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Renewing the Commitment: The 2005 Reauthorization of the Ryan White CARE Act

Women, Children, Youth and Families Affected by HIV/AIDS

March 2005

Epidemiological Profile

For more than two decades, HIV/AIDS has been one of the nation's most pressing public health problems. By the end of 2003, more than 929,000 Americans have been diagnosed with AIDS, and more than 524,000 had died. The Centers for Disease Control and Prevention (CDC) estimates that at least 569,000 Americans are living with HIV/AIDS and at least 40,000 new infections occur annually.5

HIV/AIDS has had a disproportionate impact on the communities served by Title IV projects: youth, women -- especially women of color -- and their children and families. Though African American and Latina women make up just 27 percent of the female population, in 2003 they represented 83 percent of new AIDS diagnoses among women. And though for the overall population HIV/AIDS has not been among the fifteen leading causes of death since 1997, it was the number one cause of death for African American women ages 25-34 in 2001.6 The AIDS rate among Latinos is nearly four times that among Whites; among African Americans it is more than ten times greater. Among women, the disparities are even more shocking: the AIDS rate among African American women is 25 times higher than among white women.7

Youth and young adults also continue to be at risk. The CDC estimates that half of the 40,000 annual infections in the U.S. occur among people under the age of 25. In 2002, teen girls represented fully half of HIV cases reported among 13-19 year olds. African American and Latino youth are disproportionately affected, representing respectively 65 percent and 20 percent of AIDS cases reported among 13-19 year olds.8 Young gay and bisexual men are severely affected by HIV/AIDS. Male-to-male sexual contact remains the top mode of transmission in the United States, and young gay and bisexual men of color are at significantly greater risk of HIV infection than their white counterparts.9

By the end of 2003, 9,149 AIDS cases among children under the age of 13 had been reported to the CDC.10 The great majority of these children are African American and Latino, and most were infected perinatally. HIV incidence among children has decreased dramatically, thanks to the discovery of medical protocols that decrease mother-to-child transmission, paired with the programs that provide such services. These systems have recruited HIV-positive pregnant women into care, helped retain them in care, and promote treatment adherence. Also because of medical advancement and care provision, children with HIV are living longer, healthier lives.

Reauthorization of the CARE Act is taking place in the midst of a changing epidemic. Increasingly, the epidemic is moving toward women, youth, and people of color, and Title IV is responding to the evolving demographics and care needs. Public policy should recognize that HIV/AIDS is a disease that affects not only infected individuals but also their entire families. This is especially true for women of color who have children. Health and medical care for these women takes place in a context that typically includes poverty, the demands of child rearing -- often as a single parent -- a history of poor access to care, racism, and sexism. Further, as caseloads have increased, flat funding has meant a decrease in the amount of money available to provide care to people living with HIV/AIDS. Recognizing these problems is critical to supporting effective responses to the epidemic.

Special Needs of Women, Children, Youth and Families

All people living with HIV/AIDS have multiple and complex needs that require specialized health care and support services. This is especially true for women, children, and youth. Finding the right treatment regimens and administering anti-AIDS drugs are complicated and time-consuming for care providers, and individuals typically experience a host of side effects that may affect every aspect of their lives, from their work schedule and ability to leave home, to the foods they can eat and how close they must be to a bathroom at all times. In addition, managing disclosure and stigma with a disease that is still widely misunderstood can create enormous stress on individuals whose immune systems are already compromised. Finally, those populations most at-risk for HIV infection may already be struggling with any combination of poverty, discrimination, substance abuse and unstable housing.

Parents with HIV/AIDS who have children -- whether or not the children also have HIV -- face enormous challenges. Managing treatment of their own infection while also providing for their children can be extremely difficult, especially if HIV disease has incapacitated them. Coordinating transportation, childcare, and meeting their own medical and social service appointments is especially hard. If a parent is single or has a sick partner, the burden mounts. And when a child or children are also HIV-positive, parents frequently sacrifice their own health care needs to attend to the needs of their children. Parents with HIV/AIDS also must make arrangements for custody and guardianship with much more urgency and a much greater likelihood that those arrangements will be needed than other parents. Most often, these burdens fall on the mother, and, therefore, women's care tends to be affected by these concerns more than men's.

Children with HIV/AIDS face challenges ranging from disclosure at school to their own sense of self-worth and well-being. Even though the epidemic is over 20 years old, considerable misinformation and stigma still persist, and this can manifest itself in hostility toward children with HIV attending school. Further, children with HIV/AIDS tend to be absent from school more frequently than their counterparts, due to both illness and medical appointments. Meeting their educational needs in spite of frequent absence presents additional challenges. Coordinating with schools to meet the needs of children and youth living with HIV/AIDS is essential for both health and educational development.

