Appendix G South Texas Site Visit Summary

Donna Almario

On May 10, 1998, the Institute of Medicine's Committee on Perinatal Transmission of HIV visited San Antonio, Texas, to examine issues regarding the perinatal transmission of HIV in South Texas. Compared to previous site visits in New York, New Jersey, and Alabama, South Texas had similar issues with regard to providing care for pregnant women and their babies. Unlike the other sites, though, South Texas encountered additional barriers in providing care because of its vast area, low prevalence of HIV in women, and proximity to Mexico.

Demographics Of HIV In South Texas

Geographically, South Texas is a large yet sparsely populated area that includes 54,000 square miles (about the size of New York State). Included in this area is the region around the Texas-Mexico border, also known as La Frontera. The population includes about 55% to 60% Mexican Americans and 7% African Americans. Economically, this area has an unemployment rate of 20% to 25%, and three of the poorest counties in the nation.

The primary mode of HIV transmission in women in this area is through sex. Few cases (less than 2%) are directly due to injection drug use. HIV-positive men usually do not know they are infected and some are closeted bisexuals. When families come in for care, fathers are rarely seen.

Implementation Of PHS Guidelines

Prior to 1995, about two-thirds of children diagnosed with AIDS had mothers who were identified previously as being HIV-positive. Since the release of the



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--> Appendix G South Texas Site Visit Summary Donna Almario On May 10, 1998, the Institute of Medicine's Committee on Perinatal Transmission of HIV visited San Antonio, Texas, to examine issues regarding the perinatal transmission of HIV in South Texas. Compared to previous site visits in New York, New Jersey, and Alabama, South Texas had similar issues with regard to providing care for pregnant women and their babies. Unlike the other sites, though, South Texas encountered additional barriers in providing care because of its vast area, low prevalence of HIV in women, and proximity to Mexico. Demographics Of HIV In South Texas Geographically, South Texas is a large yet sparsely populated area that includes 54,000 square miles (about the size of New York State). Included in this area is the region around the Texas-Mexico border, also known as La Frontera. The population includes about 55% to 60% Mexican Americans and 7% African Americans. Economically, this area has an unemployment rate of 20% to 25%, and three of the poorest counties in the nation. The primary mode of HIV transmission in women in this area is through sex. Few cases (less than 2%) are directly due to injection drug use. HIV-positive men usually do not know they are infected and some are closeted bisexuals. When families come in for care, fathers are rarely seen. Implementation Of PHS Guidelines Prior to 1995, about two-thirds of children diagnosed with AIDS had mothers who were identified previously as being HIV-positive. Since the release of the

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--> Public Health Service (PHS) guidelines, birth certificates record whether or not an HIV test was done prenatally and during delivery. Additionally, the Texas State legislature passed a law in February 1996 requiring routine HIV testing with notification of all pregnant women at the first prenatal visit and during delivery, except for those who specifically opt out. Since 1995, the number of children diagnosed with AIDS has dropped. A provider from the University Health Center who cares for diabetic and other complicated pregnancies reported that about 99% of these women are tested for HIV. In Centro del Barrio, a clinic that provides services to poor women in San Antonio and Bexar County, ten women (95%) are tested per month, and so far no one has tested positive. Family Health Services, part of the city's health department, delivers 4,000 of the 20,000 births in the county. They report that all pregnant women are offered the HIV test and 90% to 95% of these women accept testing. However birth certificates record that only 85% of pregnant women were tested. One of the physicians who provides care for HIV-infected women reported that 95% of women who are offered the test accept it. The other 5% refuse to be tested because of stigma, discrimination, fear of breach of confidentiality, and belief that they are not at risk. Of the pregnant women tested and notified of their positive result, 5% refused zidovudine (ZDV) therapy during pregnancy and very few refused postnatal ZDV treatment for their babies. Most physicians use ZDV alone, although an increasing number use triple combination therapy. When informed of the danger of breast-feeding to the baby, most HIV-positive women refrain from breast-feeding. The WIC program provides formulas to HIV-positive mothers. Overall because of the AIDS Clinical Trials group protocol number 76 (ACTG 076), more HIV-infected women are having babies. They are aware of the ACTG 076 results and believe they can safely deliver the baby. Programs Represented Unlike Dallas and Houston, San Antonio has little local tax funding for HIV care so it relies heavily on Title I–IV funding. Because of the low prevalence of HIV in South Texas, there is strong competition for a small pot of federal money. One participant mentioned that there is no strong will to direct the money into prevention. However, despite this, there are connections that enable the present system to work. HIV-infected women in San Antonio are getting into care. Many people who are HIV-infected are referred to the following sites: South Texas AIDS Center for Children and Families (STAIDS), Valley AIDS Council (VAC), Community First Health Plans, Centro del Barrio, and the San Antonio Metropolitan Health District. All except for Community First Health Plans (an HMO, health maintenance organization) receive federal funding from Health

