Appendix F Alabama Site Visit Summary

Amy Fine

On April 27, 1998, a site visit to Alabama was conducted on behalf of the Institute of Medicine (IOM) Committee on Perinatal Transmission of HIV. Its purpose was to seek input from public health officials, practitioners, and patients on the implementation of the Public Health Service (PHS) recommendations on perinatal HIV transmission and on any additional efforts/means to reduce perinatal transmission. Alabama was chosen for a site visit because it is a southern state with a large rural population, and, as such, represents the region with the greatest recent increases in perinatal HIV transmission rates. Site visit discussions were held both in Birmingham (in Jefferson County) and in Eutaw (a small community in rural Greene County). Participants included representatives from the University of Alabama at Birmingham's 1917 Clinic, the University of Alabama's Department of Obstetrics and Gynecology, the Alabama Department of Public Health, Jefferson County Department of Health, the Children's Hospital of Alabama, St. George's Clinic at Cooper Green Hospital, and patients and staff of West Alabama Health Services.

HIV/AIDS Trends In Alabama

The number of reported HIV/AIDS cases in Alabama rose dramatically in the 1980s, and has since peaked, or at least plateaued, in the mid-1990s, with approximately 1,100 cases reported annually between 1995 and 1997. A total of 9,646 HIV/AIDS cases (5,028 AIDS cases and 4,618 HIV infections) had been reported statewide through May 25, 1998. While HIV/AIDS cases have been reported in all but one county in the state, infection rates in southern Alabama are



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--> Appendix F Alabama Site Visit Summary Amy Fine On April 27, 1998, a site visit to Alabama was conducted on behalf of the Institute of Medicine (IOM) Committee on Perinatal Transmission of HIV. Its purpose was to seek input from public health officials, practitioners, and patients on the implementation of the Public Health Service (PHS) recommendations on perinatal HIV transmission and on any additional efforts/means to reduce perinatal transmission. Alabama was chosen for a site visit because it is a southern state with a large rural population, and, as such, represents the region with the greatest recent increases in perinatal HIV transmission rates. Site visit discussions were held both in Birmingham (in Jefferson County) and in Eutaw (a small community in rural Greene County). Participants included representatives from the University of Alabama at Birmingham's 1917 Clinic, the University of Alabama's Department of Obstetrics and Gynecology, the Alabama Department of Public Health, Jefferson County Department of Health, the Children's Hospital of Alabama, St. George's Clinic at Cooper Green Hospital, and patients and staff of West Alabama Health Services. HIV/AIDS Trends In Alabama The number of reported HIV/AIDS cases in Alabama rose dramatically in the 1980s, and has since peaked, or at least plateaued, in the mid-1990s, with approximately 1,100 cases reported annually between 1995 and 1997. A total of 9,646 HIV/AIDS cases (5,028 AIDS cases and 4,618 HIV infections) had been reported statewide through May 25, 1998. While HIV/AIDS cases have been reported in all but one county in the state, infection rates in southern Alabama are

