When the high cost of antiviral therapy prevents thousands of HIV/AIDS patients from obtaining these drugs, it is often impossible to understand the other, less tangible, obstacles that may keep people in need away from doctors' office doors. The cost of care may be a basic, ongoing barrier to treatment. But secrecy surrounding sexual behavior (especially among husbands and wives), fears and superstitions about taking prescription drugs, and long-standing patterns of who gets care and who gives it in African-American and Latino families are often the first, and most resistant barriers to effective treatment for black and Latina women. Even when women work hard to protect themselves, the nuances of culture may win out.

Sarafina Winston*, a 35-year-old mother of four, knew all she needed to know about HIV/AIDS transmission and had no problem finding capable doctors near her Bronx, New York, home. But she could not control a husband driven by pride, rather than propriety, or her fears of traditional western medicine.

"I knew that my husband had a history of drug use and that meant that I was at risk for AIDS," says Sarafina. "So, I asked him to use a condom to help protect me, just in case he was sick, especially since I had to take care of our kids. But his response was, 'Why would you think I would need a condom. Do you think I have something?' Basically, he refused. About a year later, a friend accidentally discovered a sheet of paper with his AIDS test result on it in our home. It turned out that my husband knew he was positive before he had unsafe sex with me. His explanation was that he was too proud and afraid that I would simply stop loving him," Sarafina explains.

She is among the 37 percent of African-American women living with AIDS who contracted the disease through heterosexual transmission, according to 1996 Centers for Disease Control and Prevention (CDC) figures. And she is among the increasing number of married women who have been infected because their partners used intravenous drugs or practiced unsafe sex outside the marriage. For countless black and Latina women, the fierce traditions of pride and machismo common to the men in their families mean that honest discussions of sex, adultery, and condom use are out of the question -- a situation that often prevents them from early discovery of their HIV status or seeking care early in the course of the disease.

"I went through a lot after I found out," says Sarafina. "I was furious, suicidal -- I went through all kinds of emotions, but I eventually found the will to stay positive and try to take care of myself." Dealing with HIV therapies, however, posed some very frustrating decisions for Sarafina, given her commitment to a Rastafarian way of life. "To me, drugs of any kind take away from the body," she explains. "When I was first diagnosed, six years ago, I was given AZT. It took all of my energy, so I stopped taking it and began my own regimen of goldenseal, vitamin B12, echinacea, and continued to live as a vegetarian. Since my T-cells have gone up and down, however, my doctor asked me to begin a three-drug combination Epivir, Zerit, and Norvir. I told him I would give it a year and then see how I felt. I understand that these protease inhibitors can make the virus undetectable, but to me this is about being positive, believing in yourself," she says with conviction.

Learning to listen: understanding the issues

Measuring the impact of situations like Sarafina's is an inexact science at best, but current statistics offer some clues. In the United States, AIDS increasingly targets African-American and Latina women; 1996 CDC figures show that black women represent 59 percent of cases among women, and Latinas 19 percent. But as the number of AIDS-related deaths drops among other parts of the population, the rates among women -- and all persons infected through heterosexual contact -- continues to increase. For women of color, there are significant differences from the gay male population in how much control they have over how they contract HIV, when they discover their positive status, and how they utilize treatments.

Situations like Sarafina's are typical of the scenarios seen by program administrators like Marie Saint Cyr, director of East Harlem's Iris House, where Sarafina comes each week for counseling. After years of work, Saint Cyr eventually found the cultural barriers faced by her clients so complex that she sought (and recently received) funding to produce a series of videos to address the separate concerns of the Latina, Haitian, Native American, African and African-American women who come through the doors at Iris House each day.

"For each group, there are different concerns," says Saint Cyr. African-American women have inherited a legacy of mistrust of the medical community -- grounded in the history of the Tuskegee experiments and fears of genocide, she offers. "These beliefs stand between many caregivers and potential patients. For Latina women, many of the strongest objections even to discussing AIDS come from religion. Latina and Haitian women often share a religious-based fatalism -- they believe that they are God-fearing and God-loving people and that whatever happens to them happens on purpose and that no drug can truly help them," explains Saint Cyr.

And then there is the issue of family. "Most of these women are caregivers first," says Saint Cyr. "It is not so simple to say to them that they should make time for themselves or even to have their husbands accept the idea that their wives may have to receive special attention," she says. "Black women especially often think that they are not really sick until they are flat on their backs. As we well know, with AIDS, that is far too long to wait."

Even if caseworkers or physicians succeed in helping their clients move beyond these issues, the realities of living in poverty may kick in. "In the populations that I serve, I see several types of problems related to how my clients make their living or whether they can afford care," explains Rebecca Vargas-Jackson, MD, director of Howard University's Multinational Communication and Advocacy Office in Washington, DC. "If they can afford the drugs through insurance -- or my program -- many Latinos are still in jobs in which they are laborers. It is impossible for them to stop for eight glasses of water-a-day, or specific low-fat or high-fat meals, as the combination therapy regimens demand. They may want to comply with the treatment programs, but taking eight to sixteen pills a day, or more, is simply impossible for many of them," she says. "In addition, many of the women who come to me have trouble getting assistance because they are not US citizens."

