Scope of the Problem

Women

As of December 2001, there were an estimated 76,696 adult and adolescent women (=13) living with AIDS in the United States, according to the most recent data from the Centers for Disease Control (CDC, 2002c). This number has been steadily increasing at an average of more than 6,000 cases per year, up from 26,868 in 1993. Women account for 21% of the estimated number of adolescents and adults living with AIDS in the U.S. (CDC, 2002c). The most frequent route of HIV infection in women has shifted since the beginning of the epidemic. As of 2001, the majority of women with AIDS (59%) were exposed through heterosexual contact, up from 44% in 1994; meanwhile, 38% were exposed through injection drug use in 2001, down from 52% in 1994 (CDC, 2002c).

The CDC does not provide an estimate of the number of women living with HIV who have not developed AIDS. In addition, only 35 states report HIV infections to the CDC, providing an incomplete picture of the extent of the epidemic (all states report AIDS diagnoses to the CDC). However, those 35 states reported 49,226 women living with HIV through December 2001 (CDC, 2002c). Women represent an increasing proportion of the overall HIV incidence in the U.S. Women account for 32% of HIV cases reported in 2001, up from 27% in 1994, and it is likely that women will continue to represent an increasing proportion of HIV cases. According to data reported through December 2001, women between the ages of 13-24 made up 41% of reported HIV infections for these ages. Furthermore, women between the ages of 13-19 accounted for more than half (57%) of all the reported HIV infections in this sub-group. Researchers believe that these numbers are indicative of overall trends in HIV incidence, because these age groups have more recently initiated high-risk behaviors (CDC, 2002c).

Women of color are disproportionately affected by the HIV/AIDS epidemic. African Americans account for 13% of the U.S. population, but African Americans constituted 58% of AIDS cases among women reported through December 2001. Hispanic women accounted for 20% of reported AIDS cases, although Hispanics only make up approximately 12% of the U.S. population (CDC, 2002c; U.S. Census Bureau, 2000).

There have been considerable advances in recent years in the medical treatment of HIV, resulting in a significant decrease in the number of deaths due to AIDS. A total of 3,801 women with AIDS died in 2001, down from 6,190 in 1993 (CDC, 2002c). According to the most recent National Vital Statistics Report (Anderson, 2002), however, HIV disease remains among the top ten leading causes of death for all U.S. women between the ages of 20-44. It is the number four cause of death for all women ages 35-44, and the number one cause of death for African American women between the ages of 24-34.

Children

An estimated 3,881 children (<13) were living with AIDS in the U.S. as of December 2001, more than at any time since the beginning of the epidemic. In addition, the 35 states that report HIV cases to the CDC noted 3,923 children living with HIV who have not developed AIDS. During 2001, 157 new AIDS cases and 543 new HIV infections in children were reported.

Because the vast majority of these cases are attributed to perinatal exposure to HIV, the incidence of HIV/AIDS in children closely resembles that of women. Children of color are also disproportionately affected. Through December 2001, African American and Hispanic children respectively accounted for 59% and 23% of cumulative pediatric AIDS cases. In 2001, African American and Hispanic children made up 65% and 15%, respectively, of the newly reported AIDS diagnoses (CDC, 2002c).

HIV Treatment Issues

Medications

In 2002, the U.S. Department of Health and Human Services (DHHS) released the new Guidelines for the Use of Antiretroviral Agents in HIV-infected Adults and Adolescents. The report addresses the salient considerations for initiating the use of medication for HIV treatment, what regimen of antiretroviral medications to use, and when to change the antiretroviral regimen. In addition, the report provides recommendations for laboratory monitoring and special considerations for pregnant women (Panel on Clinical Practices for Treatment of HIV Infection, 2002).

In general, the goals of HIV treatment should be "maximal and durable suppression of viral load, restoration and/or preservation of immunologic function, improvement of quality of life, and reduction of HIV-related morbidity and mortality" (Panel on Clinical Practices for Treatment of HIV Infection, 2002). The DHHS guidelines state that viral load and CD4+ T cell count blood tests should be used together to help make decisions about starting or changing an anti-HIV treatment regimen. A viral load test measures the amount of HIV in the bloodstream and helps to determine the risk of disease progression to AIDS. A CD4+ T cell count measures the number of a specific type of infection-fighting white blood cell and helps to show the status of the health of the immune system (Panel on Clinical Practices for Treatment of HIV Infection, 2002). Effective HIV treatment should decrease the viral load, increase T-cell counts, keep the immune system strong, and prevent HIV from progressing to AIDS.

