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© 1998
Eileen Hansen, Public Policy
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Contents
Gender and the Health Care System
Race/Ethnicity and the Health Care System
Poverty and the Health Care System
The Structural Context of the Health Care System
The Structure of the Health Care System
While recent therapeutic advances have caused AIDS deaths to drop, there remain significant gendered differences in who is living with and dying of AIDS-related causes. From 1995 to 1996, deaths among men dropped by 25% while those among women dropped by only 10%. Cases of AIDS were reduced by 8% in men, while increasing by 2% in women. This analysis provides an initial identification of barriers HIV-positive women face in gaining access to health care services that could save their lives.
HIV-positive women face a wide range of barriers to care and these barriers are deeply embedded in the very structures to which women turn for care. The AIDS Legal Referral Panel did extensive research of available literature and studies related to HIV-positive women's access to health care. A Medline search of over 13,000 journal articles related to women, HIV and access was conducted, and we reviewed several hundred of the most relevant articles and studies. The resultant analysis reveals that the current relationship of HIV-positive women to health care services is intricately connected to historic and current institutionalized racism and sexism; the providers who administer care to positive women; past and persistent HIV-related discrimination; coercive practices; and breaches of privacy/confidentiality. The pervasive and ongoing alienation of women, people of color and poor people from medical structures is the context within which women with HIV attempt to access the health care system.
Women with HIV are overwhelmingly poor women and women of color, and therefore face a more complex spectrum of barriers to care. It is well established that the social dimensions of gender have been overlooked in determining an individual's health care utilization and outcomes. Additionally, inequalities in the health outcomes of many communities of color have been well documented, and attitudes about HIV among communities of color have been affected by a protracted history of discriminatory practices and experimentation on people of color. It is critical that the ongoing structural abuses of these populations be addressed. The connection between these abuses and the ability of women to access health care is a key factor in the denial of quality health care for HIV-positive women.
HIV-positive women have suffered with regard to recent restructuring of health care services under managed care programs. Studies have shown that one-third of low income patients in managed care plans report that they have no regular doctor, half go to emergency rooms for care and ten percent report not receiving needed care. Additional research is needed into the effects that Medicaid managed care programs are having on HIV-positive women's use of health care services. Similarly, women's ability to access care has been profoundly affected by welfare reform and anti-immigrant legislation, which has denied many people with HIV their only access to health care coverage.
With regard to the overall structure of the health care system, the factors most frequently cited by HIV-positive women as impediments to their ability to receive adequate care are financial costs, long waits, lack of child care, inaccessible location of providers and a lack of coordinated and comprehensive care. Some women with HIV report encountering language discrimination while trying to see providers, along with breaches of their confidentiality stemming from health care providers utilizing patients' family members as translators. Women with HIV report their health care workers' lack of knowledge to be the most salient barrier to services. Many women feel that their health care providers have limited information or are misinformed about treating people with HIV. Women with HIV are at risk of terminating, or failing to obtain, care if their providers do not intelligibly and compassionately discuss their health and give them competent care.
Finally, this analysis examines women's perceptions about discriminatory and coercive practices at all levels of the health care delivery system _ from laws that require women or their newborns to test for HIV, to providers who refuse to treat positive women _ and how these practices affect women's willingness to access health care services. An issue of utmost concern for HIV-positive women is the ability of providers to maintain their confidentiality and privacy. Many women report difficulties in obtaining confidential care, and are quick to point out that this often prevents them from using services and resources that they need. All studies that identify barriers to care have found that HIV-positive women repeatedly raised the issue of providers' excessive and often coercive role in their treatment. These concerns include both problematic relationships with physicians and overall public health strategies such as mandatory HIV testing of pregnant women and newborns and coercive partner notification programs in some states. In the case of the latter, HIV-positive women repeatedly raise concerns over their personal safety if health care providers were to be required to notify their partners of their HIV status.
The factors that determine access to care also determine, to a significant degree, who lives or dies with AIDS. The deep roots of health care inequalities must be explored and in turn, a comprehensive response must be developed that addresses the severe impediments to care that HIV-positive women face in attempting to maintain their health. While the scope of the AIDS Legal Referral Panel's analysis is limited to identifying the multiple barriers that inhibit women's access to care, this examination highlights the urgent need to both formulate sustained policy and simultaneously engage in advocacy efforts. Only in so doing can we truly foster the health of all people living with HIV and confront the deadly denial inherent in women's health care.
Women have been living with and dying of AIDS-related causes since the beginning of the HIV epidemic. In 1981, six women displayed symptoms of immune deficiency similar to those in five previously healthy young gay men.2 However, only recently, as rates of new infections among African American women, Latinas and women living in certain urban areas have increased at alarming rates, has more than scattered attention been given to the significant impact that HIV has on women. While this realization will do little to change the fact that thousands of women with AIDS have died uncounted, unrecognized and unsupported, being informed about the changing demographics of the HIV epidemic is a crucial step in formulating thoughtful and just policies that will meet the needs of people with HIV and protect the rights of all people with HIV.
The proportion of AIDS cases among women in the U.S. has increased steadily each year, from 7% in 1985 to 21% in mid-1997.3 While new cases of AIDS were reduced by 8% in men from 1995 to 1996, they increased by 2% in women.4 While the rates of new infections among men dropped by a significant 12% from mid-year 1996 to mid-year 1997, rates of new infections among women during this time period dropped by under 2%.5 The means by which women are exposed to HIV have also changed in recent years, with heterosexual contact becoming a more frequent route of transmission. Between mid-1996 and mid-1997, 33% of all women's AIDS cases were attributable to injection drug use, and 40% were attributable to heterosexual contact.6, 7 However, there are significant differences in exposure based on age: women aged 15 - 24 are over twice as likely to be infected through injection drug use than through heterosexual contact, and have seen a steady decrease in heterosexual exposures since 1991.8 Women of color have been disproportionately affected throughout the epidemic: 77% of women's AIDS cases reported through mid-year 1997 were in women of color, with African American women alone accounting for 56% of the total cases.9 AIDS is now the leading cause of death among African American women aged 25 - 44.10
While recent therapeutic advances have caused AIDS deaths to drop, there remain significant gendered differences in who is living with and dying of AIDS-related causes. From 1995 to 1996, deaths among men dropped by 25% while those among women dropped by only 10%.11 A Seattle-based study reported in 1997 found that, among those who had prescriptions for antiretroviral therapy, 29% of the men and 18% of the women were taking protease inhibitors.12 Similar gendered differences in who is able to secure antiretroviral medications have been shown in studies conducted in Los Angeles, the South Bronx and Harlem.13 Furthermore, studies of Medicaid recipients with AIDS indicate that women use fewer HIV-related services than men.14 Clearly, there are significant disparities in who is able to access and receive health care services that determine who lives or dies with AIDS. While more women are living with HIV, this population's ability to obtain health care services remains a topic that has been little discussed.
This analysis provides an initial identification of barriers to health care that HIV-positive women face in gaining access to health care services that could save their lives. There is a wide range of barriers to care that HIV-positive women face and these barriers are deeply embedded in the very structures to which women turn for care. The current relationship of HIV-positive women to health care services is intricately connected to historic and current institutionalized racism and sexism; the alienating structure of the health care system; the providers who administer care to positive women; past and persistent HIV-related discrimination; coercive practices; and breaches of confidentiality/privacy. There is critical need for a comprehensive response to these factors and their inter-relationships that addresses the severe impediments to care that HIV-positive women must overcome in order to maintain their health. While the scope of the AIDS Legal Referral Panel's analysis is limited to identifying the multiple barriers that inhibit women's access to care, this examination highlights the urgent need to both formulate sustained policy and simultaneously engage in advocacy efforts. Only in so doing can we truly foster the health of all people living with HIV and confront the deadly denial inherent in women's health care.
We based this analysis on an extensive research of all pertinent literature and studies related to HIV-positive women's access to health care. A Medline search of over 13,000 journal articles related to women, HIV and access was conducted, and we reviewed several hundred of the most relevant articles and studies. Because there is very little information specifically about HIV-positive women accessing care, and because positive women face systemic barriers to care that are not necessarily related to their HIV status, we drew from diverse sources that addressed the larger context of women and health care. Additionally, we believed it imperative to consider the broad systemic and structural factors that often prevent HIV-positive women from accessing health care. For example, a recent study found significant disparities in access to health care services among people with HIV who were unstably housed compared with those who were stably housed.15 In order to develop a fully informed understanding of the complex relationship of HIV-positive women to the health care system, we position our analysis within the ongoing structural abuses faced by women in general.
