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    "ocrText": "JAMA HIV/AIDS Information Center thical Opinions on HIV/AIDS Issues\nhttp://www.ama-assn.org/special/hiv/policy/testing.htm\nJAMA\nHIV/AIDS Information Center\nHIV/AIDS\nThe Journal of the American Medical Association\nPolicy\nReferences\nAdditional\nHIV Testing and Reporting\nResources\nBy Ronald Bayer, PhD\nProfessor, School of Public Health\nColumbia University\nNew York, NY\n(Posted March 1996)\nOverview\nFrom the outset, the test developed to detect antibody to HIV mired in\ncontroversy.\nUncertainty about the significance of the test's findings and about its quality and\naccuracy provided the technical substrate of disputes that inevitably took on a\npolitical and ethical character, since issues of privacy, communal health, social\nand economic discrimination, coercion, and liberty were always involved.\nThe availability of the test, first used on a broad scale in blood banking, quickly\nraised a host of key questions. For example, how would the test be used outside\nof the testing context? Would groups at increased risk for AIDS be encouraged\nto take the test? How forceful would such encouragement be? How would those\nwho agreed to be tested be counseled about the test's significance for themselves\nand others? Would and could the results be kept confidential? Would voluntary\ntesting be a prelude to compulsory screening? What would be the consequence\nof testing for the right to work? To go to school? To obtain insurance? To bear\nchildren? To remain free?\nEach of these questions would force a confrontation over the fundamental matter\nof the relationship between the defense of privacy and the protection of the\npublic health, over the roles of voluntarism and coercion in the social response to\nthe threat of AIDS.\nThe issue of medical confidentiality is so important in the HIV testing and\nreporting context because it has been widely recognized as a central element in\nthe effective response to AIDS. Not only does the principle rest upon ethical\nnorms of autonomy and respect for privacy, but it has been viewed as crucial to\nencouraging those most at risk to come forward for HIV testing and for clinical\nattention.\nBut as important as the principle of confidentiality is, it has its limits. When\ncompeting social concerns are of sufficient magnitude, physicians and ethicists\nhave acknowledged that exceptions may be made. The definition of when the\nconcerns reach the standard of sufficient magnitude, however, has always been a\nmatter of grave dispute.\nEarly in the century, for example, private practitioners found themselves in\nconflict with public officials who believed that the public health required that the\nnames of those with tuberculosis and venereal disease be reported to confidential\nregistries for purposes of epidemiological surveillance, contact investigation and\n1 of 4\n11/1/98 5:41 PM\nJAMA HIV/AIDS Information Center thical Opinions on HIV/AIDS Issues\nhttp://www.ama-assn.org/special/hiv/policy/testing.htm\nclinical follow-up.\nThese debates resurfaced in the context of the AIDS epidemic. Interestingly, in\nthe epidemic's early years, when state health departments moved to require the\nreporting of the names of those with AIDS, there was little protest because of a\nnear universal recognition that an understanding of the new disease required\ncomplete surveillance data.\nWhere there as been protracted bitter controversy and ethical dispute has been\nover the question of whether the logic of AIDS reporting requires that the names\nof those with asymptomatic HIV be reported as well. The debate has been\nlargely framed by the question of whether such reporting would have the\ncounterproductive consequence of discouraging HIV testing or whether it would\nenhance the public health goals of surveillance and contact tracing.\nDuring the past decade, the debate over HIV testing has evolved, driven by\nchanging social concerns and fears about casual transmission, conceptions of the\nrole of the test in fostering behavioral change, and advances in therapeutics that\nhave altered the justification for identification of those with asymptomatic\ninfection.