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--> Resources and Services Administration (HRSA's) HIV Bureau (Title I-IV) and/or the Centers for Disease Control and Prevention (CDC). Besides providing care, STAIDS also conducts research. The following are programs in South Texas that provide care for HIV-positive people. STAIDS was established at Santa Rosa Children's Hospital in San Antonio in 1988, primarily to treat hemophiliacs. Within a few years, children infected perinatally were increasingly being admitted and more children from the surrounding areas were coming in for care, even as far south as the Lower Rio Grande Valley (LRGV), which is about 270 miles away. Eventually, additional service sites were established in the towns of McAllen, Harlingen, and Corpus Christi in the LRGV. STAIDS is part of the Division of community Pediatrics of the Department of Pediatrics, University of Texas Health Science Center at San Antonio. It was founded in the late 1980s as part of the original 17 Title IV sites. In the last four to five years, the center has received funding to conduct several projects: The Salud y Unidad en la Familia is a SPNS (Special Projects of National Significance) project that is intended to develop the delivery system of care for children and mothers in South Texas. The project works with organizations that provide HIV services in Corpus Christi and the LRGV; it collects data on families to study the quality of life for HIV-positive women and barriers to care. La Frontera is another SPNS project that includes working with VAC (located at the Texas-Mexico border) and the United Medical Center (in Maverick County). The project studies the migrant and rural population to better understand the patterns of HIV disease, transmission, and case finding in these areas of the state. The Texas Department of Health funds a project to study education and prevention for youth in detention facilities. Two other grants provide funds to study the management of chronic diseases in the valley and the impact of Medicaid managed care of children with special health needs. VAC is the primary AIDS clinic in the LRGV. Since 1995, it has expanded to include a medical clinic. The program has provided an array to services, including medical services, case managers, referrals to dental services, and transportation to help people keep their medical appointments. Case managers assist families so that children reach appointments on time. They also have funds to provide emergency medication, care for migrant women, and an educational program on HIV testing in the valley. There is a walk-in testing clinic where turnaround is fast. VAC also works with other nearby hospitals. Much of the obstetric care in the valley for HIV-infected women is provided by the Family Residency Program. Private obstetricians initially did not treat these women, but the situation has improved. Now a limited but increasing number

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--> of physicians are demonstrating an interest in helping out. Most of the women treated do not have the resources to pay for care. Community First Health Plans is the first public HMO in Texas. It was established in 1997 and is a tax-exempt Texas corporation sponsored by the University Health System. The HMO was established in response to the changing marketplace, especially the move to managed care for Medicaid populations. Community First Health Plans tries to identify plan members who are at risk for HIV infection through their claims data. Members with HIV infection are assigned a case manager who facilitates members into infectious disease services and tracks health status. Members with HIV are allowed to choose their infectious disease provider as their primary care physician. Centro del Barrio is a private non-profit community health center that provides HIV testing and offers free obstetric and gynecologic services. Counselors are registered nurses, educators, certified nurses, and social workers. HIV testing is free, and an on-site laboratory provides results within two or three days. More than 95% of the women who receive prenatal care through the Centro del Barrio are tested. Pregnant women who are in shelters have outreach workers who link them to care. The center also collaborates with the hospital district. The San Antonio Metropolitan Health District's Family Health Services Bureau sees 4,000 prenatal patients per year out of the 20,000 births in Bexar County. Most of the women are indigent, and since 1996, four women have been diagnosed with HIV. Barriers To Care Some of the barriers to implementing the PHS counseling and testing guidelines in South Texas are: counseling and informing patients in a low prevalence area, obtaining and correctly analyzing test results, notifying patients of the test results, the distance some must travel to obtain care, providing care for undocumented residents, and cultural stigma. The low prevalence of HIV in the South Texas region makes it difficult to educate physicians to counsel and inform their patients of HIV. Patients with HIV make up less than one percent of the typical physician's workload. Because of the low percentage, keeping up to date with the current literature can be considered inefficient, counseling may impede a doctor's workload, and seeing fewer patients may decrease revenues. There are training classes for HIV counseling offered at the AIDS Training Center in Houston, but few physicians attend; instead, social workers and nurses usually attend. One participant recounted an incident that demonstrates providers' lack of training: a medical resident who notified a pregnant patient of her positive result was unable to answer the patient's questions about HIV, the effect of the medication on the baby, or refer her to STAIDS. When the patient asked for a retest, the resident incorrectly answered, "the tests are accurate and there is no need for retest."