As of March 2003, there are three types of anti-HIV medications: reverse transcriptase inhibitors, which include nucleoside reverse transcriptase inhibitors, non-nucleoside reverse transcriptase inhibitors, and one nucleotide analog; protease inhibitors; and a fusion inhibitor (AIDS Community Research Initiative of America, 2002; Kaisernetwork, 2003a). Based on the weight of experience, the preferred regimen is a three-drug combination treatment that includes two reverse transcriptase inhibitors and a protease inhibitor (Panel on Clinical Practices for Treatment of HIV Infection, 2002).

For treating women with HIV, there are important and unique issues associated with the use of antiretroviral treatment in pregnancy. Initiation of treatment in pregnant HIV-infected women should be the same as those delineated for non-pregnant adults. Thus, the women's clinical, virologic, and immunologic status should be the primary factors in guiding treatment decision. However, it must be acknowledged that the potential impact of such therapy on the fetus and infant is unknown. The decision should be made by the woman following discussion with her health-care provider regarding the benefits and risks to her and her fetus (Perinatal HIV Guidelines Working Group, 2002).

There are also unique treatment considerations for HIV-infected infants, children, and adolescents. For example, children and infants infected with HIV have fewer medication options than adults do. Other important considerations in the medical treatment of children with HIV include: evaluation of specific drug dosing and toxicity, modifying doses as the children develop, and optimizing adherence to therapy (The Working Group on Antiretroviral Therapy and Medical Management of HIV-infected Children, 2001).

Medication Adherence

Because current combination treatments require taking many pills at various time intervals throughout the day, patient adherence becomes a critical component of successful HIV treatment and AIDS prophylaxis. The virus can quickly grow resistant to the medications if doses of the drugs are skipped or not taken as directed (Gortner, 1997). In surveying people with HIV/AIDS, the most important factors associated with non-adherence included "fear of both short- and long-term side effects," "interactions with other drugs," and "low level of knowledge about HIV and treatment issues." On the other hand, factors associated with being adherent include "knowledge about the importance of adherence," "integration of treatment into the routine of everyday life," and "social support for adherence" (Canadian AIDS Treatment Information Exchange, 2002).

Several strategies to increase medication adherence have been developed including "education regarding the importance of adherence for the prevention of HIV transmission," "reminder systems (e.g., beepers, pillboxes)," "regimen simplification," monitoring and addressing barriers to adherence, and tailoring solutions for individual patients (Ickovics, et al., 2002). Studies indicate that self-reported adherence is better among patients with less complex medication regimens. This is in part because patients' understanding of dosing decreases as complexity increases (Stone et al., 2001). Therefore, simplifying antiretroviral regimens can play an important role in improving patient adherence. Fortunately, new formulations of existing drugs are being made into once-daily pills, and in some cases, several drugs are now being combined into a single pill (Canadian AIDS Treatment Information Exchange, 2002).

Mother-to-Child Transmission of HIV

Mother-to-Child Transmission (MTCT) is the most common route of infection for children in the U.S., accounting for about 90% of cumulative pediatric AIDS cases reported by the end of 2001 (CDC, 2002c). During 2001, 150 of 175 new reported cases of AIDS in children were attributed to perinatal exposure. MTCT can occur at any one of three stages: antepartum (during pregnancy), intrapartum (during labor and delivery), or postpartum (after birth) via breastfeeding.

In February 1994, the initial results of the Pediatric AIDS Clinical Trials Group (PACTG) 076 study were released. This placebo-controlled study demonstrated that administering the antiretroviral AZT to pregnant women, orally antepartum and intravenously intrapartum; and orally to the newborn postpartum resulted in a significant reduction in MTCT from 25% to 8% (Connor et al., 1994). Since this study was released, significant advances have been made in reducing MTCT in the U.S., and these declines reflect the widespread success of public health services that include HIV counseling and testing, antiretroviral treatment, and offering elective cesarean section (CDC, 1999b).

In a more recent study, PACTG 367, the medical records of women infected with HIV who gave birth at 67 U.S. clinical sites were analyzed. Infant HIV status was known for 2087 pregnancies and 76 infants were infected with HIV, an overall transmission rate of 3.6% (Shapiro et al., 2002). The overall MTCT rates were shown to be over 20% for those mothers with no or unknown use of antiretrovirals, 5.3% with use of antiretroviral monotherapy, and 1.8% for women taking a combination medication regimen. Combination therapy for HIV has become the standard, with the large majority of the women (86%) taking more than one antiretroviral during the third trimester of pregnancy (Shapiro et al., 2002).

