Attitudes Toward and Beliefs About Prenatal HIV Testing Policies and Mandatory HIV Testing of Newborns Among Drug Users

74 AIDS & Public Policy Journal Fall/Winter 2005 Attitudes Toward and Beliefs About Prenatal HIV Testing Policies and Mandatory HIV Testing of Newborns Among Drug Users Odicie Fielder and Frederick L. Altice ABSTRACT BACKGROUND Controversy remains about perinatal HIV testing in many clinical settings. We sought to examine the attitudes and health beliefs among drug users about mandatory HIV testing of newborns and about voluntary versus mandatory testing of pregnant women. We also examined to what extent negative experiences and stigmatization affected attitudes towards HIV testing. Odicie Fielder, BS, is a Graduate Student in the Yale University AIDS Program, New Haven, Connecticut, odicie. fielder@yale.edu. Frederick L. Altice, MD, is an Associate Professor of Medicine and Director of the Community Health Care Van and HIV in Prisons Program at the Yale University AIDS Program, frederick.altice@yale.edu and raltice@aol.com. by University Publishing Group. All rights reserved. METHODS To establish a baseline, we examined 610 structured interviews conducted from 1997 to 2001, of active drug users who were recruited using respondent-driven sampling. We then conducted five focus groups of five subjects per group to further analyze responses in September 2003. The responses of the members of the focus groups were transcribed, coded, and analyzed using Microsoft Word 2000. RESULTS Quantitative Longitudinal Cohort Studies Of the 610 drug users interviewed in the two longitudinal cohort studies conducted from 1997 to 2001, nearly all (89 percent) had been previously tested for HIV. Nearly all subjects (91 percent) believed that pregnant women should be tested for HIV. More subjects who had prior HIV testing believed all pregnant women should be tested for HIV (92.9 percent versus 82.6 percent, p = 0.008). Although 86 percent of the subjects agreed that all newborns should be tested, only 57 percent of all of the subjects believed that it should be mandatory. Among the female subjects, however, more injectors than non-injectors would avoid prenatal care if HIV testing was required during pregnancy (16.2 percent versus 6.1 percent, p < 0.01). Of the 499 subjects who reported that they had a usual site for care, 31.8 percent believed that certain types of people received better treatment than others. Not using drugs, being of a certain race/ethnicity, and having private insurance were associated with receiving better care. The majority of subjects believed that being a drug user resulted

Volume 20, Number 3/4 AIDS & Public Policy Journal 75 in receiving suboptimal care from the healthcare establishment. Qualitative Focus Group Study In the focus groups, arguments against mandatory testing of pregnant women included the loss of choice, the right not to know one s HIV status, and the belief that mandatory testing was both a means of provoking rebellion and promoting discrimination. Concern for a baby s health was the primary reason for supporting mandatory testing. Perceived discrimination by the healthcare system was cited as a barrier to acceptance of testing strategies, as it was in the structured interviews. CONCLUSIONS The current practice of mandatory newborn and voluntary prenatal screening for HIV in the State of Connecticut appears to have been acceptable to a population of highly stigmatized drug users who have been or were at risk for HIV. Despite this acceptance, perceived discrimination by the healthcare system persists and may result in adverse outcomes for a minority of high-risk women, particularly where drug misuse is more highly stigmatized. BACKGROUND Despite advances in both antiretroviral and obstetrical interventions, perinatal HIV transmission continues to occur in the United States. Transmission from mother to child occurs largely due to missed opportunities for prevention, namely among women who do not receive prenatal care 1 or who do not receive testing during prenatal care. 2 In addition, suboptimal use of antiretroviral medications in Abbreviations and Acronyms Used in this Article AOR adjusted odds ratio CDC Centers for Disease Control and Prevention CI confidence interval DU drug user IDU injection-drug user IOM Institute of Medicine MTCT maternal-to-child transmission NIDU non-injection-drug user ZDV zidovudine HIV-infected pregnant women continues to allow transmission. In 1994, the AIDS Clinical Trials Study Group 076 demonstrated that zidovudine (ZDV) reduced vertical transmission of HIV from 25 percent to 8 percent when ZDV is given to the mother during pregnancy and at delivery, and to the newborn. 3 Studies by the International Perinatal HIV Group later reported that caesarean section could reduce transmission by 50 percent, 4 and, by 1999, there had been an 83 percent decline in perinatal HIV cases in the U.S., compared with 1992. 5 Despite these advances, the Centers for Disease Control and Prevention (CDC) estimates that between 280 and 370 infants are born with HIV infection each year in the U.S. 6 There has been much debate regarding how to develop policies that will most effectively reduce perinatal HIV transmission. In 1999, the Institute of Medicine (IOM) recommended universal, routine prenatal HIV testing. Universal testing means that all pregnant women would be offered testing, regardless of their risk status. In routine testing, women are told that HIV testing will be performed with a battery of prenatal screening tests, unless they specifically decline. 7 Women are not explicitly asked to accept testing, which is known as the opt-out approach. This policy is different than voluntary testing (in which an individual must explicitly accept the offer of an HIV test, and written consent is required or recommended) or mandatory testing (in which there is no option to refuse a test). Voluntary testing is also known as an opt-in consent approach. Previously, the IOM supported universal HIV counseling and voluntary testing; however, the continued occurrence of pediatric HIV cases in the face of this policy prompted its re-evaluation. Recently, the CDC adopted an initiative, New Strategies for a Changing Epidemic, that also promotes an optout approach to HIV testing of pregnant women. 8 Previously, CDC supported an optin approach. 9 Connecticut state law requires testing with informed consent during pregnancy, as well as routine testing with an opt-out policy

