terms with their troubled pasts. Even in the shadow of death, they have found a way to bloom--recovering from addiction, coping with the side effects of powerful medication, claiming hard-won self-respect and moving ahead with their lives.

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Cynthia Howard carried a full plate of eggs, sausage and rolls back to the table at an all-you-can-eat restaurant near her Joliet home. Food, she said, patting her rounded belly under a red and yellow sweater, helps absorb the medication she takes.

A sturdy, 35-year-old woman with skin the color of cafe au lait and hair tinted slightly red, Howard might be any young mother out for a break with a friend. But Howard has AIDS, and its demanding presence affects every aspect of her existence.

She often wakes up in the night, afraid of death. By day she copes with the side effects of powerful medications that keep the virus at bay and allow her to live a full life.

She has beaten the odds against her, overcoming the abusive upbringing and violence in her past that led her to take sexual risks--and even interfered with her ability to comply with her medical treatment.

Howard wakes up every morning with a bout of diarrhea, a side effect of the anti-retroviral medications she takes to keep her alive. "It feels like you've emptied out your entire stomach," she said. Sometimes it continues, sporadically, all day.

She takes seven pills for AIDS every night with plenty of food in her stomach. Technically, it's not the protocol for the medication. Some of the pills should be taken on an empty stomach. They also should be taken twice a day. But Howard could not handle the constant nausea and, sometimes, vomiting. Taking all of them at night, she said, allows her to sleep through the nausea.

Howard also takes two antidepressant pills a day, two pills daily for bipolar disorder unrelated to AIDS, plus an antibiotic once a day to ward off pneumocystis cari-nii pneumonia, an infection common to AIDS patients.

There can be other medications as well, depending on what crops up, perhaps a rash that becomes infected or a gynecological problem.

Some days Howard takes as many as 20 pills.

HIV, or human immunodeficiency virus, is a retro-virus that barges into the bloodstream, invading the white blood cells that keep the immune system running and changing the white blood cells' function from normal to making more HIV.

The medications prevent the virus from multiplying and infecting new cells, and minimize opportunistic infections that occur when the immune system is damaged.

In women the most common first opportunistic infection is thrush (Candida Esophagitis). Wasting syndrome and tuberculosis are also common. Once those infections crop up, people progress to a diagnosis of AIDS, or acquired immune deficiency syndrome.

Howard has had difficulty complying with the drug therapy since she was diagnosed with AIDS in 1999. She often filled prescriptions but then did not take them because of the side effects and difficulty accepting her diagnosis.

Denial and drug therapy non-compliance is a common response to an HIV/AIDS diagnosis.

"Women are dealing with self-esteem issues," said Dr. Mardge Cohen, director of the Women and Children's HIV program at Cook County's Ruth M. Rothstein Core Center, an outpatient facility for those with infectious diseases.

"They're dealing with [the belief that] `I've always been dealt a bad hand of cards, why should this be different?'

"Something is still amiss. Women may need a larger support system to help them on a daily basis to keep up with drug therapy."

After trying a lot of drug regimens, Howard finally has a combination and timetable she can tolerate. The medications make her skin break out, but, she asks, "What is more important? My skin or being around to see my kids grow up?"

Howard has two sons, 10 and 3. A 21-year-old daughter now lives on her own.

Secrecy and denial

Howard agreed to talk with a reporter because she wants to do her part to lift the veil of secrecy that surrounds HIV/AIDS.

"Secrecy is certainly an issue for African-American women," said Cathy Christeller, director of Chicago Women's AIDS Project. "These women tend to be more isolated, because they don't know where to turn and they're afraid of being rejected" by family members and a society that stigmatizes those with AIDS.

Mildred Williamson, administrator of the Woodlawn Health Center on the South Side, said the fact that people with HIV can be symptom-free for as long as 10 years contributes to denial and inability to deal with status disclosure.

"I've seen people who tell their family and are warmly embraced, and just the opposite. This notion of fear and rejection is absolutely real."

Howard found out she was HIV-positive when her oldest son was born in 1993. Both she and her baby had the virus. Her son developed AIDS nine months later. Six years later so did Howard.

Her first response to the test results was to want to kill herself. In those days, she said, she was a functional alcoholic and cocaine addict who managed to hold two jobs and deal with her home life. But she went haywire after the HIV diagnosis. "Mentally, spiritually and emotionally I was dying.

"I stopped working. I tried to get so drunk and so high that I hoped it would take me out."

Misconceptions and denial about HIV helped put Howard at risk in the first place. She wanted to believe it was a virus limited to intravenous drug users and white, gay men.

Now she realizes that she "volunteered for AIDS" through her behavior. "I take full responsibility for the part I played."

Howard was particularly vulnerable because she had "a whole chaotic lifestyle" that followed a "traumatic" upbringing.

Born to parents she never knew, at 2, she was adopted by an African-American couple. Her adoptive father admitted that he "didn't really want me," said Howard, who is biracial.

