UMDNJ Magazine Fall/Winter 2011·2012

Five Questions

With

Carolyn Burr

as told to Barbara Hurley

Carolyn K. Burr, EdD, RN, is the deputy director of the François-Xavier Bagnoud (FXB) Center at the School of Nursing. The FXB Center's goal is to improve the health of vulnerable women, children, youth and families — including those infected/affected by HIV — and to build capacity in the communities and systems that serve them. Burr is a pediatric nurse practitioner and adult educator who has been actively educating health care providers about HIV/AIDS for 20 years. As principal investigator of CDC-funded grants since 1999, she works with health care providers and hospitals across the U.S. to implement innovative approaches that support the goals of eliminating perinatal HIV infection in the U.S. and supporting routine HIV testing in health care settings.

Tell me about the law in New Jersey mandating HIV testing for pregnant women.

Offering HIV testing to pregnant women has been the New Jersey law for many years, but since 2008 legislation stated that HIV testing should be included in routine prenatal testing using an "opt-out" approach. The HIV test is done routinely along with the standard battery of prenatal blood tests, unless the woman declines. The provider must give the patient information about HIV/AIDS, the benefits of testing for her and her baby, the available medical treatment for her, and interventions that reduce the infant's risk of HIV infection.

What about those women who "opt out?"

The law says that testing of pregnant women for HIV shall "be voluntary and free of coercion." Physicians caring for pregnant women explain to their patients that they will be tested unless they choose to opt out. Actually, few decline. It's the women who come to the emergency room to deliver their babies never having been seen by a physician or other health care provider. These are the ones who have fallen through the cracks. So it's really an issue of promoting prenatal care. The earlier a woman is tested, the earlier treatment, if needed, can begin, and the better for the baby she is carrying.

How has FXB been involved?

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The FXB Center is a leader on a local level of a process called Fetal and Infant Mortality Review (FIMR)-HIV. The project started in 2010 and was funded by the New Jersey Department of Health and Senior Services to review the care and services for pregnant women and their infants when an infant is diagnosed with HIV infection or a mother with HIV receives care very late in her pregnancy. The goal is to identify the circumstances that prevented some women from seeking prenatal care. The process starts with an in depth review of the mother's chart and the baby's care. But an important element is added. The mother is interviewed, respecting her confidentiality. She is given a voice, and we listen. These are women who have not been well-served by the system. This is a chance to look at how a woman's needs were not met, and why. What went on? Why didn't she get care? How did we miss the opportunity to serve this woman? We know what we think, but we try to see things from her perspective.

What happens to the information gained from the interviews?

We're not about assigning blame to either the patients or the providers. We're focused on the system going forward and how to do things better. The information from the interviews is passed on to the Case Review Team (CRT) that includes clinicians from University and Newark Beth Israel hospitals, and representatives from mental health agencies, DYFS, and also FXB. The CRT will review a dozen or so cases to look for common themes and trends.

The CRT distills the information so that recommendations can be sent to the Community Action Team. This group includes those at the State level in positions to make changes, like New Jersey's health department. FXB is represented there as well. It's important to understand that we are working to understand the circumstances of individual cases and using those findings to recommend improvements in systems of care. The goal is to develop a plan for community action and to mobilize.

We don't hear much about AIDS in children anymore. Why is that?

It's because almost all pregnant women have a routine HIV test during prenatal care. If a woman has HIV infection, she can take antiretroviral (ARV) medication during pregnancy and intravenously during labor and delivery. And the baby takes ARVs for six weeks. When that happens, the HIV transmission rate from mom to baby is 1 or 2 percent. In the bad old days before treatment, the rate was 25 percent. When mom doesn't get prenatal care and is first tested in labor and delivery, ARV treatment then, and treatment for the baby, can still decrease the rate to 9 to 13 percent, better but not nearly as good as it can be. Since 1994 the number of children with AIDS has dropped 95 percent. We're very close to eliminating perinatal HIV in the U.S. It would be wonderful to reach that goal. The FIMR-HIV methodology is one way of learning what we need to do to get there.