We have learned a lot about how to prevent HIV transmission from a mother to child during pregnancy, birth and infancy (sometimes called vertical transmission). Improved preventive care and voluntary HIV testing have drastically reduced vertical transmission rates in developed countries. However, while good testing policies work hand in hand with improved care options to produce better outcomes for women and children, testing policies can't in and of themselves reduce vertical transmission. Therefore, the goal of testing policies must be to encourage women to know their status and whenever possible, link women with the healthcare necessary to take advantage of their options.

Most people agree on the goals of testing in the context of pregnancy -- reducing vertical HIV transmission and optimizing care for mother and child. However, when it comes to setting testing policies, there is disagreement about the best way to achieve these goals. Because HIV testing policies can work for or against women, it is critical that testing policies for pregnant women reflect good public health policy by encouraging -- not discouraging -- women from seeking the healthcare they need; thereby reducing risk of vertical transmission. This is an important balance to strike.

Testing Pregnant Women

Every pregnant woman should be offered an HIV test as early as possible in her pregnancy. The offer to test should be accompanied by individual, culturally competent counseling and should discuss the benefits of determining her HIV status, as well as its implications for her life, pregnancy and, potentially, her unborn child.

If a woman chooses to test and the result is positive, optimally, she will have increased information and options for her own personal healthcare. If she chooses to continue her pregnancy, she will also likely have more information and options to reduce the risk of vertical transmission.

For a woman who tests negative, counseling regarding HIV prevention should be available and if she chooses to continue her pregnancy, counseling discussing a safe pregnancy, including prevention of HIV, should be a standard part of all care.

Testing Newborns

HIV testing of newborns is different than testing pregnant women. Depending on the type of test used, babies born to HIV infected women may test positive at birth simply because they are carrying some of the HIV antibodies from their mother. As the baby gets older, the mother's antibodies will die off and allow for an accurate HIV test. Thus, the presence of HIV antibodies at birth only reveals the mother's status.

Testing babies at birth, particularly if the mother has not yet tested for HIV and has not given an informed consent to test her baby, raises a number of issues. Before attempting to formulate policies for testing newborns, women and policy makers must be clear on what different types of HIV tests can and can't determine, how much time is necessary to obtain accurate results, and what options exist for preventing vertical transmission after delivery.

Types of Testing

There are three primary policies of HIV testing for pregnant women and newborns.

Voluntary testing: In this setting, pregnant women are advised and counseled about HIV testing and the implications of being tested and are offered a test. Many policies call for a written informed consent signed by the woman. Written informed consent has the advantage of documenting that the woman was advised about HIV testing. Women have the right to accept or refuse the test. Voluntary testing coupled with counseling and informed consent facilitates a woman's ability to make informed decisions about her healthcare and that of her newborn. Since 1995, voluntary testing has been the policy recommended by the US Public Health Service Guidelines.

There are many reasons to support this policy. First and foremost, it works. Quality prenatal care and effective HIV prevention strategies coupled with voluntary testing and counseling have dramatically decreased vertical transmission rates. When appropriately offered a voluntary HIV test, women overwhelming accept. Indeed, acceptance rates have been shown to be 90% and higher. Moreover, counseling and voluntary testing are also the best mechanisms to actively engage women as equal partners in their care.

Universal or routine testing: This policy includes an HIV test in the standard battery of tests that all women receive when they are pregnant. With routine testing there is often no guarantee of counseling. Routine testing should carry a right of refusal. However, this, too, can take several forms -- some must be signed by the woman and documented in medical records. Recently, this policy has gained the support of some policy makers and medical groups.

Although there are several ways that a universal testing procedure would be implemented, it is likely that there could be a decreased emphasis on pre-test counseling and informed consent. Additionally, the use of documented refusals with no protection from legal action can be more coercive or intimidating than voluntary testing, particularly for immigrant women.

Some policymakers and healthcare providers argue that universal or routine testing could further decrease vertical transmission. Many argue that HIV is no different than other diseases women are tested for during pregnancy and that counseling is difficult or embarrassing. However, there are strong reasons why individual counseling in the context of HIV testing during pregnancy and infancy needs to be maintained.

In spite of much better understanding of HIV disease and growing acceptance of people living with HIV, stigma against women living with HIV is still strong, especially in some cultures and communities. There is documented evidence that women who disclose their positive status have experienced discrimination, abandonment, severe psychological reactions, and even domestic violence. Appropriate counseling is key to helping women assess the risks and benefits of knowing their status and develop the necessary support systems in their lives. Support is essential for most pregnant women to take full advantage of quality prenatal HIV care and the advances in the prevention of vertical transmission.