76 AIDS & Public Policy Journal Fall/Winter 2005 at delivery. After some opposition at the initiation of the law, 10 rates of maternal testing in Connecticut increased after its implementation. 11 The success of this policy is further indicated in the fact that in the year 2000, all infants born to HIV-infected mothers in Connecticut s capitol tested negative. 12 Routine testing has led to improved rates of HIV testing among pregnant women in other areas as well. On 1 September 1998, the province of Alberta, Canada, adopted an opt-out strategy for prenatal testing. Within one month, the HIV testing rate for pregnant women increased by 28 percent. 13 In addition, studies have reported that routine testing is cost-effective and improves detection of HIV in community 14 and correctional settings. 15 Other U.S. states have responded to the success of routine and voluntary testing. A survey in 2002 found that 17 states had statutes regarding prenatal HIV testing; 11 were based on a voluntary testing strategy for pregnant women, and six had statutes based on routine testing. 16 The remaining states had various policies that in some way addressed perinatal HIV transmission. Newborn HIV testing with subsequent treatment is another way to reduce maternalto-child transmission (MTCT). The provision of antiretroviral therapy during the prenatal period has been proven to allow the lowest rates of HIV transmission. 17 There is evidence that antiretroviral therapy given within the first 48 hours of life lowers transmission rates to 9.3 percent. This is substantially lower than rates of transmission without therapy, or when therapy is given significantly later in the postpartum period. Infants who are given antiretroviral therapy in the immediate postpartum period (within three days of delivery) may still derive benefit. 18 New York State was the first to adopt a mandatory HIV screening law for newborns in 1996. 19 Connecticut passed a similar law in 1999, requiring testing of all newborns who were without record of maternal testing during pregnancy or delivery, without parental consent. 20 The other component of this law, with respect to the testing of pregnant women, has been previously mentioned in this article. There have been challenges to acceptance of these laws. In essence, a woman who did not learn her HIV status during her entire pregnancy or during delivery would be subjected to that information indirectly by having her newborn tested at birth, in spite of her objection. Criticism of this law was primarily based on the idea that women would be forced to learn their HIV status, the result being no different than a mandatory testing law for pregnant women. Opponents of mandatory newborn testing have cited ethical concerns, the most salient being an individual s basic right to privacy, and, more specific to the medical field, informed consent. 21 The major difference in the testing strategies proposed by the IOM and the CDC are the manner in which informed consent was addressed. The issue was raised: do the new statutes represent a form of coercion by effectively presenting a threat of an unwanted action to the baby unless the mother takes a test? 22 Lending credence to this idea, a study of prenatal patients in Connecticut found that some women would accept testing to keep their babies from being tested. 23 Others remain opposed to mandatory HIV testing, based on the notion that if a pregnant woman is faced with undergoing what may be perceived as a mandatory test, she might avoid prenatal care altogether; this is of particular concern for women who are drug users, as these women have historically had lower rates of receipt of prenatal care. 24 There are special concerns when routine or mandatory testing for pregnant women who use illicit drugs is considered. Drug users have been shown to be more likely to avoid healthcare treatment than non-drug users are. 25 Even when healthcare is obtained, this group has been reported to be less satisfied with access to the healthcare system than the general population is. 26 Drug-using women may not seek to know that HIV status after they weigh the consequences of revealing their status to a partner or to child protection agencies. 27 In addition, historical mistrust of the medical

Volume 20, Number 3/4 AIDS & Public Policy Journal 77 system by marginalized groups of society continues to affect their participation in healthcare. 28 Although previous studies have addressed drug users motives for seeking HIV testing, none have adequately studied the acceptability of both routine prenatal testing for pregnant women and mandatory testing of newborns. The purpose of this study is to understand the attitudes and beliefs of a group that is affected by the current laws, the drug-using patient population, and to specifically address the issue of avoidance of prenatal care secondary to implementation of these laws. METHODS Structured interviews from two longitudinal studies of drug users (DUs) with subsequent qualitative studies using focus groups were used to obtain insights into drug users knowledge and attitudes on mandatory HIV screening policies for newborns. QUANTITATIVE LONGITUDINAL COHORT STUDIES Quantitative data were derived from two longitudinal cohorts of drug users. These studies were conducted prior to and around the time of implementation of mandatory newborn testing in Connecticut. One cohort of 376 injection-drug users (IDUs) was recruited from 1997 to 1999. The second cohort was comprised of 234 non-injection-drug users (NIDUs) recruited from 1999 to 2000 at various drug treatment centers in and around New Haven. Both were recruited using respondentdriven sampling, a study method that is often used to recruit representative samples of difficult-to-reach populations. 29 The cohort of IDUs has been previously described. 30 After informed consent was obtained, each participant was given a standardized questionnaire with questions regarding demographics, drug use, utilization of health services, sexual behavior, and psychological well-being. Statistical analyses were performed with statistical software, version 8.0. 31 QUALITATIVE FOCUS GROUP STUDY After an initial analysis of the data to examine the range of attitudes regarding mandatory HIV testing, a qualitative approach was introduced. In September 2003, focus groups were conducted with a total of 25 HIV-infected and uninfected, drug using men and women (see table 1). Similar to the two longitudinal cohorts, individuals were eligible if they were over the age of 18 and had a history of cocaine or heroin use within the previous six months. Exclusion criteria included not being able to speak English or not being able to provide informed consent. Subjects were recruited by staff from various clinical drug treatment and community-based outreach sites in New Haven. Each group was distin- TABLE 1 Focus Group Characteristics (N = 25) Gender Mode of Drug Use Focus Group Male Female HIV Status IDU NIDU Focus group 1 (n = 5) 5 0 Negative 3 2 Focus group 2 (n = 5) 5 0 Positive 2 3 Focus group 3 (n = 5) 0 5 Positive 0 5 Focus group 4 (n = 5) 0 5 Positive 5 0 Focus group 5 (n = 5) 0 5 Negative 2 3 TOTAL 10 15 -- 12 13