Given the lack of current and comprehensive information that addresses barriers to care for HIV-positive women, and given the central role of the surrounding community in informing our public policy work, we are conducting an ongoing survey of HIV-positive women in the San Francisco Bay Area. The four-page informal survey asks questions that are intended to solicit a general reaction from the community of respondents about access to health care. Over one hundred surveys have been distributed through local women's HIV programs, including primary care clinics, drug treatment clinics, mental health organizations and support groups. Women are informed of the survey's purpose and voluntarily answer questions. Some very preliminary results from the survey are incorporated in this analysis where relevant, and we believe that ultimately, the survey findings may provide an extremely informative addition to this discussion.
Gender and the Health Care System
This analysis addresses the impact of gender, race/ethnicity and poverty on women's ability to access health care by separating these topics into artificially distinct sections. We recognize, however, that the effects of gender, race/ethnicity and poverty are inherently connected and we have tried to elucidate these connections where appropriate. For example, across all races and ethnicities, women have different health outcomes than men.16 While biomedical health care communities have traditionally overlooked the social dimensions of gender in determining an individual's health care utilization and outcomes, it has been well established that gender is a factor in predicting health access and trends.17 A 1993 survey of 3500 women and men found that 13% of women failed to receive needed care, compared to nine percent of men; this figure rose to 36% when women were uninsured.18 This survey also found that 39% of women questioned had not had a complete physical exam in the past year, while 35% had not had a Pap smear in the past year, a procedure that should generally be recommended annually for all women.19 A study conducted in 1992 found that there was a four-to-six month wait for women to obtain primary care in Atlanta's clinics and hospitals and a three-to-six month wait for gynecological care in New York City's public hospitals. It should be no surprise, then, that 80% of women entering the hospital system in New York City did so through emergency rooms.20 Even when women are able to access care, women's experiences with their provider are significantly less satisfactory. Two in five women (41%), compared to one in four men (27%), have changed physicians at some time because they were dissatisfied with their treatment and/or care.21 This would seem to be related to the fact that over twice as many women as men (25% v. 12%) reported that they have been "talked down to" or treated in a child-like manner by a physician.22
Gender has historically been invoked by the medical and public health fields as a way to normalize biological difference, thereby overlooking the intricate connections between gender, socioeconomic status and social factors that may put women at risk for HIV, such as the role of power dynamics in condom negotiation between women and men. Furthermore, women's health concerns have traditionally been seen as reproductive health issues, with the medical fields of obstetrics and gynecology seen as adequately covering women's health needs.23 Current moves to nationally mandate HIV testing of pregnant women and newborns, as legislated in New York state in 1997, along with ongoing prosecutions of pregnant women for using drugs while pregnant, must be viewed in the context of a long history of denying women agency in their reproductive health.24 A frightening number of medical providers note that it is appropriate, even necessary, to override decisions that women have made about their own health care. In a 1987 survey of the directors of fellowship programs in maternal-fetal medicine, only 24% of physicians consistently upheld a woman's right to refuse medical advice.25 Furthermore, 46% of these physicians believe that pregnant women who refuse medical advice should be detained by authorities.26 Indeed, much of the literature, research and policies related to women and HIV addresses women only as potential vectors of infection. In recent focus groups that addressed access to health care among HIV-positive women, several women raised concerns that access to care depended on their childbearing and/or disability status: "The only way they will give you care is if you're pregnant or disabled."27, 28, 29 The fact that until 1993, AIDS was defined entirely by male clinical manifestations of HIV-related illnesses reflects the medical community's life-threatening refusal to recognize women's specific AIDS-related conditions.30
Race/Ethnicity and the Health Care System
In order to fully understand the barriers that HIV-positive women face in accessing care, we must consider the fact that women with HIV are overwhelmingly women of color. Women of color have historically been, and continue to be, subjected to differential treatment and racism by providers and consequently receive substandard medical treatment and care. For example, a Florida study found that physicians were ten times more likely to report African American women than white women to state health authorities for suspected drug use, despite the fact that African American women test positive for drug use at rates similar to white women.31 A study of African American prenatal and postpartum women's ability to access health care and their experiences of racism found that respondents overwhelming reported that they had experienced a) pervasive stereotyping of pregnant African American women; b) indifferent, inaccessible and undignified care; and c) racist treatment at all stages of seeking and receiving health care services.32 Several women had been turned away from care due to perceived racism, and others had not tried to access care because they anticipated negative responses.33 Adults of color overall are over twice as likely to be refused medical care than white adults.34
Inequalities in the health outcomes of many communities of color have been well documented. Many of the differences in health outcome have been linked to lack of access to care. While the birth rate of Latina women is two times as great as that of other women, Latina women receive prenatal care one third as frequently as other women.35 Chinese American parents have been found to delay seeking care because they have experienced health care providers as unresponsive and culturally insensitive.36 Asian Americans are the least likely population to be satisfied with the quality of their health care services, with Chinese Americans and Korean Americans the least likely of all adults to rate their services as very satisfactory.37 Race-related discrepancies in accessing health care and in receiving quality health care are also experienced by people of color living with HIV. Receiving less preventive care and less ongoing quality health care, people of color with HIV have been found to be more likely than whites at similar stages of HIV to be admitted to the hospital and considerably less likely to be in outpatient care.38 A survey of HIV-positive individuals in Los Angeles found that only 54% of Latinos/as and 59% of African Americans were taking protease inhibitors, compared to 74% of whites.39 In a survey of 700 people with HIV in New York City, 33% of whites reported using protease inhibitors while only 19% of Latinos/as and 12% of African Americans surveyed were taking these medications.40 This study also found that men who contracted HIV through sex with men were twice as likely to be treated with combination therapy that included a protease inhibitor than were other populations.41
Knowledge of, and attitudes about, HIV/AIDS among communities of color have been affected by protracted histories of medical oppression and experimentation on people of color. Many Native American, Latina and African American women have been subjected to targeted sterilization programs, and harbor an intense distrust of a medical system that has engaged in such abuses of power.42 The Tuskegee Syphilis Study, in which 399 African American men were deliberately denied effective treatment for syphilis in order to document the natural history of the disease, has come to symbolize the extent to which people of color have been abused by this country's health care system.43 However, this event is only one of many in which people of color were knowingly mistreated, leaving many distrustful of and alienated from health care services.44,45 This history has profoundly affected attitudes about HIV and the health care system, and as a result directly affected the health and well-being of many women and men with HIV. One survey found that 20% of African American women did not trust what their health care provider told them about AIDS.46 This sentiment is echoed by many African Americans who believe that AIDS is a form of racial genocide. A 1990 survey by the Southern Christian Leadership Conference found that 35% of the 1056 African American church members believe that AIDS is a form of genocide; an additional 30% were unsure if this was true.47 A New York Times news poll found that 10% of African Americans thought that HIV had been created in a laboratory to infect the African American community, with an additional 20% believing that this could be true.48
Poverty and the Health Care System
In addition to experiencing the effects of gender and race/ethnicity on their ability to access health care, women living with HIV are more likely than their male counterparts to be poor and to therefore face additional barriers to care based on their low socioeconomic status.49 The fact that poor people have poorer health than people with more financial resources has been well established.50 While initial understandings of HIV transmission and risk focused predominantly on behaviors such as injection drug use,51 several recent inquiries have shown a correlation between poverty and risk for HIV.52 Findings from one study that explored the relationship between indicators of socioeconomic status and HIV prevalence in Massachusetts found that low-income areas were four times as likely to have high seroprevalence rates among those voluntarily testing.53 While this study did not show a direct link between poverty and seropositivity, a study of over 3500 people in Washington found that low-income was independently associated with high incidence of HIV infection.54 Poverty itself must not be seen as predisposing individuals to contracting HIV, but rather as a critical factor in alienating people from risk reduction messages and resources that are structured to serve the more advantaged.55 With lower levels of education and greater concentration in low-pay, limited mobility jobs, women are placed at greater risk for poverty than men.56 Once poor, women remain so for longer periods than men.57 Additionally, the incidence of poverty is significantly greater among women of color. The rates of poverty among both African American and Latina female heads of households are almost double the rates among white female heads of households.58
The
Structural Context of the Health Care System
A comprehensive consideration of the barriers to health care facing women with HIV must not overlook the serious changes in the overall structure of the health care system that are currently taking place. Access to health care is simultaneously determined by many factors, which are all connected and which must be considered as such in order to fully understand the institutionalized nature of the barriers to care that women face. While it is beyond the scope of this analysis to provide a detailed discussion of the broader structural changes that have profoundly affected HIV-positive women's access to health care services, it is necessary to locate our discussion within this larger context.