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--> Obtaining and analyzing test results can also be very difficult. In one system, the physicians themselves must call the lab directly to obtain test results. Some tests may not be returned because the physician forgets or the patient forgets to remind the doctor to obtain the results. At one site to counteract this problem, a nurse practitioner obtains all the lab results and reads through them to find an HIV-positive result. Once she finds a positive result, she determines which physician has seen the woman most often and then asks the doctor to contact the woman. The analysis of the test results are sometimes misinterpreted. In a number of cases, women with a positive ELISA and indeterminate Western blot were incorrectly informed that they were HIV-positive. Although all were eventually retested, this lack of attention to important facts about HIV testing may result in the patients' mistrust of their care providers and may contribute undue stress in the women's lives. In one such situation, a woman told her husband of her positive status, and he left her immediately. When her initial results were found to be false positive, it was already too late. Some doctors seem misinformed of the standard procedure for administering the ACTG 076 regimen or assume that pharmacies automatically have injection ZDV in stock. For example in Harlingen, one physician requested administration of ZDV during labor of an HIV-positive woman, not knowing that the Harlingen hospital did not automatically stock ZDV. Unfortunately by the time the medication arrived from San Antonio, the woman had already delivered the baby. The participants believed that this situation is seen in many other smaller towns where there is a low prevalence of HIV/AIDS. Some doctors do not know the proper administration of ZDV during labor. One doctor reportedly said, "We don't use injection form here." The distance to travel for health care is also an issue. For example, one grandmother must travel 150 miles both ways so an infant can take part in a drug trial. One of the patients interviewed said that if she were to take public transportation to her clinic, it would take her two hours. Considering the importance of complying with the ZDV regimen, transportation can be considered a barrier when caring for HIV-positive pregnant women. Some providers around the LRGV must travel 1400 miles in less than a month to deliver the results to people. Transportation is "expensive, labor intensive, and time consuming." Finally, there is difficulty in notifying the woman of a positive result. Many women are lost because they provide false addresses (often because of immigration concerns). Others are lost because of the effects of a provider's unsympathetic notification of the positive result. Texas Law In response to the lack of preparation in dealing with HIV and delivering medications, the Texas legislature passed a law in February 1996 that requires

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--> routine HIV testing with notification of all pregnant women at the first prenatal visit and during delivery, except for those who specifically opt out. Counseling is supposed to be offered and pamphlets about HIV/AIDS from the Texas Department of Health given to all women in prenatal care. The participants saw a number of benefits of the law. Most importantly, more women, especially those considered at low risk, were getting tested. However although more women were being tested, the participants cited several gaps in the law's implementation. First, there is no tracking system to know which and how many women stayed away from care because of the testing policy. Second, although the law requires counseling, no funds are set aside for counseling nor is counseling tracked. Third, although testing is required, there is no enforcement of the law. Remarkably, many providers and patients, even those interested enough in perinatal HIV to attend the committee's site visit, seemed ignorant of the law's specific provisions. Special Populations Undocumented Women Because of Texas' close proximity of the Mexican border, many Mexican women cross the border to deliver their babies in South Texas. Many of these women have not received prenatal care because they are ineligible for Medicaid. Several dilemmas may arise for these women. One is providing care for other sick family members who are not U.S. citizens. According to one participant, there was a case where an HIV-infected Mexican woman delivered her baby in the United States. The woman has six other children who are not U.S. citizens, all who have tested positive for tuberculosis (TB), and one who is HIV-positive. The provider must then decide between treating other sick family members despite their lack of U.S. citizenship or not treating them at all, which may lead to death or in the cases of the TB infected individuals, be a threat to others. In these situations providers must be creative, often relying on limited charity funds, in finding solutions to treat sick family members. Another dilemma arises when providing care for a baby who is a U.S. citizen and dealing with a mother who is not. In one such situation, there was a choice between deporting the mother along with the baby, thereby depriving U.S. care for the HIV-infected baby or deporting only the mother and leaving the baby behind to be enrolled into a drug trial. Luckily, the baby was able to remain in the United States with her grandmother. South Texas also has a large migrant population. To access health care and since they do not have a permanent address, migrants must return to the state where they originally applied for Medicaid. If they access their health care elsewhere they risk losing their Medicaid eligibility. Thus, pregnant migrant women living in Texas who are HIV-infected must deliver in the state where they originally applied for Medicaid. That state may not have routine HIV testing during