\nIn the first years after the HIV test was developed, ethical analyses tended to\nunderscore the need to protect the privacy interests of those who were tested\nwhile encouraging voluntary testing. (2) The major exception to the principle of\nvoluntariness that was embedded in the prevailing ethical framework was\nblinded or anonymous testing for purposes of epidemiological surveillance. (4)\nDebate also emerged over the role of testing in both health and life insurance. (5)\nProponents of testing would argue that it merely represented an extension of\nsound underwriting principles; opponents would characterize such screening as\nthe basis for invidious discrimination.\nConflict also has occurred over the question of screening travelers, immigrants,\nand refugees. (6) Proponents of such screening have depicted it as a rational\napproach to preventing the \"transmission\" of new infections across borders;\nthose who have resisted such efforts have claimed that in the case of travelers,\nHIV screening would present a logistical nightmare with profound human rights\nimplications. In the case of immigrants and refugees, opponents of screening\nhave emphasized the importance of treating HIV no differently than other\nchronic conditions.\nThe most heated controversy has centered on the question of newborn testing\nand testing during pregnancy. In these cases, the debate has centered on the\nquestion of whether the child's interest in identification for purposes of\ntherapeutic intervention or for purposes of prophylaxis against infection can\noverride the claims of maternal privacy. (7,8) This debate, like others,\nunderscores in an important way the central ethical concern about privacy and\nvoluntarism in the decade-long controversy over HIV testing.\nBack to top\nReferences\n1. Levine C, Bayer R. The ethics of screening for early intervention in HIV\ndisease. Am J Public Health. 1989;79:1661-1667.\n2 of 4\n11/1/98 5:41 PM\nJAMA HIV/AIDS Information Center thical Opinions on HIV/AIDS Issues\nhttp://www.ama-assn.org/special/hiv/policy/testing.htm\n2. Field MA. Testing for AIDS: uses and abuses. Am J Law Med.\n1990;16:33-106.\n3. Bayer R, Lumey LH, Wan L. The American, British and Dutch responses to\nunlinked anonymous HIV seroprevalence studies: an international comparison.\nAIDS (UK). 1990. Reprinted in Law Med Health Care. 1991;19:3-4.\n4. Isaacman SH, Miller LA. Neonatal HIV seroprevalence studies: a critique of\nnational and international practices. J Legal Med. 1993,14:413-461.\n5. Stone D. The rhetoric of insurance law: the debate over AIDS testing. Law\nSocial Inquiry. 1990;15:2.\n6. Gostin LO, Cleary PD, Mayer KH, Brandt AM, Chittendon EH. Screening\nimmigrants and international travelers for the human immunodeficiency virus. N\nEngl J Med. 1990;332:1743-1746.\n7. Bayer R. Women's rights, babies' interests: ethics, politics, and science in the\ndebate of newborn screening, In: Minkoff H, DeHovitz J, Duerr A, eds. HIV\nInfection in Women. New York, NY: Raven Press; 1995:293-307.\n8. Working Group on HIV Testing of Pregnant Women and Newborns. HIV\ninfection, pregnant women, and newborns: a policy proposal for information and\ntesting. JAMA. 1990;264:2416-2420.\nBack to top\nAdditional Resources\nBlood\nBayer R. Gays and the sigma of 'bad blood.' Hastings Cent Rep. 1983;13:2, 5-7.\nMurray T. The poisoned gift: AIDS and blood. Milbank Q. 1990;68(suppl\n2):205-225.\nGeneral\nBayer R, Levine C, Wolf SM. HIV antibody screening: an ethical framework for\nevaluating proposed programs. JAMA. 1986,256:1768-1774.\nReporting\nFox D. From TB to AIDS: value conflicts in reporting disease. Hastings Cent\nRep. 1986;16(suppl):11-16.\nFrancis DP, Singleton JA. Reporting of HIV-1 infection through the provision of\nessential services. J Acquir Immun Defic Syndr. 1993;6:285-286.\nScreening and Employment\nGostin LO. The AIDS Litigation Project: a national review of government and\nhuman rights commission decisions, II: discrimination. JAMA.\n1990;263:2086-2093.\nBack to top\n3 of 4\n11/1/98 5:41 PM\nJAMA HIV/AIDS Information Center - thical Opinions on HIV/AIDS Issues\nhttp://www.ama-assn.org/special/hiv/policy/testing.html\nJAMA\nNewsline\nLibrary\nTreatment Center\nPrevention\nHIV/AIDS\nPolicy\nEducation & Support Center\nBest of the Net\nSearch\nFeedback\nAMA Home Page\nThis site produced by the Journal of the American Medical Association\nwith support from Glaxo Wellcome Inc.