The passage in August 1996 of HR 3734, the Personal Responsibility and Work Opportunity Reconciliation Act of 1996, otherwise known as welfare reform, has eliminated many programs that provided a vital safety net to low-income people across the country. This legislation has already had direct and deleterious effects on the health and well-being of poor people, including many people living with HIV, who have relied on these programs for food, shelter and health care. For example, 44% of women currently living with AIDS became infected through injection drug use.59 However, this significant portion of women with HIV are now ineligible for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) if their determination was based on drug or alcohol addiction, and thus they no longer have access to health care through Medicaid or Medicare. Additionally, the impact of Proposition 187, which restricted access to health care for undocumented immigrants in California, has profoundly affected the ability of this population to access health care.60 A study of 58 health departments after the passage of Proposition 187 found that 37% of respondents reported a drop in patient visits, mostly in programs for preventive care of women and children.61
The move towards managed care has drastically changed the ability of health care providers to adequately provide accessible services for their patients. Managed care has become the primary model of health care delivery for women in both the public and private sectors, with two-thirds of low-income adults now in some form of managed care.62 Individual states have moved unprecedented numbers of low-income individuals into managed care systems, with one-third of Medicaid recipients now enrolled in Medicaid managed care arrangements63. While one in five low-income women depends on Medicaid for health insurance coverage, almost one-third of low-income women overall remain uninsured.64,65 This figure is even greater for women of color. Forty-seven percent of low-income Latina adults live without any form of health insurance,66 and fewer Asian/Pacific Island women are enrolled in Medicaid than are eligible.67 Despite the substantial number of women now enrolled in managed care programs or Medicaid managed care programs, a comparison of the experiences of those in managed care with those in fee-for-service systems has found that managed care has decreased accessibility of care.68 One-third of low-income patients in managed care plans report that they have no regular doctor, half go to emergency rooms for care and 10% report not receiving needed care.69 Women in HMOs are more likely than women in other private insurance plans to report not receiving needed medical care in the past year, as well as to rate their physicians negatively on aspects of the physician-patient relationship.70 This is not surprising, given that physicians must meet strict requirements that necessitate reducing the amount of time per patient.71 Furthermore, many low-income women rely on family planning and other public health clinics for care.72 If these additional sources of care are not included in Medicaid managed care plans, that fact could further reduce the accessibility of health care services for women.73 However, the ability of managed care programs, which are primarily for-profit,74 to improve the access to health services for low-income women is questionable. Managed care entities "simply are not interested in care of the poor, because it is unprofitable."75
The Structure of the Health Care System
While HIV-positive women must negotiate a managed health care structure that is reducing accessibility and quality of services, they also confront more immediate barriers to care. The factors most frequently cited by positive women that impede their ability to receive adequate care are financial costs, long waits, lack of child care, inaccessible location of providers and a lack of coordinated and comprehensive care. In a study of inner-city community health centers, almost half of the individuals interviewed _ including 42% of those with public insurance and 36% of those with private insurance _ stated that they had been prevented from accessing care because of prohibitive costs.76 In a series of focus groups with HIV-positive women, many women identified not only their lack of insurance coverage as a barrier to care, but were additionally concerned about the potential embarrassment they would have to face when negotiating payments.77 This group of women, as well as 24% of the individuals in the aforementioned study of inner-city community health centers, also stated that they had stayed away from care specifically because of the waiting time.78 Women have reported waiting for up to eight hours to be seen for emergency situations, and routinely wait for two to three hours.79 Because most clinics do not provide child care or even a child-friendly environment, women with children must either pay someone to take care of their children, find someone to take care of their children for free or bring their children to the many medical, drug treatment, mental health and social support appointments that HIV-positive women attend. Transporting children, in addition to themselves, can be a burdensome and costly task, especially when the clinic is not conveniently located. Some clinics have responded to this need by reimbursing women for their transportation costs, and some have arranged on-site transportation services.
In order to heighten accessibility, however, health care services must not only be woman-specific but also provide culturally competent, comprehensive and coordinated care in one central location. Many women have reported enduring substantial increases in travel time and cost to go to a clinic that is culturally responsive.80 One woman attending a focus group stated that, while the services at an HIV clinic were "great," she was "not too keen about them...I would like to see a facility like (this) for women because they never cater to us _ I mean, it's not a women's organization."81 Anecdotal information regarding the Women's and Children's HIV Specialty Program at the University of California, San Francisco, shows that women are more likely to come in for their own care if their children have simultaneous visits; conversely, women are also more likely to bring their children in for medical appointments if the women can be seen at the same time.82
Clinics that have responded to women's requests for services that are woman-centered and comprehensive have not only been able to increase access for women, but have done so at very little cost. Recently, a maternal-child program was started at an HIV outpatient clinic in New Orleans, and responded to factors that women themselves had identified as being necessary to facilitate access to care. While women and men had similar rates of attendance before the creation of the woman-specific program, women's rates of attendance as measured six months and one year after the creation of the clinic were almost double that of men.83 The clinic had directly responded to women's requests by 1) providing a separate area in the clinic where waiting rooms and examination rooms were private and oriented toward mothers and children; 2) increasing the number of female health care providers trained in female and pediatric needs; 3) offering on-site, free child care; 4) providing transportation services; 5) scheduling coordinated women's and children's appointments; 6) providing a physician daily to respond to emergencies; and 7) integrating on-site colposcopy and gynecologic services into the primary care clinic.84 Most of these interventions were done at no extra cost, and the total cost to the clinic was less than $50,000 per year.85 This is far less than costs that would have been incurred if several women had used the emergency room or waited until they required hospitalization.86 The success of this program highlights the direct correlation between the provision of woman-centered, comprehensive care and HIV-positive women's ability and willingness to access health care.
One of the most frequently cited concerns women express about their ability to access care centers around individuals who would actually provide them with care. These concerns, often based on experiences of poor treatment, are so strong that they frequently prevent women from availing themselves of any care.87 The vital role providers play in the accessibility of health care services cannot be overlooked and, when situated in the overall context in which women seek services, unfortunately contributes to an increasingly problematic picture of health care delivery.
Women with HIV are at risk of terminating, or failing to access, care if their providers do not intelligibly and compassionately discuss their health and give them competent care.88 In a survey of positive women about their expectations for care, respondents most often mentioned wanting a sense of personalized caring and respect by medical staff (56%), honest answers about their condition (46%) and education about their condition (30%).89 Women are clear about the type of relationship that fosters their health and well-being. "(I want) staff who are personable and considerate of my feelings and need for privacy...who will be patient with me and listen...I want the doctor to be understanding and be willing to talk about my problem."90 Experiences with providers who give devastating or incorrect diagnoses without any compassion have direct impact on whether women are able, or willing, to receive desperately needed services. One woman clearly connected a provider's ability to interact humanely with patients and patients' access to care, exclaiming, "You're talking about a person maybe ill, sick, and coming down there and dealing with their crazy attitude. And (the doctor) might turn them off and they may go out and not get properly taken care of because of the way they were treated, when they're already sensitive about coming to (the doctor).91" Additionally, many women report that providers have little or no knowledge about HIV. A study that explored barriers to health care seeking behaviors among women with HIV found that the barrier reported almost twice as frequently as any other was health care workers' lack of knowledge.92 Many women feel that their health care providers have limited information or are misinformed about treating people with HIV.93 As a direct result of their providers' lack of knowledge, women with HIV frequently feel that they are not adequately educated by their providers.94
HIV-positive women who speak little or no English face increased barriers to receiving competent care. Women report encountering language discrimination while trying to see a provider, and are often made to wait for many additional hours while clinics search for translators. One woman recalled, "if no one who speaks Spanish comes, they won't give me services...'Yes, we will see you, but we have to wait until someone comes....'Many patients who came later than me were going in (with) me just sitting there, and I even wanted to cry, I was so angry. And I couldn't stand the pain."95 The need for Spanish-speaking providers and translators is clear. A recent study examining the role of spoken language in access to health care for Latinos/as found that 14% of Spanish-only speakers had a provider who did not speak Spanish, and over 50% of Spanish-only speakers might not be able to communicate with their provider.96 Additionally, over 35% of Asians and Pacific Islanders live in households where no one over the age of 14 speaks English well.97 A health educator with the Asian and Pacific Islander Wellness Center in San Francisco, in discussing the need for culturally specific services for Asian and Pacific Island immigrants, cited an example of a Thai woman who was refused services by a community clinic until she found her own translator. The woman has not returned for care.98
While there is clearly a need for increased translation services in health care settings, women with HIV express a preference for linguistically proficient providers.99 This is often because of women's confidentiality and privacy concerns. One woman feared potential discrimination on the part of her translator, stating that "the last time I was in the hospital a ten-year old boy went there to serve as interpreter because I could not speak English."100 The AIDS Legal Referral Panel recently had a client call with information that a hospital custodian was used as a translator of confidential medical information to the patient's family. Additionally, providers must be able to speak according to their patient's culturally specific language of illness. Understanding illness and biomedicine's role in treating illness are largely culturally-specific and must be understood as such.101 This requires providing culturally sensitive services in the language of the patient, or, secondarily, providing on-site, sensitive translation services.
