As if living with HIV, as a woman, weren't hard enough, numerous HIV-positive female immigrants -- documented or undocumented -- living in the United States face significant obstacles. Not only must HIV-positive immigrants contend with fears of deportation or losing their residential status, they may also face significant challenges procuring lifesaving healthcare and social services in a foreign country where immigration policies are in a state of flux.
Immigrant women are especially affected by the epidemic and have unique challenges with regard to treatment and prevention. As of 2005, there were 126,964 women with AIDS in the U.S. Latinas, including immigrants, are disproportionately affected by HIV. Although they make up 14% of the U.S. population, they are 19% of women with HIV. Immigrant women are often hard to reach due to their unique needs and challenges.
In New York City, 36% of the population is foreign-born, compared to 12% of the total U.S. population. Despite the fact that there are over 3 million foreign citizens temporarily or permanently residing in New York City, there is very little research on immigrants and HIV, let alone immigrant women and HIV. A needs assessment, conducted by the HIV Health and Human Services Planning Council of New York, found that there are no surveillance tools to measure the occurrence of HIV among either documented or undocumented immigrants.
New York City has one of the highest HIV rates in the country and is home to a large number of HIV-positive immigrants. According to a 2004 report from the New York City Department of Health and Mental Hygiene (DOHMH), 12,000 persons living with HIV in the city were born outside the United States. Of the 3,653 newly diagnosed cases in that year, 23% were foreign-born.
One of the most disturbing findings of the report was that by the time foreign-born persons with HIV received care, most had progressed to AIDS.
Key reasons for immigrants' reluctance to come forward are fear of deportation, fear of stigma, and the language barrier. The desire to come to the U.S. and find a better way of life, whether to stay short-term or permanently, can lead to a stressful and traumatic immigration process. Immigrants experience pressure to succeed in the new country, difficulties in communication, and a loss of family and friends. Studies have linked their low acculturation levels and mental health problems to leaving their support systems and entering a new society armed with minimal or no English-language skills, making it difficult to establish a new social network. For immigrant women, their loss of identity and familiar support networks places them at risk for HIV. But the most important factor for immigrant women is that they do not perceive themselves to be at risk for HIV.
Immigrants may have left their native countries voluntarily, or may have been forced to leave. Many HIV-positive women arrive in the U.S. having already been diagnosed in their home countries, while others arrive without awareness of their HIV status. Those who emigrate knowing their HIV status may do so in response to the lack of treatment in their home countries, as well as the discrimination and stigma encountered there. One such woman described her experience when she was hospitalized in Ecuador: A sign reading "AIDS" was hung above her bed, inviting many negative comments.
Since very few women have the resources to participate in official "bridge" programs that permit foreign citizens to travel to New York to obtain medical care, women risk their lives to immigrate illegally to the U.S. or other countries. Once in New York, they struggle with the decision to live here with an undocumented status or to return to their home countries.
For many immigrant women, learning about their diagnosis is directly related to their immigration status. In order to obtain permanent residency in the United States an individual must take an HIV test. If positive, the individual can be denied permanent residency. Unfortunately for many women, the HIV test for residency is how they first learn their status. The following is an example of this journey:
Alejandra lived in Peru with her child while her husband came to the U.S. Eventually they decided she should join him here. When she arrived, he was hospitalized. He then left her. So, like many immigrants she opted to marry to obtain legal residency. She was told to take an HIV test and, not knowing what HIV was, agreed. When she returned in two weeks, the nurse told her, "Did you know you are HIV positive? You might as well go back to your country -- otherwise you will just die here."
Alejandra became depressed, isolated, and fearful of telling her family. She confided in her sister and made the decision that the best place for her was to go home to Peru. She returned to her country and was treated with indifference by her family. Then she found a doctor -- her "angel" -- who was supportive and told her she did have an opportunity to live, but that their country did not have the medications necessary. For her daughter, she found the courage to live and returned to the U.S., where she found a wonderful social worker and medical facility where she has thrived.