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--> pregnancy, and then the women ends up returning to Texas without accessing HIV care. Culture The family unit is very important and highly regarded in the Hispanic culture. HIV infection, however, is seen as a threat to the cohesiveness of the family. One patient noted that the worst thing for a Hispanic family is having a member who is homosexual, uses drugs, or is promiscuous. In the Hispanic culture, HIV encompasses those aspects and so one who has HIV is considered "not good." Some positive women, then, are reluctant to tell their families of their HIV infection. Single women who are pregnant and have HIV must also deal with the additional stigma of being a single unwed mother. Since "family" is so important in the Hispanic culture, many women do not use birth control. For instance, women feel that they cannot ask a man to put on a condom because as his wife or partner, she would not be satisfying him. Because of the importance of the family, on the other hand, a pregnant woman will work out of her culture and seek early prenatal care and take medications if she understands there is a benefit to her baby. Usually, the women are more compliant in using formula if they know that breast-feeding may harm the baby. All of the patients who were interviewed stressed the importance of taking the medication "because of the baby." Patients Patient 1: Theresa Theresa (a pseudonym) is a Hispanic woman who was tested for HIV in 1994 and was negative. In 1998 she was tested again after signing forms for a test she thought was routine. She was 6.5 months pregnant at time of diagnosis, and she had never received information on how HIV transmission from mother to child can be prevented. Upon receiving the positive test result from her provider, who is a medical resident, Theresa at first did not believe it. She asked questions about HIV, the medication, its side effects and potential harm to the baby, yet the resident was unable to answer the questions or refer her to specialized care in San Antonio. Theresa felt "dirty, not worthy, trashy, and filthy." She perceived that HIV-positive people were prostitutes and drug users, and that people would see her in the same light. Luckily a nurse practitioner overheard the conversation between Theresa and the resident, consoled Theresa, and told her about Community Pediatrics. Unfortunately Theresa was still distraught and contemplated suicide on her way home. However the counselors at Community Pediatrics were very helpful

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--> and caring and referred her to other providers. She did not want to return to her first provider. Initially she went to the Family Focus AIDS Care Treatment and Services Clinic (FFACTS), found that it primarily treated homosexual men, and consequently felt uncomfortable. There were also HIV/AIDS signs in the clinic, and she believed that her confidentiality was being threatened. Two months prior to delivery, she developed shingles and was hospitalized. Her providers wore full masks and gowns when they entered the room, and she assumed that they were protecting themselves from HIV, not the shingles. No one had told her why. Her mother knows her HIV status, and both are learning more about the disease. Theresa used the HIV brochures that she received from her providers to explain the disease to her mother, who is very supportive. On the other hand, Theresa's two sons do not know her HIV status, and she fears that they will discover it. When she administered the ZDV to her newborn, Theresa told her sons that they were vitamins. There are support groups in the evenings, but it is difficult for her to attend since her children do not know she has HIV. She also has a roommate who helps support her and the children. Without him, she and her family would be out on the streets. She does not receive support from the baby's father because she believes that he feels guilty. After her diagnosis, she began to lose her concentration at work, and her performance deteriorated. She believed that having her baby in daycare while she was at work and administering ZDV would put her confidentiality at stake. She quit her job but eventually found a new one. Upon bring hired, though, she will have to relinquish her Medicaid status since her salary is now over Medicaid's earning requirements. She is concerned that people will find out at work. At a previous job, one woman knew and treated her differently. She is afraid of getting sick at her job or even cutting herself. Theresa's providers helped her find a pharmacy where no one knew her. She is now on triple therapy and is very compliant to the medication regimen. Her doctor told her two months before the site visit that she would live five or ten more years. Two weeks before the site visit, the doctor said that she will live eight to twenty more years. He said that as long as she takes her medication, she would live longer. She reports that she ''takes the medication for her [baby] and myself. … I may not see her wedding or prom, but will see her everyday until it [death] comes." Patient 2: Loretta Loretta was five months pregnant when she was diagnosed with HIV. She did not know about the HIV testing law, and her nurse told her that it was mandatory. However, when Loretta questioned the nurse about the informed