Discrimination,
Mandatory Approaches, Confidentiality and Privacy: Persistent
Barriers to Care for Women with HIV
Women with HIV face, and deeply fear, enduring HIV-related discrimination in the health care setting. Discriminatory and coercive practices exist at all levels of the health care delivery system _ from laws that require women or their newborns to test for HIV to providers who refuse to treat positive women. Given that most women with HIV are poor women of color, the discrimination that positive women face is multiply layered and is a particularly powerful force in further estranging them from the health care system. There are those who believe that HIV is wrongfully treated as an "exceptional" disease and that formulating mandatory approaches to "caring" for people with HIV is an effective method of health care provision. However, the following narratives real the profound ways in which women with HIV are, in fact, prevented from seeking health care because of the interconnectedness of discrimination, coercive approaches to the provision of care, and concerns about confidentiality and privacy.
Discrimination by providers in treating people with HIV has been well documented. For example, a study of 2004 physicians found that, although the majority (68%) believed that they had a responsibility to treat people with HIV, half of the group indicated that they would not provide care to people with HIV if they had the choice.102 A study of hospital workers found that 55% of the respondents reported spending less time caring for people with HIV than with other patients with similar acuity, and 38% actively tried to avoid coming into contact with, or caring for, people with HIV.103 Furthermore, at least two other surveys found that 40% of doctors would refer, or refuse to accept, care for new patients with HIV.104 In light of these findings, it is not surprising that 19% of HIV-positive individuals surveyed reported that they had been refused treatment by a provider because of their HIV status.105
A recent study looking at women's experiences regarding the disclosure of their HIV status either by them, or to them, found that women who have _ or think they have _ HIV may be reluctant to seek health care services because of concerns about potential discrimination.106 Women with HIV have, in fact, been turned away from treatment as a result of their HIV status. One woman recalled finding out that she was HIV-positive and noted, "The doctor told me that I am HIV-positive and (that) they are no longer (my) doctor....He just showed me to the door and I'm standing out there in the middle of the street, don't know which way to go or what to do."107 Many women have been discriminated against in such a way, and most have experienced negative treatment.108 The direct result that being so poorly treated has on a woman's health is evidenced by another woman's experience. "I think they (providers) feel disgust. Sometimes, I have been really sick and I haven't gone to the hospital for that reason....Look, the woman will touch you, but just barely, I get so angry that people will touch me that way....I think that they are discriminating against us. They discriminate against us in that way."109 Women of color are aware that this differential treatment is also related to their race/ethnicity. "Because we are Latina, they put many obstacles in front of us in order to give us help."110 Thus, both women who are receiving care and those who have not yet entered the health care system are acutely aware of the discrimination they face, and are as a result, less likely to access crucial health services.
Women are further alienated from the health care system because of coercive or mandatory policies and practices that pre-judge women and deny them the right to make their own medical decisions. Women with children frequently face compromised services because of providers' negative opinions about their decision to have children. Sometimes these judgments seem to take priority over the provision of care for obvious symptoms and suffering.111 As a result of such gender-based judgments, providers make crucial decisions about women's treatment for them, failing to either explain the treatment or give them any decision-making power in their own health care. One woman left her provider after the provider repeatedly imposed treatment decisions on the woman.112 Providers continue to render care that the provider feels is necessary rather than care that is centered around decisions and choices made by women. All studies that identify barriers to care have found that HIV-positive women repeatedly raise the issue of providers' excessive and often coercive role in their treatment.113 This underscores the profound impact of coercive practices in estranging women from health care.
One of the current policy efforts that would establish a coercive medical practice is contained in the focus on mandating HIV testing of pregnant women and newborns, as legislated at the federal level in the 1996 Ryan White Care Act Amendments, and in New York State in 1997. While early identification and treatment of HIV in infants should certainly be a major public health goal, there is substantial evidence that mandatory testing efforts drive people away from health care and other services.114 A study at Abington Memorial Hospital in Pennsylvania found that the mandatory testing of pregnant women for HIV would result in an overall decrease in the total number of women who were tested because of the high numbers of women who decided not to seek care in order to avoid mandatory testing.115 Additional research overwhelmingly shows that voluntary testing works _ that pregnant women want to be educated, counseled and offered the option of testing. Several studies have found that 90% - 96% of women who are given the opportunity of voluntarily testing for HIV agree to be tested.116 It is through the trusting relationship among provider and patient, fostered by a voluntary approach, that women access health care, including HIV education, testing, counseling and referrals. While proponents of mandatory testing assert that those at most risk are the least likely to voluntarily test for HIV, one recent study showed that high risk groups, such as injection drug users, are more likely to agree to be tested than those without risk factors.117 The inability of mandatory testing laws to provide needed health care services for a number of infants _ at the expense of the health and well-being of many women and infants has been demonstrated in New York state by the HIV Law Project of New York. In August 1997, the HIV Law Project filed suit against the state's mandatory testing law, which has been in effect since February 1997. The suit, R.Z. v. Pataki, claims multiple violations of the rights of women whose infants were tested without their consent. These violations include public disclosure of HIV status, failure of providers to offer appropriate counseling and information to new mothers, and attempts to compel the treatment of newborn infants with AZT.118 Women have already reported threats by their physicians to report them to the Child Welfare Administration if they did not comply with physician orders to administer AZT to their children.119
In the face of such coercive treatment and discrimination, an issue of utmost concern for HIV-positive women is the ability of providers to maintain their confidentiality and privacy. Many women report difficulties in obtaining confidential care, and are quick to point out that this often prevents them from using services and resources that they need.120 As one woman stated, "Some people won't even go to the hospital because you either got relatives or someone that knows your relatives or friends or somebody that even works there. Confidentiality is very rare at the hospital. It's very bad."121 Another woman was more explicit about the consequences of being seen seeking HIV services, stating, "The HIV clinic is a stigma. They know why you are going in there...so, therefore (you) are not going to get treatment."122 While obtaining services at an HIV-specific public health clinic is a particular barrier to care, all studies show that women experience and/or fear breaches of confidentiality within both the public and private health care settings.123 The fear of imminent confidentiality violations is clear in the following statement, echoed by all the women in one study. "Don't sign anything, don't tell anybody, don't even tell the medical people. Yet, if you don't tell the medical people, they'll jump all over you."124 The breaches of confidentiality and privacy that many women experience are based on both careless record keeping and insensitive provider behavior.125 Women sometimes have to monitor the handling of their own health records, which have been carelessly laid out in public areas, as well as the awareness of providers about confidentiality/privacy.126 As one woman recalled, "This doctor in the emergency room _ and there's other people waiting to be seen, too _ he stands up there and hollers as loud as he can, 'How long have you had AIDS?' I was so crushed....I just got up and walked out."127
In the two most extensive studies of provider-related barriers to care for positive women, participants expressed strikingly similar fears that their names would be put on an HIV computer list that could be available to insurance companies, social service agencies or even the community at large.128 While the source of the list was unclear, study participants perceived that individuals and/or agencies were attempting to identify them as HIV-positive.129 Several women had not sought, or had delayed, health care and entitlements for which they qualified because of these overwhelming fears. "That was the hardest thing for me (concern that my name would be put on a list). It took me two to three months before I could bring up the courage (to apply for entitlements), and that's what it took, courage....I know that legally they're not supposed to (give out my name), but you'd be surprised how things happen."130 These fears, and the barrier to health care access that they represent, have serious implications for the possible institution of a mandated system of HIV name-based reporting or coercive partner notification and tracking of people with HIV.131 Additionally, the Federal Privacy Protection Act, currently under discussion in Congress, would potentially grant unlimited access to all private medical records to federal agencies, without obtaining either patient permission or legal authority, and without ever informing patients.132 The ability of this act to actually protect privacy is highly questionable, in light of the aforementioned breaches of confidentiality.
