Appendix H Florida Conference Summary
Michael Stoto
On April 16, 1998, the Institute of Medicine (IOM) Committee on Perinatal Transmission of HIV held a public hearing in conjunction with the Florida HIV Conference in Orlando. Florida Title IV program directors and others were notified about the hearing in advance of the meeting, and others were told of the hearing at the meeting itself. The comments and views expressed below are those of the participants.
Counseling And Offering Of HIV Test
In October 1996, Florida enacted a law requiring that all women in prenatal care be counseled and offered an HIV test. For those who refuse, a document of the patient's refusal and signature must be obtained and entered into the patient's record. The offering and acceptance of an HIV test are different in the public and private sector. Almost all women in public sector prenatal care are offered an HIV test, and less than 5% of these women refuse testing. Women who receive prenatal care in the private sector, on the other hand, are less likely to be offered a test.
According to the participants, prenatal tests are offered in the private sector, but in different ways. Some women are given a blanket consent form for all prenatal tests, including the HIV test, although this practice is illegal according to one participant. In other areas, nurses counsel women about the HIV test, as part of the setup for their first prenatal care visit with a physician.
One participant said that she had mixed feelings about such "routine" testing;
pre-test counseling is important, she says, but so is getting tested. She suggests a shortened version of pre-test counseling, covering only essential points.
A Ryan White-funded program in the Tampa area provides nurse case managers, and has 100% compliance with HIV testing in public settings. In contrast, 85% to 90% of the women in the private sector accept the test. The program also works with private sector physicians and group practices to improve compliance with the state law. The nurses visit offices, do chart audits, and make recommendations on how to improve testing rates. Only about ten group practices have been visited to date, but these were chosen because of the large number of births they are responsible for. The nurses are viewed partly as people who can help the practices with HIV testing and link them with specialized HIV care when necessary, and partly as government auditors. The program also provides services to pregnant women in the private sector. It provides case management services for private prenatal patients (two patients so far), programs to help the baby's transition into a Title IV program, and supplementary services in conjunction with care from their private prenatal providers.
Mandatory Newborn Testing
One participant suggested that mandatory newborn testing to detect babies whose mothers were not tested under the voluntary system be considered. Another responded that a colleague of hers from New York had said that the "unblinding" of newborn tests in that state was supposed to expand access to care for both mothers and babies, but that resources were not available for this purpose.
Undocumented Women
"Undocumented" women (illegal aliens) make up a substantial part of the prenatal HIV caseload. At the University of Miami Hospital, every woman giving birth is offered an HIV test, and many of the HIV-positive women identified in this way are undocumented women who were not tested in pregnancy. Such women do not seek out prenatal care because they presume that they are not eligible for services and, more importantly, they fear discovery of their status. In Miami, they are no longer covered by Medicaid. Some cities, however, are making an effort to provide care for undocumented women. Officials in Miami have found ways to get most of these women into care through Ryan White resources, drug companies' compassionate care programs, and charitable organizations. The Title IV program in Orlando brings undocumented women into care through community fund-raising, churches, the United Way, and so on. The Tampa program, in contrast, does not have resources to treat undocumented women.
Prisons
Florida prison officials make a special effort to ensure that all pregnant women are tested for HIV, and believe that almost all of them are tested. Testing is not, however, strictly required. Incarcerated women are given pre-test counseling in a group before their first physician visit.
Barriers To Care
Participants said that domestic violence is one of the most important barriers to testing. Many women do not disclose the results of their HIV test to their partners. They fear the results and lack the skills to negotiate sexual behavior, and there are no resources to guarantee women a safe environment. One participant said there needs to be consideration of whom to tell and how to tell them, and an escape plan for when partners become violent.
Participants feel that few HIV-positive mothers in Florida are injection drug users, although many of their partners are. Some use non-injection drugs such as crack.
Outside of the Miami and Tampa areas, perinatal HIV care is less intense than in other areas. In the Gainesville area, for instance, one small HIV center deals with cases from 13 counties. The doctors in this area rarely see HIV cases, and hence are not proficient at pre-test counseling. There are, however, two or three new HIV cases (in adults) per week, about one quarter of whom are seen by private physicians. Despite the presence of a state university medical center, the system has nothing to offer to these private patients.
There is an increasing number of repeat pregnancies in HIV-infected women in Florida, according to participants, and some of these are planned. Women see themselves as having more options since the ACTG 076 (AIDS Clinical Trials Group protocol number 76) results have been made public. In Orlando, there are few abortions among HIV-infected women, in large part because there are no resources to pay for them.
Site Addresses And Participants
Representing the committee were Ezra Davidson, Jr., committee vice-chair, and Michael Stoto, study director.
Florida Department of Corrections
Office of Health Services
2601 Blair Stone Road
Tallahassee, FL 32399-2500
Sara A. Straub
Florida Family AIDS Network
College of Public Health
University of South Florida
Tampa, FL 33612-3805
Jennifer Allen, Managed Care Coordinator
Marylin Merida, Program Coordinator
Orlando Regional Healthcare System
Nurse Educator
600 Courtland Street
Suite 500
Orlando, FL 32804
Suellen T. Cirelli, R.N., B.S.N., ACRN
St. Joseph's Women's Hospital
HIV Obstetrical Liaison/ Perinatal HIV Prevention Program
Social Services Department
3030 W. Martin Luther King Jr. Boulevard
Tampa, FL 33607
Julie Baltzell, R.N.
Shands Hospital
Department of Obstetrics and Gynecology Women's Clinic
Box 100383 JHMHC, University of Florida
Gainesville, FL 32610
Diane Biernacki, R.N., RDMS
University of Miami
Department of Family Medicine
1400 NW 10th Avenue
Suite 603B
Miami, FL 33136
Diana Travieso-Palow, M.S., R.N.
University of South Florida/CMS Department of Pediatrics
One Davis Boulevard, Suite 502
Tampa, FL 33505
Maite McLeod, R.N., B.S.N., HIV Perinatal Nurse Case Manager