The elective use of C-section delivery increased from 12% to 29% over the course of PACTG 367 (Shapiro et al., 2002). Mode of delivery has received considerable attention in MTCT studies; however, it remains to be determined whether elective C-section will reduce HIV transmission rates beyond that accomplished by the use of combination antiretroviral therapy. Researchers from the Pediatric Spectrum Prevention Project found that of women who were receiving combination therapy, women who delivered vaginally and those who had elective C-sections had transmission rates of 5.5% and 4.5% respectively, which was not a statistically significant difference (Nielsen, 2002).

HIV Testing

Although there are many reasons for the continued incidence of perinatally acquired HIV, approximately 40 percent of the mothers whose infants become infected do not know their own HIV status before labor and delivery (CDC, 2002e). Therefore, a primary strategy to prevent perinatal HIV transmission is to maximize prenatal HIV testing of pregnant women. In general, there are three prenatal HIV-testing approaches implemented in the U.S.: the opt-in approach, the opt-out approach, and mandatory newborn HIV testing. Under the opt-in approach, women are provided with pre-HIV test counseling and then must specifically consent to an HIV-antibody test. Under the opt-out approach, women are notified that an HIV test will be included in a standard battery of prenatal tests and procedures, but that they may refuse testing. Under mandatory newborn HIV testing, newborns are tested for HIV, with or without the mother's consent, if the mother's HIV status is unknown at delivery (CDC, 2002a). Recent findings indicate that among the three prenatal testing approaches, opt-out voluntary testing and mandatory testing of newborns resulted in higher percentages of women tested for HIV during pregnancy. These approaches were also associated with a greater likelihood that women were offered HIV testing during prenatal care (CDC, 2002a). In the U.S., most states use the opt-in approach; Arkansas, Connecticut, New Mexico, and Tennessee use the opt-out prenatal HIV testing and; New York and Connecticut require mandatory newborn testing (CDC, 2002a, Kaisernetwork, 2003b). However, in April 2003, the CDC announced guidelines recommending that all states adopt the opt-out approach and include HIV testing as a part of the standard battery of tests provided to all pregnant women (CDC, 2003).

A significant barrier preventing routine HIV testing during pregnancy, and labor and delivery has been the inability of available HIV testing technology to produce timely results (CDC, 2002e). However, by the end of 2002, two rapid HIV tests were approved for use by the Food and Drug Administration (FDA), and are now commercially available in the U.S. (CDC, 2002d). For example, the newly approved OraQuick test provides an HIV result in about 20 minutes and should cost less than current testing procedures ("FDA approves," 2002). An accurate rapid test has several potential applications in prenatal, and labor and delivery settings to prevent prenatal transmission. Rapid knowledge of the mother's HIV status provides an opportunity for starting antiretroviral treatment and other interventions to reduce transmission, such as "elective cesarean section, avoiding artificial rupture of membranes, and avoiding breastfeeding" (CDC, 2002e).

In addition, a rapid test can be valuable for women who are unlikely to return for test results due to time and fiscal restraints, or other issues. According to the data from publicly funded counseling, many people do not return for their test results: 30% of persons who tested HIV-positive during 2000 and 39% of persons who tested HIV-negative did not return (CDC, 2002e). A rapid HIV test allows the test to be done and the result given all in one clinic visit (CDC, 2002f). The CDC (2003) has strongly encouraged the expanded use of rapid HIV testing, explaining that, "the recent approval of a simple rapid HIV test in the United States creates an opportunity to overcome some of the traditional barriers to early diagnosis and treatment of infected persons."

Psychosocial Issues

In addition to living with a chronic and potentially fatal illness, families affected by HIV are often faced with an array of other complex problems. Researchers in a recent study conducted in New York State found that almost 80% of all clients living with HIV needed assistance with a variety of issues (Lehrman, Gentry, Yurchak, & Freedman, 2001). The most prominent, according to Lehrman et al. (2001), were:

* basic living needs, which included the acquisition of independent housing, housekeeping services, transportation arrangements, and food-related services;
* financial support and benefits; and
* medical care, including primary and specialist physician services, nutrition counseling, home health care, dental care, and hospitalization.

