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AIDS:
Structural Factors in HIV Prevention

Structural interventions to encourage primary HIV prevention among people living with HIV

Shriver, Michael D.; Everett, Charles; Morin, Stephen F.

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From the University of California, San Francisco, California, USA.

Sponsorship: This analysis was supported in part by the UCSF Center for AIDS Prevention Studies, a grant from the National Institute of Mental Health (MH42459).

Note: This paper is dedicated to Chuck Frutchey, a pioneer. An earlier version of this paper was presented by M.D.S. at the Structural Barriers and Facilitators in HIV Prevention Meeting, Centers for Disease Control and Prevention, 22-23 February 1999.

Requests for reprints to: M.D. Shriver, AIDS Policy Research Center, University of California, San Francisco, 74 New Montgomery Street, Suite 600, San Francisco, CA 94105, USA.

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Abstract

This analysis focuses on primary prevention for people living with HIV and the importance of actively involving HIV-infected people in developing prevention strategies. Structural-level or policy interventions - as opposed to behavioral or psychological interventions - help shape the world in which HIV-infected people live. Thus, we assess potential policy-level interventions that may serve either as a barrier to or a facilitator of primary HIV prevention from the perspective of the people living with HIV. Among potential barriers, we discuss criminalization of nondisclosure in specific sexual situations, laws limiting travel and immigration, name-based HIV reporting and mandatory partner notification. Under potential facilitators, we discuss confidentiality laws, antidiscrimination protections, expansion of HIV primary care, and primary prevention programs designed to actively involve infected people. Ultimately, whether any given policy is a 'barrier' or 'facilitator' of primary HIV prevention is an empirical question, dependent on the acceptability of an intervention to those already infected and those at risk, thus policy research evaluating the impact of structural factors on people living with HIV is encouraged.

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Introduction

Advances in antiretroviral therapy have reduced rates of death and progression to AIDS, and improved the quality of life for individuals living with HIV [1,2]. Since 1993, there has been a steady increase in the number of people living longer with an AIDS diagnosis in the United States [3]. As people living with HIV experience clinical improvement, they are likely to feel healthier and be more sexually active. The growing number of people with HIV enjoying healthy sex lives warrants an increase in the visibility and influence of prevention programs designed to reach this important group. The risk of transmission from infected people to primary and nonprimary partners is substantial [4,5]. Thus, interventions to assist HIV-infected people in adopting and maintaining risk-reducing behaviors are urgently needed.

In this article, we assess structural factors that serve as barriers to or facilitators of primary HIV prevention for people living with HIV. Given that HIV can only be spread when an infected person passes the virus to an uninfected person, people living with HIV must take the lead in developing HIV primary prevention efforts. Thus, we divide our discussion into structural interventions that either facilitate or impede an individual's ability to initiate, modify or maintain safe behavior.

Structural factors can be defined as those broad-based forms of social construction and definition - legal, political, environmental and otherwise - that serve either as barriers to or facilitators for all the activities in which people engage as individuals and groups [6]. We will focus primarily on United States federal, state and local government systems because these constitute the primary areas where structural or policy-level interventions have been attempted in this country. Yet, despite this focus, many of the same issues are also relevant, and our analysis applicable, in the international context.

The determination of whether any given structural intervention is a 'barrier' or a 'facilitator' to primary HIV prevention is a judgment that should be based on evidence. Unfortunately, empirical studies on this issue are difficult to find. To the extent that research is available, we have tried to summarize what is known. However, even in the absence of formal data, we contend that acceptability to people living with HIV is a critical factor in determining which structural interventions will ultimately succeed. Also, while it is possible to assess the perceptions of these major stakeholders through qualitative techniques, such as focus groups and semi-structured interviews, or quantitative techniques such as convenience samples or population-based surveys, these data have not, for the most part, been gathered. Our own analysis therefore shows a significant gap in HIV prevention research. Policy-makers and public health officials are wise to remember that only with leadership from the community of infected people and the groups that represent their interests will HIV prevention designed for people living with HIV be successful.

