September 26, 2001

Women with HIV/AIDS
face distinct challenges

Because HIV/AIDS is still largely seen as a disease that affects gay males, it's easy to underestimate its impact on women. But as the number of women, particularly women of color, contracting the disease continues to increase, it warrants serious attention, says Patricia Clark-Ellis, a CSUS social work professor and interim associate dean of the College of Health and Human Services.

Since 1999, Clark-Ellis has been working with the Sacramento Women's HIV+ Support Group for women with HIV/AIDS. She has found that women with HIV/AIDS have specific legal, psychosocial and health issues.

For example, most of the women Clark-Ellis is in contact with have children. As a result, they must plan for their children's futures in case they become incapacitated or die.

"Joint guardianship allows the mother to participate in selecting guardians who will care for their children if they become disabled or die. If there is no guardianship in place, their children could be placed in foster care or with relatives that the mother would not prefer," Clark-Ellis says. "Joint guardianship, which is specific to California, gives women peace of mind, knowing their children will be with people who will properly care for them."

In addition to custody concerns, women with HIV/AIDS have to cope with the multiple problems that come with having a terminal illness. "A diagnosis of HIV infection is a devastating, life-changing experience that forces a woman to deal with a number of issues that she has never had to face," Clark-Ellis says.

Stressors may include fears of infecting others, coping with possible ostracism, preparing for loss and the need to redefine familial roles, she says. The women are often confronted with sociocultural issues such as poverty and inadequate health care and social services. Once others know a woman has AIDS it can become more difficult for her to get housing, insurance and other basic necessities.

Clark-Ellis adds that living with HIV/AIDS means a woman must not only manage the physical and emotional dilemmas, but human rights issues. In addition to guardianship, these legal issues include confidentiality, discrimination in the workplace and the educational system and planning for the future.

"AIDS carries a stigma, particularly in the African American community, because of the association with intravenous drug use, risky behavior and homosexuality," she says. "Most of the women I interviewed contracted HIV through their sole partner or spouse and not through drug use."

Despite lingering perceptions that HIV/AIDS is a disease that affects gay men only, HIV infection among women in the United States tripled between 1985 and 1999. And despite the false sense of security that comes from news of drugs to combat the disease and the sight of people with HIV or AIDS who seem perfectly healthy - like Magic Johnson - it's still a fatal disease.

Clark-Ellis points out that many women with HIV/AIDS are poor women of color, between the ages of 25 and 44, and are single parents. They are often caregivers for an older family member or spouse. Therefore, they tend not to take care of their own medical and physical needs.
Beyond using her background as a lawyer to help the women set up guardianships, Clark-Ellis assists with housing and social security issues and brings in clothing and toys. She also encourages the women to call her at any time.

"What I thought was going to be a research project has evolved into much more," she says. "I care about the welfare of these women. I started out viewing them as subjects for my research but the relationships have evolved into friendships. I truly admire their strength, their faith and their optimism."

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