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Testimony on HIV Partner Protection Act by Helene D. Gayle, M.D., M.P.H.
National Center for HIV, STD, and TB Prevention
Centers for Disease Control and Prevention
U.S. Department of Health and Human Services

Before the House Committee on Commerce, Subcommittee on Health and Environment
September 29, 1998

I am Dr. Helene Gayle, Director of the National Center for HIV, STD, and TB Prevention at the Centers for Disease Control and Prevention. Thank you for the opportunity to testify today about issues related to HIV prevention partner counseling and referral services in the context of H.R. 4431, the HIV Partner Protection Act. I'm especially happy to be here because it's an opportunity for me to share with you CDC's updated guidance on HIV partner counseling and referral services -- which has just been released for public comment.

However, before we focus on partner counseling and referral services, let me briefly describe the major goal of HIV prevention in this country and the sound public health approaches that we think are needed to achieve this goal. Our goal is to prevent HIV infection by reducing behaviors likely to transmit the virus and assisting individuals at risk or already infected in gaining access to prevention services, medical care, and other needed services. This ambitious goal can be achieved only by using a comprehensive strategy. Elements of this strategy must include monitoring the epidemic; informing the public regarding risk and modes of transmission; conducting health education and risk-reduction activities, including school-based education efforts for youth; promoting and implementing HIV prevention counseling and testing; providing referrals for medical treatment as well as prevention and social services; and promoting and implementing STD screening and treatment. An essential component of HIV counseling and testing is reaching out to and counseling sex and needle-sharing partners of persons identified as HIV positive. These partners are often unaware that they have been exposed to HIV and some may already be infected. All must have access to counseling, testing, and other prevention or treatment services. Each of these elements contributes to preventing the spread of HIV. Together, they become a powerful prevention strategy. No single activity, by itself, will achieve the overall goal of preventing new HIV infections.

I will briefly describe CDC's current recommendations for partner counseling and referral services, or PCRS, and our current requirements for programs providing these services. The goals of PCRS are, first, to provide services to sex and needle-sharing partners of HIV-infected individuals so they can avoid infection or, if already infected, can prevent transmission of HIV to others; second, to help HIV-infected partners gain earlier access to counseling, medical evaluation, and other prevention, treatment, and support services. CDC has required States to establish standards and implement procedures for PCRS since 1988, when it was referred to as "partner notification."

PCRS is a process that begins when people receive HIV prevention counseling and testing and is carried out by different health professionals in a wide range of counseling and testing settings. If a person tests positive, the PCRS provider and client together formulate a plan for reaching any sex or needle-sharing partners. The plan should be one that will result in each partner's being informed of possible exposure to HIV and provided with accurate information and counseling about HIV transmission and prevention. Next, the HIV-infected client voluntarily discloses identifying information about partners, and the client and/or the provider informs each partner of possible exposure to HIV. The next step is really the core of PCRS practice: assisting the partner in accessing additional counseling, testing, medical care, and other support services. Throughout this process, the confidentiality of the infected person's identity and that of their partners must be preserved.

The ability to successfully identify the exposed individual is directly dependent on establishing trust with the infected person. This is a critical point that has always been a cornerstone of partner services for HIV and all other STDs. The PCRS process, by its nature, is a voluntary one on the part of the client. A client who tests positive for HIV or any other STDs cannot be mandated to reveal names of partners. In the wake of receiving an HIV-positive test result, clients may fear discrimination, abuse, or domestic violence; they may fear the loss of a job, health insurance, housing, or the loss of important personal relationships. The success of the PCRS process absolutely hinges on the trust and cooperation of the person living with HIV, their partners, and their communities. We know that people will cooperate if they believe that their confidentiality will be protected; otherwise they may avoid the system altogether. The way to maximize the public health benefit is to have a valuable service -- one with skilled counselors fully supported by adequate resources -- that people perceive as beneficial and easy-to-use.