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Structural barriers to prevention

Laws against nondisclosure

As of 1999, 31 states had enacted legislation making nondisclosure of HIV status in sexual, needle-sharing and other situations a criminal offense [7]. An analysis of state legislation enacted between 1996 and 1999 demonstrates a distinct trend toward more and tougher 'willful exposure' laws [8]. This upsurge in interest in criminal statutes has been fueled by highly publicized cases of multiple HIV transmissions by a single person, particularly in disturbing cases in Missouri and upper New York State [9,10].

People living with HIV typically agree that they have a special responsibility to protect others from HIV infection [11,12]. Punishment is appropriate for cases of nonconsensual sex such as rape, and in cases of specific deception. The question arises, however, as to whether punishment is appropriate for nondisclosure in no- or low-risk situations. A detailed analysis of these state statutes indicates that the specific behaviors prohibited are often poorly defined and, in some cases, the laws would punish safer sex practices that are an important part of risk-reduction strategies [13,14]. Furthermore, it is not clear to what extent people living with HIV know of these statutes and to what extent the laws deter high-risk behavior. This criminalization approach has the potential to serve as a barrier to HIV prevention if it does not deter the behaviors that transmit HIV, but does increase stigma long associated with HIV infection.

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Ban on travel

Another example of a structural or policy intervention designed, in part, to prevent HIV infections is the statutory ban on travel and immigration into the United States by HIV-infected foreign nationals, which has been in place since the 1980s. Again, there is no evidence that this law accomplishes its intended goal, but it has been decried internationally by scientists and advocates stigmatization as harmful and a hindrance to prevention. The travel ban has resulted in the International AIDS Society avoiding the United States as a host for the biannual International Conference on AIDS.

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Name-based HIV reporting

Name-based HIV case surveillance has generated extensive public debate. Recently, the Centers for Disease Control and Prevention recommended, in a guidance, that all states implement HIV case surveillance as an extension of AIDS case surveillance, which is a name-based reporting system [15]. While some health departments promote name reporting as a means to link individuals to HIV care, risk-reduction counseling and partner notification, some studies have indicated that people are less likely to be tested for HIV under a name-reporting system. The key question is whether the benefits to individual and public health outweigh the risks [16]. This is one of the few examples where research has addressed the acceptability of the policy to groups at risk of HIV infection - the important question of whether such a policy is a 'barrier' to early detection. However, from our perspective, it is equally important to note that these studies have not focused on the perception of people living with HIV themselves, particularly those with HIV who do not meet the AIDS case-reporting criteria.

On the positive side of the argument for name-based reporting is a study of six states that adopted name-based HIV reporting. In the 12 months before and after the change in policy, the overall level of testing went up in three states, was level in two states and declined in one state [17]. On the negative side of the argument are a number of studies that demonstrate a lack of acceptance of name-based reporting to key stakeholders, particularly gay men [18-24]. A recent study surveyed high-risk gay men who were repeat anonymous testers. Although 68% of the participants reported that they would not be tested if their name was to be reported [25], this dropped to 58% after explaining the public health benefits of name reporting. This and other studies suggest that the level of acceptance of testing policies is critical to the success of voluntary HIV testing and counseling programs [26,27].

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Partner notification

Name-based reporting is associated in some states with policies requiring health department-mediated partner notification. Advocates for this policy argue that having the name of the infected person allows important follow-up into care, and also allows enhanced efforts to notify sexual and needle-sharing partners. However, a recent study found that, in name-reporting states, follow-up contacts were not associated with getting people into care earlier [28]. In addition, those tested anonymously reported voluntarily, notifying as many sexual and needle-sharing partners as those whose names had been reported to health departments.

Voluntary partner services are supported by people living with HIV, especially when seen as being provided in collaboration with the infected person [29]. Studies of voluntary partner services show that sex partners are generally receptive to being notified and will seek HIV testing. Moreover, early detection, particularly in cases of primary infection, can be helpful both in terms of options for treatment and encouragement to prevent further transmission of the virus [30]. Thus, partner notification may be viewed as a 'barrier' if mandatory or a 'facilitator' if voluntary, and offered as a service to assist people living with HIV in preventing further transmission.