Immigrant women like Alejandra find that their options have diminished. As a result of the stigma that continues to surround HIV, they feel they are different. They may remain in violent situations or become involved with men who tell them, "No one else will want you now." The feeling of being "damaged goods" is virtually universal for women living with HIV and often leads to their remaining in high-risk relationships and behaviors.
Women account for approximately two-thirds of immigrants living in the U.S. Violence against women, particularly intimate partner violence (IPV), has specific and disproportionate effects on immigrant women. Claudia Moreno of the School of Social Work at Rutgers University and other researchers have shown how HIV and IPV share risk factors that are important in both HIV treatment and prevention. Women dealing with IPV often have a history of childhood sexual abuse or physical and verbal abuse, and are often witnesses to violence and death in war-torn countries. This trauma affects how they relate to the world, shatters trust, and lowers their sense of self-worth. Women are also less able to negotiate sex in relationships that include IPV. The fear of violence, intimidation, and threats inhibit their ability to demand safer sex practices. For many women, disclosing their HIV status to their partners increases the risk of violence. Social isolation is increased, making it difficult to reach out to them.
Immigrant women with HIV have an even higher risk of living in abusive relationships. Based on clinical experience and supported by research, HIV and IPV are interwoven in the lives of many immigrant women. Recent studies show that Latinas living in the U.S. account for 34% of those experiencing IPV. The National Family Violence Survey found that the rate of Hispanic partner abuse was 54% greater than in non-Hispanics. Although there is little research on immigrant women from African and Asian countries, evidence indicates that women worldwide endure abusive relationships.
For many undocumented immigrant women, the threat of being reported to the Department of Homeland Security -- with its overarching power to deport and revoke immigration statuses -- is the thing they fear most. The thought of having to return to their countries without medication is terrifying. They are often unaware of their rights as immigrants, and think they have no options.
In addition, their partners may withhold medication and may force unsafe sexual behavior. One immigrant woman reported living with an abusive male partner for two years and not being allowed to go to medical appointments. Consequently her viral load rose and her CD4 count dropped considerably. She was fearful of leaving and, like many women, was dependent financially on the partner. Upon having the courage and support to speak in her community church, she was able to get her partner out of her home.
Another vulnerable group are lesbians who are forced to emigrate from their home countries because of persecution. They may be at increased risk for substance abuse and, more than other immigrant women, can place themselves at risk for HIV. Prevention campaigns must be designed to address their needs.
Research has demonstrated the stress associated with the decision to disclose one's HIV status. This stress is heightened for immigrant women when they are physically separated from partners, children, and family. The dilemma of whether to stay and receive care or return to their families is a constant stress in their lives, especially when they have children in their native countries. They may have planned to save money and return, but their options become severely limited once they are diagnosed.
Making the decision to disclose is very difficult for these women. They develop a long-distance relationship with families and children asking, "When will you return?" Women begin to protect themselves and their children by saying they are sick, or working, or having difficulty with their legal status. There is an enormous sense of guilt, shame, and sadness associated with disclosure. The frustration and sadness of not seeing their children, which they already face, is compounded by the fear of dying before have the opportunity to see them again. This can contribute to depression and anxiety.
Immigrant women with HIV have an additional responsibility, especially if undocumented, of caring not only for themselves, but for their children and families overseas. They experience anxiety stemming from the fear of becoming ill and losing the ability to work. In addition, undocumented women have few options with regard to vacation time and sick leave: "If I don't work, I don't get paid." Working long hours interferes with medication adherence. Women also overcompensate for their diagnosis by working long hours to provide for their children. The feeling that they can at least provide their children with good clothing, school, and extra money leads them to work extra hours, which also affects their need for rest. After-work and evening hours are important for immigrant women receiving medical services.