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--> consent form which had boxes of "yes" and "no," the nurse restated, "It's the law.'' Her private obstetrician/gynecologist (she's covered by Medicaid) told her on the phone that her tests came back abnormal and that it was important to see both her and her husband immediately. Once in the office, the doctor told Loretta that she had HIV and showed her the lab results. She was in disbelief and thought, "I'm no lab technician, how am I supposed to read this?" The doctor then gave her a prescription of ZDV and a copy of several pages from a book about AIDS. Her first thought was that she was going to die immediately, and both she and her husband were distraught and overcome by tears. Loretta's second concern was for her baby. Her husband demanded a retest, but the doctor at first refused but later relented. The doctor referred her husband to the Health Department to be tested. At the Health Department, they began to get answers and support. The counselors explained the test procedures, the medication, and then referred them to the FFACTS clinic. When she returned to her private obstetrician/gynecologist to get the second test results, she felt uncomfortable with him and thought that he did not know how to handle her situation. He asked if she was taking ZDV, and Loretta replied that she had not started because she did not know what it was. What she initially knew of ZDV was through a homosexual friend who had HIV. He took ZDV, still deteriorated, and later died. She believed that ZDV caused her friend's death and so assumed that HIV led to AIDS with ZDV, and that led to death. Her first thought was how were people going to treat her. She believed that only homosexuals and drug users were infected with HIV. She felt alone, ashamed, and dirty. She thought that people would not want to be around her and no one would take care of her baby if she was not around. However once Loretta began seeing her current physician from the FFACTS clinic, she began to understand the benefits of ZDV. When she began learning more about the disease, she informed her family. Her baby is negative and now she is on triple therapy. Patient 3: Olivia Olivia was diagnosed with HIV after donating blood. One month later, the blood drive's sponsor tracked her down and informed that she had HIV. She contacted her mother, but at that point, she felt she had nowhere to turn. Her fourteen-year-old son and her partner were both found negative. Upon notification, physicians in her hometown of Seguin where the blood bank was located, told her that they "didn't know how to help." They referred Olivia to other several places. She finally contacted the health department in Seguin, and they referred her to the FFACTS clinic. At that point, one month after she donated blood, the physician told Olivia that she was four months

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--> pregnant. Olivia wanted to have an abortion, but the doctor said that she was too far along in her pregnancy and could not have an abortion. At that point she started feeling scared. Olivia was immediately placed on ZDV and informed that the ZDV was to benefit the baby's health. She was very compliant with treatment and kept every appointment. Her baby is negative. Her partner's family reacted negatively because of her status. She, however, was not afraid to tell her own family and receives strong support from her family, which she attributes to the family's closeness. When Olivia's younger niece worries that Olivia would die and would not be able to take care of the baby or that the baby would die, Olivia responds, "You just have to pray." She is now on triple therapy and Prozac because of her depression. Patient 4: Tina Tina who is six months pregnant, originally grew up in Puerto Rico and was probably infected there by an abusive boyfriend who later died of AIDS. After being tested while still living in Puerto Rico, a nurse called to say "you have to come down. It doesn't look good." She hung up, and did not get retested until after moving to San Antonio. After complaining about migraines, she was admitted to the hospital, where it was determined that she was pregnant. For her prenatal care, she visited the health department and found out that she was 2 weeks pregnant and had HIV. She began to cry upon receipt of the news, but the physician comforted her by saying that "a positive status doesn't mean you're going to die." This gave Tina some hope. Tina told her cousin about her HIV status, and her cousin told her whole family. Her family was not supportive, and Tina felt they were treating her like "trash." Her father, though, was very supportive. Tina's partner also attended the meeting and reported that Puerto Rico is backwards compared to the United States in HIV care and understanding of the disease. HIV patients are not treated with dignity and there is condescension of the lifestyle these patients have led. Most people, he thinks, believe, "You did it, you deserve it." Tina did not know that medications can help her baby until she saw her partner taking his medication. She does not like being pushed and if testing were mandatory, she would go somewhere else for prenatal care. Site Addresses And Participants Representing the committee were Katherine Luzuriaga and Stephen Thomas and IOM staff were Michael Stoto (study director) and Donna Almario.

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--> Centro del Barrio 7420 Blanco Road Suite 200 San Antonio, TX 78216 Jay Sanchez, Program Director Community First Health Plans 7420 Blanco Rd. Suite 200 San Antonio, TX 78216 Susan Lomba, Director of Health Promotion and Wellness San Antonio Metropolitan Health District Bureau of Family Health 332 West Commerce San Antonio, TX 78205-2489 Maurine Porto, M.D., Interim Chief South Texas AIDS Center for Children and Their Families Division of Community Pediatrics—Department of Pediatrics University of Texas Health Science Center at San Antonio 7703 Floyd Curl Drive San Antonio, TX 78284-7817 Victor F. German, M.D., Ph.D., Program Director Terence Doran, M.D., Ph.D., Clinical Medical Director Rachel Davis, R.N., Assistant Director Yolanda Cantu, M.P.H., Planner, Evaluator Yvonne del Bosco, M.P.H. Valley AIDS Council 2220 Haine Suite 45 Harlingen, TX 78550 Lydia Benavides, Director of Client Service Lisa Casas, Case Manager