Prenatal human immunodeficiency virus (HIV) testing and treatment instituted in the 1990s is responsible for a substantial reduction in the number of children diagnosed with AIDS, yet the number of children born with HIV infection remains unacceptably high. To prevent perinatal transmission of HIV, the United States must adopt a goal to test all pregnant women for HIV and to provide optimal treatment for women who test positive and their children. To meet this goal, the United States should adopt a national policy of universal HIV testing with patient notification as a routine component of prenatal care. Adopting this policy will require the establishment of, and resources for, a comprehensive infrastructure. This infrastructure must include education of prenatal care providers, the development and implementation of practice guidelines and the implementation of clinical policies, the development and adoption of performance measures and Medicaid managed care contract language for prenatal HIV testing, efforts to improve coordination of care and access to high-quality HIV treatment, interventions to overcome pregnant women's concerns about HIV testing and treatment, and efforts to increase use of prenatal care, as described above.
In 1994, the AIDS Clinical Trials Group 076 trial showed that administration of zidovudine during pregnancy and childbirth could reduce the chance that the child of a human immunodeficiency virus (HIV)–positive mother would be infected by about two thirds.1 These results were an important breakthrough in the struggle against AIDS. More recent results showing that antiretroviral therapy coupled with elective cesarean delivery can reduce vertical transmission rates to 2%2 only heighten the importance of knowing a woman's HIV status as early as possible. The 1994 findings quickly led the United States Public Health Service and most states and professional organizations to develop guidelines on counseling and testing of pregnant women for HIV infection,3 and an increasing proportion of women now are being tested for HIV during prenatal care. Indeed, there has been a substantial reduction—approximately 43% between 1992 and 1996—in the number of newborns diagnosed with AIDS.4 Yet according to a new report from the Institute of Medicine, Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States,5 the number of children born with HIV infection remains unacceptably high.
To meet the goal to test all pregnant women for HIV as early in pregnancy as possible and to provide optimal treatment for HIV-positive women and their children, the Institute of Medicine committee recommended a national policy of universal HIV testing with patient notification as a routine component of prenatal care.
There are two key elements to the committee's recommendation. The first is that HIV screening should be routine with notification. This means that the HIV test would be integrated into the standard battery of prenatal tests and that women would be informed that the HIV test is being conducted and of their right to refuse it. This element addresses the doctor/patient relationship and can reduce barriers to patient acceptance of HIV testing. Most importantly, this approach preserves the right of the woman to refuse the test. If it is followed, women would not have to deal with the burden of disclosing personal risks or potential stereotyping; the test would simply be a part of prenatal care that is the same for everyone. Routine testing also would reduce burdens on providers such as the need for costly extensive pretest counseling and having discussions about personal risks that many providers think are embarrassing.
The second key element to the recommendation is that screening should be universal, applying to all pregnant women regardless of risk factors and of prevalence rates where they live. The benefit of universal screening is that it ameliorates the stigma associated with being singled out for testing, and it overcomes the problem of overlooking many HIV-infected women when a risk-based or prevalence-based testing strategy is used.6
Making prenatal HIV testing universal also has broad social implications. First, if incorporated into standard prenatal testing procedures, the costs of universal HIV screening are low, and the benefits are high. Assuming that the marginal cost of adding an enzyme-linked immunosorbent assay test to the prenatal panel is $3 per woman and the prevalence of HIV in pregnant women is two per 10,000, the cost of routine prenatal testing is $15,600 per HIV-infected woman found. If the cost of the test is $5 and the prevalence one per 10,000, the cost per case found is $51,100. Taken in the context of the cost of caring for an HIV-infected child, even though not all women found to be HIV-positive will benefit, these figures indicate the clear benefits of routine prenatal HIV testing.
Second, universal screening is the only way to deal with possible geographic shifts in the epidemiology of perinatal transmission. Although perinatal AIDS cases are concentrated in eastern states, there have been shifts in the prevalence of HIV in pregnant women, including an increase in the South in the early 1990s. Given the uncertainty of these trends, the committee considered universal testing the most prudent method to reduce perinatal transmission despite possible regional fluctuations.
Third, it would help to reduce stigmatization of groups by calling attention to a communicable disease that does not have inherent geographic barriers or a genetic predisposition. Focusing on the communicable disease aspect may allow national education programs that would otherwise be difficult and avoid the tendency of infected individuals to hide themselves and thus not benefit from care.
This recommendation in many ways is consistent with existing Public Health Service guidelines for counseling and testing of pregnant women.3 These guidelines call for all pregnant women to be counseled and tested, with a focus on voluntary testing. The recommendation differs from the Public Health Service guidelines in the amount of pretest counseling that should be required. Because the Institute of Medicine found that requirements for extensive pretest counseling, coupled with apparent low risk in many women, were deterring providers from testing at all, we judged that in some prenatal care practices less pretest counseling was necessary, as long as the basic information about testing and the woman's right to refuse could be communicated. Changes might be necessary in some state laws to implement the recommended policy (eg, in states with statutes that specify the content of pretest counseling and require more than is necessary in a prenatal care setting). In other states, the necessary changes can be made with a different interpretation, say, of the legal mandate to offer counseling and testing.