Children and HIV/AIDS

Gary Anderson, Constance Ryan, Susan Taylor-Brown, Myra White-Gray

• Publisher: Routledge
• Year: 2017
• Print ISBN: 9781138520387
• eBook ISBN: 9781351320986
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

In December 1982, the Centers for Disease Control received the first reports of cases of children with HIV/AIDS. Since that time, the child welfare system, as well as other human service organizations, have been coping with and responding to the crises of children and families living with HIV/AIDS, including the considerable number of children affected by AIDS through the illness of their parents, siblings, or other family members. This volume is intended as a resource for personnel within the child welfare field serving children and families whose lives are touched by HIV and AIDS. The contributors add insight to and fuel the discussion of the fight against AIDS. They provide tools to help better serve the children and adolescents that the current epidemic so tragically affects. Chapters and contributors include: "Factors Associated with Parents' Decision to Disclose Their HIV Diagnosis to Their Children" by Lori S. Wiener, Haven B. Battles, and Nancy E. Heilman; "Custody Planning with HIV-Affected Families" by Sally Mason; "Correlates and Distribution of HIV Risk Behaviors Among Homeless Youths in New York City" by Michael C. Clatts, W. Rees Davis, J. L. Sotheran, and Aylin Attillasoy; and "HIV Prevention for Youths in Independent Living Programs" by Wendy F. Auslander, Vered Slonim-Nevo, Diane Elze, and Michael Sherraden. Originally published as a special issue of 'Child Welfare', this volume examines lessons learned from a variety of perspectives and settings, and identifies a number of continuing challenges facing the field. 'Children and HIV/AIDS' is an invaluable compendium that should be read by social workers and health specialists and all those affected by the epidemic.

1 HIV INFECTION AND CHILDREN: A MEDICAL OVERVIEW

A decade has passed since the Child Welfare League of America (CWLA) National Task Force on Children and HIV Infection published its Initial Guidelines on HIV Infection, a monograph that evolved in response to questions raised at a seminar sponsored by CWLA the previous year. At that 1987 seminar, “Attention to AIDS,” a compelling need to develop sound child welfare policy based on incomplete but best available medical experience was voiced, and CWLA took the lead in responding. Ten years later, despite multiple advances in medical care, the social, medical, and legal challenges of HIV/AIDS continue to affect children, families, and communities. The need to promote best practice through training, research, and literature remains paramount.

HIV Transmission

The medical overview I wrote in 1988 for CWLA’s Initial Guidelines focused on HIV transmission. There was a clear need to counter the epidemic of fear and prejudice associated with HIV with knowledge of how HIV is and is not transmitted. Fortunately, clinical experience and time have confirmed that HIV is not transmitted by casual contact and that the risk to health care providers and child care workers is remote if universal precautions are observed. HIV does not spread in households through activities of daily living or hugging an infected person. Although HIV can be transmitted through exposure to infected blood or body secretions, universal precautions—the use of latex gloves and bleach when contact must be made with those fluids—can prevent transmission. HIV proliferates in white blood cells; thus, infected blood must be in direct contact with the blood of an uninfected person through a break in the skin or mucous membranes for a new HIV infection to occur. The odds of exposure to bodily secretions and blood is greatest during anal receptive intercourse, the sharing of intravenous drug paraphernalia with an infected person, and vaginal heterosexual intercourse. Prior to the development of the HIV antibody test in 1985, HIV-contaminated blood products were a major source of HIV infection, especially to those dependent on those products, such as hemophiliacs. The nation’s blood supply is now tested routinely for HIV, and the risk of acquiring HIV through a blood transfusion is extremely remote.

HIV can also be transmitted from an infected mother to her child, either prenatally or during childbirth. Most infantile HIV is acquired during delivery; infection in the womb or via breast feeding accounts for only about 10% of infant HIV cases in the United States. When transmission of HIV to the infant occurred can now be determined through testing at or during the first few weeks following birth. A positive viral culture or polymerase chain reaction (PCR) assay for HIV at birth indicates intrauterine HIV transmission. HIV can destroy the immune systems of infants infected in utero before such systems have a chance to develop. These infants have high viral loads and tend to get sick in early infancy. Infants who are viral culture and PCR negative at birth but test positive after seven days have likely acquired HIV by swallowing infected maternal blood or cervical secretions during birth. These infants have a lower viral load and remain asymptomatic for a longer time than those infected in utero.