Furthermore, data based on status at intake suggest that women, those exposed to HIV through heterosexual contact, individuals with children living at home, the inadequately housed, and those without a high school diploma have more needs than other groups (Lehrman et al., 2001). Comparatively, women infected with HIV tend to be poorer than their male counterparts. The federal HIV/AIDS Bureau (2002a) within the Health Resources and Services Administration (HRSA) reported that 30% of women with HIV, in one study, had annual household incomes of less than $5,000. Women with HIV are also generally less educated and less likely to be employed than men infected with HIV. Not coincidentally, children infected with HIV are also likely to live in poverty, and live with a single parent (Davies, Bachanas, & McDaniel, 2002). Social and economic concerns are particularly important to families living with HIV/AIDS because low income, lack of private insurance, unemployment, and low education level are predictors of poorer health and less access to health care (HIV/AIDS Bureau, 2002a).

Depression and other mental health problems are also issues for women infected with HIV. In many cases, non-HIV related stressors such as poverty, inadequate housing, and grief contribute to or exacerbate these problems (Davies, Bachanas, & McDaniel, 2002). Women with depression or poor mental health are less likely to use medications prescribed for HIV infection (Boggs, 2002). In addition, studies have shown that women's depression is associated with being less able to perform typical mothering tasks (Murphy, et al., 2002). This is of particular concern because that large numbers of women with HIV/AIDS are also mothers of young children (Murphy, Marelich, Dello Stritto, Swendenman & Witkin, 2002). More specifically, mothers infected with HIV may have poorer parent-child relationships, and high levels of psychological distress in mothers may lead to behavior problems in their children (Bachanas, et al., 2001a; Reyland, McMahon, Higgins-Delessandro & Luthar, 2002).

Although there is agreement that children infected with HIV have a high rate of emotional and psychological problems, there is some debate about the direct etiology of those problems. Major emotional and behavioral disturbances seen in children with HIV include attention deficit/hyperactivity, oppositional defiant disorder, anxiety, depression, and problems in social functioning relative to their peers (Bachanas et al., 2001b; Mellins et al., 2003).

Davies, Bachanas, and McDaniel (2002) report that, "Children infected with HIV are at risk for psychological complications due to both the direct effects of HIV infection on brain structures and the indirect effects related to coping with the range of medical, psychological, and social structures associated with HIV disease". Children living with HIV are also affected by issues concerning death and dying, particularly worrying about their health and future. In addition, since almost all mothers of these children are also HIV infected, the children must cope with the potential or actual loss of a parent (Bachanas, et al., 2001a).

However, some studies have found that these problems are not significantly different from those of their healthy counterparts from a similar social background (Bachanas, et al., 2001a). For example, Mellins et al. (2003) found that the high rate of behavioral problems in children with HIV is not significantly associated with HIV disease; instead, the problems are more consistently related to other demographic and environmental factors.

Case Management and Comprehensive Services

Given the social, economic, and psychological challenges faced by families living with HIV/AIDS, it is important to provide services that address these issues, and that nurture the relationship between mothers and children living with HIV (Kmita, Baranska, & Niemiec, 2002; Leslie, Stein & Rotheram-Borus, 2002). In addition, it is important to provide these services in the context of care for the entire family (HIV/AIDS Bureau, 2002b). The experiences of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act providers demonstrate that "Comprehensive and coordinated care - medical treatment, mental health treatment, case management, support services, and care for the entire family - is crucial if HIV-positive women and their families are to remain in care over time" (HIV/AIDS Bureau, 2002c). Furthermore, "Comprehensive care for pregnant women has also been shown to be equally critical in reducing perinatal transmission rates" (HIV/AIDS Bureau, 2002c). These findings favor the development of comprehensive, integrated, and co-located services. Researchers suggest that this is particularly important for geographic areas that lack abundant services and integrated delivery systems, such as areas outside of large cities (Lehrman et al., 2001).

Due to the complex needs of families living with HIV, case management has become an important intervention strategy. "Case management programs are designed to provide people with continuity of care by improving the quality of their lives, ensuring appropriate individualized medical plans, encouraging adherence to medical treatment, and linking clients with appropriate services needed to maintain optimal physical, psychological, and social functioning" (Chernesky & Grube, 2000). For example, the AIDS Foundation of Chicago and Pediatric AIDS Chicago Prevention Initiative created intensive case management positions to ensure that pregnant HIV-positive women receive medical care, and supportive counseling to improve the adherence to their medication regimens (AIDS Foundation of Chicago, 2001).

