One of Us


The young mother on the examining room table at Johns Hopkins Hospital was a few years into her diagnosis of HIV and almost 20 years into an inner-city life with few exits. As gynecologist Dr. Jean Anderson checked her for an abnormal pap smear, the teen-ager distracted herself by talking to a staff counselor, another young woman from her side of Baltimore.

Since Hopkins began HIV screening and counseling at its obstetrics clinic five years ago, Dr. Anderson has discovered that her patients talk more freely to peer counselors than they can to her or anyone else in a white coat. And those who are infected also seem more willing to listen to the advice of peers about how to avoid spreading the AIDS virus.

At this exam, the subject was the death of the patient's young son two years before. And the young woman was saying it was probably a good thing he had died.

Why? asked the counselor.

"The patient said, 'Well, I just have this feeling that I'm going to die soon. And if my son had lived, he would be old enough to really know me and to go through a lot of pain over this,' " says Dr. Anderson, recalling the conversation. "And then she said, 'My daughter is young enough that she probably won't remember me that well. She won't have such a hard time.' "

"And the counselor said, 'When do you think you will die?'

"And she said, 'Probably within the next two years.' "

The patient said she was not too scared about dying. She also mentioned she should probably go to church more because she didn't understand the Bible as well as she'd like to.

Dr. Anderson, nationally respected for her work with women with HIV, pauses as she recalls the pathos of this down-to-earth connection.

"It was just extraordinary to me," she says in a soft voice flavored with a Tennessee accent. "Very, very moving. Here was this 19-year- old talking about dying. About losing one child and leaving behind another child. Wondering about spiritual things.

"And I hear things like that all the time."

Although she directs the hospital's program for HIV-infected women, Dr. Anderson says she frequently receives such soul-baring insights because of the presence of peer counselors -- women from similar backgrounds as those who are infected. These counselors, some of whom are former clinic patients themselves, educate patients about their disease, help them change their high-risk behavior and advise them on issues in their daily lives.

Across the country, medical and social workers are recognizing the benefits of using trained peers to help prevent disease and to change the behavior of a broad spectrum of people ranging from elderly Americans struggling to maintain their independence to teen-agers exploring their sexuality.

Now they are testing this method with the growing population of women who are infected with HIV, a disease that has struck at least 58,000 women.

Last year, women accounted for 18 percent of the nation's newly reported AIDS cases -- an 11 percent increase over the past decade, according to the Federal Centers for Disease Control and Prevention in Atlanta.

An unusually high percentage of HIV patients at Hopkins are women -- 30 percent -- and at least four of every 100 women seeking prenatal care at the hospital's obstetrical clinic are infected with the virus.

Listening to a peer

The CDC has chosen Hopkins as the site of its first study of peer counseling of women with HIV. Begun two years ago, the project will ascertain the benefits of using peer education and counseling to change high-risk behavior while also encouraging infected women to get regular health care.

Peer counseling programs at Hopkins and elsewhere suggest such counselors may be more effective in this work than the nurse practitioners and other mid-level health care workers who traditionally educate patients during physical examinations.

"People take advice and information from people that seem more familiar to them, people that they trust," says Dr. Liza Solomon, director of the state's AIDS administration. "If a woman hears something from a woman she respects, she might be more willing to listen to it than if it comes from a supposed expert who might not speak to the circumstances in her life."

Traditional health care workers can be shocked to learn that HIV is not a patient's greatest concern. Often isolated in poor neighborhoods ravaged by violence and drugs, women with HIV tend to be more afraid of homelessness, of not being able to pay their bills. They worry about domestic abuse and about finding dinner for their children.

"My clients know if they get sick, somewhere along the line they will be taken care of," says one peer counselor at Hopkins. "They're more afraid of how people are going to react to them when, and if, they just find out that they're HIV positive."

Because many people assume that infected women were exposed to the disease through prostitition or IV drug use, women known to have HIV are often shunned or abandoned, counselors say. Many have sexual partners who threaten to leave them if they go to a clinic where others may recognize them and cause speculation about their partners.

Women with HIV are especially frightened of stigmatizing their children in day care and at school if their condition became common knowledge.

Because Hopkins is the primary employer as well as medical presence in East Baltimore, many of the patients who seek treatment there are related to hospital employees. Women with HIV risk encountering neighbors whenever they go to the Moore Clinic for AIDS Care. Confidentiality is necessary to insure that women will continue to seek medical help and counseling.