Partner counseling and referral services related to HIV infection have evolved from similar services, known as "contact tracing," that were begun in this country in the 1930s as a method of preventing the spread of syphilis. This prevention effort was called contact tracing because public health workers would, and still do, conduct analyses to determine which sex partners were most likely to be infected and then make confidential efforts to locate them and provide treatment. Contact tracing services later expanded to include partners of persons infected with gonorrhea and other sexually transmitted diseases, including HIV, and came to be known as "partner notification" in the 1980s. Today, the term "HIV partner counseling and referral services" more accurately reflects the range of services available to HIV-infected persons, their partners, and affected communities through this essential public health activity.

But of necessity, PCRS for HIV differs from partner services for other STDs. The primary difference is that, despite recent advances in treatment, we do not yet have a cure for AIDS, so HIV, unlike syphilis and gonorrhea, remains a life-long issue for those affected. For HIV-infected persons, PCRS needs to be continuously available. The process begins as soon as an HIV-infected person learns their serostatus, and it continues throughout that person's counseling and treatment. Also, because society frequently stigmatizes and sometimes discriminates against HIV-infected persons and their families and friends, counseling and support must be provided for clients who choose to notify their own partners. For exposed partners who test positive for HIV, PCRS provides assistance in reducing risks posed to others and accessing medical evaluation, treatment, and other prevention and support services to prolong life. As new prevention tools emerge, such as vaccines, better behavioral interventions, and more effective antiretroviral therapies, PCRS will almost certainly become an even more important prevention tool.

States, territories, and local areas contribute to a national data system maintained by CDC that includes information on more than two million HIV tests reported annually from nearly 10,000 publicly funded counseling and testing sites. While this system does not differentiate spouses from others who are sex or needle-sharing partners, it does record the reasons for seeking HIV counseling and testing services, including referrals by partners and health departments. In 1996, 81,999 tests were conducted for people who were referred from a variety of health care delivery settings for PCRS; of these, 35,260 (43 percent) were referred by their partners, and 46,739 (57 percent) were referred by the health department. More than half of all the people referred were female. Many of these persons did not realize they might have been exposed to HIV and thus did not consider themselves at risk for infection until they received the referral. Nationally in 1996, 4 percent of these referred partners tested HIV seropositive, and in some areas up to 15 to 20 percent were HIV positive. This represents a much higher rate than the national average of 1.5 percent who tested HIV positive at publicly funded test sites that year. These data underscore the importance of the PCRS process in reaching high-risk populations and providing individuals with the critical linkage to appropriate prevention and treatment services. The data also illustrate the degree of success PCRS has already demonstrated.

Concerning the effectiveness of PCRS, we know that, in general, HIV-infected persons and their partners readily accept PCRS and, with appropriate counseling, will not only provide confidential and very sensitive information, but will actively assist in finding and encouraging partners and spouses to receive counseling and testing. Also, when located, sex partners are generally receptive to confidential notification by the client or the health department and will usually seek HIV testing. Another indication of the efficacy of PCRS is the fact that many people at high risk for infection are linked by this process to prevention services that have been proven to be effective.

Notwithstanding these benefits to public health, it is also important to note the practical limitations of PCRS. Frequently it is difficult or impossible to determine exactly when a person became infected with HIV and when specific sex or needle-sharing partners were exposed to the virus. During the potentially long period during which the virus could have been transmitted, the HIV-infected person may have had many partners. In addition, the HIV-infected person may not be able to identify all partners or know how to reach others who are known. Because of the long time periods involved, often it is difficult for the client or health department to locate all the partners, especially those exposed years earlier. Also, while many HIV-infected persons willingly participate in PCRS, fear or misunderstanding of health department policies and practices may keep some HIV-infected persons from coming forward or revealing information needed to reach partners and spouses. A climate of trust, confidentiality, and understanding is essential; without it, this highly effective and targeted intervention is jeopardized. Another limitation is the lack of human and financial resources in the public health arena necessary to carry out this important prevention activity.