Although disease management (e.g., helping clients cope with their diagnosis and treatment regimens, and assisting them in keeping and getting to medical appointments) is an essential component of case management, it also addresses other needs, problems, and situations that are not directly related to HIV/AIDS (Chernesky & Grube, 2000). An evaluation of the project in Chicago showed that case managers were beneficial in assisting with immediate needs such as housing and benefits, in addition to medical care needs (AIDS Foundation of Chicago, 2001). The provision of services that address non-medical problems may also improve medical treatment by removing barriers to adherence to complex HIV drug regimens (Lehrman et al., 2001). Katz et al. (2001) found that contact with a case manager is associated with higher use of two-drug and three-drug antiretroviral regimens at follow-up. These authors reported that case managers helped patients overcome fears about treatment, adhere to medication regimens, and keep medical appointments; and functioned as patient advocates to doctors to initiate treatment for their patients.

Child Care and Custody Issues

Women living with HIV often experience periods of relative health punctuated by periods of acute illness related to an opportunistic infection. As a result, a parent living with HIV may often need a short-term caregiver for her children. In addition, a parent may need someone to provide care to her children in the event of her death (Mellins, Ehrhardt, Newman, & Conard, 1996). As most women infected with HIV are also mothers, creating future care and custody plans for their children is an important consideration (Selbin & McAllaster, 2000). Many states have developed legislation and policies to address the issue of future care and custody planning, particularly through short-term guardianship, co-guardianship, standby guardianship, and standby-adoption:

* Short-term custody/guardianship entails completing, in writing, an agreement between a parent and the caregiver for the transfer of care and custody of the children for a limited amount of time. Variations on short-term guardianship are currently available in California, Delaware, Illinois, Louisiana, Minnesota, North Carolina, and the District of Columbia (Coon, 2000; Selbin & McAllaster, 2000).

* California and Connecticut have enacted joint guardianship legislation specifically as a future care and custody planning tool. These statutes allow the court to appoint both the parent and another adult as joint guardians of the parent's minor children while the parent is still alive (Larsen, 2000; Selbin & McAllaster, 2000).

* The purpose of standby guardianship, a relatively new planning tool, is to allow a parent to make care and custody plans for her or his children now that will become effective at some future date (Simms, 1996). A standby guardian is chosen by a parent to become the legal guardian of the parent's minor children, in the event the parent becomes unable to care for the children. In general, the standby guardian becomes the active caretaker of the children after either the death of the parent, the mental or physical incapacitation of the parent, or upon the request of the parent (Pinott, 1994). Standby guardianship legislation has been enacted in 17 states (Arkansas, Colorado, Connecticut, Florida, Georgia, Illinois, Maryland, Massachusetts, Minnesota, Nebraska, New Jersey, New York, North Carolina, Pennsylvania, Virginia, West Virginia, and Wisconsin) and the District of Columbia. Although they do not have specific standby guardianship laws, a few other states (Iowa, Ohio, Texas, and Wyoming) have legislation that incorporates important elements of this tool (Palmer & Mickelson, 2001; Larsen, 2000).

* Standby adoption is a unique and relatively new future care and custody planning option, which currently exists only in Illinois. Standby adoption allows a parent to identify and the court to appoint future adoptive parents for the children. After a triggering event, the standby adoptive parents go to court and complete the adoption process. In the context of standby adoption, the triggering event is usually the death of the parent, although if a parent wanted the adoption to be completed during her or his lifetime that would also be possible (Coon, 2000).

In addition, programs have been developed, with the assistance of federal and state funding, to help these families address the social, emotional, and legal issues involved in making a future care and custody plan. For example, the U.S. Department of Health and Human Services provides funding for voluntary permanency planning projects for families affected by HIV through both the Abandoned Infants Assistance Act and Title IV of the Ryan White CARE Act (Palmer & Mickelson, 2001).

Conclusion

Advances in anti-HIV therapies have offered many benefits in maternal and child health, most notably in terms of reducing the rates of MTCT. The recent introduction of accurate rapid HIV testing provides another promising avenue to help prevent maternal transmission and improve the overall process of counseling and testing. In addition, case management and coordinated services have proven to be successful interventions in addressing the needs of families affected by HIV.

However, HIV/AIDS continues to be a significant problem affecting women and children in the U.S., particularly women and children of color. More women and children are living with HIV today than at any time since the beginning of the epidemic, and they require long-term and complicated medical care and treatments. In addition to coping with a chronic and life-threatening illness, HIV-affected families often face an array of other complex problems (e.g., poverty, inadequate housing, depression, substance abuse, future care and custody planning) and continue to need services that address these issues.

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