1.1. How HIV PCRS Has Evolved

Once known as "contact tracing," outreach activities for finding, diagnosing, and treating partners of persons infected with sexually transmitted diseases (STDs) have long been used by public health workers as a prevention activity. In the 1930s, U.S. Surgeon General Thomas Parran advocated the use of contact tracing to help "prevent new chains of [syphilis] infection" (Parran, 1937). Contact tracing was later expanded to include partners of persons infected with gonorrhea and other STDs, including the human immunodeficiency virus (HIV), and came to be known in the 1980s as "partner notification" (West and Stark, 1997).

In the 1980s, when public health workers were first being confronted with the rapid spread of HIV, the virus that causes acquired immunodeficiency syndrome (AIDS), informing persons of their possible exposure to HIV and offering counseling, testing, and referral services were already recognized as an important disease prevention effort that could help stem the tide of HIV infection. As HIV prevention activities have evolved, so has the terminology for informing the HIV-infected person’s sex and needle-sharing partners of their possible exposure to the virus. Today, the term HIV partner counseling and referral services (PCRS) more accurately reflects the range of services available to HIV-infected persons, their partners, and affected communities through this public health activity.

Of necessity, PCRS for HIV differs from partner services for other STDs because the "epidemiological, biological, and clinical characteristics of HIV are different" (West and Stark, 1997). Despite recent advances in treatment, we do not yet have a cure for AIDS, so HIV remains a lifelong issue for those infected. Furthermore, because society frequently stigmatizes and sometimes discriminates against HIV-infected persons and their families and friends, the affected communities may be concerned about the potential negative impact of PCRS. HIV prevention programs need affected communities to be involved in and understand PCRS for the overall prevention efforts to be accepted and effective.

Federal and state legislative mandates in the 1990s have underscored the importance of notifying sex and needle-sharing partners of their possible exposure to HIV. Recent examples include the federal requirement to notify spouses of HIV-infected persons (Public Law 104-146, Section 8[a] of the Ryan White CARE Reauthorization Act of 1996) and state legislation to require health departments to offer HIV partner notification services to newly reported HIV-infected persons (National Council of State Legislators, 1998). Legal and ethical concepts such as the rights of individuals to know their risk of infection, to learn their HIV status anonymously or confidentially, and to be protected against discrimination if HIV-infected, will continue to drive public health policies and legislative action on HIV PCRS (West and Stark, 1997). Public health policies and legislative actions related to the above concepts will determine, at least in part, how PCRS is conducted.

1.2 What Are the Goals of PCRS?

PCRS is a prevention activity with the following goals:

1. Providing services to HIV-infected persons and their sex and needle-sharing partners so they can avoid infection or, if already infected, can prevent transmission to others.
2. Helping partners gain earlier access to individualized counseling, HIV testing medical evaluation, treatment, and other prevention services.

Through PCRS, persons - many of whom are unsuspecting of their risk - are informed of their exposure or possible exposure to HIV. Notified partners can choose whether to be tested, and if not tested or if found to be uninfected, can receive counseling about practicing safer behaviors to avoid future exposure to HIV. If, however, they are found to be infected, they can seek early medical treatment and practice behaviors that help prevent transmission of HIV to others and reduce the risk of becoming infected with other STDs.

PCRS can be instrumental in identifying sexual and drug-injecting networks at high risk for transmission of HIV or other sexually transmitted diseases (Fenton and Peterman, 1997; West and Stark, 1997). These networks are made up of individuals who share social relationships involving sex or drug use. Such networks can be identified and described at least partly through information obtained by PCRS activities (West and Stark, 1997). Future prevention interventions can then be more effectively directed, and the HIV risks within the network(s) potentially reduced. Network research, combined with new methods of virus typing and identification of recently infected persons (Janssen, et al., 1998), will contribute to a greater understanding of HIV transmission (Fenton and Peterman, 1997).

1.3 Is PCRS Cost-effective?

Some have raised concerns about the high potential cost of PCRS and have questioned on these grounds whether or not it should be supported. In fact, although the relative investment per person reached might be greater than other public health activities, PCRS is likely to be highly cost-effective. A simple threshold analysis illustrates the probable cost-effectiveness of PCRS to society. Assuming an estimated current $154,402 lifetime cost in the United States of a person acquiring HIV infection and eventually dying from HIV-related illness (Holtgrave and Pinkerton, 1997) and a conservatively estimated average $3,205 cost of PCRS to reach one infected person (Toomey et al., 1998), PCRS must prevent 1 infection out of every 51 HIV-infected partners reached through PCRS to be cost-effective. As PCRS links HIV-infected partners to client-centered counseling and other interventions proven or likely to be effective, this appears to be a threshold relatively easy to achieve by programs. Greater effectiveness, such as preventing only 2-3 infections for every 51 HIV-infected partners reached through PCRS, would convey substantial cost savings to society.

1.4 Who Benefits from PCRS?

Clearly, three distinct beneficiaries of PCRS are (1) persons with HIV infection; (2) their spouses and other sex and/or needle-sharing partners; and (3) affected communities (Fenton and Peterman, 1997). Through a client-centered approach, HIV-infected persons can receive counseling about their risk behavior and be offered a range of choices and support in informing their partners of the possibilities of exposure to HIV (CDC, 1994). Studies have shown that a client-centered counseling approach can result in behavior change, thereby decreasing the likelihood of HIV transmission to others (Kamb et al., 1998 and Fenton and Peterman, 1997). HIV-infected persons can also benefit from referrals to other social and medical services, such as couples counseling, prevention case management, and antiretroviral therapy.