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Stigma

AIDS-related stigma continues to inform perceptions and to shape the behavior of people living with HIV and AIDS, thus affecting the success or failure of prevention interventions. As such, stigma is a community or social structural factor that can present a barrier to HIV prevention goals [31]. AIDS exploded into communities thoroughly unprepared for either its initial devastation or its extended and protracted demands. Moreover, in the United States and other industrialized countries, AIDS emerged in traditionally marginalized communities where mistrust of authority further complicated a slow public health response. Stigma, in the form of violence, discrimination or personal rejection, has been brought to bear on persons with AIDS, and their loved ones and caregivers [32,33]. HIV disease meets four criteria for stigma-evoking illnesses: it is widely perceived to be the bearer's responsibility, it is terminal, it is contagious, and its effects are often outwardly visible [32]. Thus, negative attitudes toward people with HIV complicate efforts by these individuals to have healthy relationships, sexual and otherwise.

Certainly, these circumstances can be said to exist in developing countries such as South Africa, where HIV-related stigma is an important concern. Structural protections of human rights and the promotion of personal dignity are essential to a positive policy environment that encourages reducing new infections, and antistigma campaigns promote such an environment. While stigma, or the threat of stigmatization, plays a major role in determining the acceptability of interventions to HIV-infected people, as well as the success or failure of almost all interventions, combating stigma is an area where people with HIV/AIDS have always played a particularly active, positive role. Today, organizations like the National Association of People with AIDS in the United States and similar organizations in countries all over the world conduct antistigma campaigns that promote positive policy environments.

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Structural level facilitators for prevention

Confidentiality

The early history of HIV testing [34] was shaped by the understanding of two factors: that the blood supply needed to be protected from contamination with HIV, and that those who wished to be tested should have protected avenues to do so, free from the fear of discrimination that was associated with HIV infection. A system of publicly funded testing sites was developed where individuals could be tested either anonymously or with strict confidentiality protections. State laws were adopted that required specific informed consent for HIV testing [35] and provided penalties for wrongful disclosure of HIV status. These legal interventions were established to pre-empt problems that might discourage testing and thus limit access to care. In addition, laws promoting knowledge of one's HIV status in turn promote risk reduction to prevent further transmission [36].

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Nondiscrimination

In the same way that stigma and discrimination serve as barriers to primary HIV prevention, policies that prohibit discrimination are facilitators of primary prevention. In the United States, the Americans with Disabilities Act protects not only HIV-infected people, but also those perceived to be infected against discrimination. Bolstered by a recent court decision that upholds this protection [37], the Americans with Disabilities Act is a likely facilitator of HIV prevention because it establishes an environment where discrimination is not tolerated. Again, research is needed to assess the extent to which people living with HIV are aware of these legal protections and perceive that this protection is real. In turn, these perceptions need to be linked to prevention needs in order to assess the extent to which such laws facilitate primary HIV prevention.

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Access to care

Healthcare policies that expand access to HIV care are important structural level interventions, with implication for both primary and secondary HIV prevention. In countries like the United States that do not provide universal access to primary healthcare, policy initiatives have been necessary to expand access to HIV care. Providing quality care and medications to HIV-infected people is a potentially important HIV prevention tool in terms of secondary prevention or reducing the morbidity and mortality that result from HIV disease progression. To the extent that highly active antiretroviral therapy lowers viral load, it may also lower the extent to which an individual is infectious so that it can facilitate primary, as well as secondary, prevention [38-41].

The availability of treatment for sexually transmitted diseases is also important to HIV-infected people [42]. Many sexually transmitted diseases are thought to increase the susceptibility of HIV-uninfected people to HIV, as well as increase the infectiousness of people with HIV [43].