78 AIDS & Public Policy Journal Fall/Winter 2005 guished by gender and HIV status. The rationale for dividing groups according to gender and serostatus was to maintain homogeneity and to capitalize on people s shared experiences and attributes. As we were particularly interested in the responses of HIV-infected, drug-using women, we recruited two distinct groups: one comprised of IDUs and the other NIDUs. Males were included as a vital part of this study with the rationale that a male partner may be involved in a woman s decision to access prenatal care and/or obtain an HIV test. Each focus group was held at the site where the participants had been recruited. Identities were kept anonymous, and codes (double-letter initials) were used for reference during the interviews and transcription. The focus groups covered four thematic areas: 1. Knowledge of HIV transmission, 2. Attitudes towards voluntary versus mandatory testing of pregnant women and newborns 3. HIV testing and counseling experiences, and 4. Stigma and trust of medical institutions. Each focus group session lasted approximately 90 minutes. Participants were paid $25 at the conclusion of each session. The male focus groups were moderated by two researchers, one male (JH) and one female (OF). All groups of women were conducted by a single female researcher (OF). All groups were taped and transcribed by the female researcher. The transcripts were analyzed multiple times to identify and code broad themes. Once themes were identified, anecdotal elements were isolated by theme and gender using Microsoft Word. RESULTS QUALITATIVE LONGITUDINAL COHORT STUDIES Tables 2 through 5 report data from the 610 participants in the two longitudinal cohort studies. In table 4, the data set was limited to the 586 of the 610 subjects (96 percent) who had undergone prior HIV testing. Table 5 is limited to the 499 subjects (82 percent) who reported having had a usual place of healthcare. Data from these tables may not equal the total sample size that is stated at the top of the table due to missing data. Table 3 displays selected baseline demographic and drug-use characteristics of the 610 (376 IDU and 234 NIDU) study participants. The mean age was 38.7 years and 66.6 percent were non-white. Of all of the drug users, 238 (39.0 percent) were women. Nearly all of the subjects (88.7 percent) had been previously tested for HIV, and 26 percent reported being HIV-infected. Table 4 (n = 610) shows the subjects attitudes on mandatory testing of newborns and pregnant women with respect to drug use history (injection versus non-injection). The majority of subjects reported that all pregnant women should undergo HIV testing. With regard to testing newborns for HIV, 56.7 percent (n = 337) felt that they should be tested without the mother s consent, which would constitute mandatory testing. Nearly 14 percent of the subjects did not support testing of newborns. None of these values were statistically significant. There were no differences between IDUs and NIDUs with regard to those beliefs. Among the 238 women surveyed, however, more IDUs would avoid prenatal care than NIDUs (16.2 percent versus 6.1 percent, p <.01) if HIV testing was mandatory during pregnancy. Table 2 (n = 586) describes the subjects attitudes toward HIV testing of pregnant women and newborns, stratified by their history of previous HIV testing. Subjects who had been tested for HIV in the past were significantly more likely to believe that pregnant women should undergo HIV testing (92.9 percent versus 82.6 percent, p <.01). There were no statistically significant differences between all subjects who had and had not been tested for HIV in the past with regards to newborn testing and willingness to participate in prenatal care among women.

Volume 20, Number 3/4 AIDS & Public Policy Journal 79 We examined experiences with and attitudes towards healthcare in the longitudinal cohorts. Of the 610 participants, 499 participants (82 percent) reported a usual place of healthcare that included specialty clinics, mental healthcare clinics, community vans, and prisons. Of these, 173 (31.8 percent) believed that certain people at their site received better treatment than others. Of the participants who agreed with this statement, women TABLE 2 Demographic and Social Characteristics of Longitudinal Cohort of Injection-Drug Users and Non-Injection- Drug Users (N = 610) Characteristic n % Age 17 to 34 years 160 26.2 35 to 39 years 166 27.2 40 to 44 years 154 25.3 45 to 64 years 127 20.8 Gender Male 371 60.8 Female 238 39.0 Race White 204 33.4 Black/African-American 289 47.4 Hispanic 81 13.3 Other 32 5.3 Highest level of education Elementary 47 7.7 Some high school 182 29.8 High school graduate/ged 247 40.5 Some college or higher 131 21.5 Currently employed No 492 80.7 Yes 111 18.2 HIV testing Never had a HIV test 69 11.3 Tested negative for HIV 389 63.8 Tested positive for HIV 137 22.5 Regular healthcare provider No 323 53.0 Yes 283 46.4 Received public assistance/public medical insurance in last 6 months No 147 24.1 Yes 458 75.1 Medicaid/Medicare coverage in last 6 months No 285 46.7 Yes 317 52.0 Note: Numbers may not add up to totals due to missing data. Percents may not add up to totals due to rounding.