Teresa Malcado* is typical of Vargas-Jackson's patients. "She came to me because her youngest child, a baby, was already very ill," says Vargas-Jackson. A 19-year-old wife and mother from El Salvador, Teresa knew little English and even less about AIDS, but she understood that her child needed help. In time tests would show that Teresa, her other child -- a two-year-old boy, and her husband were all HIV-positive.

"I began to understand what Teresa was facing when I first tried to talk to her husband," says Vargas-Jackson. "First, he refused all tests and insisted that if Teresa was sick with a sexually transmitted disease, then it was her fault because she must have gotten it from another man. Later, when he developed full-blown AIDS and it became clear that he was the first person infected and that he had, in fact, infected his entire family, he began to cooperate," she says. "At one point, I was able to include the family in a clinical trial and they were all doing well," she says. Since getting treatment allowed Teresa to continue caring for her family, she was highly motivated to take her medicine. Within a year or so, however, her husband was sent back to El Salvador because he did not have citizenship. Once there, he died within a few months. Next, Teresa's children, who had been allowed to remain in the US because they were born here, died. Today, six years later, Teresa is alone, very ill, isolated from her remaining family because of the stigma attached to her illness in her community, and losing faith in her ability to fight for her health.

Breaking through: talking it out

A critical step in helping women like Teresa and Sarafina get effective care is to find models for working with them in ways that respect their culture and their concerns. "We find that many of our clients have very valid problems," says Jeanine Primm, education coordinator at Project Teach, an education and outreach program for African-American women in upper Manhattan. "We conducted surveys to understand why women were rejecting treatment and we found that they were often turned off by the attitudes of the nurses and counselors with whom they met. We discovered that lack of comfort played a major role in how women viewed protease inhibitor regimens," says Primm.

"For African-descended women, for example, our tradition is that we learn orally. We talk things through, so we discovered that you could not just hand people a piece of paper with treatment instructions on it and walk away. They needed to ask detailed questions and talk about their fears and feelings. That just does not happen when a doctor spends five minutes with a patient," says Primm. "And, when people do not get that attention and information, word-of-mouth fills in the gaps. That's where you get rumors like the one that circulated -- still circulates -- that AZT is poison," Primm suggests.

Onile Lewis* is a Project Teach success story. Her experience shows that the program's approach is a help to many women. Onile is a mother of two and a former schoolteacher, who makes her home in Brooklyn, New York. "I developed a drug addiction that eventually led to my contracting HIV, losing my job, and ending up in the Medicaid and social security system seeking treatment," says Lewis. "The situation I faced is that people gave me drugs I did not understand. They said to take AZT and gave it to me automatically, but no one would tell me why to take it, so I did not want to stick with it. I did not trust anybody who was in a position to change my life," she says. Onile also shared the beliefs of many African-American women and men -- that AIDS has suspicious origins. "My theory is that AIDS is a man-made disease and that there is a cure, the drug companies are just not through making money yet," she insists. On top of those fears, Onile had to hide her HIV-positive status from her closest living family member -- her sister -- because of the sister's frequent expressions of prejudice against people with AIDS.

It was also fear, born out of a bout with spinal meningitis that caused her great pain and suffering, that led Onile to Project Teach and a more open attitude -- so open, in fact, that she became a peer counselor.

"My feelings about the virus aside, once I understood that it was constantly replicating itself inside my body, I was able to say to myself and other women, "Never mind how you got the virus or where it came from. The important question is, 'What are you going to do to slow it down to save yourself a few years of life?' Now, I see my doctor regularly. My T-cells are still over 500 and my viral load is less than 1000, but I made a pact with him that if these counts change, I will consider protease inhibitors," says Onile.

Overcoming barriers

Varga-Jackson, Primm, and Saint Cyr have discovered ways to overcome cultural objections. "First, be realistic," says Vargas-Jackson. "Religious taboos, for example, are things that first-generation immigrants are going to stick with -- no matter what. Especially if they are from El Salvador or Nicaragua. They are not going to discuss sex as a family. So, sometimes it helps to appeal to the machismo of the husband as the family's protector by explaining that he is a bigger man if he saves his family from this ill -- whatever it takes to make a difference," she says.

"We try to integrate information into aspects of culture," offers Saint Cyr. "Since cooking is such a large part of life for our clients, we teach our nutrition for health course as a cooking class. We also get them to think meals and medications together -- we use a chart," says Saint Cyr. "And when dealing with religious objections to care or religion-induced fatalism," she explains, "I point out that life is a gift given by God, and that therefore that gift must be protected."

Jeanine Primm feels that a large part of the decision to accept care lies with the individual. "I think the key is helping people internalize their sense of control," says Primm. "Our job is to help them understand and accept that they really can have an impact on this disease by taking better care of themselves."

*These names are pseudonyms.

Sheree Crute is an editor and writer for Heart & Soul magazine and the editor of the book, Health & Healing for African Americans (Rodale Press).

©1998, Medical Publications Corporation