Lucy Auwalu trains HIV positive women to provide for their own material, physical, and psychological well-being, and recruits them to care for other women and children living with HIV.
The New Idea
Lucy puts HIV positive women at the front of projects to secure quality health care, pursue education, and defend themselves and their families from discrimination and abuse. Her organization, Women and Children of Hope (WCH), involves HIV positive women in all aspects of program design and implementation. To help these women build long-lasting relationships of support, Lucy incorporates them into a network. Group members, now in five of the country’s 36 states, combat discriminatory practices, secure affordable medication, and help each other handle intrafamily communication and testing of partners and children. Further, by telling their stories openly within their communities and to radio and television audiences, the women are changing what it means to be HIV positive: they show themselves as women of strength, dignity, and purpose, not as victims who live in fear and isolation, waiting to die.
The first Nigerian case of AIDS was diagnosed in 1986, and the AIDS epidemic has spread at an alarming rate ever since. A 1999 study revealed 2.6 million Nigerians were infected; by 2004, that number had grown to 4.5 million. In a country where gender inequality is the norm, the risk of becoming infected is especially great for women. Most Nigerian men keep multiple sexual partners without taking even the simplest measures to prevent infection.
When women become infected with HIV, they face a lifetime of stigma and discrimination; they often choose to hide their infection rather than face the consequences of living openly with HIV. Women know, for instance, that if they are openly HIV positive they will routinely be denied medical care. They have to take drastic measures to ensure that they won’t be turned away from hospitals even during childbirth.
Pregnant women with HIV often have to wait until the last minute of labor creating a true emergency before doctors will admit them to the emergency room. When HIV positive women receive hospital service, staff force them to leave prematurely and charge them high fees for having exposed the hospital to the virus. Discrimination like this pervades Nigerian society, causing HIV positive women to keep silent for fear of being fired from their jobs, forced to leave their homes, and shunned by friends and family. Furthermore, in the absence of proper information and support, mothers of HIV negative infants often breastfeed, which accounts for approximately 30 percent of cases of mother-to-child transmission.
While prevention campaigns run by citizen organizations and the government help to curb the spread of the virus, few of these efforts create networks of support and care for people who have already contracted the virus. Professional counseling is not readily available even for those women brave enough to seek it and is well beyond the financial means of most Nigerians. Without a supportive community of people who understand their troubles, few infected women take the initiative to learn how to keep themselves healthy for as long as possible or to prevent the spread of the virus to their children and sexual partners.
Lucy draws women living with HIV together into a supportive network to reduce the stigmatization of being HIV positive and to push for changes in resources and care. The women come to see that by working together, they can press for greater acceptance, expose employers and doctors who refuse HIV positive women, and secure greater access to affordable anti-retroviral drugs and formula for infants.
While in other AIDS focused initiatives the women are recipients of care, WCH recruits HIV positive members to lead many of its programs. HIV positive women lead group meetings, provide home-based care for sick or dying members, and establish systems for child care. This ownership of the illness and the solution is central to the group’s success.
To overcome the stigma of being HIV positive, Lucy encourages women to be open about their status—as far as their personal circumstances will allow. As more women free themselves of the overwhelming personal burden of secrecy, they provide needed data for programs of treatment and prevention.
When women make the decision to publicly acknowledge their infection and face the harsh consequences of living openly with HIV, Lucy arranges counseling services to help them cope. Her counseling and referral services forge partnerships with other health care providers, including sympathetic medical doctors and international organizations such as Family Health International. She also visits state-run hospitals to educate pregnant women on HIV/AIDS during prenatal clinics, and to assist those who have been diagnosed as positive. For HIV positive women not yet ready to meet in person, the WCH telephone hotline provides anonymous help, advice, and information. This service allows Lucy to counsel pregnant women and mothers of newborns about how to keep their babies virus-free by using formula rather than breast feeding.
To meet the immediate health needs of HIV positive women, Lucy solicits international organizations and the Nigerian government to provide anti-retroviral drugs for the women and children who work with WCH. She helped lead a coalition that pressured the government to subsidize these drugs, reducing the cost from 11,000 Naira per month to 1,000 Naira, approximately the equivalent of US$7. Knowing that government support for HIV medication remains unstable, Lucy directs WCH in building a diverse network of suppliers for needed drugs. In addition, WCH negotiates with companies that manufacture baby formula to sell it at reduced cost to HIV positive mothers with healthy infants. Finally, Lucy and her colleagues meet with international heads of state to influence the amount and type of pharmaceutical aid Nigeria receives.
Through WCH, Lucy runs a diversity of trainings to ensure the health and economic stability of her members. She offers information on the symptoms and treatment of the opportunistic illnesses that come with AIDS, invites doctors and other health care providers to speak on the issue, and secures medicine for opportunistic illnesses to be distributed to women free of charge. To ensure that HIV positive women maintain an income and thereby some degree of independence, Lucy provides vocational training focused on technology at her center in Lagos. The women also make fabrics, including a special print fabric that has come to symbolize solidarity among members. A portion of the income from the sale of the fabric provides a small revenue stream for the organization, and the rest goes directly to the fabric makers.
In addition to creating jobs for HIV positive women, Lucy helps members to keep and advance in their existing jobs. When an HIV positive woman is fired from her job, Lucy gathers a small group of colleagues and pays the employer a visit. The group tells the employer about the trials of life with HIV, and pleads that he keep the woman on staff. Given the lack of legal protections, this emotive approach is often the most effective strategy available to get employers to reconsider their position. When this approach fails, Lucy encourages women to pursue legal redress. Even though Nigeria has no current laws to protect against HIV-based discrimination, WCH members lay the ground work for protections by filling the courts with thoughtful petitions.
In the last twelve months, Lucy has set up new support groups in four states: Cross River, Kadunna, Kebbi, and Boronu. Group members total more than four thousand infected and affected women and children; she aims to involve another five thousand members in the coming year. WCH is extending its reach to rural areas as well, attracting and organizing rural women who travel to urban markets. Lucy is also using the church to help spread information and encourage more infected and affected women to get involved through Saturday informational presentations at churches. To share information across local support groups, she has started a quarterly magazine, connecting the community and highlighting issues of significant and broad concern.
Lucy learned from a pre-natal test in 1998 that both she and her husband were HIV positive. She was devastated, and in the absence of role models she did not know where or how to get help. When she realized she was not going to die immediately, Lucy resolved to work to reverse the stigmatization that she experienced and to ensure support for women and children living with HIV.
She read every article about the virus that she could find, joined Nigerian AIDS Alliance as a volunteer, and traveled to the 2000 AIDS conference in Durban, South Africa, which changed her life. For the first time she met openly HIV positive women. Hailing from all parts of the world, they were women of resolve and strength, and they helped her to see her life in an optimistic light. Upon returning to Nigeria, she was among the first in Nigeria to publicly declare her status and began to counsel other women who were HIV positive, working initially out of her living room. The dozens of women seeking her out amazed her, and she began to envision her work taking shape on a national scale. With seed money from Nigeria AIDS Alliance, she set up an office and started the first support group.
In addition to expanding her work through Women and Children with Hope, which she founded in 2000, Lucy appears regularly on radio and television to talk about living with HIV and to encourage HIV positive women to join a support group or start one of their own. She has a healthy baby boy who is HIV negative. Prior to his birth two years ago, Lucy took protective measures to prevent against transmission. She educated her doctor on mother-to-child transmission, supplied him with Nevirapin, and arranged for a cesarean section. Lucy’s child has brought motivation and direction to her work, and serves as a constant reminder that life after the virus can be rewarding and happy.