80 AIDS & Public Policy Journal Fall/Winter 2005 TABLE 3 Knowledge and Attitudes about Mandatory Testing in Pregnant Women and Newborns among Non-Injection- Drug Users and Injection-Drug Users (N = 610) Non-Injection-Drug Injection-Drug Users (n = 234) Users (n = 376) Characteristic n % n % p-value Men and women (N = 610) All pregnant women should undergo HIV testing No 21 9.1 33 8.9 0.930 Yes 209 90.9 337 91.1 -- All newborns should undergo HIV testing No 28 12.3 55 15.0 0.671 Yes, only with mothers consent 68 30.0 107 29.1 -- Yes, even without mothers consent 131 57.7 206 56.0 -- Women only (n = 238): Avoid prenatal care if a law required HIV testing in pregnancy No 83 83.8 123 93.9 0.014 Yes 16 16.2 8 6.1 -- Note: Numbers may not add up to totals due to missing data. Percents may not add up to totals due to rounding. TABLE 4 Knowledge and Attitudes on Compulsory HIV Testing of Pregnant Women and Newborns by HIV Testing Status Never Had an Had Prior HIV HIV Test (n = 69) Testing (n = 517) Characteristic n % n % p-value Men and women (n = 586): Pregnant women should undergo HIV testing No 12 17.4 40 7.7.008 Yes 57 82.6 477 92.9 All newborns should undergo HIV testing No 10 14.5 70 13.6.831 Yes, only with mothers consent 18 26.1 152 29.6 Yes, even without mothers consent 41 59.4 291 56.7 Women only (n = 238) Avoid prenatal care if a law required HIV testing in pregnancy No 18 78.3 183 90.6.144 Yes 5 21.7 19 9.4 Note: Numbers may not add up to totals due to missing data. Percents may not add up to totals due to rounding.

Volume 20, Number 3/4 AIDS & Public Policy Journal 81 were nearly 40 percent less likely than their male counterparts to agree with this statement (adjusted odds ratior, AOR = 0.61; 95 percent confidence interval, CI 0.41-0.93). In addition, having tested positive for HIV was associated with believing that certain people receive better healthcare services. (AOR = 0.42; 95 percent CI 0.25-0.72). In table 5 (n = 499), we examined the healthcare experiences and attitudes among those receiving care. The types of people whom these participants felt received better care included those who didn t use drugs (74 percent), those of a particular race/ethnicity (70 percent), and those who had TABLE 5 Social and Demographic Correlates Associated with Belief that Certain People Receive Better Treatment from Healthcare Providers, among Subjects with a Usual Place of Healthcare (n = 499) Characteristic Adjusted Odds Ratio Confidence Interval Mode of drug use Non-injection-drug users Referent Injection-drug user 1.51 0.96, 2.38 Age 17 to 34 years Referent 35 to 39 years 1.17 0.68, 2.03 40 to 44 years 1.16 0.66, 2.05 45 to 64 years 1.65 0.91, 3.00 Gender Male Referent Female 0.61 0.40, 0.93 Race White Referent Black/African-American 1.08 0.68, 1.72 Hispanic 0.74 0.37, 1.46 Other 1.85 0.75, 4.54 Highest level of education Elementary 1.26 0.58, 2.73 Some high school 1.02 0.64, 1.63 High school graduate/ged Referent Some college or higher 1.08 0.65, 1.81 HIV testing Never had a HIV test 1.24 0.65, 2.37 Tested negative for HIV Referent Tested positive for HIV 0.42 0.25, 0.72 Received public assistance/ public medical insurance in last 6 months No Referent Yes 1.22 0.72, 2.06 Medicaid/Medicare coverage in last 6 months No Referent Yes 1.06 0.68, 1.65 Note: Variables in the table are adjusted for each other. Analysis is valid for subjects without missing data for variables in the tables.