\n©\n1997 American Medical Association. All rights reserved.\n4 of 4\n11/1/98 5:41 PM\nHealthGate - Document\nhttp://www.healthgate.com/cgi-bin/..ilf=G&d=fmb96em=8652318xui=98239571\nclick here\nReturn to the HealthGate Home Page.\nSend comments to:[email protected]\nCopyright ©1996 HealthGate Data Corp., All rights reserved.\n2 of 2\n10/26/98 11:26 AM\nHealthGate - Document\nhttp://www.healthgate.com/cgi-bin/.=160767&ui=98703272;AlDS/98702272\nCountry of Publication\nUNITED STATES\nclick here\nand njHealthGat\nReturn to the HealthGate Home Page.\nSend comments to:[email protected]\nCopyright ©1996 HealthGate Data Corp., All rights reserved.\n2 of 2\n10/26/98 11:19 AM\nHealthGate - Document\nhttp://www.healthgate.com/cgi-bin/..ilf=G&d=tmb96&m=741610&ui=98097216\nclick here\nIf you're\ngoing to be\nReturn to the HealthGate Home Page.\nSend comments to:[email protected]\nCopyright ©1996 HealthGate Data Corp., All rights reserved.\n2 of 2\n10/26/98 11:22 AM\nCaution in Implementing HIV Surveillance System Resolution\nhttp://www.glma.org/pnamesreporting.html\nCaution in Implamenting HIV\nSurveillance System\nGLMA Public Policy\nResolution: 110-97\nApproved: October 25, 1997\nWHEREAS, treatment of HIV/AIDS has vastly improved in the past several years, which has resulted in\ndeclines in AIDS diagnosis and death; and\nWHEREAS, the Centers for Disease Control and Prevention (CDC) AIDS Surveillance system,\nespecially for reporting trends in infection, is no longer adequate; and\nWHEREAS, the CDC is preparing to advise states that HIV case reporting must be implemented and\nthat named HIV surveillance is reasonable; and\nWHEREAS, research shows reluctance by some to be tested for the antibodies to HIV if the names those\nwho test positive are to be reported to the state; and\nWHEREAS, discrimination and bias against those who are HIV infected still occurs, and once privacy is\nbreached it can not be restored; and\nWHEREAS, named HIV reporting would result in greater risk of exposure to breaches in privacy for\nHIV infected individuals who could remain on a \"list\" years longer than those currently being reported\nwith an AIDS diagnosis; and\nWHEREAS, state assurances to protect the confidentiality of individuals in a named HIV reporting\nsystem cannot be guaranteed (and in the past has not been) as policy and procedures regarding\nmaintenance of such a list could change over time; and\nWHEREAS, individuals who participate in high-risk behaviors should be encouraged to get tested and\nget into treatment if HIV-infected, not frightened away from testing and treatment because of fear of the\nloss of confidentiality; and\nWHEREAS, a named HIV case report surveillance system will still not adequately represent the\nepidemic as it will provide information only on those choosing to be tested, therefore be it\nRESOLVED: That the Gay and Lesbian Medical Association strongly opposes named HIV reporting as\nit is detrimental to testing and treatment efforts, would be contrary to public health surveillance and\nprevention, and is not needed for tracking the epidemic; and be it further\nRESOLVED: That GLMA encourages the CDC to further study and improve unique identifier systems\nand other solutions, such as encryption, for the complete protection of confidential medical data before it\ncontinues any more efforts to promote a surveillance system involving named reporting of HIV; and be\nit further\nRESOLVED: That GLMA supports improved HIV surveillance so that the epidemic can be more\naccurately tracked and resources devoted to prevention and services can be most effectively targeted;\nand be it further\nRESOLVED: That GLMA encourages the CDC to expand the use of anonymous population-based\nseroprevelance studies to more accurately track the epidemic; and be it further\nRESOLVED: That GLMA believes that anonymous testing is an essential component of the public\nhealth response to the HIV epidemic and must be fully funded and enhanced in every state, and be it\n1 of 2\n10/25/98 5:14 PM\nCaution in Implementing HIV Surveillance System Resolution\nhttp://www.glma.org/pnamesreporting.html\nfurther\nRESOLVED: That GLMA strenuously rejects any plan to link surveillance with any other public health\neffort of disease control, such as partner notification.