The impact of partner notification programs for HIV-positive women presents an example of a public health law that frequently fails to consider the specific and potentially life-threatening repercussions of failing to uphold an individual's right to privacy. Partner notification, in order to be effective and to fully protect the rights of individuals with HIV, must be completely voluntary and confidential, and be presented in the context of adequate support, information and counseling. For many women, partner notification is a complex issue. Far too many women have been infected by someone who did not disclose his HIV infection. Without the discovery of their HIV status through some other mechanism, many women would never know that their partner had infected them. So, for some women, partner notification is an important service that should be provided not only whenever those who are infected need encouragement, skills or help in notifying past or current partners, but additionally, should be automatically conducted. However, most women who are educated about partner notification understand its double-edged nature and, in particular, the likelihood of their being punished for an infection not necessarily of their own creation _ and adamantly do not support "required" or coercive partner notification. Preliminary results from the AIDS Legal Referral Panel's initial survey of HIV-positive women regarding barriers to care have identified the vast majority of these women as supporting the voluntary practice of notifying partners, with a non-coercive, supportive approach. Eighty-one percent of respondents believed that people with HIV should notify current and future partners that they are HIV-positive, and 73% of respondents believed that people with HIV should notify past partners of their HIV status. However, only 18% of survey participants believed that there should be a law, or any form of counseling suggesting that people are required to notify partners. One survey respondent felt that non-consensual partner notification constituted a "violation of privacy."133
These findings are indicative of the backdrop of violence against which women locate the importance of maintaining confidentiality and privacy. Women's confidentiality concerns as related to partner notification speak to the failure of partner notification programs to consider the social context of notification. Women with HIV have been shown to be at risk for retaliatory violence if the partner is notified and blames her for infection.134 One statement by a survey respondent is indicative of the reasons why so many women may fear involuntary notification. "I was hurt by somebody who infected me, and I don't want to upset anyone." A study of 136 medical and mental health professionals who work with HIV-positive women found that 45% of these providers had at least one female client who expressed fear of physical violence upon disclosure, 56% had clients who expressed fear of emotional abuse and 66% had clients who expressed fear of abandonment. Among the providers who reported these fears, 18% of their clients feared physical abuse, 29% feared emotional abuse and 35% feared abandonment.135 The providers described the intensity of violence that women had suffered upon disclosure, describing patients who were beaten, kicked, shot, raped and endured knife wounds to the face. One woman broke both legs as she jumped from a third floor window to escape being shot; another returned home to find her belongings in the street; others were denied access to their children.136 However, despite the severity of these situations, the CDC's 1993 Treatment Guidelines on STDs hold that state health officials should notify known partners whenever an HIV-positive individual is unwilling to do so.137 While the specific effects of partner notification laws on women's ability to access early care and treatment are unknown, patient resistance to partner notification has been well documented with regard to both contact tracing and patient referral strategies.138 Thus, women's serious concerns about confidentiality and privacy must be viewed within the context of the potential for harm that current public health measures have neglected to consider. Additionally, these concerns underscore the need to re-examine current public health measures that do not consider the unique and severe repercussions for women with HIV who must notify partners against their will and/or without adequate support.139
The current relationship of HIV-positive women to the health care system is best considered as intricately connected to the pervasive and ongoing alienation of women, people of color and poor people from medical structures. This context within which women with HIV attempt to access the health care system is fraught with significant barriers to health care at many interlocking levels. While it is beyond the scope of this analysis to provide tangible mechanisms by which women can become less estranged from health services, it is imperative to first understand the structural context in which women seek health care. HIV-positive women are overwhelmingly poor women and women of color, and therefore face a more complex spectrum of barriers to care. It is well established that the social dimensions of gender are overlooked in determining an individual's health care utilization and outcomes. Additionally, inequalities in the health outcomes of many communities of color have been well documented, and attitudes about HIV among communities of color have been affected by a protracted history of discriminatory practices and experimentation on people of color. It is critical that the ongoing societal abuses of these populations be addressed. The connection between these abuses and the ability of women to access health care is a key factor in the denial of quality health care for HIV-positive women.
Women with HIV have recently been subjected to punitive policy and organizational reforms which disproportionately affect poor people and people of color. Given the current restructuring of health care services under managed care programs, many of the factors that preclude women from accessing health services can only be addressed by further exploring the impact of managed care mandates on the health of women. Additional research is needed into the effects that Medicaid managed care programs are having on HIV-positive women's use of health care services. Similarly, women's ability to access care has been profoundly impacted by welfare reform and anti-immigrant legislation, which has denied many people with HIV their only access to health care coverage. Understanding the inherent connections between these legislative reforms and the health of those affected, including people with HIV, underscores the importance of expanding the dialogue between organizations working to maintain the rights and well-being of people with HIV and organizations working on welfare-related reforms. Finally, recognizing that HIV-related discrimination, violations of confidentiality and privacy and coercive approaches to health care assume particular meanings when placed in the context of women with HIV, the critical role these acts have played in determining women's access to care must be explored in depth. The particular effects of mandatory testing and the implementation of partner notification on women must be viewed with regard to the resultant harms which many women must face.
The factors that determine access to
care also determine, to a significant degree, who lives or dies
with AIDS. The economic, political and discriminatory roots of
health care inequalities have perpetuated powerful trends in the
utilization of health care services that contribute to both HIV
incidence and outcome. However, these inequalities are not inevitable
or immutable. In order to address the nexus of the many barriers
to care, we must simultaneously develop sustained, community-driven
advocacy and policy efforts. Only in so doing can we formulate
effective and timely responses to promote the health of all
people living with HIV.
1. Sonja Mackenzie provided significant research and writing for this analysis; Irwin E. Keller, Esq. assisted in editing; and the Northern California Grantmakers AIDS Task Force contributed funding.
2. The 1981 edition of the MMWR became the first official recognition of AIDS, while these women's compromised immune systems became the first of many to be unrecognized and accepted as part of the "normal" poor health status of low-income women and women of color. Guinan ME, Hardy A. 1987. Epidemiology of AIDS in Women in the United States: 1981 through 1986. JAMA 257:2039-2042, and Centers for Disease Control. 1981. Pneumocystic Pneumonia - Los Angeles. Morbidity and Mortality Weekly Report (MMWR) 30:250-252, cited in Krieger N, Zierler S. 1997. Reframing Women's Risk: Social Inequalities and HIV Infection. Annu. Rev. Public Health. 1997. 18:401-436.
3. Centers for Disease Control and Prevention (CDC). 1997 (mid-year). HIV/AIDS Surveillance Report. Atlanta, GA: U.S. DHHS, PHS, Vol.9, No.1, and Centers for Disease Control and Prevention. 1997 (mid-year). CDC Update: HIV/AIDS and Women in the United States. Atlanta, GA: U.S. DHHS, PHS. It is also interesting to note that, as of June 1997, 25% of reported women's AIDS cases were attributed to unknown risk categories, with 17% of men's AIDS cases reported at the same time attributed to unknown risk.
4. Centers for Disease Control and Prevention. Update: Trends in AIDS Incidence - United States, 1996. Morbidity and Mortality Weekly Report. 1997. 46(No.37).
5. CDC, HIV/AIDS Surveillance Report, mid-year 1997.
6. This compares with the fact that 44% of cumulative women's AIDS cases are attributable to injection drug use, and 39% to heterosexual contact. Ibid.
7. Patterns of transmission among women also vary greatly according to region. For example, during this same period, 56% of all women in San Francisco with AIDS were exposed through injection drug use (IDU), and 29% through heterosexual contact; 63% of 1996 cases were attributable to IDU, and 28% to heterosexual contact. San Francisco Department of Public Health, AIDS Office. 1997 (year-end). AIDS Quarterly Surveillance Report.
8. Wortley PM, Fleming PL. 1997. AIDS in Women in the United States: Recent Trends. Journal of the American Medical Association. Vol.278, No.11:911-916.
9. Ibid.
10. CDC, HIV/AIDS and Women in the United States, mid-year 1997.
11. Centers for Disease Control and Prevention. Update: Trends in AIDS Incidence - United States, 1996. Morbidity and Mortality Weekly Report. 1997. 46(No.37).
12. Buskin S, Sarkissian J et al. Antiretroviral Use and Other Care Markers in a Cohort of Women and Men Followed by the Seattle Spectrum of HIV-Related Diseases Study. Presented at the National Conference on Women and HIV. May 1997, cited in Denenberg R. 1997. HIV Infection in Women: Still Untreated, Still Deadly, in the Gay Men's Health Crisis (GMHC) Treatment Issues Newsletter, Vol.11, No.7/8, p.1.
13. Odem S, Sorvillo F et al. The Prescription of Protease Inhibitors among Women with AIDS in Los Angeles County. Presented at the National Conference on Women and HIV. May 1997, and preliminary information from Melnick et al. 1994. Research conducted through the Community Program for Clinical Research on AIDS, cited in Denenberg. Ibid.
14. Hogan AJ, Solomon RR, Bouknight RR, Solomon CT. 1991. Under-Utilization of Medical Care Services by HIV-Infected Women: Some Preliminary Results from Michigan's Medicaid Program. AIDS. Vol.5, No.3:338-339, cited in Sowell RL et al. 1996. Barriers to Health-Seeking Behaviors for Women Infected with HIV. Nursing Connections. Vol.9, No.3:5-17.