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--> about twice those in the northern part of the state. In general, the epidemic in the southern part of the state reflects a disproportional HIV/AIDS frequency among African-American women, while in the northern part of the state it is more an epidemic among white, homosexual men. Through May 25, 1998, a total of 1,933 female HIV/AIDS cases were reported in Alabama. HIV/AIDS seroprevalence rates among childbearing women in the state are approximately 1/1,000, similar to the national rate. Among African-American childbearing women, however, the seroprevalence rate is 1/250, considerably higher than national rates. Thus, the state's racial disparity among HIV-infected women is particularly large. The rate of HIV/AIDS infection among women has increased steadily since 1986. A total of 105 pediatric HIV/AIDS cases have been reported in Alabama since 1985. In contrast to trends for the adult population, the annual number of reported pediatric cases in Alabama peaked in the early 1990s (with 17 HIV/AIDS cases reported in 1990 and 16 in 1991), declined to 11 cases in 1995, and then to 4 cases in 1996 and 1 in 1997. It is important to note that reported pediatric HIV/AIDS cases have declined, even though the number of infants reported as perinatally exposed to HIV has continued to increase steadily—from 51 in 1994 to 67 in 1997. Among those infants known to be perinatally exposed, the proportion receiving zidovudine (ZDV) at delivery has increased from approximately 6% in 1994 to 63% in 1997. The number of infants receiving ZDV after delivery rose as well, from 20% in 1994 to 96% in 1997. These findings are consistent with the implementation of PHS recommendations for perinatal HIV exposure. One emerging trend cited by perinatal care providers is that over the past 18 months there has been an apparent increase in the number of HIV-infected women who choose to continue their pregnancies, rather than opt for termination. In Alabama in 1997, the greatest percentage of reported HIV counseling and testing was performed in family planning clinics (41%), followed by STD (sexually transmitted disease) clinics (35%), and prenatal care sites (12%). Prisons accounted for only 3% of counseling and testing performed, community health centers for 2%; TB (tuberculosis) programs for 2%, and private physicians for only 4% of the total. Data on receipt of prenatal care indicate that in 1996, 5.6% of live births in Alabama were to mothers who received inadequate prenatal care, as measured by the Kessner index. Adequacy of care varied considerably between the two counties visited by the committee, with 12% of births in rural Greene County considered to have had inadequate care, but only 4% of births in urban Jefferson County. These data are important in considering potential barriers to and solutions for improving perinatal HIV transmission rates. Implementation Of PHS Guidelines The site visit team sought information on the extent to which the July 1995 PHS recommendations for universal counseling and voluntary HIV testing of

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--> pregnant women have been implemented in Alabama. More specifically, participants reported on (1) incorporation of PHS guidelines into other guidelines or protocols; (2) provider implementation of counseling and testing guidelines; (3) the proportion of pregnant women tested at different sites and reasons for variations; (4) acceptance of treatment and reasons for refusal; and (5) reactions to possible variations in guidelines. Incorporation of Guidelines Participants noted that Alabama Department of Public Health (ADPH), the Jefferson Country Department of Health (JCDH), and West Alabama Health Services (WAHS) (a private, non-profit community health provider), have all incorporated the PHS guidelines into their own guidelines or protocols. The ADPH has undertaken several measures. First, shortly after the AIDS Clinical Trials Group protocol number 76 (ACTG 076) was published, the state health officer and the state perinatal advisory committee sent out a joint letter to all health care providers in Alabama recommending that they follow the PHS recommended protocol. The ADPH has also incorporated PHS guidelines into guidelines for public health clinics throughout the state. (Local public health clinics throughout the state are actually operated by the ADPH. Only Mobile and Jefferson counties have relatively autonomous local health departments.) The ADPH guidelines, Comprehensive Health Record Instruction Manual (CHR), require HIV counseling and the offering of HIV testing within the first two prenatal visits. Additional HIV testing will be offered in later visits if clinically indicated. During the postpartum visit, offering of HIV test and counseling are required. Finally, the ADPH supported legislation being considered by the Alabama legislature at the time of the IOM site visit. The legislation, which did not come up for a vote during the recent legislative session, would have given the state board of health the authority to require routine testing for specified notifiable diseases. If the law had passed, then the board of health would likely have required routine HIV testing of all pregnant women, with the patients having the right to refuse testing. The JCDH has incorporated the PHS recommendations into its clinical management protocols for care of its maternity patients. The JCDH protocol currently in use was developed in June 1995 and includes the following components: (1) a risk assessment at the initial visit for all maternity patients, with risk status recorded in the county's automated record system maintained by the JCDH and the University of Alabama at Birmingham Department of Obstetrics and Gynecology; (2) a strong recommendation that all prenatal patients receive HIV serology testing; (3) routinely obtained written informed consent for confidential HIV serology testing on admission; (4) clear notification to patients that any HIV information obtained will be shared with the hospital responsible for delivery and with the high-risk obstetrics clinic; (5) required pre-test counseling, with components