Mandatory testing: In this setting, all pregnant women and/or newborns get tested for HIV. Mandatory testing generally means that there are sanctions or penalties for those who refuse to test, including criminal penalties. Currently, New York and Connecticut are the only two states with mandatory testing policies.

A testing policy that doesn't allow a woman to make informed decisions violates her right to be an active participant in her own healthcare. Coercive HIV testing also runs the risk of alienating women from HIV testing and appropriate follow-up care. This may be especially true for certain groups of women, including immigrants.

In the worst cases, coercive, involuntary, or poorly handled testing could cause a woman to leave care altogether. If the goal of public health efforts is to ensure that every pregnant woman is able to access and use the information and care that will benefit her and her unborn child, efforts to mandate testing or treatment should be defeated.

Access to Care

No form of testing can guarantee the care necessary to prevent transmission or benefit a woman's health. Women who can't get prenatal care should be offered an HIV test in any care setting they may have access to, but the offer of a test in such settings may be much less likely to happen. Women of color, low-income women and women living with HIV have less access to quality prenatal care and HIV care compared to other women. People without health insurance are disproportionately people of color. In addition, even with insurance, people of color and women still often receive substandard healthcare.

Reducing vertical transmission of HIV requires a focus on access to quality healthcare for all pregnant women. In a recent forum hosted by Project Inform, women and clinicians alike agreed that the best means of preventing vertical transmission was to ensure access to high quality, woman and family-centered healthcare.

Policy Issues

Although the testing of pregnant women and newborns has long been debated in public policy, several factors caused a heightened focus on the issue in the early 1990s. A major push to mandate testing was driven by a study showing decreased vertical transmission when women and their newborns were treated with AZT (zidovudine, Retrovir). In spite of misguided efforts to use the results of the trial to mandate testing, the Public Health Service (PHS) issued rational guidelines calling for universal HIV counseling and voluntary testing of pregnant women in 1995.

Since the implementation of these guidelines, and further advances in the knowledge of how to prevent vertical transmission, there have been dramatic decreases in the rate of mother-to-child HIV transmission in the US. Regardless, the push for mandatory testing and/or elimination of informed consent persists. There was an amendment attached to the Ryan White CARE Act in 1996 that attempted to tie federal funding to a mandate that states test all newborns for HIV. The amendment also called for the Institutes of Medicine (IOM) to report on the state of HIV vertical transmission in the U.S.

The IOM Report: Setting a New Standard?

In October of 1998, the IOM released its report, Reducing the Odds: Preventing Perinatal Transmission of HIV in the United States. The IOM acknowledged that substantial progress had been made in reducing vertical HIV transmission. However, it identified several barriers to reaching full implementation of universal counseling and voluntary testing of pregnant women including:

• Financial and other access barriers for women seeking prenatal care;
• Time and other constraints that may discourage providers from counseling women appropriately about HIV disease and the importance of testing;
• Language and cultural barriers at prenatal care sites that may cause women to refuse testing;
• Financial and logistical problems that may make testing and treatment difficult.

In its conclusion, the IOM recommended universal HIV testing, with patient notification, as a routine component of prenatal care. It also de-emphasized the need for counseling, going so far as to state that it is too difficult and even "embarrassing" for providers. The American Academy of Pediatrics and the American Medical Association support these recommendations. In addition, the American College of Obstetricians and Gynecologists has recently advocated routine HIV testing of all women during gynecological exams, in addition to universal testing of pregnant women.

However, many advocates continue to argue that voluntary testing with appropriate counseling is working. They argue that most of the barriers outlined in the IOM report are not addressed by universal testing. To eliminate or de-emphasize pre-test counseling and informed consent may work for providers who find it too difficult, but for pregnant women it could result in the loss of a woman's right to be an active participant in her healthcare. Again, in the worst case scenario, it could drive women to, or deter women from seeking quality healthcare, including prenatal care.

Where We Are Now

This issue continues to be debated at the federal and state levels. Some members of Congress may try to implement policies on HIV testing of pregnant women and/or newborns as part of this year's reauthorization of the Ryan White CARE Act. Meanwhile, the Centers for Disease Control and Prevention (CDC) is expected to release revised guidelines of HIV testing for pregnant women shortly. In addition, legislation has been introduced in some states regarding mandatory testing of pregnant women and/or newborns, and a routine testing bill is being debated by the California State Legislature.

Project Inform will continue to monitor these debates at the federal and state levels. You can play a role in this effort by joining the Treatment Action Network (TAN), and letting your elected officials know how these policies affect you and those you care about. To join TAN, call Ryan Clary at (415) 558-8669 x224 or e-mail tan@projectinform.org.

Back to the Project Inform Perspective August 2000 contents page.