15. Arno PS, Bonuck KA. 1996. The Impact of Housing Status on Health Care Utilization Among Persons with HIV Disease. Journal of Health Care for the Poor and Underserved. Vol.7, No.1:36-49. The study found that people with HIV who were unstably housed (this includes people living in shelters or on the streets, living with friends or family, living in single-room occupancies [SROs] and living in an AIDS residence) utilized ambulatory health care services at lower rates and emergency room services at higher rates than people with HIV who were stably housed (51% v. 35%). Additionally, the study found that women were, on average, twice as likely to be unstably housed, and people of color were four times as likely to be unstably housed.
16. Krieger N, Fee E. 1994. Man-Made Medicine and Women's Health: The Biopolitics of Sex/Gender and Race/Ethnicity. International Journal of Health Services. Vol.24, No.2:265-283.
17. Thorne S, McCormick J, Carty E. 1997. Deconstructing the Gender Neutrality of Chronic Illness and Disability. Health Care for Women International. Vol.18:1-16.
18. The Commonwealth Fund. 1993. Survey of Women's Health. New York: The Commonwealth Fund.
19. Ibid.
20. U.S. Department of Health and Human Services' Health Resources and Services Administration. 1997. Responding to the Needs of Women with HIV. Washington, DC: U.S. GPO.
21. The Commonwealth Fund. 1993. Survey of Women's Health. New York: The Commonwealth Fund.
22. Ibid.
23. Krieger N, Fee E. 1994.
24. Bragg R. A Defender of God, the South and Unborn Addicts: South Carolina Attorney General Charles M. Condon is Known for His Prosecution of Pregnant Crack Cocaine Addicts for Child Neglect. New York Times, January 13, 1998, p. A1.
25. Kolder V et al. 1987. Court-Ordered Obstetrical Interventions. New England Journal of Medicine. Vol.316:1192-1196.
26. Ibid.
27. Center for Women Policy Studies. 1997. We Know We're Not Alone: The Voices of Women Living with HIV/AIDS in the Metropolitan DC Area: A Content Analysis of Focus Groups with African American, Latina and White Women. Washington, D.C.: April 1997.
28. The tendency to equate women's health with reproductive health has also been identified as a barrier to a comprehensive analysis of the health care needs of women of color. See Zambrana R. 1988. A Research Agenda on Issues Affecting Poor and Minority Women: A Model for Understanding their Health Needs. Women Health. Vol.12:127-160, cited in Juarbe TC. 1995. Access to Health Care for Hispanic Women: A Primary Health Care Perspective. Nursing Outlook. Vol.43, No.1:23-28.
29. For example, eligibility for disability and many free medical and social services is currently dependent on having an AIDS diagnosis. On June 25, 1998, the U.S. Supreme Court ruled on its first HIV-related case, Bragdon v. Abbott, and held that a person with asymptomatic HIV infection is, in fact, considered to be "disabled" for the purpose of protection from discrimination under the Americans with Disabilities Act (ADA). (The AIDS Legal Referral Panel, along with the AMA, the ACLU and LAMBDA Legal Defense Fund, among many other organizations, signed on to an amicus brief in support of the HIV-positive, asymptomatic appellant.) However, one generally must be much more significantly affected by one's HIV in order to qualify as "disabled" for the purpose of eligibility for benefits or services.
30. Centers for Disease Control and Prevention. 1993. Revised Classification System for HIV Infection and Expanded Surveillance Case Definition for AIDS Among Adolescents and Adults. MMWR. 41:961-962. 1992.
31. Chasnoff IJ, Landress HJ, Barrett ME. 1990. The Prevalence of Illicit Drug or Alcohol Use During Pregnancy and Discrepancies in Mandatory Reporting in Pinellas County, Fla. New England Journal of Medicine. Vol.322:1202-1206. and Lusane C. 1991. Pipe Dream Blues: Racism and the War on Drugs. Boston, MA: South End Press, cited in Krieger N, Zierler S. 1997. Reframing Women's Risk: Social Inequalities and HIV Infection. Annu. Rev. Public Health. Vol.18:401-436.
32. Murrell NL, Smith R, Gill G, Oxley G. 1996. Racism and Health Care Access: A Dialogue with Childbearing Women. Health Care for Women International. Vol.17:149-159.
33. Ibid.
34. Five percent of people of color reported having been refused care, compared with 2% of white adults. The Commonwealth Fund. 1995. National Comparative Survey of Minority Health Care. New York: The Commonwealth Fund.
35. Juarbe TC. 1995.
36. Becerra R. 1991. Knowledge and Use of Child Health Services by Chinese-Americans. Health and Social Work. Vol.6:29-38, cited in Gany F, Thiel de Bocanegra H. 1996. Overcoming Barriers to Improving the Health of Immigrant Women. Journal of the American Medical Women's Association. Vol.51, No.4:155-160.
37. The Commonwealth Fund. 1995. National Comparative Survey of Minority Health Care. New York: The Commonwealth Fund.
38. Piette JD, Mor V, Mayer K, Zierler S, Wachtel T. 1993. The Effects of Immune Status and Race on Health Service Use Among People with HIV Disease. American Journal of Public Health. Vol.83, No.4:510-514. This study found that people of color were admitted to hospitals 20% more often, had 35% more patient days per person/year and had only 74% as many HIV clinic visits.
39. These numbers are indicative of the racial/ethnic disparity in access to medications. However, they should not be interpreted to reflect the rates of protease inhibitor use among women. AIDS Project Los Angeles. 1997. Knowledge, Access and Implications of Protease Inhibitor Use Among Clients of AIDS Project Los Angeles. p.1.
40. Richardson, L. White Patients Have More Access to New AIDS Drugs, A Survey Shows. New York Times. July 27, 1997, p.A25.
41. Ibid.
42.Thomas S, Crouse Quinn S. 1991. The Tuskegee Syphilis Study, 1932-1972: Implications for HIV Education and AIDS Risk Education in the Black Community. American Journal of Public Health. Vol.81:1498-1505.
43. Gamble VN. 1997. Under the Shadow of Tuskegee: African Americans and Health Care. American Journal of Public Health. Vol.87:1773-1778.
44. Ibid.
45. There continues to be concern about the kind of research conducted by United States researchers in this country and, in particular, in developing countries. For example, the recent controversy over the placebo drug trial conducted on pregnant women with HIV in Africa and Thailand highlights the extent to which ethical considerations in research remain unaddressed. For further information, see Stolberg SG. Placebo Use Is Suspended in Overseas AIDS Trials. New York Times. February 19, 1998, p.A16.
46. Healton C et al. 1996. The Impact of Patient Education about the Effects of Zidovudine on HIV Perinatal Transmission: Knowledge Gain, Attitudes, and Behavioral Intent among Women with and at Risk for HIV. American Journal of Preventive Medicine. Vol.12:45-52.
47. Thomas S, Crouse Quinn S. 1991. The Tuskegee Syphilis Study, 1932-1972: Implications for HIV Education and AIDS Risk Education in the Black Community. American Journal of Public Health. Vol.81:1498-1505.
48. The AIDS 'Plot' Against Blacks. New York Times. May 12, 1992, p.A22.
49. Centers for Disease Control. 1993. Update: Mortality Attributable to HIV Infection/AIDS among Persons Aged 25-44 Years - United States, 1990 and 1991. MMWR 42:481-486, and Chu S, Diaz T. 1993. Living Situation of Women with AIDS. Journal of Acquired Immune Deficiency Syndromes. Vol.6, No.4:431-432, cited in Farmer P, Connors M, Simmons J, eds. 1996. Women, Poverty and AIDS: Sex, Drugs and Structural Violence. Monroe, Maine: Common Courage Press.
50. Rowley DL, Krieger N, Herman AA, Avery B, Phillips MT. 1993. Racism, Sexism, and Social Class: Implications for Studies of Health, Disease, and Well-Being. American Journal of Preventive Medicine. Vol.9:82-122.
51. Murrain M, Barker T. 1997. Investigating the Relationship Between Economic Status and HIV Risk. Journal of Health Care for the Poor and Underserved. Vol.8, No.4:416-423.
52. See Fife D, Mode C. 1992. AIDS Incidence and Income. Journal of Acquired Immune Deficiency Syndrome. Vol.7, No.3:1105-1110, and Simon PA, Dale JH et al. 1995. Income and AIDS Rates in Los Angeles County. AIDS. Vol.9, No.3:281-284.
53. Murrain M, Barker T. 1997. This study used 1990 census data to indicate poverty level of zip codes.
54. Krueger LE, Wood RA, Diehr PH, Maxwell CL. 1990. Poverty and HIV Seropositivity: The Poor are More Likely to be Infected. AIDS. Vol.4, No.8:811-814.
