From: Ejahivlbby@aol.com Date: Wed, 26 Nov 1997 19:36:05 -0500 (EST) Subject: CA - LIFE Lobby's Position on HIV Surveillance, Reporting and Testing FOR IMMEDIATE RELEASE November 26, 1997 Contact: Eric Astacaan, HIV/Healthcare Legislative Advocate Phone: 916-444-0424 Ejahivlbby@aol.com or eric.astacaan@lifelobby.org This past weekend, November 22nd and 23rd, the House of Delegates of LIFE: California's Lesbian, Gay, Bisexual, Transgender and HIV/AIDS Lobby, met in San Francisco. The House of Delegates serves as the policy making body of this organization. At this meeting, the House of Delegates adopted the attached position statement on HIV surveillance, reporting, and testing. In summary, LIFE Lobby cautiously supports improving the monitoring of the pandemic to include HIV case counting/surveillance with the proviso that data gathered through this method must be provided to community planning bodies for use in prevention, care planning and resource allocation. Additionally, LIFE Lobby vigorously opposes the reporting of HIV cases by name, but instead support the use of systems that respect and protect both our public health and people's confidentiality and privacy, such as those that use unique or coded identifiers. Finally, regardless of any change in the HIV/AIDS surveillance, the option of accessible anonymous testing sites must be supported and funded. The position adopted by the House of Delegates will guide the public policy agendas for this organization in 1998. LIFE Lobby hopes that the discussion surrounding any change in the national or state policy positions will include a more inclusive community involvement. If you have any questions, please give us a call at 916.444.0424. Thank you. ****************************************************************************** ****** LIFE: California's Lesbian, Gay, Bisexual, Transgender and HIV/AIDS Lobby POSITION ON HIV SURVEILLANCE, REPORTING AND TESTING It has become increasingly true that, with the advent of new therapies, people with HIV are progressing less often to an AIDS diagnosis. Therefore, the primary manner in which the epidemic is currently monitored -- through AIDS case counting -- has become less accurate in capturing the overall picture of the prevalence of the epidemic. The AIDS community has long held a position of opposition to HIV case reporting, particularly by name, due to a well-founded and documented deterrent effect on the acceptance of HIV testing because of the fear of AIDS-based discrimination. This concern continues to date. Recently, political pressure has substantially increased to specifically create a federal name-based registry of people with HIV and public health officials have called for development of a national standard of state or locally based HIV reporting of names. We believe that community involvement is essential in any discussion regarding the changing of national policy positions. Thus, LIFE Lobby takes the following positions with regard to the monitoring of the HIV epidemic: 1) HIV Surveillance After careful assessment of the need for reliable HIV data in order to better track the epidemic, LIFE Lobby cautiously supports improving our AIDS surveillance system by including HIV case counting/surveillance. We do not believe that any particular system of reporting is indicated by the science of the epidemic. Data gathered through HIV case reporting must be provided to community planning bodies for use in prevention, care planning and resource allocation. However, the purpose of HIV surveillance and reporting is not to link individuals to treatment; HIV surveillance does not expand access to treatment services. 2) HIV Reporting LIFE Lobby vigorously opposes the reporting of HIV cases by name. We do not support efforts to develop a federal, state or local name-based registry of people with HIV; we do not support changing the national standard with regard to HIV name-based reporting; and we would not support the Centers for Disease Control and Prevention (CDC) in promoting name-based HIV reporting to the states. Instead, we support the use of systems that respect and protect confidentiality and privacy, such as those that use unique or coded identifiers. HIV reporting does not automatically link individuals to treatment services and the method of reporting does not determine linkage to treatment. Prior to the implementation by the states of any system of HIV surveillance, significant and enforceable confidentiality and anti-discrimination protections must be in place, including strong civil and criminal penalties for breaches of confidentiality. The CDC must condition HIV surveillance funding on the establishment and expansion of such state laws. LIFE Lobby also supports the establishment of federal privacy and anti-discrimination protections. 3) Anonymous Testing The option of accessible anonymous testing needs to be supported and funded regardless of any change in our national system of HIV/AIDS surveillance. Anonymous testing must be improved, expanded and available in all states and localities. The CDC must actively encourage this option by mandating wide availability of anonymous test sites as a condition of all HIV Prevention Cooperative Agreements, particularly if any type of national HIV surveillance is implemented. 4) HIV Counseling and Testing LIFE Lobby supports the encouragement of voluntary, non-coercive, accessible HIV testing with informed consent, accompanied by client-centered, culturally competent, risk reduction-oriented HIV prevention counseling services in both public and private settings by individuals who are professionally trained in HIV transmission and psycho-social issues. Individuals should be linked to easily accessible, appropriate and adequately funded systems of care through counseling and testing programs. We are adamant in our opposition to attempts at controlling the HIV epidemic through a mandatory testing approach. 5) Partner Notification We support voluntary, confidential, non-coercive, client-centered partner notification programs, with the utmost protection of privacy. However, partner notification must not be linked to any HIV surveillance system; HIV surveillance will not in any way improve our partner notification efforts. (Approved House of Delegates 11/97) # # # This message has been brought to you by LIFE: California's Lesbian, Gay, Bisexual, Transgender and HIV/AIDS Lobby. LIFE has been lobbying on behalf of California's lesbian, gay, bisexual, transgender and HIV-affected communities since 1986. Our organization is the oldest and largest institution representing these communities in California's State Capitol and is proud to celebrate over a decade of service. If you would like further information about LIFE's activities, events or membership, please contact our office at: LIFE: California's Lesbian, Gay, Bisexual, Transgender & HIV/AIDS Lobby 1301 H Street Sacramento, California 95814-1906 Phone: 916-444-0424 Fax: 916-444-3059 E-Mail: life.info@lifelobby.org Website: http://www.lifelobby.org