Changes in immigration laws have had an enormous impact on services for immigrant women with HIV. Prior to September 11, 2001, immigrants living with HIV were able to apply for PRUCOL (Permanent Residence Under Color of Law), letting immigration authorities know of their presence and enabling them to obtain basic entitlements. It alleviated some of the stress of working very long hours. New immigration laws have made this option virtually nonexistent, thereby burdening these women with longer hours, higher stress levels and depression, increased anxiety, and putting them at greater risk for alcohol and substance use. The importance of integrating substance abuse treatment and harm reduction in both treatment and prevention efforts cannot be overstated.
Immigrant women also learn about their status when being tested for pregnancy. Young women usually have no family members in this country and are in need of many supportive services. They are at risk for HIV when engaging in survival activities such as commercial sex work, or when they are involved with older men who provide for them financially. The following is one story:
Fernanda is a 24-year-old woman who was infected by her first boyfriend in El Salvador. She was not aware of her status until she went to get a pregnancy test at a city hospital. The diagnosis led to a sense of confusion, shame, and isolation. She didn't know where to turn. She was afraid the child she was being paid to care for would get the virus, so she obsessively cleaned her silverware, bathroom, and even clothing. At the time of her diagnosis the Positive Life Program at the Child Center of Woodside, Queens, had started a support group for Latinas. Fernanda would go once in a while but was very timid and just listened. The icebreaker came one day when staff brought bagels and she said, "We don't eat that -- Can you bring empanadas instead?" There began a process for Fernanda in a group that brought respect, warmth, and acceptance to her process of transformation.
Through group she worked through her feelings of loss, pain, and anger, and shed many tears. Slowly she realized she had choices, began to ask about medication, and took advantage of literacy classes. Fernanda began to understand that knowledge gave her more control. She learned how to express her pain -- to put words to what she felt. Her narrative began to shift to a woman of hope. She learned about the use of condoms, including the female condom, and became a peer educator and a community activist. Fernanda states, "I have learned that I have a voice, a voice that can now be heard."
Reclaiming their voice, dignity, and respect is a healing and transformative process for immigrant women living with HIV. Providers can be vehicles to allow the process to unfold and can be part of the journey that reshapes their lives, leading to a hopeful and productive future. When immigrant women feel and own their empowerment, they are able to live more fulfilling lives and value their contribution to being in this country, as opposed to feeling that they are a burden.
The approach used in the Positive Life Program in Queens, New York, is one of validation, affirmation through music, story telling, and embracing the cultural "familismo" that women need to feel supported. In women's centers across this country and globally there is a valuable lesson: Women have a voice and story to share. Funding support for full meals, not just snacks, is needed, especially for immigrant women working long hours. Providing a safe, confidential environment with a respectful and warm approach is essential for women to feel safe, and facilitates a process of "confianza," or trust.
At the Positive Life Center, we coordinate a women's retreat for women living with HIV, which is very healing and transformative. Funding is needed for women and their children to experience a day or weekend of reparation, and for children's groups as well as groups for couples of mixed HIV status.
The new stringent immigration laws in the U.S., coupled with lack of funding for medical and supportive services, will further increase the vulnerability of immigrant women with HIV. We need to work together to advocate for women's programs, increase funds for microbicide research, and increase women's access to clinical trials. At the local and global level, we need to put an end to the gender violence that hinders women from seeking treatment. We need to address their lack of knowledge that they have the right to treatment regardless of their immigration status.
Grassroots prevention efforts need to be supported in order to connect with this vulnerable and hard-to-reach population. Voces Latinas is one such program that aims to reduce transmission of HIV among Latina immigrants in Queens. Voces Latinas integrates workshops, peer education, and health promotion, to reach women who otherwise would not come forward. The program successfully integrates valuable information on domestic violence, nutrition, housing, assertiveness training, cancer, and HIV within a culturally competent context. As in Asian and African cultures, sexuality is not talked about openly, so providing informal gatherings is the most effective and least threatening approach for immigrant Latinas.
Rosa Bramble Weed, L.C.S.W., is Director of the Positive Life Program of the Child Center of Woodside in Queens, New York.