55. Ibid. The authors identify two ways in which prevention and risk reduction messages are inaccessible to poor people. First, messages may not be physically located in appropriate places, or may not utilize appropriate forms of media for poor people, and second, the content of the messages may not be conveyed in a relevant and appropriate manner. The authors also note that, since poverty overall affects people of all ages, ethnicities and sexual orientations, it can be difficult to create messages that are targeted specifically to those who are poor.
56. Thomas V. 1994. Using Feminist and Social Structural Analysis to Focus on the Health of Poor Women. Women and Health. Vol.22:1-15.
57. Ibid.
58. Ibid.
59. CDC, HIV/AIDS Surveillance Report, mid-year 1997.
60. Gany F, Thiel de Bocanegra H. 1996. Overcoming Barriers to Improving the Health of Immigrant Women. Journal of the American Medical Women's Association. Vol.51, No.4:155-160. Approximately half a million women immigrate to the United States every year. This number is somewhat higher than the number of men who immigrate to the U.S. (1.03:1), and significantly higher among certain countries of origin (including the former Soviet Union, Colombia, the Philippines and Korea).
61. Ibid.
62. The Commonwealth Fund. 1997. Low Incomes Often Mean Poor Health and Poor Health Care. The Commonwealth Fund Quarterly. Vol.3, Issue 2.
63. The Commonwealth Fund. 1996. Medicaid Critical Source of Health Insurance for Low Income Women. The Commonwealth Fund Quarterly. Vol.2, Issue 1.
64. Ibid.
65. There is considerable debate about the role of both public and private coverage, as compared with no coverage at all, in determining access to health care services and health outcomes. While it is generally, but not unanimously, agreed that any form of coverage does permit better access to services, the health outcomes of those who are uninsured have been found to be better than those among people on public assistance. See Himmelstein DU, Woolhandler S. 1995. Care Denied: US Residents who are Unable to Obtain Needed Medical Services. American Journal of Public Health. Vol.85, No.3:341-344, for findings that Medicaid recipients had measures of access to care similar to those of the uninsured. Two proposed reasons for the discrepancies in health care access and outcomes have been identified: 1) public insurance may not necessarily lead to poorer health, but poorer health puts people on public insurance, and 2) there are significant disparities in general health among those with public benefits and those with private insurance. See Hahn B, Flood AB. 1995. No Insurance, Public Insurance, and Private Insurance: Do These Options Contribute to Differences in General Health? Journal of Health Care for the Poor and Underserved. Vol.6, No.1:41-59. The association between poorest health and public assistance has been documented with regard to HIV. See Bonuck KA, Arno PS et al. 1996. Self-Perceived Unmet Health Care Needs of Persons Enrolled in HIV Care. Journal of Community Health. Vol.21, No.3:183-198, which found that the impact on people with HIV of having Medicaid or Medicare was almost identical to that of being uninsured. The aforementioned Massachusetts study found greater HIV rates among those who had Medicaid than those who had no health care coverage at all. Individuals with no insurance were 2.5 times more likely, and those with Medicaid were 3.4 times more likely, to test positive for HIV than those who had private insurance. See Murrain M, Barker T. 1997. Investigating the Relationship Between Economic Status and HIV Risk. Journal of Health Care for the Poor and Underserved. Vol.8, No.4:416-423.
66. he Commonwealth Fund. 1997. Low Incomes Often Mean Poor Health and Poor Health Care. The Commonwealth Fund Quarterly. Vol.3, Issue 2.
67. Wang GM. 1996. Managed Care and Asian Pacific Island Women. Journal of the American Medical Women's Association. Vol.51, No.4:146.
68. Ibid.
69. Ibid.
70. Scott Collins K, Simon LJ. 1996. Women's Health and Managed Care: Promises and Challenges. Women's Health Issues. Vol.6, No.1:39-45. Based on the Commonwealth Fund Survey of Women's Health, 14% of women in HMOs v. 10% of non-HMO women failed to receive needed care. The high cost of care was the main reason for non-HMO women, but high costs, lack of coverage and inability to get an appointment were the reasons for women in HMOs.
71. For example, physicians are receiving notices indicating that they have to begin seeing an increased number of patients per hour. Goldwyn RM. 1995. Managed Care: Now You See It, Now You Don't. Plast Reconstr Surg. Vol.96:1697, cited in Uzych L. 1996. Learning from the Community about Barriers to Health Care - Letter to the Editor. Obstetrics and Gynecology. Vol. 87, No.5:797.
72. The Commonwealth Fund. 1997. Low Incomes Often Mean Poor Health and Poor Health Care. The Commonwealth Fund Quarterly. Vol.3, Issue 2.
73. Ibid.
74. Scott Collins K, Simon LJ. 1996.
75. Wolinsky H. 1995. Ethics in Managed Care. Lancet. 345:1499, cited in Uzych L. 1996.
76. Kiefe CI, Hyman DJ. 1996. Do Public Clinic Systems Provide Health Care Access for the Urban Poor? A Cross-Sectional Survey. Journal of Community Health. Vol.21, No.1:61-70.
77. Leppert PC, Partner SF, Thompson A. 1996. Learning from the Community about Barriers to Health Care. Obstetrics and Gynecology. Vol.87, No.1:140-141.
78. Wolinsky H, 1995, and Kiefe CI, Hyman DJ, 1996.
79. One woman reported, "One day, I had an emergency, and I went (to the hospital)...at around nine-thirty, and from nine-thirty until after five o'clock, it was almost six, when they called me in. I was so hungry I could barely stand it, until I finally heard that they said (my name). Center for Women Policy Studies, 1997.
80. bid.
81. Ibid.
82. The Women's and Children's HIV Specialty Program at the University of California, San Francisco provides complete and multi-disciplinary care for women with HIV and their children, whether positive or negative. In one location, the women and children receive specialty care from primary care physicians, ob/gyn providers, infectious disease specialists, gynecologists, perinatologists, nurse practitioners, nutritionists, pharmacists, social workers and psychologists. Legal services and child care are also available on-site.
83. Kissinger, P et al. 1995. Evaluation of a Program to Remove Barriers to Public Health Care for Women with HIV Infection. Southern Medical Journal. Vol. 88, No.11:1121-1125.
84. Ibid.
85. This covered the salaries of the child care attendant and driver, and maintenance of a donated bus.
86. Mor V, Fleishman JA, Dresser M. 1992. Variations in Health Care Service Use Among HIV-Infected Patients. Med Care. 30:17-29, cited in Kissinger et al.
87. Sowell RL et al. 1996. Barriers to Health-Seeking Behaviors for Women Infected with HIV. Nursing Connections. Vol.9, No.3:5-17.
88. Center for Women Policy Studies, 1997.
89. Meredith K, Delaney J, et al. 1997. A Survey of Women with HIV About Their Expectations for Care. AIDS Care. Vol.9, No.5:513-522. Almost half the women surveyed provided examples of ways in which they felt that their provider had not been completely honest. For example, "I want honest answers....Sometimes I think the doctors know something about me but don't share this information because it might upset me." Sowell et al also found that lack of provider honesty was a concern for many women in these focus groups, finding that women recounted provider dishonesty around HIV test information as well as HIV status.
90. Ibid.
91. Center for Women Policy Studies, 1997.
92. Sowell RL et al, 1996.
93. Ibid.
94. This has been found to be particularly true with regard to information about medication side effects, especially zidovudine (AZT). For example, one woman stated, "It was like I was healthy and fine until I started taking this AZT, and the more I took it the sicker I got,...so I made a conscious decision to just quit."(Sowell RL et al. 1996) As discussed later, providers must educate patients with the intent of allowing them to make informed decisions, rather than to substantiate a course of action that the provider imposes on the patient.
95. Center for Women Policy Studies, 1997.
96. Schur CL, Albers LA. 1996. Language, Sociodemographics, and Health Care Use of Hispanic Adults. Journal of Health Care for the Poor and Underserved. Vol.7, No.2:140-159. The language capacity of providers who may not be able to provide care was unreported, though solicited.
97. Wang GM. 1996.
98. Personal communication with Dawn Passar, Health Educator with the Asian Pacific Islander Wellness Center, San Francisco, February 27, 1998. Passar's role as health educator is often to act as translator for her clients, many of whom are Thai immigrants. There is reportedly only one translator who can speak Thai in a primary health care setting in San Francisco.