82 AIDS & Public Policy Journal Fall/Winter 2005 private insurance (68 percent). In general, participants harbored negative feelings about the healthcare environment related to its attitude toward drug users. Drug users were found to have negative experiences with the healthcare system because they felt that their symptoms were not taken seriously (65 percent), and because they avoided seeing doctors because of their drug use (74 percent). QUANTITATIVE FOCUS GROUP STUDY Focus group information was used to further clarify responses from the longitudinal cohort. Excerpts were extracted into the following three categories: (1) attitudes toward testing pregnant women; (2) attitudes towards testing newborns and attitudes toward prenatal care; (3) subjects healthcare experiences and attitudes about healthcare. ATTITUDES TOWARD TESTING PREGNANT WOMEN When discussing testing pregnant women, male and female participants were asked, Would you be more likely to get an HIV test if I told you: As a pregnant woman, it is required that you have an HIV test, or, As a pregnant woman, it is the law that you undergo an HIV test,? Nearly all of the participants, regardless of their HIV status or gender, disagreed with mandating HIV testing. The primary and most frequent objection was the fear of a loss of autonomy and choice. Participants also cited a woman s right to not know her HIV status as an important reason to oppose mandatory testing. Voluntary testing, with its implicit right to consent, was the preferred method to administer HIV testing. G.X., an HIV-negative female with eight children, recounted her experience with testing before routine testing laws were implemented. G.X.: I have eight children. So whenever we go, you know for prenatal or whatever, that s one thing [testing] that they definitely do. O.F.: So when you went and had your children they tested you then? Nine years ago. G.X.: Oh yeah. Although the subject had an expectation that she would be tested for HIV, her response to the issue of mandatory versus voluntary testing was that reflected by most participants. G.X.: I say it should be required. I don t like that word, the law, because the law, it sounds so demanding. See I still believe in pro choice, you know. Everybody should have their own choice. In response to disagreement with mandatory testing, participants reacted with a sense of rebellion towards the law. Agreement with this belief was similar with respect to gender. D.X., an HIV-negative male, said, D.X.: If you say it s the law, I have to do it. It s like you re telling me what to do, like I have to do it. I ll just tell you no just to be rebellious. E.X., a 60-year-old female who disclosed that she had been positive for 23 years, discussed the difference in mechanism of being asked to test would have on her willingness to comply. E.X.: I can t function on a demand. And I know I won t. If you let me go on my time, I ll jump with a quickness. But don t tell me what you ve gotta do, cuz the law says. However, she also stipulated situations in which it would be appropriate for HIV testing to be a mandatory law. E.X., in addition to the others in all of the focus groups, agreed that certain groups, such as women with high-risk lifestyles (commercial sex workers and active, heavy drug users) may not have the capacity to make such a decision, therefore making it necessary to institute mandatory testing, in those special circumstances. O.F.: Okay, so when it comes to pregnant women, is it OK for us to tell them that it s the law? E.X.: It depends on how old they are... the older ones can make up their minds a little better. But these

Volume 20, Number 3/4 AIDS & Public Policy Journal 83 J.S.: young ones, they are gonna dodge. Afraid of they boyfriends, and family, to get knocked down with ridicule. Talk to a young girl, but still you have to make them. [an HIV-negative man] Definitely, definitely, cuz let s say like you have the woman still running the streets doing drugs and alcohol. They don t have time to sit down and really take care of theirselves, so it should be mandatory definitely. You gotta worry about the baby; I know a few pregnant women who they don t even care about theirself. So they can t care about their baby. P.X., an HIV-negative female without children, felt that refusal to assent to testing was associated with a higher likelihood of actually having HIV. P.X.: Especially if the lady tells you, You re not gonna test my kid. Why would they tell you not to? Why would I not want my kids to be right? That brings your antennas up then. That s something to think about. Why would somebody not want to know if there s something wrong. Many were able to concede that if given the choice themselves, most women would consent to testing for the safety of their child. Some participants felt, therefore, that another exception should be made to allow mandatory testing in pregnant women, for the sake of the unborn child. All of the women in our HIV-infected groups had children, none of whom were HIV-infected. M.X., an HIV-infected female with six children, was known to have HIV when her last two children were born. She expressed her belief that she would compromise herself (as she believes all women, in general, would) for the sake of the child. M.X.: I m saying that most people would think selfishly, but when it has do with another person, another human being, your child now.... You love this child, and you want this child; you want to know this child is gonna be all right. So therefore, you re gonna take the test. You re gonna want to take this test. For me, myself, regardless of whether they say that it is mandatory or not, if they say, Do you want to take the test? I would say Yes, because they [the child] deserve a chance for life... and you wanna know cuz there is something you could prevent. ATTITUDES TOWARDS TESTING IN NEWBORNS Support of mandatory testing of newborns was unanimous. Participants felt that even in the absence of parental consent, if the mother was not tested, then the newborn should be. Central themes in support of this were the ideas of innocence and helplessness in the unborn child. In addition, participants said that the baby deserves the best chance at a healthy life. P.W., an HIV-negative female with no children, evaluated the benefits of testing the newborn to both newborns and society. P.W.: I think it s beneficial for everybody. I mean, children don t have a choice in the world. They don t have a choice to be born to this disease. They clueless, you know. They don t have a choice. I think, yeah, they should be tested. We talking about babies, here, a life that s born into this world clueless. J.S. also spoke of his reasons for supporting mandatory testing in newborns. J.S.: Because of the baby. With me it s just me, you know. So if I choose not to have it, I m just speaking for me. I m not hurting anyone but myself. And that s a decision that I make; when I make a decision for more than one person, you can almost say that s like murder, you know what I mean? In a way, you know what I mean? Like neglected homicide, or something. But if it s just me, then I should suffer for it, then that is me. But when you gotta be concerned about taking another life involved, you gotta answer for that life too. ATTITUDES TOWARDS PRENATAL CARE When asked about receiving prenatal care, should HIV testing become mandatory, most women agreed that they personally would not be deterred. Both genders, however, were able to cite various reasons that other women might