Diagnosis and Treatment of HIV in Infants

Early awareness of infant HIV status is extremely important. It affects not only the child’s potential placement for adoption or out-of-home care, but also the course of treatment undertaken. Until recently, the presence of maternal HIV antibodies in an infant’s blood made early diagnosis of the infant’s own HIV status nearly impossible. Typically, 15 months had to elapse before a child free of symptoms could be declare to be free of HIV. Advances in testing now allow early establishment of an infant’s HIV status—the results of three viral cultures or PCRs during the first month of life can prove or rule out HIV infection. The ability to identify HIV-infected infants at or near birth has made possible the early treatment of HIV-positive children, and improved assessment of the effectiveness of treatment.

New drugs and combinations of drugs allow therapy to be tailored to individual needs. In 1988, the only drug available to treat HIV was AZT. Today, analogues such as 3TC or DDI are available if toxicity or resistance to AZT develops. Positive clinical responses to protease inhibitors are also raising new hope. Difficulties in the use of these drugs in children must still be overcome, however. Most have not been officially approved for use in children, although anecdotal evidence supports high expectations for clinical improvement. Some of the drugs taste bad, are not available in liquid form, have prohibitive costs, promote resistant strains of HIV if compliance is poor, or may lead to other medical problems such as diabetes. The introduction of new classes of drugs is exciting, but only time can determine the risk-benefit ratio of each.

HIV destroys the immune system by infecting CD4+T helper cells. Monitoring levels of CD4 cells in the peripheral blood allows treatment providers to chart the progression of HIV disease and to recognize an increased risk for opportunistic infection. Improved therapy for these infections are prolonging the lives of HIV-infected children. For example, in 1988,60% of children with AIDS died from pneumocystis carinii pneumonia (PCP), an opportunistic infection. Today, a low T cell count can indicate when Bactrim prophylaxis for PCP should be prescribed, and death from PCP has become a rare event. Improved therapies for other opportunistic infections, especially cytomegalovirus, fungal infections, and tuberculosis, and timely use of childhood vaccination as well as the antipneumococcal vaccine, are helping to prevent complicating infections in immune-deficient children.

Maternal Treatment and Testing

At present, pediatric AIDS accounts for less than 2% of the total number of AIDS cases in the United States. Ninety percent of these children acquired their infection at birth. In 1988, 25% to 50% of infants born to HIV-positive mothers acquired the infection. With changes in maternal and newborn treatment, that number has dropped to 6% to 8%.

Most HIV-positive pregnant women today do not have AIDS but are in a relatively asymptomatic phase of infection. They may discover their infection only during routine prenatal care, where they are counseled to have an HIV test. HIV-positive pregnant women are typically referred to special programs where AZT during pregnancy, labor, and delivery is offered as a standard of care, in accord with federal recommendations; their newborn children are also given AZT as a prophylactic. In 1994, AZT administration to HIV-infected pregnant women helped reduce maternal fetal HIV transmission by 67% in the United States.

Competing concerns have thwarted sensible public health law since the onset of the epidemic. In some states, HIV testing of pregnant women is mandatory, a practice that has resulted in a political and social firestorm. Opponents of mandatory testing argue that, although it may help prevent some cases of pediatric AIDS, it violates a women’s autonomy if she would rather not be tested.

Similarly, the routine testing of newborns for HIV has raised a controversy. For example, in New York State, tests were performed on the umbilical cord blood of all newborns for more than 12 years, although mothers were not routinely informed of the results. Epidemiologists used this information to track the burden of HIV in various communities. Starting in March 1997, all new mothers began receiving the results of their infants’ umbilical cord tests. A positive test on the infant’s blood indicates that the mother has HIV. This information can be a grave shock to a new mother; it also raises strong feelings of guilt since the mother receives this information too late to receive AZT and protect her child. While the New York State policy was established in part due to a high resistance to prenatal maternal testing, critics argue that it demonstrates a blatant disregard for both the mother’s free choice and the newborn’s best interest.

Advances and Challenges

In the past few years, several significant medical advances have changed the face of the HIV/AIDS epidemic.

• AZT, administered during pregnancy and parturition, has dramatically reduced the rate of maternal-infant transmission.
• Highly sensitive and specific molecular genetic PCR assays have proven themselves to be as accurate as a viral cultures in determining HIV infection, making it possible to identify HIV-infected newborns in the first month of life.
• Protease inhibitors and other new treatments for HIV are being developed and refined.
• Viral load studies are being used to closely monitor the effectiveness of antiretroviral treatment.
• The measurement of CD4+T helper cells is being used to track HIV’s progression in individuals, leading to a reduction in and prompt treatment of bacterial and opportunistic infections.
• Side effects of infection and treatment are being better controlled, with improved strategies for pain management.
• Growth factors such as Epogen are now used to support bone marrow functioning and prevent anemia.
• Increased attention is being focused on the nutritional needs of HIV-infected individuals.

Although increased knowledge of HIV has lessened the fear associated with it and increased society’s tolerance, many challenges remain.

