Pediatric HIV/AIDS in the United States
Adherence to treatment is a problem for most people who are HIV positive, but it poses a particular obstacle for children, who must cope with dosing requirements and side effects that even adults find difficult to manage.
In the United States, almost all new AIDS cases diagnosed in children under age 13 result from perinatal transmission of HIV. Although new HIV infections among infants have dropped dramatically since the introduction of zidovudine (AZT)-based regimens in 1995, perinatal transmission continues to occur, often because HIV-positive pregnant women do not receive appropriate prenatal care or HIV counseling and testing. Transmission most commonly occurs during gestation (in utero), during labor and delivery (intrapartum), and during breastfeeding.
Surveillance
- In 2004, an estimated 48 AIDS cases were diagnosed among children under age 13, a decrease of 61.3 percent since 2000.1 In the 25 States with confidential name-based HIV reporting, the reported number of perinatally infected infants dropped by 75.5 percent between 1994 and 2004.2
- From the beginning of the epidemic through the end of 2004, 9,443 children are estimated to have been diagnosed with AIDS.1 Of those cases, 92.9 percent resulted from perinatal transmission.1
- In 2004, an estimated 3,927 children were living with AIDS, of whom 63 percent were Black, 21.6 percent were Hispanic, 14.2 percent were White, and less than 1 percent were Asian Pacific/Islander or American Indian/Alaska Native.3
CRITICAL ISSUES
Today, most children with HIV are born to women who receive inadequate prenatal care: “With proper maternal treatment and perinatal prophylaxis, the risk of passing HIV from mother to child is less than 1 percent, compared with 28 percent without treatment.”4 Access to care for pregnant women is therefore critical for reducing HIV infections in infants.
Children with HIV/AIDS face an array of difficult issues, including stigma. Unlike adults, school-age children often have no choice about disclosing their HIV status to others. As a result, children often must grapple with adult issues associated with living with a chronic illness, especially an illness that is stigmatized by society. Children lack the maturity to effectively manage these issues on their own.5
Caregivers of young children may attempt to protect them from anticipated stigma by postponing telling them about the diagnosis. This decision may be motivated by the caregiver’s fear that the child, unaware of the social repercussions of disclosure, will inappropriately reveal the HIV diagnosis.6
People infected with HIV during childhood are living longer than ever. Many have grown into adolescence and face the normal challenges of teenagers. Children and adolescents, however, are at greater risk for the number and severity of psychosocial complications related to HIV infection, such as mental illness, and are likely to experience body image concerns resulting from delayed development, chronic dermatologic conditions, or lipodystrophy.7
Pediatrics and the Ryan White CARE Act
Care for HIV-positive infants and children is most successful when provided in the context of care for the entire family. Most caregivers are also HIV positive, and they must take care of their own health needs to meet the needs of their children. Services that respond to the myriad problems commonly seen in families with an HIV-positive family member—including comorbidities, poverty, lack of transportation, and poor housing—are essential.
All Ryan White Comprehensive AIDS Resources Emergency (CARE) Act programs serve children and their families, and the Title IV programs specifically focus on the needs of this population. Services include perinatal and pediatric specialty care, support services, and linkages to research and clinical trials. The Title IV program also has created special activities, such as the African-American Children’s Initiative, which have focused on reduction of perinatal HIV transmission and increased access to quality care for Black children.
The National Pediatric and Family HIV Resource Center, a project of the University of Medicine and Dentistry of New Jersey, supplies health care providers with information on diagnosis and treatment of HIV in pregnant women, infants, children, and youth and promotes the adoption of innovative approaches to providing comprehensive health and social services to clients. Many of the center’s activities are supported through a cooperative agreement with the Health Resources and Services Administration (HRSA).
From Isolation to Transformation: A CARE Act Guide to Supporting Men Caring for Children Living With HIV/AIDS is a tool for fathers and other men caring for children and youth living with HIV/AIDS. The document includes tips and tools for effective programs; it also addresses the benefits of male involvement, the effects of stereotypes on health care provision, isolating factors, and barriers to involvement. This and other technical assistance tools are available on the HRSA Web site, http: //hab.hrsa.gov/tools.htm.
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“With proper maternal treatment and perinatal prophylaxis, the risk of passing HIV from mother to child is less than 1 percent, compared with 28 percent without treatment.”4
References
1 Centers for Disease Control and Prevention (CDC). HIV/AIDS Surveillance Report. 2004;16:12. Table 3.
2 CDC. HIV/AIDS Surveillance Report. 2004;16: 38. Table 23.
3 CDC. HIV/AIDS Surveillance Report. 2004;16: 21. Table 11.
4 Boschert S. Pediatric AIDS vanishing locally, not globally. Pediatr News. 2001;35(11):18.
5 Brown LK, Lourie KJ. Children and adolescents living with HIV and AIDS: a review. J Child Psychol Psychiatry. 2000;41:81-96.
6 Baylor International Pediatric AIDS Initiative. HIV curriculum for the health professional. In: Close KL, Rigamonti AK, eds. Psychosocial Aspects of HIV/AIDS: Children & Adolescents. 3rd ed. 295-309. Available at: www.bayloraids.org/
curriculum/files/24.pdf.
7 Gaughan DM, et al. Psychiatric hospitalization among children and youths with human immunodeficiency virus infect
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