\nFor futher information contact:\nPeter Sawires, Public Policy Associate: [email protected]\n2 of 2\n10/25/98 5:14 PM\nImportance of Accurate HIV surreillance\nSystems\nHIV affects\nAIDS kills\nIt is important to have an accurate\nunderstand ing of extent B scope of\nepidemic in order to allocate limited\nresorices,\nThe Advocate Community les Favors Non-Name\nBased Sumeillance Systems.\nATDS\nThe advocate community has come out strongly\nin favor of non-hame based survillance\nsystems (Name groups There is concern\nthat mandatory name reporting -0 discovrage\ntreatment $ testing 2 Rccords for Longer\nperiod of time. The use of Privacy Protection D\ncostes or other non names Deased\nlatter data, privacy protections.\nDamas Names Based Systems Provide\ngreater Privacy Protections\nPrivacy concerns are huge - once\nbriached, can't be undone\nHealthGate - Document\nhttp://www.healthgate.com/cgi-bin/.=160767&ui=98703272; AIDS/98703272\nclick here\non HealthGate\nHealthGate Document\nRecord 1 from database: AIDSLINE\nOrder full text for this document\nTitle\nCDC says names, not numbers, do better job in tracking HIV. Centers for Disease Control and\nPrevention.\nAuthor\nAnonymous\nAddress\nSource\nAIDS Policy Law, 1998 Jan 23, 13:1, 6-7\nAbstract\nThe Centers for Disease Control and Prevention (CDC) released the results of a three-year\nevaluation of the unique identifier systems used in Maryland and Texas to track HIV cases. The\nreport indicates that the unique identifier systems fall short of the more widely-used name\nreporting systems. Currently all States track AIDS cases by name and 30 States also list HIV cases\nby name; only Maryland and Texas use the numerical alternative. CDC's report indicates the main\nproblem lies in getting health care providers to include the Social Security number in reports to\nhealth departments. More than one-fifth of the unique identifiers were missing the Social Security\nnumber, severely limiting the success of the surveillance system. The CDC added that findings\nfrom surveys of public attitude toward name-based surveillance indicate that the use of names is\nnot a major deterrent to HIV testing for high-risk individuals. The American Civil Liberties Union\nreported that the unique identifier system was a viable alternative in Maryland, noting that the\ncoded data were 76 percent complete during the second half of 1996, a rate that surpasses some\nStates with higher rates of HIV.\nLanguage of Publication\nEnglish\nUnique Identifier\n98703272; AIDS/98703272\nOrder full text for this document\nMeSH Heading (Major)\nDisease Notification *MT; HIV Infections|*EP; Population Surveillance|*MT\nMeSH Heading\nAdult; Centers for Disease Control and Prevention (U.S.); Confidentiality; Contact Tracing|MT;\nHuman; Maryland; Names; Registries; United States|EP\nPublication Type\nNEWSLETTER ARTICLE\nISSN\n0887-1493\n1 of 2\n10/26/98 11:19 AM\nhttp://130.14.32.44/cgi-bin/VERSION_A/IGM-client?27910+detail43\nNational Library of Medicine: IGM Full Record Screen\ni\nOrder\nLog off\nDocuments\nIGM\nNext\nDetails\nReturn\nReturn to\nPrevious\nRecord\nOf Search\nto Results\nSearch Screen\nRecord\nTITLE:\nThe University of Minnesota Youth and AIDS Projects'\nAdolescent Early Intervention Program: a model to link\nHIV-seropositive youth with care.\nAUTHOR:\nRemafedi G\nAUTHOR AFFILIATION:\nDepartment of Pediatrics, University of Minnesota,\nMinneapolis, USA.\nSOURCE:\nJ Adolesc Health. 1998 Aug;23(2 Suppl):115-21.\nSECONDARY SOURCE ID:\nMED/98376077\nABSTRACT:\nThe survival of human immunodeficiency virus (HIV)-positive\nadolescents may be abbreviated by delays in health care\ndelivery. Methods of linking youth with services have not been\nwell studied. With support from the Special Projects of National\nSignificance Program, the Youth and Acquired\nImmunodeficiency Syndrome (AIDS) Projects' (YAP)\nAdolescent Early Intervention Program offers early\nintervention health care services to all affected youth in\nMinnesota, a state with mandatory reporting of HIV/AIDS\ncases. The conceptual framework is a novel application of\ntraditional public health disease surveillance