• As new medical treatments evolve for HIV, we run the risk of becoming complacent. The search must continue for an HIV vaccine to protect the uninfected and stop viral replication in those already HIV infected. New drugs must be tested in pediatric clinical trials and formulated for use in children. Procedures should be established for garnering “fast track” approval of promising treatments for compassionate use. Quality health care that is accessible, affordable, and cost effective must be made available.
• The increasing incidence of unsafe sexual practices (especially the failure to use condoms properly) and the increase in the spread of sexually transmitted diseases other than HIV indicate a continuing need for education. High risktaking behavior by youths must be discouraged. Schools must provide age-appropriate sexuality education. All medical and social welfare providers should receive continuing AIDS awareness education and should promote AIDS awareness and prevention in all clinical encounters. Continuing education should be provided for caregivers, families, and the general public as new information becomes available. HIV infected persons need to know their serostatus and protect their sexual partners.
• The need to reach out in a culturally appropriate manner to gay youths and to minority women and teenagers remains strong. We must empower women, minorities, teenagers, and other vulnerable persons who are not able to negotiate sexual activity. The transmission of HIV through rape and child sexual abuse must be ended.

Conclusion

By definition, an epidemic is not confined to a single segment of the population; likewise, its impact is not limited to public health, but encompasses a broad range of social issues. A child never has HIV in isolation. Often, an infected father transmits the disease to his sexual partner, who then passes HIV on to her infant. The range of challenges requires a mesh of the expertise of both medical and social workers. Multidisciplinary, family-oriented patient care review conferences on a regular basis can be used to evaluate the quality and effectiveness of team interventions. Coordination of services can result in cost savings and can provide an organized, cohesive method that prioritizes the families’ needs in a holistic manner. Systems of care must prepare and assist service providers to assess needs, provide tangible and intangible supports, and to deal with death, dying, and bereavement. Ideally, we must integrate health services with social services and involve the whole family—those infected as well as those affected—for the social difficulties the HIV epidemic raises are just as challenging as the medical concerns.

VIRGINIA ANDERSON, M.D. Director of Pediatric Pathology SUNY Health Science Center, Brooklyn Kings County Medical Center Brooklyn, NY

Supporting References

Anderson, V. M. (1987). AIDS as it affects children and adolescents. In Attention to AIDS: Proceedings of a seminar responding to the growing number of children and youth with AIDS. Washington, DC: Child Welfare League of America.

Anderson, V. M. (1988). HIV infection and children: A medical overview. In D. Pressma & J. L. Emery (Eds.), Initial Guidelines: Report of the CWLA Task Force on Children and HIV Infection. Washington, DC: Child Welfare League of America.

Chervenak, F. A., & McCullough, L. B. (1996). Common ethical dilemmas encountered in the management of HIV-infected women and newborns. Clinical Obstetrics and Gynecology, 39,411-9.

Beisel, W. R. (1996). Nutrition in pediatric HIV infection: Setting the research agenda. Nutrition and immune function overview. Journal of Nutrition, 126, 2611S-2615S.

Grubman, S., & Simonds, R. J. (1996). Preventing pneumocystis carinii pneumonia in human immunodeficiency virus-infected children: New guidelines for prophylaxis. Centers for Disease Control, U.S. Public Health Service and the Infectious Disease Society of America. Pediatric Infectious Disease Journal, 15, 165-8.

Hirschfeld, S. (1996). Dysregulation of growth and development in HIV-infected children. Journal of Nutrition, 126, 2641S-2650S.

Lambert, J. S. (1996). Pediatric HIV infection. Current Opinions in Pediatrics, 8, 606-14.

Larson, T., & Bechtel, L. (1995). Managing the child infected with HIV. Primary Care Clinics in Office Practice, 22, 23-50.

Lewis, S. L., Wesley, Y., & Haiken, H. J. (1996). Pediatric and family HIV: Psychosocial concerns ...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Contents
• Preface
• Introduction
• 1 HIV Infection and Children: A Medical Overview
• 2 Factors Associated with Parents’ Decision to Disclose Their HIV Diagnosis to Their Children
• 3 Parental Loss Due to HIV: Caring for Children as a Community Issue—The Rochester, New York Experience
• 4 Custody Planning with HIV-Affected Families: Considerations for Child Welfare Workers
• 5 Improving Permanency Planning in Families with HIV Disease
• 6 Correlates and Distribution of HIV Risk Behaviors Among Homeless Youths in New York City: Implications for Prevention and Policy
• 7 HIV Prevention for Youths in Independent Living Programs: Expanding Life Options
• 8 Shared Experiences: Three Programs Serving HIV-Positive Youths
• 9 A Place Called HOPE: Group Psychotherapy for Adolescents of Parents with HIV/AIDS