Pregnant women with HIV routinely find their human and civil rights sacrificed in the name of the health of the fetuses they carry. The case of Ms. Tuleh, the Cameroonian immigrant who was recently held in federal detention for the crime of being HIV positive and pregnant, has been a vivid reminder of this reality. Prenatal HIV testing is often the point of departure for the perceived tension between the rights of the mother and the health of the unborn child.
Two dominant schemas, opt-in and opt-out testing, capture the different approaches to prenatal HIV testing. Under an opt-in approach, health care personnel provide HIV counseling, offer all pregnant women an HIV test, and ask for her consent either orally or in writing. Consent must be explicit. In an opt-out jurisdiction, medical providers perform an HIV test after notifying the patient that the test will be performed unless she explicitly declines testing.
In 2006 the CDC recommended opt-out testing of all pregnant women. As an incentive, millions of federal dollars became available under the Ryan White HIV/AIDS Treatment Modernization Act of 2006 for states implementing both opt-out testing of pregnant women and newborn testing. Consequently, many states are moving in this direction. The most recent legislative season saw seven states consider opt-out prenatal testing bills, at least two of which (Colorado and Montana) have been passed and signed as of this writing.
Yet this paradigm shift sacrifices women’s rights, as well as the scaffolding of strong provider-patient relationships. With perinatal HIV transmission at an all-time low, states have an opportunity to commit to positive health outcomes for mothers and children while respecting basic principles of consent for HIV testing. This can be done by returning to opt-in testing through universally counseling pregnant women about HIV, and encouraging all women to be tested.
It should not be surprising that the vast majority of pregnant women who are offered an HIV test accept testing. One study found that when offered an HIV test, more than 86 percent of women agreed to be tested. Of those who declined testing, the reasons most frequently given for doing so were: no perceived risk, administrative and scheduling difficulties, prior testing, and lack of endorsement of testing by provider. These results indicate that with the systematic removal of institutional barriers to testing, implementation of systems to streamline and facilitate testing, and universal offer and endorsement of testing by health care providers, regardless of perceived risk, we could achieve nearly perfect testing rates during pregnancy with an opt-in approach.
Meanwhile, compelling HIV testing runs the risk of alienating patients from their medical care provider, and in turn driving them from care. And while it is true that the vast majority of women will accept HIV testing, especially if the conditions outlined above are met, it is also true that a small minority of women will likely decline testing for fear of the results. Their fears may be grounded in eminently practical considerations. A woman experiencing intimate partner violence, for instance, might well fear that an HIV diagnosis would trigger an escalation of violence. Another woman may reasonably fear that her job will be in peril if she learns that she has HIV. Others may fear that estrangement from family and community would flow from an HIV diagnosis, and might choose ignorance over isolation.
Though an opt-out schema, in theory, promotes voluntary testing, in actuality the possibilities for confusion, missed communication, or coercion are great. Patients of limited English proficiency might easily not understand when their provider hastily informs them that they will be given an HIV test. Rushed providers are likely to de-emphasize the HIV test, perhaps mentioning it amidst a steady stream of information which the patient may not fully absorb. In the worst case scenario, a patient who shows reluctance to test will be coerced by the provider, leaving the patient feeling helpless, resentful, and mistrusting.
For the small minority of women who are reluctant to test, coercion and/or poor communication are neither appropriate nor effective bases upon which to build a provider-patient relationship, or to begin the process of long-term care and treatment. It is precisely in those cases where women fear testing or the test result that mandatory or coerced HIV testing drives a wedge between patient and health care provider.
By contrast, opt-in schemas, which strive for universal testing but allows for patient autonomy and freedom, puts the duty on the health care provider to recognize the distinct needs of individual patients. If the provider affirmatively offers the test and obtains the patient’s consent to testing, an opportunity is presented for the provider to recommend HIV testing as part of routine prenatal care generally, and to respond to specific fears or concerns on the part of the individual patient. This way the provider encourages patient trust, an element essential to the future care and treatment of the woman and her baby – and to the successful prevention of mother-to-child transmission.
While this prescription may seem to place unreasonable demands on health care providers, it is the only way to ensure that women who test positive do not abandon the health care system. If in our haste to boost testing rates we sacrifice the pregnant woman’s or the new mother’s trust in her provider, and ignore the importance of her buy-in and participation in her own care, we risk alienating her from the health care system. If this happens, then we are no closer to our goal of reducing mother-to-child transmission.
HIV Law Project’s recent report on this topic can be found here.