The Association of Nurses in AIDS Care Position Paper On Harm Reduction and HIV Care for Drug Users: Integrating Harm-Reduction Methods and HIV Care
Stuart N. Fisk, RN
As the epidemic of HIV disease continues to grow among drug users and their sexual partners, new ways must be adopted to do prevention work, outreach, and service delivery to this population. The Harm Reduction Model offers methods of working with drug users, which are in contrast to traditional methods based on confrontation and that require abstinence before change can occur. This position paper examines the Harm Reduction Model and outlines areas in which the Association of Nurses in AIDS Care can play a role in the expansion of harm-reduction-based intervention and policies.
Key words: Harm reduction, HIV prevention, injection drug use, needle/syringe exchange, clinical management
As nurses in HIV/AIDS care, we are at a critical time in the history of the epidemic. We often find ourselves between hope and despair as we see new, successful treatments and advancing knowledge provide longer and better quality lives for people living with HIV disease while, at the same time, we see new infections, new AIDS cases, treatment failures, and lack of access to therapy for many people. Hope has been inspired by recent analyses that have shown declining AIDS deaths in the United States. When the overall decline of 19% in AIDS deaths from 1995 to 1996 is broken down, however, we can see where that hope begins to bleed into despair and frustration. Women, minorities, and injection drug users all show significantly less decline in death rates compared to men, Whites, and men who have sex with men (Gayle, 1997).
Statistics bear out this trend in other ways. As of December 1996, 36% of all AIDS cases reported were among injection drug users (IDUs), their sexual partners, and their children; and 128,000 of these individuals had died. Half of all new infections now occur in this population. Of those with injection-related AIDS, almost 100,000 have been African Americans (Day, 1997); it is estimated that for African American IDUs, the risk of contracting HIV is four times the risk of dying from a drug overdose (Centers for Disease Control and Prevention [CDC], 1996). Hispanic or Latino communities have also been disproportionately affected (Day, 1997). Almost half of the cases of AIDS in women have been related to injection drug use, either directly or through sexual partners. Drug-related risks for HIV have also been documented among noninjection drug users, especially those who use (crack) cocaine (Wallace, Porter, Weiner, & Steinberg, 1997).
Clearly, prevention efforts in these populations have failed to achieve the results gained in some other communities. Lack of access to effective care for women, minorities, and drug users have resulted in poorer clinical outcomes than among less marginalized groups. The reasons for this are complex, but clearly issues of race, gender, class, mental health, and drug use are implicated in the grim picture painted by the above numbers.
"Harm reduction" can help find solutions to some of these problems, particularly as they relate to drug users at risk for or living with HIV infection. This article will outline some of the broad issues of harm reduction and point to ways that the Association of Nurses in AIDS Care (ANAC) and its members can support and strengthen harm-reduction-based interventions to improve the ability to prevent HIV infections among drug users and to improve the quality of care for drug users living with HIV disease.
Harm Reduction Overview
Harm reduction philosophy evolved in the 1980s, when countries such as the Netherlands, Australia, and Great Britain gradually recognized the need for more pragmatic ways of reducing the risk of HIV infection among IDUs. Interventions such as needle and syringe exchange programs (N/SEPs), decriminalization of drug use, prescribing pharmaceuticals to addicts, and development of a wide array of low-threshold services for drug users to minimize drug-related harms grew out of this recognition. These programs, although controversial, dramatically reduced HIV infections among IDUs in the communities in which they were implemented. The success of these programs brought a variety of persons in the drug treatment and health care arenas together to discuss and expand the use of harm-reduction strategies. The first International Conference on the Reduction of Drug-Related Harm was held in Liverpool in 1990. Since then, harm-reduction-based interventions have been introduced worldwide, and a formal academic and policy discipline has been developed. New applications for and formal recognition of harm reduction have been found in the streets, in government, in public health policy, and in clinical settings. In the United States, the first National Harm Reduction Conference in 1996 attracted almost 1,000 activists, drug users, scholars, law enforcement and government officials, health care professionals, outreach workers, and others to discuss how to implement and expand harm-reduction-based efforts in this country.
There has clearly been growing recognition in the United States that harm-reduction interventions are effective and feasible from a public health perspective. The dominant drug policy and drug treatment approach, however, has been one of "zero tolerance" and abstinence, rigid policies that marginalize drug users and frequently move them into prisons and away from much needed services. Nurses are charged with providing effective, pragmatic, and dignified prevention and care services to infected and at-risk clients in this difficult environment.