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--> specified; (6) required post-test counseling, regardless of results; and (7) referral of all HIV-infected women to the county's special HIV prenatal clinic. The WAHS provides an example of how PHS recommendations have been incorporated in clinical guidelines for a private, non-profit agency serving a large number of pregnant women in a rural setting. WAHS offers a comprehensive prenatal care program that incorporates routine HIV/AIDS education/counseling and voluntary testing. Guideline Implementation and Test Acceptance Despite incorporation of guidelines at state and county levels and within some parts of the private sector, those interviewed were in agreement that provider implementation of HIV counseling and testing appears to be quite uneven in both the public and the private sectors, and that this variation is probably the most important factor in determining test acceptance. Participants believed that in clinics where providers routinely offer testing and educate women about the health benefits, particularly for the baby, the proportion of women tested was extremely high. Participants, however, thought that some providers offer testing based on assessed risk while other providers (particularly within the private sector) routinely test without pre-test counseling or informed consent. Some providers routinely provide a comprehensive HIV education/counseling program, while others inform patients by leaving brochures in the waiting room. Interviewees reported that some physicians refuse to see maternity patients unless they are tested for HIV, thus making the test mandatory. At the other extreme, some physicians refuse to treat women once they test positive. Participants expressed the opinion that further provider education is needed to make practice more consistent with the PHS guidelines. In addition, some believed that routine testing (i.e., including HIV as part of a regular prenatal test panel, with patient opt-out provisions) was the best way to improve test rates. Finally, participants agreed that although current implementation of the PHS recommendations on counseling and testing is less than ideal, the trend is favorable. With regard to test acceptance, participants felt that if properly counseled, the overwhelming majority of pregnant women would accept testing. Barriers to acceptance include lack of trust in the provider, fear of blood tests, late entry into prenatal care, religious beliefs, fear of the disease itself, and the legacy of the Tuskegee syphilis study. Proportion of Childbearing Women Tested Public health officials noted that statewide, only 55% to 65% of public health maternity patients were tested or knew their HIV status. In several counties, maternity patients are referred to STD clinics for HIV counseling and testing. Asked whether this might be a barrier to testing because of the stigma

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--> associated with STDs, they responded that it may be a barrier and this is a local decision. In Jefferson County, testing among the county's eight clinic sites has been uneven as well. The percentage of JCDH maternity patients tested increased from 45% in July 1995–June 1996, to 69% in November 1997–March 1998; however, rates vary by site. Recent data from the county's Obstetrical Automated Record (OBAR) system indicate that among the eight clinic sites, the proportion of maternity patients not tested ranges from 2% to 66%. To address variations in testing across sites, in November 1997 the health department held an in-service education program aimed at changing provider behavior. It is important to note that on an annual basis, clinics provide maternity care to about 5,000 pregnant women in Jefferson County, and to 30,000 women statewide (roughly half of all childbearing women in each jurisdiction). Changes in implementation of counseling and testing practices in the public sector could thus have a profound impact on overall perinatal HIV transmission in Alabama. With regard to testing at WAHS, the director stated that under its comprehensive counseling/education program, 99% of WAHS maternity patients voluntarily accept testing. Finally, although no data were available on the proportion of private maternity patients in Jefferson County or in the state who received HIV counseling and testing, public health officials noted that private providers clearly are testing, using state labs, and reporting cases to the state. Acceptance of Therapy On the issue of acceptance of ZDV and other, complex therapies (combination, protease inhibitor-containing regimens), all those interviewed agreed that once HIV-infected pregnant women receive test results, most accept therapies. Reasons given for non-acceptance include fear of loss of confidentiality for those being in small communities; fear of domestic violence; and fear, denial, and depression about the disease itself. Participants noted the importance of providing a smooth transition from testing to treatment, offering comprehensive primary care to the HIV-infected woman and her infant, establishing a trusting provider–patient relationship, and providing needed mental health and social services. Participants indicated that both ethical and resource issues impact whether mono- or combination antiretroviral therapy is offered. In Jefferson County, while the HIV high-risk centers are offering complex therapies, the JCDH reimburses only for ZDV, primarily because of resource constraints. Some providers also are concerned that multiple therapies may be considered experimental, and so are reluctant to prescribe them for ethical reasons or fear of liability. Participants pointed to a growing need for resources to sustain care. They were particularly concerned about insufficient funding to pay for care and medications (especially combination therapies) for HIV-infected mothers once they