strategies to link\nHIV-positive adolescents with health care services. The target\npopulation is composed of all 13-22-year-old HIV-positive\npersons reported to the Minnesota Department of Health\n(MDH). MDH staff locate and contact HIV-positive youth,\nconduct structured interviews regarding health status and\nneeds, and facilitate enrollment at YAP. Sixteen male and 20\nfemale participants (mean age 21 years; 56% people of color;\n32% gay or bisexual) reported serious health risks, including\ninconsistent condom use (83%), poverty (78%), high school\ndropout (56%), unemployment (50%), illegal conduct (50%),\nmedical debt (42%), unstable living situations (33%), running\naway (33%), substance abuse (33%) and attempted suicide\n(28%). More than one third reported each of six HIV-related\nsymptoms. Seventy-five percent of participants sought\nadvocacy/case coordination; 56%, clinical trials of experimental\ntherapies; and 50%, vocational training and access to\nentitlement/eligibility programs. Linking HIV-positive youth to\ncare is a valuable extension of the work of disease intervention\nspecialists in states with similar reporting systems.\nMAIN MESH HEADINGS:\nAcquired Immunodeficiency Syndrome/*PREVENTION &\nCONTROL\nAdolescent Health Services/*ORGANIZATION & ADMIN\n*Models, Organizational\n1 of 2\n10/25/98 5:39 PM\nhttp://130.14.32.44/cgi-bin/VERSION_A/IGM-elient?27910+detail-H3\nNational Health Programs/*ORGANIZATION & ADMIN\nADDITIONAL MESH\nAcquired Immunodeficiency Syndrome/THERAPY\nHEADINGS:\nAdolescence\nAdult\nCase Management/STANDARDS\nFemale\nHealth Education/METHODS\nHuman\nHIV Infections/PREVENTION & CONTROL\nHIV Infections/THERAPY\nIntervention Studies\nMale\nMinnesota\nProgram Evaluation\nRisk Factors\nSupport, U.S. Gov't, P.H.S.\nPUBLICATION TYPES:\nJOURNAL ARTICLE\nLANGUAGE:\nEng\nOrder\n(\nLog off\nDocuments\nIGM\nNext\nDetails\nReturn\nReturn to\nPrevious\nRecord\nof Search\nto Results\nSearch Screen\nRecord\n2 of 2\n10/25/98 5:39 PM\nhttp://130.14.32.44/cgi-bin/VERSION_A/IGM-client?27910+detail+9\nNational Library of Medicine: IGM Full Record Screen\nOrder\ni\nLog off\nDocuments\nIGM\nNext\nDetails\nReturn\nReturn to\nPrevious\nRecord\nof Search\nto Results\nSearch Screen\nRecord\nTITLE:\nProtection of HIV/AIDS surveillance data in the United States.\nAUTHOR:\nMetler R; Gostin LO; Posid JM; Gnesda DS; Sullivan PS;\nRiedford DG; Lazzarini Z\nAUTHOR AFFILIATION:\nCDC, Atlanta, GA, USA.\nSOURCE:\nInt Conf AIDS. 1998;12:973 (abstract no. 44185).\nSECONDARY SOURCE ID: ICA12/98406917\nABSTRACT:\nBACKGROUND: Protection of HIV/AIDS information and\nsurveillance data, to prevent disclosure and discrimination, is a\nhuman rights concern and essential to the conduct of\nsurveillance. The Centers for Disease Control and Prevention\n(CDC) assessed current security practices at surveillance units\n(SU) and reviewed state and federal confidentiality laws to see if\nprotections were adequate. METHODS: A 124-question survey\nof security practices was administered at 33 of 61 SUs. A survey\nof state epidemiologists and legal database search were used to\nassess state laws. To assess federal protections, a review of\nfederal statutes, regulations, constitutional law, case law, legal\njournals, agency recommendations, and legislative committee\nreports was undertaken. RESULTS: Of 33 SUs surveyed, all had\ndisciplinary policies for improper disclosure of data, 89% closed\noff the work area containing surveillance data with identifiers to\noutsiders, and 82% prohibited cleaning crews from entering\nsurveillance units unescorted. All states had legal protection for\nHIV/AIDS data, but their content varied widely. For example,\nexceptions to confidentiality laws allowed disclosures to: health\nproviders (83%), needle-sharing or sex partners (71%),\nsubpoena or court order (56%), blood banks (42%), correctional\ninstitutions (27%), school officials (23%), and insurance\ncompanies (15%). At the federal level, protection consists of\nremoval of names before encrypted HIV/AIDS data are\ntransmitted to CDC and of a collection of statutory and\nconstitutional safeguards. CONCLUSIONS: In summary,\nprotection must be assured at all 3 levels: SU, state, and federal.