"You can't always guarantee someone anonymity," Dr. Anderson says. "I always cringe when I have to come out to call a patient by name in the waiting room. If I know who they are, I can just say, 'I'm ready for you now.' "

(The peer counselors in this story requested their names not be used in order to protect the confidentiality of their clients. Many women who seek help at Hopkins mention their counselors frequently but have not told their families they are infected.)

Stereotypes fall by the wayside

The women who are treated for HIV at Hopkins defy many of the public's assumptions about the disease. With an average age of 30, most of the patients have children. At least half have never engaged in prostitution or intravenous drug use.

Instead, most women contract the disease from their sexual partners. Over the years she has been treating women with HIV, Dr. Anderson has learned it is very difficult for them to persuade their partners to use condoms. Many men will refuse protection even after they learn their partners are infected.

"In general, there have been anecdotal reports of beatings, of increased domestic violence, just over women requesting their partners use condoms," Dr. Anderson says. "It is absolutely astounding and inexplicable to me."

Peer counselors warn their clients that having unprotected sex can expose them to such other sexually transmitted diseases as herpes and chlamydia. They caution that intercourse with someone who is HIV infected may make their own condition worse if the man has a more aggressive strain of the virus.

They also remind them that they can become pregnant.

Last year, the CDC reported 1,017 cases of pediatric AIDS -- 92 percent of which were transmitted from mother to child during pregnancy, labor and delivery or by breast feeding.

Although the majority of babies born to HIV mothers do not have the disease, the transmission rate can soar as high as 30 percent unless the mother has been taking the drug AZT during her pregnancy. If an infected mother takes AZT, the risk of transmission drops to 8 percent.

Peer counselors meet with all pregnant women at the obstetrical clinic at Hopkins to tell them about the risks they face if they have HIV. After the discussion, approximately 97 percent of the women agree to be tested for the virus.

If a woman discovers she is infected, counselors help her to consider the options of terminating or continuing the pregnancy.

"Most of our clients don't believe in abortion. I say you gotta know what could happen -- good and bad," says one counselor who recently went through the agony of helping a mother decide to terminate life support for her child who died of AIDS.

Before working with clients, peer counselors at Hopkins receive several months of training about all aspects of the disease and its prevention from physicians and nurse practitioners. They also learn counseling skills in listening and communication from social workers and hospital staff members who specialize in health education. And they receive ongoing training from the staff with whom they work.

The success of the peer counseling format, observers say, depends upon patience, time and repetition as well as on one-on-one connections.

"I think we have learned in prevention that telling someone something once is not enough to help you quit smoking or go on a diet and certainly not enough for dangerous behaviors," Dr. Solomon says.

Peer counselors often put in long hours on the job, allowing clients to call them at home when they feel overwhelmed.

Take "Mary," for instance. A drug user for 28 years, Mary entered a program with peer counseling because of the money it offered participants. By the end, however, she had developed such a close relationship with her counselor that she was able to kick drugs.

"Peer counselors don't say, 'I know how you feel,' they say, 'I feel with you,' " Mary says. "At first, I didn't know what this woman wanted from me. She was giving me something I didn't have for myself, namely unconditional love. I was afraid of her. I pushed her a couple of times to see if she was going to back off like everyone else had. I would let her know what I had done the night before to get my drugs."

Mary says she was transformed through her counselor's unshakeable belief in her. She remembers the turning point as the night she decided to operate on herself for a drug-related absess rather than face more lectures from an emergency room staff.

In preparation for the do-it-yourself surgery on her leg, Mary assembled a knife, a pack of razors, gauze, hydrogen peroxide and reached for the phone to call her counselor. She told the woman what she was going to do, pleaded with her to stay on the phone while she did it, and threatened to leave the house if anyone came over to help.

"I just needed to hear her because she was all I had at that moment, she was my hope," Mary says. "So I cut my leg open and drained this infection out of my leg. And I cried, and she cried. And she talked to me. She talked to me until daylight, maybe three or four hours."

Mary cut back on drugs gradually before making the final break with her counselor's help. Now she runs a support group for people who are HIV positive. "It was like I was a weed that was dead and my advocate replanted it," she says. "Now I'm a flower."

Dr. Anderson says peer counseling focuses upon the plight of individual women who have been largely ignored during the AIDS epidemic.

"At first, HIV wasn't even recognized initially as occurring in women," she says. "And since then, most of the interest has been on women only as transmitters of infection -- to men or to children."

Peer counselors, however, are concerned with the improving these women's daily lives, lives that so closely resemble their own.

"We never forget where we came from," one counselor says. "I remember being homeless. I remember being without food. There were a lot of times my life wasn't perfect. And I use the same pattern I used to help myself to help these women improve their situations."

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