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--> are six weeks postpartum and no longer Medicaid-eligible. Interviewees stressed that federal Ryan White funds had been essential to building and maintaining current services and to meeting future need. On the issue of general barriers to care, particularly among poor, rural African Americans, the following observations were offered. There is not a culture of accessing primary care in general and maternity services in particular. Rather, birthing is something that ''mama and grandmama" used to assist with; family members' attitudes continue to have substantial influence over whether or not a woman seeks prenatal care. In addition, for many, educational levels are very low, so health education must be tailored to make sure patients can understand and follow through with care. Reactions to Possible Variations in Guidelines At several points during the site visit, participants were asked their opinions regarding possible changes in the PHS guidelines. Most providers felt that mandated testing is not desirable. One participant said, "I don't think we have to resort to that." Others noted that mandatory testing could exacerbate the problem of women being tested without their knowledge, which in turn could seriously undermine patient–provider trust. It was pointed out that the real focus should not be on mandatory testing, but rather on how the term "voluntary" is defined and implemented. Most participants preferred maintaining a voluntary approach through routine testing (as part of a standard prenatal test panel), with a patient opt-out provision. The Emory University protocol calls for universal counseling and routine testing, with an exclusion consent. One participant expressed concern that if offered a list of tests from which they could opt out, some patients would refuse syphilis testing. In rural Alabama, people refuse some testing because of the Tuskegee history. Others refuse prenatal genetic testing because they will not terminate the pregnancy regardless of the test outcome. Finally, one participant suggested that financial incentives or disincentives might prod providers to routinely include HIV testing. Models That Work Throughout the site visit, participants provided examples of how innovative programs are successfully addressing perinatal HIV transmission. Among the highlights are the following: In Jefferson County, through a concerted outreach effort to the faith community, a network of AIDS care teams has been established. The Care Team Network project has a two-pronged focus: (1) intensive education and outreach to local clergy (aimed at changing the role of church communities from "among the least supportive" of people with HIV/AIDS to among the most supportive); and

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--> (2) organizing church/synagogue-based AIDS care teams to provide emotional support and assistance to people with AIDS. Recently, the AIDS teams have been "mainstreamed" into a general care team network that assists victims of other chronic conditions such as Alzheimer's disease. Again in Jefferson County, a broad range of HIV care providers working in a variety of clinical settings has developed a well-coordinated system of care for HIV-infected women and their children. These programs serve local HIV/AIDS patients as well as those referred from northern and southern Alabama. Patients travel as much as four to five hours to receive integrated care in Birmingham's HIV centers. For all patients, whether local or referred, attention has been given to assuring smooth transitions from testing to primary and specialty care; providing long-term follow-up care; and providing an array of support services including transportation, emotional support, and funding for needed medications. Included among the collaborating institutions are the "1917 Clinic" at the University of Alabama at Birmingham, the JCDH, St. George's Clinic at Cooper Green Hospital, and the Children's Hospital of Alabama. In rural Greene County, WAHS has integrated HIV/AIDS education, counseling and testing into a well-developed comprehensive prenatal care program. Using a model developed under a Ford Foundation grant, program components include outreach and home visiting, the use of clearly laid out educational protocols, and monitoring of quality assurance. WAHS achieves near universal prenatal testing among its maternity patients. Site Addresses And Participants The IOM committee members who visited the programs in Alabama were Lorraine Klerman and Sten Vermund. Others present from the IOM were Michael Stoto, study director, Donna Almario, and Amy Fine (consultant). 1917 Clinic 908 South 20th Street 189 CCB Birmingham, AL 35294-2050 Malcolm L. Marler, Chaplain Education Specialist, Infectious Disease Phyllis Percy, NP Michael Saag, MD, 1917 Clinic Director, Professor, Infectious Disease Kathleen Squires, MD, Associate Professor, Infectious Disease Alabama Department of Public Health 201 Monroe Street, Suite 1400 Montgomery, AL 36104 Jane Cheeks, MPH, Director, Division of HIV/AIDS, Richard Holmes, MPH, Director, HIV/AIDS Surveillance

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--> St. George's Clinic, Cooper Green Hospital 1515 6th Ave. S. Birmingham, AL 35233 Jane Mobley, MD University of Alabama at Birmingham 618 South 20th Street 560 OHB Birmingham, AL 35294-7333 Robert L. Goldenberg, MD, Professor and Chair, OB/GYN West Alabama Health Services P.O. Box 599 Eutaw, AL 35462 Sandral Hullett, MD, MPH, Director