For the partners of HIV-infected persons, one basic benefit comes from being informed that they are at risk. This will be particularly helpful information for those who do not even suspect that they might have been exposed. Once informed, the partner can decide to access available HIV prevention counseling and testing services. If not infected with HIV, partners can be assisted in changing their risk behavior, thus reducing the likelihood of acquiring the virus. Or, if already HIV-infected, the partner’ s prognosis can be improved through earlier diagnosis and treatment.

The role of PCRS, earlier diagnosis, and prevention and treatment services might have prevention benefits at the community level in reducing future rates of HIV transmission. Evidence is accumulating that antiretroviral therapy reduces the amount of HIV in genital secretions and fluids and thus might reduce the infectivity of HIV (Gupta P, et al., 1997; Vernazza PL, et al., 1997; Vernazza PL, et al., 1997; Musicco M, et al., 1994). However, concern may be well justified that some might misinterpret antiretroviral therapy as a cure for HIV and thus be less concerned about adopting safe behaviors or exposing others (Kalichman SC, et al., 1998; Kelly JA, et al., 1998; Remien RH, et al., 1998; Remien RH, et al., 1998). Efforts to link HIV-infected persons to treatment must also continue to emphasize safe behavior during the course of treatment. Effective PCRS also can improve disease surveillance, identify social sexual networks at high risk that can then be targeted for prevention (Fenton and Peterman, 1997), and potentially assist a comprehensive program in lowering the transmission rate of HIV. In addition, PCRS can benefit service providers in the community by increasing their access to individuals in need of their services, especially people who would not come to them on their own.

1.5 What Activities Are Involved in PCRS?

PCRS should be introduced at the point an individual seeks HIV prevention counseling and testing. A brief overview of the activities associated with PCRS is included in this section, but more detailed discussions are provided throughout the remainder of this document.

• Person Seeks HIV Prevention Counseling and Testing. PCRS begins when persons seek, either through private care providers or publicly funded programs, HIV prevention counseling and testing. As they enter services, they should be assisted first, ideally through client-centered counseling techniques, in -
  1. assessing their risks of acquiring or transmitting HIV, and
  2. negotiating a realistic and incremental plan for reducing risk.
  During the initial counseling and testing session, the provider should also explain (1) how HIV testing will be conducted if the client does choose to be tested, and (2) all the available options for PCRS. The provider must assist clients in understanding their responsibility, if their HIV test results are positive, for ensuring that their partners are informed of their possible exposure, and referring those partners to HIV prevention counseling, testing, and other support services (CDC, 1994).
• Client Tests Positive and Chooses To Participate in PCRS. Once a client’ s test results are confirmed positive, that person should be provided the earliest appropriate opportunity to receive partner counseling and referral services. Reactions to learning one is infected with HIV vary, and personal circumstances differ among individuals. PCRS providers need to recognize and accommodate those clients who need other issues resolved before being ready to participate in PCRS. This might mean, for some individuals, scheduling a follow-up appointment to discuss PCRS issues more thoroughly.
• PCRS Provider and Client Together Formulate a Plan and Set Priorities. The PCRS provider (who might not be the counseling and testing provider) counsels the client on if, how, and when specific partners should be informed of their risk of exposure. The provider should present partner referral options (Section 3.2). Then, the client and PCRS provider together can develop a plan for reaching partners that uses one or more of the referral options. The plan should be one that will result in each partner being (1) informed of possible exposure to HIV; (2) provided with accurate information about HIV transmission and prevention; (3) informed of benefits of knowing one's serostatus; (4) assisted in accessing counseling, testing, and other support services; and (5) cautioned about the possible negative consequences of revealing their own or others' serostatus to anyone else. As the individualized plan is developed, the PCRS provider and client prioritize which partners should be reached first (Section 3.0 provides a discussion of how priorities are set).
• HIV-Infected Client Voluntarily Discloses Information About Partners. The HIV-infected client is encouraged to voluntarily and confidentially disclose the identifying, locating, and exposure information for each sex or needle-sharing partner that the PCRS provider or the client will attempt to inform.
• Client and/or Provider Informs Each Partner of Possible Exposure to HIV. The client and/or the PCRS provider informs each sex or needle-sharing partner who can be located of his or her possible exposure to HIV. Ideally, the partner is always informed confidentially face-to-face, but this cannot necessarily be ensured when the client chooses to inform the partner without the provider’s assistance.
• Client and/or Provider Assists Partner in Accessing Counseling, Testing, and Other Support Services. At the core of PCRS is referring the now-informed partner to counseling, testing, and needed social and medical services. If on-the-spot counseling and/or testing for HIV and other STDs is not practical or not desired at this time, each partner should receive, immediately upon being informed of possible exposure to HIV, a specific referral for obtaining client-centered counseling and testing. Some partners will also need immediate referrals for medical evaluation, substance abuse treatment, mental health, or other support services to enhance or sustain risk-reducing behaviors.

How each PCRS activity is conducted might have a direct impact on how communities perceive the value of such efforts to themselves and to public health. Quality assurance for services provided, routine staff and program evaluations, and network analysis are, therefore, necessary components of PCRS. For example, ensuring that strict confidentiality is maintained for all persons involved in PCRS will encourage community support and involvement. (See Sections 4.3, 4.5, and 6.2)

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