99. Center for Women Policy Studies, 1997.
100. Ibid.
101. Much has been written about this. For specific examples of how culture affects health beliefs, see Turner DC. 1996 The Role of Culture in Chronic Illness. American Behavioral Scientist. Vol.39, No.6:717-729; Edman JL, Kameoka VA. 1997. Cultural Differences in Illness Schemas: An Analysis of Filipina and American Illness Attributions. Journal of Cross Cultural Psychology. Vol.28, No.3:252-266; and Juarbe, TC. 1995. Access to Health Care for Hispanic Women: A Primary Health Care Perspective. Nursing Outlook. Vol.43, No.1:23-28.
102. Gerbert B, Maguire BT, et al. 1991. Primary Care Physicians and AIDS: Attitudinal and Structural Barriers to Care. Journal of the American Medical Association. 266(20):2837-2842.
103. Gordin FM, Willoughby AD. 1987. Knowledge of AIDS Among Hospital Workers: Behavioral Correlates and Consequences. AIDS. Vol.1, No.3:183-188, cited in Sowell RL et al, 1996.
104. Weinberger M, Conover CJ et al. 1992. Physicians' Attitudes and Practices Regarding Treatment of HIV-Infected Patients. Southern Medical Journal. Vol.85:683-686, and Somogyi AA, Watson-Abady JA, Mandel FS. Attitudes Towards the Care of Patients with Acquired Immune Deficiency Syndrome: A Survey of Community Internists. Arch Intern Med. Vol.150:50-53, cited in Haas DM, Coe RM. Do Physicians Discuss HIV and AIDS with Patients? A Survey of Physician Practices. Journal of Community Health. Vol.22, No.6:401-415.
105. Kochen M, Hasford J, et al. 1991. How Do Patients with HIV Perceive Their General Practitioners? British Medical Journal. Vol.3, No.9:1365-1368, cited in Sowell et al, 1996.
106. Moneyham L et al. 1996. Experiences of Disclosure in Women Infected with HIV. Health Care for Women International. 17:209-221.
107. Ibid. Women are also turned away from care once in treatment. For example, one woman stated, "...they were making no effort to protect anything _ themselves or anything. And I said, 'You are aware of my situation, aren't you?' They said, 'What do you mean?' I said, 'Well, you don't have any gloves or anything on, and I'm HIV-positive.' The nurse said, 'Hold on a minute, I'll be right back,' and the doctor comes in and said, 'I'm sorry, we can't do this.' They refused to do it. They sent me to the hospital. They said they just weren't equipped."
108.While many women are explicitly denied care either before or during treatment, others experience overt discrimination while being treated, which is a similar disincentive to accessing care. "I remember one time I had this nurse treat me like shit when she knew I was HIV-positive. She put me in my own room. She made rude comments, you know, it was just really rude." Center for Women Policy Studies, 1997.
109. Ibid. Actual and anticipated discrimination contribute to women's discomfort in disclosing their HIV status to providers. While women want their provider to know that they are positive, many feel that their providers would discriminate as a result. For example, one woman stated, "I try to be real up front about my HIV status, especially people that have to take blood...But then I feel sometimes when you're honest that they discriminate...If it was a question of my life, I would never go to (that hospital) again."
110. Ibid.
111. Sowell et al, 1996.
112. Center for Women Policy Studies, 1997.
113.Sowell et al, 1996, Leppert et al, 1996, Meredith et al, 1997, and Moneyham L et al. 1996. These studies are all qualitative and highly reliant on the solicited narratives of study subjects. Therefore, while these studies produce few statistical outcomes, the ability of this type of research to accurately portray the issues of concern to HIV-positive women is great.
114. See McKillip J. 1991. The Effect of Mandatory Premarital HIV Testing on Marriage: The Case of Illinois. American Journal of Public Health. Vol.81:650-655; Kegeles S et al. 1990. Many People Who Seek Anonymous HIV-Antibody Testing Would Avoid It Under Other Circumstances. AIDS. Vol.4:585-588; and Fehrs L et al. 1988. Trial of Anonymous v. Confidential HIV Testing. Lancet. Vol.2:379-382.
115. Nakchbandi IA et al. 1996. Should HIV Testing Be Mandatory In Pregnant Women? Abstract published in Journal of Investigative Medicine: 265A.
116. A study of 3,472 Atlanta women receiving prenatal care found that 96% of the women voluntarily agreed to be tested when the offer of a test was coupled with appropriate counseling. Lindsay MK et al. 1989. Routine Antepartum HIV Screening in an Inner-City Population. Obstetrics and Gynecology. Vol.74:289-294. In a study of over 32,400 pregnant women conducted at Kaiser Permanente Hospitals in California, researchers found that 90% of pregnant women who received counseling and educational materials voluntarily consented to be tested. AIDS Policy and Law. 1995. Study Says 90% of Women Will Agree to Voluntary Testing. Vol.10, No.3:4.
117. Irwin KL et al. 1996. The Acceptability of Voluntary HIV Antibody Testing in the United States: A Decade of Lessons Learned. AIDS. Vol.10, No.4:1707-1717.
118. HIV Law Project. Fact Sheet: R.Z. v. Pataki. July 17, 1997.
119. Ibid.
120. Moneyham et al, 1996.
121. Sowell et al, 1996.
122. Moneyham et al, 1996.
123. Sowell et al, 1996, Leppert et al, 1996, Moneyham et al, 1996, and Center for Women Policy Studies, 1997.
124. Sowell et al, 1996.
125. Center for Women Policy Studies, 1997.
126. Ibid.
127. Ibid.
128. Sowell et al, 1996, and Moneyham et al, 1996.
129. The implications of these unsolicited ideas about computer lists must be considered in light of the current move among AIDS health departments and HIV service providers toward integrating services and developing shared computerized intake information. Sowell et al found that even women who were currently receiving satisfactory health care from one provider were fearful of referrals to other health care professionals.
130. Moneyham et al, 1996.
131. Mandatory HIV case reporting, which will be proposed shortly according to the CDC, could strongly recommend to states that the names of those who are HIV-positive be maintained. Given the lack of information as to how women with HIV would respond to a system of mandated name-based reporting, the findings from these studies should be carefully considered. They examine the very real fear women have of suffering discrimination as a result of such a system, and explore the disturbing fact that some women consequently fail to access care due to their well-founded concerns. For more information on the current state of HIV surveillance and reporting, see Centers for Disease Control and Prevention, Morbidity and Mortality Weekly Report, February 1998.
132. AIDS Legal Referral Panel. Press Release: AIDS Legal Referral Panel (ALRP) Alarmed by Federal Proposals on Medical Records Privacy Protection. September 12, 1997. Secretary of Health and Human Services (HHS) Donna E. Shalala, in testimony on September 11, 1997, regarding the Health Insurance Portability and Accountability Act (HIPAA) passed by Congress in 1996, chose not to follow the advice of the National Committee on Vital and Health Statistics in developing the HIPAA's requested recommendations to Congress regarding the privacy of individually identifiable health information. Secretary Shalala stated that health information would be revealed to providers and payers "upon the request of a law enforcement official who states that the health information is needed for a legitimate law enforcement inquiry, and upon the request of an official of the U.S. Intelligence Community."
133. Other answers to the question, "Why do you or do you not believe that there should be a law that requires people to notify partners?" were direct, and telling: "Want my choice;" "It should come directly from the person;" "That is the right of the person;" "It's a personal decision."
134. Rothenberg KH, Paskey SJ. 1995. The Risk of Domestic Violence and Women with HIV Infection: Implications for Partner Notification, Public Policy, and the Law. American Journal of Public Health. Vol.85, No.11:1569-1576.
135. Rothenberg KH, Paskey SJ et al. 1995. Domestic Violence and Partner Notification: Implications for Treatment and Counseling of HIV-Infected Women. Journal of the American Medical Women's Association. 50:87-93.
136. Ibid.
137. Centers for Disease Control and Prevention. 1993 Sexually Transmitted Diseases Treatment Guidelines. Morbidity and Mortality Weekly Report. 1993. 42(RR-14).
138. Marks G, Richardson JL, Maldonado N. 1991. Self Disclosure of HIV Infection to Sexual Partners. American Journal of Public Health. Vol.81:1321-1322; Perry S, Ryan J et al. 1990. Voluntarily Informing Others of Positive HIV Test Results: Patterns of Notification by Infected Gay Men. Hospital Community Psychiatry. Vol.41:549-551; and Pavia AT, Benyo M et al. 1993. Partner Notification for Control of HIV: Results after Two Years of a Statewide Program in Utah. American Journal of Public Health. Vol.83:1418-1424, cited in Rothenberg KH, 1995. For additional discussion, see Landis SE, Schoenback VJ et al. 1992. Results of A Randomized Trial of Partner Notification in Cases of HIV Infection in North Carolina. New England Journal of Medicine. Vol.326:101-106.
139. For a complete discussion of the ways in which partner notification laws can be changed to consider violence against women, see Rothenberg KH, 1995.