The Harm Reduction Model has been analyzed by Erikson, Riley, Cheung, and O'Hare (1997) on three levels: conceptual, practical, and policy. On a conceptual level, a harm-reduction approach has a value-neutral view of drug use and drug users. Drug use, therefore, is seen as existing on a continuum from experimental or beneficial to use that is problematic and harmful to the user and the community. Drug use is seen as part of human behavior and, as such, the behavior arising from use is more relevant than the drug used. This approach allows for the development of interventions and services that are problem based, pragmatic, and nonstigmatizing to the user. The Harm Reduction Model views abstinence as only one possible outcome that should not be a prerequisite for services. An array of midrange interventions and services can, in fact, be implemented by active users to significantly reduce drug-related harm and improve quality of life. The place of the drug user in the Harm Reduction Model is squarely at the center. The user is seen as an active, competent player who is "capable of making choices about his/her own life, taking responsibility for these choices, and playing an important role in the prevention, treatment, and recovery process" (Erikson et al., 1997, p. 8).
At a practical level, harm reduction focuses on immediate, realizable goals: Providing an IDU with a sterile syringe, for example, has a higher priority than abstinence or other long-term goals. (All too often, nurses and other providers have seen abstinence occur at time of death from AIDS or hepatitis.) This does not preclude long-term goals from being considered or attained, but it realizes that change is an incremental process that occurs over time (Prochaska, DiClemente, & Norcross, 1992). Harm reduction does not fit into a rigidly defined set of programs or interventions. The inherent flexibility of user-centered care, like hospice care, requires broad range of strategies and services to achieve both short- and long-term goals. At a programmatic level, harm-reduction approaches seek active participation and input from drug users. User-centered programs should produce interventions and services that are based on the reality of users' lives and what is meaningful to them. Programs must be useful and nonstigmatizing to participants. Drug users must be willing participants in these programs and must not be subjected to arbitrary and coercive rules that push them further away from the services they need and to which they are entitled.
Harm reduction at a policy level reflects a wide range of midrange policies rather than a global or macrolevel policy. This is in keeping with the focus on an eclectic and practical approach. It also recognizes the wide variety of effects of different drugs on different individuals in differing communities. As a set of midrange policies and programs, harm-reduction interventions such as N/SEPs and other programs that are at odds with the dominant policy can be tolerated or even adopted by legal authorities. In this way, broad social policy does not have to change before effective HIV prevention and care programs can be implemented.
It is clear at the present time that the Harm Reduction Model does not encompass a fully constructed paradigm. Many elements have yet to be defined, and issues of outcome, evaluation, and design are still being debated. It does, however, offer a usable set of approaches, interventions, and programs that are effective and already in place. It has allowed health care professionals and other service providers to replace some of the despair and frustration of AIDS with hope and possibility. Some examples of existing harm-reduction-based programs are described below, along with some areas being explored by clinical providers in the field of HIV/AIDS care.
Needle/Syringe Exchange Programs
N/SEPs are among the best known harm-reduction-based interventions in the United States. An analysis of global HIV seroprevalence rates revealed that cities with N/SEPs experienced a 5.8% annual decrease in new infections, compared with a 5.9% annual increase in cities without N/SEPs (Hurley, 1997). Sixteen studies have examined the effectiveness of N/SEPs, and all but two have shown a decrease in HIV infection among participants (Paone, 1997). Seven federally funded studies concluded that these programs are effective at reducing HIV infections and do not lead to increased drug use. This has led the National Institutes of Health, the American Medical Association, the Council of Mayors, and many other organizations and experts to call for a lifting of the federal ban on funding for N/SEPs. The federal ban is a major barrier to the implementation and expansion of N/SEPs in this country. According to the National Commission on AIDS (1991), "Legal sanctions on injection equipment do not reduce illicit drug use, but they do increase the sharing of injection equipment and hence the spread of AIDS" (p. 2). The federal ban can be lifted by the Secretary of Health and Human Services as soon as N/SEPs are shown to be effective and safe, conditions that have been met according to the National Institutes of Health. Despite this, the Clinton administration has not acted to lift the ban.