\nWhile all SUs have security policies, CDC is further\nstrengthening protections by using survey findings to implement\nminimum security standards. To address state law variability,\nCDC is developing model state legislation on public health\ninformation privacy, with emphasis on HIV data. Federal\nlegislation providing uniform protection of individual health\ninformation, including HIV data, is being considered.\nMAIN MESH HEADINGS:\n*Acquired Immunodeficiency Syndrome\nConfidentiality/*LEGISLATION & JURISPRUD\n*HIV Infections\n1 of 2\n10/25/98 5:40 PM\nhttp://130.14.32.44/cgi-bin/VERSION_A/IGM-client?27910+detail-9\n*HIV Infections\n*Population Surveillance\nADDITIONAL MESH\nHuman\nHEADINGS:\nPrivacy\nUnited States\nPUBLICATION TYPES:\nABSTRACT\nLANGUAGE:\nEng\nOrder\nt\nLog off\nDocuments\nIGM\nNext\nDetails\nReturn\nReturn to\nPrevious\nRecord\nof Search\nto Results\nSearch Screen\nRecord\n2 of 2\n10/25/98 5:40 PM\nhttp://130.14.32.44/cgi-bin/VERSION_A/IGM-client?27910+detail+8\nNational Library of Medicine: IGM Full Record Screen\ni\nOrder\nLog off\nDocuments\nIGM\nNext\nDetails\nReturn\nReturn\nto\nPrevious\nRecord\nof Search\nto Results\nSearch Screen\nRecord\nTITLE:\nAssessment of the impact of a major HIV/AIDS confidentiality\nbreach, Florida.\nAUTHOR:\nLiberti T; Conti LA; Lieb S; Dulin S; Maddox L; Crockett LK\nAUTHOR AFFILIATION:\nFlorida Department of Health, Tallahassee 32399-0700, USA.\nSOURCE:\nInt Conf AIDS. 1998;12:928 (abstract no. 43421).\nSECONDARY SOURCE ID: ICA12/98405049\nABSTRACT:\nBACKGROUND: In September 1996, a computer diskette\ncontaining the names and demographic information of\nnumerous HIV-positive patients was anonymously mailed to a\nlocal health department and 2 major newspapers serving the\n5-county Tampa Bay area of Florida. The newspapers publicized\nthe receipt of the unauthorized information, but did not further\ndisclose the identities of the patients. Investigations of the\nincident were launched by the Florida Department of Health\n(DOH) and the Florida Department of Law Enforcement.\nMETHODS: Law enforcement officials gathered evidence about\nthe incident. The DOH conducted a study to assess the impact of\nthe breach on the AIDS surveillance system and HIV counseling\nand testing programs. RESULTS: A DOH employee and a\nnon-employee were implicated in the confidentiality breach. The\nvolume of AIDS case reports declined temporarily in the county\nwhere the employee worked due to his being placed on\nadministrative leave and the time consumed by the criminal and\ninternal DOH investigations. There was no evidence to suggest\nthat local provider confidence in the AIDS reporting system was\nadversely affected by the breach. When active AIDS surveillance\nresumed in early 1997, case reporting in the area returned to\nnormal levels, and missed cases were collected retrospectively.\nElsewhere in the state, no effect on case reporting was evident.\nStatewide, as well as in the 5-county Tampa Bay area, overall\nHIV counseling and testing patterns for October-December 1996\nwere similar to those for the same period in 1995. In the county\nwhere the employee worked, a slight decline in HIV testing was\nobserved in the immediate post-breach period, which was\nfollowed by a return to the pre-breach level. Implementation of\nlegislatively mandated HIV infection reporting-initially\nscheduled for January 1997--was postponed by 6 months.\nCONCLUSIONS: The breach had minimal impact on the AIDS\nsurveillance system and HIV counseling and testing programs\nstatewide. The employee resigned, and he and the non-employee\nwere convicted of criminal charges. No class action or individual\nlawsuit was filed by patients. Following the breach, DOH\n1 of 2\n10/25/98 5:43 PM\nhttp://130.14.32.44/cgi-bin/VERSION_A/IGM-client?27910+detail8\nsecurity and confidentiality measures were enhanced statewide,\nand such measures became a model for other states' HIV/AIDS\nsurveillance systems. HIV infection reporting was successfully\nimplemented in July 1997.