84 AIDS & Public Policy Journal Fall/Winter 2005 avoid prenatal care, including high-risk lifestyles such as drug addiction. Other reasons included being a commercial sex worker, fear of stigmatization by society and from healthcare providers. Participants felt that women with high-risk behaviors (including addiction and prostitution) would not have sufficient control over their actions to make an appropriate decision for testing. High perceived risk and fear of testing positive were also felt to represent important deterrents to prenatal care. O.F.: P.W.: P.X.: Do you think that pregnant women would avoid coming to get their prenatal care if they had to get the HIV test? It depends. When a person feels you are making them do something, a lot of people rebel. A lot of women will neglect prenatal care because of that. Right. There s some of us that.... I would want to know. But heaven forbid if she s an addict and she s out here ripping and running and it s a law. Heaven forbid if she s got a warrant somewhere. First thing we think is, That s a setup. I m going to jail. Now they set me up. I ain t going down there so they can lock me up. That s how we think. A lot of us will not take the time and get prenatal care if it s changed to a law. HEALTHCARE EXPERIENCES AND ATTITUDES ABOUT HEALTHCARE Another theme found in the focus groups was negative experiences with healthcare. In all sessions, the participants spoke at great length about how the persistent stigma that surrounds drug use is a barrier to receiving healthcare services. In Group 1, HIVuninfected males, there was broad agreement and shared experience. D.X.: Exactly, I just had a back operation, and they wouldn t give me anything for the pain cuz they knew I was in the methadone program. And they still won t.... I mean it hurts, but I m not gonna be in pain for like a year and a half and them not give me anything for it cuz I m in the methadone program and that is what they said. [Agreement in the background.] O.F.: So do you think that they were doing that because they don t trust you? D.X.: Yeah, because I m a drug addict, yeah, definitely. They told me that, yeah. J.X.: About six weeks ago, I was in a car accident. So right away I told them that I was on the methadone program, that I needed to get my methadone. As soon as this nurse heard that, it was like night and day, the way she treated me. I was like a piece of you-know-what. J.X.: Yeah, after that she is asking me personal questions, like Oh yeah, how many milligrams are you on. 90 milligrams, whoa! And then she asked me, What were you using? and I didn t even answer her. It s like very stigmatizing. N.X.: That s part of what I had noticed. I don t like to go to the doctor and they ask me, Are you taking any medications?... So I say, Yes, I m on methadone. And they treat you different. It s like you don t have the right to be a good person. J.S.: Like a second-class citizen. N.X.: Yeah, like you don t have the right to be a good person just because you made a mistake when you were young, using drugs. D.X.: See, some people see it like you re an addict and.... N.X.: You re never gonna change. D.X.: See, methadone is your medicine, just like a diabetic takes insulin. While most spoke about drug use, negative experiences related to HIV status and race were also discussed. P.W. told of the burden of multiple stigmatization that affected her willingness to pursue (and therefor access) care. P.W.: It s true. We all prejudge and we all stereotype. Me, I already got three strikes against me because I m Black, I m a woman, and I m a lesbian. And then to be a drug user. With regards to HIV status and treatment by healthcare providers, though negative experiences continue to occur, some were able to cite progress on the part of healthcare providers in dealing with people infected with HIV.

Volume 20, Number 3/4 AIDS & Public Policy Journal 85 M.X.: Until that person s status is known, you would be surprised how many people would change in a heartbeat. I ve had it done to me in churches, hospitals. I gotta give [this organization] kudos though. This organization, in the 10 years or so that I ve been associated with it, it s been far and few between that people have come in from the outside, like y all for example. I ve had nothing but good experiences.... I really have found that people have treated me just like a normal human being, like they would treat their own. J.H.: Has it been more with your HIV status that you feel stigmatized than your drug use? J.R.: Yes, I feel it s more with my HIV status. I would say. Not with the.... I felt more stigmatized with my HIV. O.F.: Was he scared about the drugs or the HIV? J.R.: I guess because of the HIV. E.X.: I guess because of the HIV. Because I had been with this doctor all the time. J.H.: And he knew about your drug use? E.X.: Well, no. He didn t know about the drugs. He knew I was HIV positive. And then he sent me to another doctor. M.X.: So, yes, it has happened a few times. But it s not as J.H.: bad as I feel that it used to be. So you feel that physicians and nurses are becoming less judgmental about drug users? M.X.: Less judgmental, yes, I think so. And they are getting better with the HIV. But the people I ve worked with, my HIV status, and I have really no complaints at all because they have treated me with the utmost respect. I m very glad that they are around. I can talk to them and I feel comfortable with them. As HIV became more prevalent, clinics and hospitals moved towards providing more specialized care. M.T., an HIV-infected female, commented on this progression and about its affect on her satisfaction with the healthcare services she received. M.T.: O.F.: D.X.: That s why I have nothing bad to say about 9-5 [an HIV floor at the local hospital], because the doctors and the nurses they want to work there. They ask to work there. That s the HIV floor. They are beautiful people. DISCUSSION Our study found that the majority of injection and non-injection drug users, regardless of HIV-testing status, believed that pregnant women should be tested for HIV. We found that most favored voluntary testing, with an emphasis on the ability to give consent. Our findings were consistent with that of others that found that most women were concerned with the need to maintain voluntary choice, as well as to be aware of their HIV status for the sake of their children. 32 Additionally, pregnant women expressed concerns that women may be tested without their knowledge or without having received information about HIV testing and infection. 33 This strengthens the argument for informed consent and its value to patients. This is relevant because the method of prenatal screening currently in place in the State of Connecticut is voluntary testing with informed consent (an opt-in process). Subjects statements regarding having been tested in the past for HIV, regardless of their serostatus, are reassuring. They suggest that those who have been exposed to the counseling and testing process did not find it bothersome, leading them to recommend it to others. Voluntary, opt-in testing has led to improved testing rates in New York; 34 routine, opt-out testing has lead to improved testing rates in Connecticut. 35 These data still fall short of the 100 percent testing rate that could, theoretically, be achieved with mandatory prenatal and/or mandatory newborn testing. In Connecticut, having the safety nets of opt-out testing at delivery and of newborn screening would allow for zero transmission of HIV to infants. Resch and colleagues found that the benefit of switching to opt-out screening from optin in Connecticut s correctional system led to a reduction of only one infection every 21.5 years. 36 This small benefit is due to the relative success of voluntary (opt-in) prenatal testing, when it is partnered with mandatory new-