More than 100 syringe exchange programs exist in the United States. Some are large legal entities, but many are small, poorly funded, and underground. These programs exchanged 14 million syringes in 1996. Lurie and Drucker (1997), using a conservative model, estimated that 4,400 to 10,000 HIV infections among IDUs in the United States could have been prevented between 1987 and 1995 if the federal government had implemented a nationwide syringe exchange policy. This would have saved many lives as well as more than $500 million in health care costs. Lurie and Drucker also estimate that if action had been taken in 1997, an additional 11,000 infections could have been prevented by the year 2000. We all know that this action has not been taken.
The bottom line is that IDUs need sterile equipment to decrease their risks of contracting a number of blood-borne infections, including HIV Unfortunately, legal pharmacy sales of syringes are allowed in only a few states. Changing these inhibiting laws would allow IDUs, especially those in areas without 24-hour access to a N/SEPs, to get adequate supplies of sterile equipment.
Methadone maintenance programs are probably the most widespread harm-reduction-based interventions in the United States. First employed in the treatment of opiate addiction by Dole and Nyswander (1965) in New York in the 1960s, methadone has been extensively studied by the medical and drug policy communities. The goal of methadone maintenance is specifically to reduce crime, disease, death, and other negative consequences related to opiate addiction. Studies over the past 30 years have shown that methadone is safe and effective if used properly in conjunction with appropriate treatment modalities. It reduces the amount and frequency of needle use and sharing and, therefore, the transmission of infections (Novick et al., 1990). It is associated with a reduction in criminal behaviors and is cost effective relative to both individual and social expenses related to injection opiate use. Methadone maintenance, used properly and in conjunction with other services, is an invaluable harm-reduction option with a potential to both prevent the spread of HIV and to improve the quality of life for those opiate addicts living with HIV disease. (For an overview of methadone research, see Lindesmith Center, 1996).
Methadone is not without controversy, however. It has been politically attacked as an enabler for drug users and for being inconsistent with zero-tolerance policies. It has been used punitively and ineffectively in many cases as a means of controlling drug users. Short-term detoxification with methadone has failed for many and led to the belief among users that it is a poor treatment alternative. In addition, access to treatment is limited for many addicts because of financial obstacles and social stigma (Velten, 1992).
Low-threshold access to methadone programs for people with HIV disease has been an important development in some cities. These programs allow better coordination of medical and mental health care for heroin users with HIV disease and have allowed many to become healthier, more stable, and less likely to transmit HIV through injection drug use. However, geographic access to these programs is limited and needs to be expanded.
Harm-Reduction-Based Drug Treatment
The application of harm-reduction methods to drug treatment programs and policies is a relatively recent phenomenon. Although frontline drug and alcohol treatment staff will often admit they have been using harm-reduction methods for years, there has been little official recognition that there is a place for harm reduction in the recovery process. In recent years, there has been a realization that traditional treatment modalities have a poor success rate and that HIV infection is becoming more prevalent among drug users of all types. With this realization, discussions about how to develop low-threshold, widely available treatment programs that deal more effectively with the reality of drug users' lives and the process of change have become more common.
Some programs have begun to develop treatment modalities that do not require abstinence as a prerequisite for admission or for staying in the program (personal communication, S. Stokes, April 29, 1997). Substance-use management groups for women crack cocaine smokers at high risk for HIV infection are beginning to be used with some success. Such groups address the relationship between drugs, sexual behavior, and HIV infection and give actively using participants useful prevention strategies. Participants support each other in these efforts and discuss harm reduction in the context of everyday experiences. Such approaches fit well with the idea of pragmatic, user-centered interventions. These groups assist users to move toward recovery if they choose to do so.
In the policy arena, drug treatment on demand has become a topic of discussion. In San Francisco, for example, a commitment has been made to provide drug treatment to all those who request it. Although the policy is not fully in place, it addresses the problem of the lack of access to treatment faced by the majority of users. Treatment beds and programs are in short supply in the United States, and very often, the window of opportunity to get a person into a program is lost because of a lack of treatment slots. Many policy experts have pointed out that the "war on drugs" has shifted money away from treatment and prevention of drug-related harm and toward the building of prisons to house drug users convicted of drug-related crimes. Prisons, thus, have become the place where many with HIV disease are housed and treated, often in substandard conditions with poor access to treatments considered to be standard of care (DeGroot, Hammett, & Scheib, 1996). Expansion of drug treatment programs would shift that care into more humane and effective programs.