In addition, anti-AIDS medications can affect children differently from adults, and HIV-positive children may grow more slowly than other children. Children who know that they have a life-threatening disease may need specialized mental health services. Managing disclosure with children is especially complicated, as parents and caregivers must both explain the illness to the child and help the child explain the illness to others as they navigate disclosure in school and social settings.

While youth with HIV/AIDS must deal with some of the universal problems of living with the disease, such as drug side effects, they also face their own unique problems. Two different groups of HIV-positive youth -- those who grew up with HIV from perinatal or early childhood infection and those behaviorally infected as adolescents or young adults -- may also be challenged by the disease in different ways. Youth who were perinatally infected may have grown more slowly and matured sexually later than uninfected children.11 Their educational progress may have been slowed by frequent absences, and HIV's neurological affects also may have created special educational needs. In addition, they may have had to cope with parental death and/or the foster care system.

Young people who were behaviorally infected with HIV most frequently come from two populations already facing stigma and often poverty: young men who have sex with men and young women of color. The subgroups of young men who have sex with men and young women of color who are most at-risk for HIV infection are among the most vulnerable youth in today's society: homeless or runaway youth, juvenile offenders, school drop-outs, and drug users.12 These young people may already be struggling with securing reliable sources of housing, shelter and food. Given these day-to-day life-and-death priorities, treating HIV infection -- which may not cause serious illness for years -- may not be a high priority for them.

For all the above reasons, providing these diverse populations -- women, children, youth, and families affected by HIV/AIDS -- with medical and support services presents considerable challenges and requires a wide range of offerings, including:

  • Culturally competent and friendly outreach, which is especially important in identifying HIV-positive youth and bringing them into care;

  • Specialized medical and support services teams with expertise in the clinical and social manifestations of HIV disease among these populations;

  • Transportation services and easily accessible service sites;

  • Language and interpreter services, especially when parents and/or children have limited English proficiency;

  • Childcare; and

  • Mental health, substance abuse, and case management.

Supportive services such as social work, case management and housing support are integral to successful care and treatment not only for women, children, youth, and families, but also for all people living with HIV/AIDS.

Title IV projects have built effective systems to reach women, children, youth, and families and promote healthy outcomes and support treatment adherence. The reauthorization of the CARE Act must recognize the achievements of Title IV grantees in serving these hard-to-reach communities, including the difficulties of finding them, getting them into care, and keeping them in care. Though much work is being done, the lack of adequate resources for Title IV -- and the rest of the CARE Act -- impedes a full response to the care and treatment needs of people living with HIV/AIDS. Following is further discussion of Title IV services, the family-centered approach to care, and policy recommendations.

Preventing Mother-to-Child Transmission of HIV (MTCT): The Role of Voluntary Testing and Comprehensive Services

Title IV grantees provide many innovative programs to address the HIV prevention needs of women, children, youth, and families. These include case-finding to bring infected individuals into care, as well as prevention education and services to help promote safer behavior among people living with HIV/AIDS. One of the greatest successes of HIV prevention within Title IV has been reducing mother-to-child transmission of HIV (MTCT).

In the absence of antiretroviral treatment, an infant born to an HIV-positive mother has about a 25 percent chance of becoming infected. In the 1980s and early 1990s in the United States, this meant that, out of the 6,000-7,000 HIV-positive pregnant women delivering, approximately 2,000 babies were born annually with HIV. However, in 1994, the groundbreaking results of the AIDS Clinical Trial Group (ACTG) 076 study demonstrated that treatment with AZT could significantly reduce the chance of transmission to 8 percent.13 As antiretroviral therapy advanced, even further reductions became possible.

Recent reports suggest that MTCT in the United States has been reduced by ten-fold, with approximately 200 infants born with HIV annually.14 This is an unqualified public health success story -- no other category of HIV transmission has achieved such a remarkable decrease.

Title IV projects have had a unique and major role in achieving these reductions, through case-finding for HIV-positive pregnant women, offering them testing, and providing the care and treatment that enables the reduction of mother-to-child transmission. Title IV projects have crafted an effective partnership of researchers, care providers, and consumers to develop models of care that greatly reduce MTCT. Providing HIV testing with informed consent and providing care through comprehensive care systems for HIV-positive pregnant women have already been tremendously effective. Expanding these services in the reauthorization process provides the best chance for further reduction in MTCT, toward the goal of elimination of MTCT in the United States.

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This article was provided by AIDS Alliance for Children, Youth and Families. It is a part of the publication Renewing the Commitment: The 2005 Reauthorization of the Ryan White CARE Act.