As the US Government's medical insurance safety net, Medicaid provided healthcare coverage to more than 55% of adults and more than 90% of all children with HIV disease in 1998 [44], and is therefore the largest source of financing for HIV-related care [45]. Medicaid expansion would make for sound public health policy if it were undertaken so as to provide a more comprehensive and integrated program for care [46]. Two recent studies modeling the potential cost of Medicaid expansion [47,48] found this option feasible under current budget constraints, and would constitute a significant step forward in increasing access to higher quality HIV therapy.

A move to expanded access to care would also respond to concerns about equity in health care access. A study of the nearly 250 000 adults with HIV receiving care in the United States during the first 2 months of 1996 found that 68% of patients depended on public programs or personal assets to finance medical care [49]. Only about 32% of these individuals were covered by private insurance. This study also found that access to AIDS care is worse for those who are poor, African-American or Latino [50]. Policy options that expand access to care thus respond to several important equity concerns in the HIV/AIDS epidemic.

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Positive prevention programs

One policy-level intervention that would be particularly important for primary HIV prevention would be the development of more formal programs designed to meet the needs of people living with HIV [51]. To date, funding for HIV prevention directed toward HIV-infected people has been inadequate [52]. While prevention interventions designed for the uninfected have been evaluated and found to be effective [53], research to determine if the same interventions have a similar outcome with infected people has only recently been funded.

The Centers for Disease Control and Prevention has issued policy guidance for prevention case management, an intensive intervention designed for clients with multiple, complex problems and risk-reduction needs [54]. While the guidelines are for all individuals at risk, the guidance recommends giving priority to HIV-infected individuals who are having or are likely to have difficulty sustaining practices that would avoid transmitting HIV to others. Prevention case management, which often involves managing medical, mental health and substance abuse care as well as social services, is expensive but may be useful in situations where the risk for the individual is both critical and challenging.

In low-income countries struggling with endemic levels of HIV disease, provision of voluntary counseling and testing services is an important step. When one considers that, in the developing world, very few seropositive individuals are even aware of their status, such programs are an important first step. In addition, empowerment of HIV-positive communities in countries with high levels of stigmatization, and enlisting them as active participants in campaigns to raise awareness, reduce discrimination and increase testing and treatment, are necessary steps. The UNAIDS initiative, Greater Involvement of People with AIDS, seeks to actively engage HIV-positive people in this way [55]. The project is a testament to this community's importance as a partner in prevention efforts. An evaluative measure for HIV prevention interventions should be the involvement of, and acceptability to, HIV-positive people in any given intervention.

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Conclusion

Primary prevention for individuals living with HIV poses significant challenges. This analysis has outlined structural factors that are important considerations in moving to a comprehensive public-health response to the HIV epidemic that involves people living with HIV as partners in the prevention mission. Ultimately, although people living with HIV can be part of the problem, they can and should be part of the solution. The public-health community must understand the importance of actively involving people living with HIV in leadership roles if it is to be successful in decreasing the toll of the HIV epidemic.

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Acknowledgments

The authors extend their gratitude to David Purcell, PhD, JD, for his conceptual guidance and his extensive efforts to help shape the paper. They would also like to thank Thomas J. Coates, PhD, for his assistance with this paper.

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Section Description

Based on presentations from Structural Barriers and Facilitators in HIV Prevention, a meeting sponsored by the Centers for Disease Control and Prevention on February 22-23, 1999

This publication is sponsored by the Behavioral Intervention Research Branch; Division of HIV/AIDS Prevention; National Center for HIV, STD, and TB Prevention; U.S. Centers for Disease Control and Prevention.

The Editors of this supplement wish to acknowledge the referees who provided peer reviews of the manuscripts.

Statements of individual authors may not reflect the position of the Centers for Disease Control and Prevention.

Keywords:

people living with HIV; primary prevention; structural level interventions; policy interventions; criminalization; HIV name-reporting; partner notification; antidiscrimination; expanding HIV care

© 2000 Lippincott Williams & Wilkins, Inc.

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