Harm Reduction in the Clinical Setting
As HIV disease has spread among drug users, more persons with high-risk and chaotic drug use patterns are being treated in HIV clinics, primary care clinics, home care, and hospice settings. Traditionally, this population receives the majority of its health care in emergency departments and acute-care settings, resulting in disjointed and substandard care. This population has also enjoyed a less-than-favored status from most health care professionals. Now, however, nurses and other professionals are developing long-term care plans for dually diagnosed clients. The advent of lifelong, highly active antiretroviral therapy (HAART), with all of the attendant issues related to adherence and side effects, has made the clinical management of active drug users with HIV disease an increasingly challenging and critical part of HIV prevention and care. The presence of preexisting mental health problems, as well as the rise of mental and neuro-psychiatric disorders related to HIV disease, has presented a major challenge to mental health professionals, who have traditionally not provided therapeutic services for active drug users. In response, many clinicians have turned to the Harm Reduction Model to develop both clinical and structural changes to increase access to quality care for drug users with HIV disease.
Valuable efforts have been made in several areas including primary HIV care (Lyons, 1996, 1997 Zevin, 1997), home and hospice care (Brennan & Giles, 1996; Robb, 1994, 1995), and care in therapeutic and mental health settings (Cancienne, Kaplan, & Kaplan, 1997; Denning, 1997). These ideas and models for care need to be expanded and studied to allow and to encourage the development of approaches that benefit drug users, former drug users, and clinicians.
Nurse educators and others need to develop pr( grams and strategies to teach professionals about drug and drug use in a holistic, rational, and nonjudgmental way, so that clinicians can provide quality, patient-centerd care. This should include information about the pharmacology and administration of "street," or illicit drugs, medical complications of drug use (see Steir 1990, for an excellent review of medical complication of injection drug use), interactions of street drugs wit prescribed drugs, effective methods for assessing dru. use, and methods for teaching safer drug-use method to clients who are unwilling or unable to quit using Many N/SEPs and harm reduction centers have al ready developed materials that cover these topics, but they need assistance in reworking and disseminating this information.
The United States Department of Health and Human Services (1997) recently released a bulletin titled Medical Advice for Persons Who Inject Illicit Drugs This document outlines the information that health care providers should provide to IDUs, including finding access to sterile equipment and using safer drug use strategies. The CDC is also working on guideline: for prevention case management: a set of strategies and interventions for working with persons at high risk for HIV infection. These documents represent efforts to incorporate harm reduction methods into national policies regarding HIV prevention and clinical care. They need to be adopted by concerned professionals, expanded on, and studied in the field to increase efficacy and dissemination.
The Harm Reduction Model offers nurses and other health care professionals a set of invaluable interventions for use in providing more effective and dignified care for drug users at risk for or already infected with HIV The fact that they are often in conflict with the dominant legal and medical policy paradigms has made them controversial and has limited their use, despite proven efficacy. As the HIV epidemic continues to grow among drug users and communities most affected by drug use, we can no longer ignore effective methods that offer hope to us and the people we serve.
ANAC endorses efforts to prevent HIV transmission to drug users and to promote their health. HIV
prevention and health promotion using the Harm Re-duction Model may be advanced through the following actions of the association and its members:
1. educating the public about the efficacy of N/SEPs in decreasing HIV transmission;
2. advocating for an end to the federal ban on funding for N/SEPs;
3. advocating for change in state and local policies regarding the sale and possession of sterile equipment for drug users;
4. encouraging the expansion of methadone maintenance programs and increasing access to them through low-threshold admission policies;
5. encouraging the expansion of drug treatment programs instead of prisons and advocating for and helping to develop nontraditional, holistic approaches to drug treatment that are not strictly abstinence based;
6. supporting the work of nurses and other clinicians to develop harm reduction models of care for drug users through research, education, conferences, information dissemination, and assistance in procuring funding for projects; and
7. supporting the development of comprehensive educational programs for nurses and other health professionals in the areas of illicit drug use, associated medical complications, and ways of reducing drug-related harm in drug-using clients.
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*Stuart N. Fisk is a clinical triner for the Pennsylvania AIDS Education and training Center, University of Pittsburgh, Graduate School of Public Health
(Reprinted from Journal of the Association of Nurses in AIDS Care, Vol. 9, no.3, May/June 1998, 19-24)