Her adoptive family abused her "physically, sexually and mentally," and twice she was removed from their custody by the state.

"I was so full of anger. Anger toward my biological mother who was supposed to be white, anger toward society, anger toward me."

She had her first child when she was 14. There was a boyfriend who beat her.

Researchers at the Core Center found that sexual abuse and domestic violence often predispose women to risky relationships, increasing the possibility of contracting HIV. Two-thirds of the women treated there have experienced both types of abuse at some points in their lives. Experiencing abuse also is related to not adhering to anti-retroviral medications.

Howard thought she was in a monogamous relationship with the boyfriend who may have brought HIV home to her. But he sold drugs on the side and had been trading drugs for sex with women who prostituted themselves.

"I realize now that deep down I knew he was doing this, but because of lack of self-worth, lack of love for myself, I didn't make him use protection because I thought he was my boyfriend and I didn't have to," Howard said. "When I got pregnant, I knew he was sleeping around and I chose to have unprotected sex with him."

Women, she said, have to "learn to love ourselves enough to take care of ourselves. It's not a fair deal. It's not worth a few moments of pleasure to have a life of pills and illness and worry and doctors."

The couple stayed together for a while after their child was born. Their HIV status was "one big secret." Howard's boyfriend told her not to tell anybody and she felt ashamed anyway.

A turning point

A turning point came in early 1994 when the state removed her newborn son and 11-year-old daughter from her custody on a charge of medical neglect of her son. Soon afterward she reconnected with a case manager she knew when she herself was a ward of the state. The case manager steered Howard to the Core Center, where she took advantage of all the services and support she was offered. She wanted to get her children back, and she did in less than a year.

It took her two years to come to terms with having HIV and longer than that to take action, adhering to medication and going forward.

"I wouldn't wish AIDS on anybody," she said. "You can manage it, but it's work on a daily basis and it can be so overwhelming.

"If I don't take good care of one aspect of my life, everything falls apart. My home falls apart. ... My health falls apart. The addiction part of me wakes up and I'm overeating or overshopping."

Every day Howard needs "a reprieve of some sort," so during each week she juggles an array of activities: HIV/AIDS support group meetings, 12-step group meetings, some time for prayer and meditation, talks with her 12-step sponsor and a session with a therapist. This is in addition to being a mother and wife. Last year she moved from Chicago's West Side to Joliet with her husband, whom she married in 1999, and children to take advantage of a housing program for HIV families, though she said her husband, a drug counselor she met socially, is HIV negative.

The couple have a 3-year-old son who was born without HIV, one of the miracles of anti-retroviral medications.

The likelihood of HIV transmission can be reduced by half if a woman agrees to rapid HIV testing during labor and delivery, receives medication, and if her infant is given medication within 12 to 48 hours of birth.

The Perinatal HIV Prevention Act, signed into law last year, requires that medical personnel offer HIV counseling and testing to all pregnant women and mandates routine HIV testing of newborns. Years of research have shown that most pregnant women will consent to HIV testing, and most are willing to do whatever they can to prevent transmission of HIV to their babies, Cohen said.

Howard's life is "slowly coming back together. It looks like my son, a long-term survivor [at 10], will grow to be a full-grown man," she said.

And she is beginning to feel hopeful, making arrangements to return to college. She dropped out in the mid-1990s when she was studying criminal justice and law enforcement. Now she wants to work as a drug or mental health counselor.

"If someone could have really guided me and helped me realize who I was as a young black woman, I think I would have made better decisions."

Sometimes Howard said, she feels people "expect us to stop being women and become some kind of AIDS entity.

"We are still women. We still want relationships and children. We still want to go to school, and have our own homes and businesses. We want a full life and we deserve to have it."

For now, Howard takes one day at a time. At bedtime, she reviews her accomplishments: taking all her medication, making sure her son took his medication, being the best mother she can be and not using drugs.

"I've learned to love myself in spite of having AIDS," she said. "I have grown up emotionally and spiritually. It's a life lesson--if you learn from it."

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The course of a retrovirus

HIV, or human immunodeficiency virus, is a retrovirus that invades the bloodstream and attacks the white blood cells that keep the immune system running. It changes the function of these white blood cells, known as T-cells, from normal to making more HIV. The virus then returns to the bloodstream to infect more T-cells, and repeats the process.

Once HIV has weakened the immune system and opportunistic infections occur or the T-cell count is low, the infection is designated AIDS, or acquired immune deficiency syndrome, a later stage of HIV.

Anti-retroviral medications generally disrupt the HIV cycle of replication, thus reducing the amount of virus in the blood and delaying the disease's progress.

Most frequently, HIV is transmitted through unprotected sex--vaginal, anal or oral--with an infected man or woman, or being pierced with a needle or sharp object contaminated with HIV-infected blood.

It also can be transmitted through pregnancy, childbirth, breast-feeding, transfusions with infected blood, treatment for certain diseases and transplanted organs.

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