86 AIDS & Public Policy Journal Fall/Winter 2005 born screening. Another important conclusion is that routine (opt-out) prenatal screening would be significantly more effective when there is no other program, or when only voluntary screening is in place. This seems to argue against the need for a more aggressive screening program in the State of Connecticut. These findings, coupled with the acceptance of voluntary prenatal screening, suggest the current system be continued in the State of Connecticut. Given this, more attention should be given to finding new strategies to obtain consent during prenatal counseling. In addition, our data indicates that when presented with a choice at delivery, almost all women would consent to testing when their consent is sought. We believe that by optimizing prenatal testing, the need for such a safety net at delivery will be lessened. In spite of overwhelming support for voluntary testing, our focus group participants identified a subgroup of women whom they believed would be unwilling to provide informed consent, which they felt made mandatory testing necessary. These women were described as young women who were commercial sex workers or active drug users women at the highest risk for HIV infection. This belief highlights an important concern: to bolster the argument for voluntary testing, the focus group participants cited the belief that nearly every woman would consent to prenatal testing in concern for the best interest of her unborn child. They therefore considered women in the above mentioned risk groups to be unable to control their own actions for the best interest of their child. When we examine the inclusion criteria, we note that every participant in our study at one time belonged to at least one of the groups that they felt were in need of mandatory testing. This is a well-documented phenomenon of discrimination, especially racism. Termed internalized oppression, the discriminatedagainst group may adopt negative perceptions held by their oppressors. We spent considerable time discussing the discrimination that our subjects experienced from healthcare providers due to drug use and HIV. This is well represented in a statement from N.X., when he spoke about being treated as a second-class citizen due to his drug use. N.X.: Yeah, like you don t have the right to be a good person just because you made a mistake when you were using drugs. Similar ideas have been published in the literature on attitudes towards drug treatment. The self-defeating idea carried by some users, once a junkie, always a junkie is borne out of the feeling that healthcare providers don t expect drug users to overcome addiction, and many users agree and can cite many instances of personal and observed failure as corroboration. 37 This finding does not, in and of itself, warrant a change in policy towards mandatory testing of pregnant women. But it may provide direction regarding which groups need enhanced information on HIV testing during prenatal care. Attitudes in the focus groups and cohort populations were not uniform on newborn testing. More than 80 percent of the survey subjects believed that all newborns should undergo HIV testing. Of those, approximately 60 percent advocated testing in the absence of maternal consent. This is consistent with the definition of mandatory newborn screening. Surprisingly, approximately 14 percent of those surveyed did not support testing of all newborns, although this is not statistically significant. In the focus groups, however, most believed that the overall safety of a child should supersede a mother s decision, and they unanimously supported mandatory newborn testing. Here we find a discrepancy in beliefs between the subjects in the longitudinal survey and the members of the focus groups. There may have been increased support for mandatory newborn testing in the focus groups because years of implementation of the law produced positive results. In addition, as the focus continues to be on prevention of infection, mandatory newborn screening may seem less alienating and more accept-