\nMAIN MESH HEADINGS:\nAcquired Immunodeficiency Syndrome/*DIAGNOSIS\n*Confidentiality\n*Confidentiality/LEGISLATION & JURISPRUD\nHIV Infections/*DIAGNOSIS\n*Truth Disclosure\nADDITIONAL MESH\nAcquired Immunodeficiency Syndrome/EPIDEMIOLOGY\nHEADINGS:\nCounseling\nCrime\nDisease Notification/LEGISLATION & JURISPRUD\nFlorida\nHuman\nHIV Infections/EPIDEMIOLOGY\nPopulation Surveillance\nPUBLICATION TYPES:\nABSTRACT\nLANGUAGE:\nEng\ni\nOrder\nLog off\nDocuments\n\"\nIGM\nNext\nDetails\nReturn\nReturn to\nPrevious\nRecord\nof Search\nto Results\nSearch Screen\nRecord\n2 of 2\n10/25/98 5:43 PM\nhttp://130.14.32.44/cgi-bin/VERSION_A/IGM-client?27910+detail+2\nNational Library of Medicine: IGM Full Record Screen\ni\nOrder\nLog off\nDocuments\nIGM\nNext\nDetails\nReturn\nReturn to\nPrevious\nRecord\nof Search\nto Results\nSearch Screen\nRecord\nTITLE:\nFacing reality [letter]\nAUTHOR:\nGault MH\nSOURCE:\nCMAJ. 1998 Sep 8;159(5):443, 445.\nSECONDARY SOURCE ID:\nMED/98429715\nMAIN MESH HEADINGS:\nHIV Infections/*PREVENTION & CONTROL\n*Medical Missions, Official\n*Occupational Health\n*Voluntary Workers\nADDITIONAL MESH HEADINGS:\nFemale\nHuman\nHIV Infections/EPIDEMIOLOGY\nHIV Infections/TRANSMISSION\nLesotho/EPIDEMIOLOGY\nMale\nPopulation Surveillance\nWorld Health Organization\nPUBLICATION TYPES:\nLETTER\nJOURNAL ARTICLE\nLANGUAGE:\nEng\nOrder\ni\nLog off\nDocuments\n\"\nIGM\nNext\nDetails\nReturn\nReturn to\nPrevious\nRecord\nof Search\nto Results\nSearch Screen\nRecord\nlook for\nMD / MA /TX\nstudies /\narticles\n1 of 1\n10/25/98 5:38 PM\nStudy: Anonymous HIV Testing Is Key\nhttp://www.nytimes.com/aponline/a/AP-AIDS-Tests.html\nBreaking News\nThe New York Times\nTHE WEB\nFROM A.P.\nHome\nSite Index\nSite Search\nForums\nArchives\nMarketplace\nSherlock makes searching the Internet SO easy\nOctober 27, 1998\nStudy: Anonymous HIV Testing Is Key\nA.P. INDEXES: TOP STORIES I NEWS I SPORTS I BUSINESS I TECHNOLOGY | ENTERTAINMENT\nFiled at 7:54 p.m. EST\nBy The Associated Press\nCHICAGO (AP) Anonymous screening for the AIDS virus leads to people\ngetting tested and treated much earlier, a study found.\nBut where name-linked testing is required as it is now in 11 states public\nclinics have seen no significant decline in the number of people tested, another\nstudy found.\nIn confidential testing, the person's name is linked to test results in a medical\nchart and kept on file at health departments to prevent cases from being tracked\nmore than once. The names are stripped before results are sent to the Centers\nfor Disease Control and Prevention. In anonymous testing, only a number is\nrecorded with the test result, never a name.\nFederal authorities favor the availability of both. They say name reporting is the\nonly way to track the epidemic, but anonymous testing may help curb it by\ngetting people into treatment earlier.\n`The history of this disease has been a little different than other diseases,\nbecause we haven't had a therapy until recently that was highly effective,\" said\nDr. Allyn K. Nakashima, lead author of one study and a CDC medical\nepidemiologist.\nPublic reluctance to give names to public health officials for testing has eased,\nsince a person's anonymity disappears when he or she becomes a patient, she\nsaid.\nThe CDC studied about 459,000 tests at health departments in six states before\nand after they implemented reporting of names of people who tested positive\nfor HIV, the virus that causes AIDS.\nName reporting did not appear to diminish the use of testing in the states\nstudied Louisiana, Michigan, Nebraska, Nevada, New Jersey and Tennessee\n-- the CDC said in Wednesday's Journal of the American Medical Association.\nName reporting has been required since 1981 in all states for full-blown AIDS\nand has been routine even longer in all states for other diseases ranging from\n1 of 2\n10/27/98 8:04 PM\nStates That Track HIV Cases by Name\nhttp://www.nytimes.com/aponline/a/AP-AIDS-Tests-List.htm\nBreaking News\nThe New York Times\nON THE WEB\nFROM A.P.\nHome\nSite Index\nSite Search\nForums\nArchives\nMarketplace\nGet a new Mac for $99\nOctober 27, 1998\nStates That Track HIV Cases by Name\nA.P. INDEXES: TOP STORIES I NEWS I SPORTS I BUSINESS I TECHNOLOGY I ENTERTAINMENT\nFiled at 7:53 p.m. EST\nBy The Associated Press\nThese 11 states require reporting by name of anyone who tests positive for HIV\nto local health departments for confidential case tracking. All other states offer\nanonymity as an option in HIV testing.