Let me now describe some of the numerous ways that CDC has been working to further strengthen and enhance PCRS activities. As a result of the reauthorization of the Ryan White legislation, each State is required to certify to CDC in writing the State's intent to comply with the spousal notification requirements contained in the legislation. Programmatic and legal staff of CDC and the Health Resources and Services Administration have developed procedures and criteria for certifying each State's compliance with Ryan White CARE Act requirements that mandate that States make a good faith effort to notify spouses of known HIV-infected individuals. All States certified compliance by February 1997 and have taken action to implement spousal notification. No State opposed the requirements.

In addition to the specific activities related to spousal notification, CDC also provides technical assistance and guidance to help States achieve optimal performance in their PCRS programs. Spousal and partner notification requirements have been reviewed and emphasized by CDC at numerous meetings, conferences, and workshops involving State and local HIV prevention programs and national organizations. CDC has published scientific articles on HIV prevention partner notification in peer-reviewed journals, emphasizing its importance, especially as it relates to primary prevention and linkage of HIV-infected persons to treatment. CDC has delivered training on PCRS through a satellite video conference and at national conferences, and training is currently being conducted at State and local health departments for staff who implement PCRS programs.

As I mentioned at the beginning, CDC, with input from a wide range of public health and professional partners, also has developed comprehensive guidelines for HIV PCRS and recently mailed the draft to all State health departments for comment. The HIV Partner Protection Act of 1998 and this new PCRS Guidance do share important goals of notifying partners, including spouses, who may have been exposed to HIV and linking them to appropriate prevention and medical services. CDC believes that the new PCRS Guidance improves and refines current practices and elevates partner counseling and referral services to a higher standard of public health practice and a greater degree of potential effectiveness. We will receive comments on the Guidance and will then finalize and implement it.

Let me now briefly address some other issues related to the HIV Partner Protection Act. The Act departs from the CDC Guidelines and science-based public health practice by mandating reporting of all HIV-positive tests, by client name, without any provision to support the continuation of anonymous testing. The resulting effect will be to discourage and drastically reduce anonymous testing opportunities. Anonymous testing has been strongly encouraged by CDC Guidelines and is integral to public health practice because it has been proven to bring people for testing earlier in the course of infection and also bring in people who might never access such services or who might access them only when symptoms of disease develop. CDC currently recommends that people who test positive in anonymous settings be linked with medical care so they can receive life-prolonging clinical services. It is also through this medical delivery system that clients develop the trusting relationships that facilitate the identification of exposed partners not revealed with the initial inquiry. In States that require name reporting, the names of clients who tested positive anonymously are reported to State health departments at the point of interacting with medical care providers.

In addition, we are concerned that directive legislation may inadvertently constrain the application of sound public health activities that require greater flexibility. For example, studies have shown that clients might fear having their partners notified because they have reason to anticipate a violent reaction from the partner. Domestic violence is a well-documented reality in the lives of many newly diagnosed individuals, especially women. Providers must be sensitive to the threat of violence and other issues of concern to the client. PCRS providers should have the flexibility to make an assessment prior to notifying the partner and seek expert consultation before proceeding with notification. Legislative mandates could decrease the flexibility that public health staff require to apply sound judgment in complicated situations, as are frequently encountered when providing PCRS, especially those situations involving the potential for interpersonal violence. Passage of this or other legislation that might reduce this flexibility could prevent clients who fear such violence from seeking counseling and testing for HIV.

What then are our recommendations? We would like to have the opportunity to implement the new PCRS Guidance and then evaluate its outcomes and impact. CDC will provide technical assistance to State and local programs to build the service delivery capacity of PCRS programs and will continually assess PCRS practice across the country as programs are further developed and strengthened. Knowing the subcommittee's interest and concern, we would be happy to provide a progress report six months from the date the Guidance is finalized.

CDC is committed to strengthening HIV prevention efforts in reaching sex and needle-sharing partners, providing them with counseling about prevention, and, if they are infected, linking them to medical care and treatment. For this to be accomplished, CDC could support State and local health departments in expanding counseling and testing services, increasing the number of skilled counselors who establish that all-important trust with clients, providing more access to antiretroviral treatment and other needed services, and establishing new data collection systems.

Thank you for the opportunity to present our views on this important public health topic. I will be glad to respond to any questions you or other members of the subcommittee may have.

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