Volume 20, Number 3/4 AIDS & Public Policy Journal 87 able in some settings. One salient belief was that most women would agree to test, primarily for the well-being of their child, which would eventually negate the need for testing to be mandatory. We found this to be consistent with previous studies in which women, regardless of their drug-using status, reported concern for their baby as a large motivation for undergoing HIV testing. 38 Since implementation of this law, those who are most affected the patient population support mandatory newborn screening. It is important that mandatory newborn screening is shown to be acceptable to the patient population because as the main barriers to implementation of such laws are concerns regarding ethics and acceptability, in addition to cost-effectiveness and overall efficiency. Resch and colleagues reported that the policy is cost-effective when compared with no screening; in addition, they reported that mandatory newborn screening produced results even when there was a successful prenatal screening process in place. 39 These findings may be interpreted to suggest that newborn screening may pose fewer barriers to adaptation in other states, with or without prior screening policies in place. Conversely, if most women would agree to newborn testing, even when it was not required by law, there would be a concern about the risk of the perceived coercion of a few. We find that even though women may agree to be tested to avoid subjecting their newborn to testing, that this is a choice that many would make gladly, and, therefore, it may not represent true coercion. As there is already a highly effective method of screening in place, at least in Connecticut, rather than focus on changing policy, it may be best to focus energy on other issues, such as assuring that women in high-risk groups always receive prenatal care. The majority of women in both studies said they felt that mandatory HIV testing of pregnant women would not deter pregnant women from seeking prenatal care. This is consistent with the findings of the Perinatal Guidelines Evaluation Project Group, that the factors that facilitate the receipt of prenatal care in pregnant women often include prevention of vertical transmission and concern for the well-being of other family members. 40 A statistically significant minority of IDUs (16.2 percent) said they would avoid prenatal care if HIV testing was the law. Although no one in our focus groups said they felt this way, they said that others would avoid prenatal care. This correlates with earlier negative beliefs by focus groups participants toward young women, active drug users, and commercial sex workers. We believe that the difference in opinion between the members of the focus groups and of the survey participants can be explained by the temporal relationship between the two. Although mandatory HIV testing of pregnant women is not a component of the law in the State of Connecticut, and our findings suggest that most women do not support it, it is reassuring that none of our focus groups subjects felt it would be a deterrent to receipt of prenatal care. The use of needles has traditionally been seen as a more stigmatizing form of drug use. IDUs have historically had lower rates of receiving prenatal care than NIDUs. Therefore, IDUs may be more likely to be displaced from healthcare services due to mandatory testing; this may account for our finding that more IDUs would avoid prenatal care if mandatory testing became law. Further studies may determine whether there have been changes in the utilization of prenatal care services after the mandatory testing law for newborns was implemented in the State of Connecticut. Our subjects continued to feel discriminated against because of their drug use and HIV status, although many felt that major improvements occurred surrounding the latter. We found that subjects believed that some people receive better treatment than others in the healthcare system. With respect to drug use, many described instances of being denied adequate analgesia by their physicians, being denied care, and being disrespected by some healthcare providers. In our focus groups,

88 AIDS & Public Policy Journal Fall/Winter 2005 many related how nurses and physicians changed their attitudes toward subjects once the subjects drug-using status was disclosed. Similarly, approximately 26 percent of our subjects believed that their symptoms were not adequately attended to, and that they did not receive care of equal quality. This is consistent with studies that have documented physicians bias and discriminatory attitudes. 41 The negative experiences of drug users in healthcare environments have been reported previously, and are echoed in the survey and focus group findings. 42 While these negative experiences with and negative attitudes toward the healthcare system may result in poor health outcomes for drug users, they may not affect rates of HIV testing of pregnant women and newborns. They may, however, be used to strongly advocate for changes in the delivery of healthcare for this population. LIMITATIONS OF THIS STUDY Our study has several limitations. Our focus groups were small, and were recruited by counselors at drug treatment centers. Therefore, they may not represent the general drugusing population. This may explain the difference in support for newborn and prenatal screening laws between the focus groups and subjects in the larger longitudinal sample. Second, all participants in the focus groups were either in treatment or at least in good standing with their treatment institutions, and may have been less likely to disagree with institutional regulations. We believe that this, if relevant, had a very small affect towards subjects attitudes, as instances of perceived discrimination and rebellion against institutions were discussed at great length. Another limitation is that members of focus groups may be less likely to express dissenting opinions in the presence of other focus group members. Last, the development of the themes that would be discussed was determined primarily before starting the first focus group, and so it is possible that we may have missed other aspects on the issue of prenatal and newborn screening that participants wanted to discuss. To avoid confusion over the language used in our focus groups, the difference between required testing versus the law (mandatory) was discussed in great detail. For our purposes, required was synonymous with what is defined as a routine testing strategy. We did not, however, discuss the real difference in the consent process between routine and voluntary testing, as it has been defined, to allow participants to draw their own conclusions regarding which consent process was more acceptable in leading them to choose between one or the other. We based this decision on studies that reported that patients and careproviders often differ in their perceptions of information that is given during prenatal counseling. Others have reported that even when careproviders inform women that testing is routine, women may not realize that they have the right to refuse. 43 Whether or not this distinction is made and fully understood in clinical practice is important because even now women may undergo testing without full knowledge of the process or their rights. CONCLUSIONS More than 10 years after the publication of ACTG 076 and the subsequent implementation of more aggressive perinatal HIV testing strategies, the U.S. has moved closer to eliminating AIDS in infants. 44 Debate continues, however, regarding the ethics and legality of HIV-testing programs. In our work here, we found that implementation of mandatory testing of newborns and universal, voluntary testing of pregnant women is largely accepted in the drug-using population. Increased agreement with mandatory newborn testing in the four-year period of its implementation in the State of Connecticut is remarkable. Despite initial concern and objection, experience seems to have led to increased approval. Mandatory newborn testing creates an additional