\nAlabama\nIdaho\nIowa\nMississippi\nNevada\nNorth Carolina\nNorth Dakota\nSouth Carolina\nSouth Dakota\nTennessee\nWyoming\n1 of 2\n10/27/98 8:03 PM\nGMHC News Release\nhttp://www.gmhc.org/press/980326a.html\nGMHCNews Release\nFOR IMMEDIATE RELEASE\nMarch 26, 1998\nContact: Stephen Soba: (212) 367-1214/Pager: (917) 556-6797\nGreg Lugliani, (212) 367-1210/Pager: (917) 556-6356\nGMHC Welcomes State HIV Workgroup's Call for\nMonitoring and Firm Rejection of Mandatory Partner\nNotification and Names Reporting\nA Unique Identifier System is Clearly Recommended\nRonald Johnson, Managing Director for Public Policy, Communications and Community\nRelations at Gay Men's Health Crisis, released the following statement:\nGMHC welcomes the New York State AIDS Advisory Council HIV Surveillance\nWorkgroup's long-awaited report on tracking the epidemic. The report clearly states the\ncompelling need for collecting HIV data as the best weapon to stop the future spread of\nHIV. New York urgently needs a new system to monitor the AIDS epidemic, and GMHC\nhopes this report will provide the needed impetus to legislation that makes this system a\nreality.\nIn light of an ill-considered bill currently in Albany sponsored by Assemblywoman Nettie\nMayersohn (D-Queens) and Senator Guy Velella (R-Bronx), perhaps the report's most\nsignificant recommendation is its unequivocal rejection of coercive, mandatory\ngovernment-run partner notification programs. The report instead recognizes the importance\nof partner notification remaining voluntary and within the context of clinical care.\nThe report also wisely comes out for the continuation of anonymous testing in New York\nState and the safeguarding of confidentiality for those who test positive. Given the real fears\nmany HIV-positive people have of being named and reported to the government, we are\ntruly heartened that the HIV Surveillance Workgroup overwhelmingly rejected a\nnames-based system. Gay Men's Health Crisis is opposed to any names-based HIV\nsurveillance system.\nShockingly, workgroup members from the New York City Department of Health caved to\npolitical pressure and changed their votes to support criminal penalties for HIV-positive\npeople who do not disclose their status to sexual or needle- sharing partners, even if they are\nengaging in safer sex. Despite the City's flip-flop, this measure was defeated. Lawmakers\nwho seek a quick fix to the worst public health crisis the state has ever faced and who would\ncontemplate punishments for people with HIV should heed the report's overarching message\nthat simple solutions in the fight against AIDS don't save lives. Policies that promote, not\ndiscourage, HIV testing are the only way to go.\nPress Room Facts & Statistics I A History of GMHC & AIDS I GMHC at a Glance\nGMHC\n1 of 1\n10/23/98 6:13 PM\nGMHC News Release\nhttp://www.gmhc.org/press/980113.html\nGMHC News Release\nFOR IMMEDIATE RELEASE\nJanuary 13, 1998\nContact: Stephen Soba, (212) 367-1214\nGay Men's Health Crisis Calls for Monitoring of HIV\nInfections\nDemands New York State Develop System that Collects and Uses Data to\nExpand Treatment and Prevent New Infections, While Protecting Privacy\nGay Men's Health Crisis called today for a new system for tracking HIV infection in New\nYork State. Until now, GMHC had opposed plans to report HIV infections. But with\nchanges in the epidemic, the agency now believes that the old hospital-based AIDS\nreporting system is obsolete. A new monitoring system is critical to help prevent new\ninfections, especially among young people, as well as to expand health care for those\nalready infected with HIV. The numbers of AIDS cases and deaths have been available for\nyears, but the huge number of those infected with HIV - and of new infections each year\n- remains a mystery.\n\"Shifts in HIV infections and new early treatment options demand new approaches,\" said\nRonald S. Johnson, GMHC's Managing Director for Public Policy, Communications and\nCommunity Relations. \"Counting only those who are hospitalized reveals yesterday's\nepidemic, not today's. We are committed to fighting for a new system of tracking HIV\ninfections with strong privacy protections that will help those most at risk: the poor, women,\nyouth, especially gay youth, and young adults.\"\nNew York's current monitoring system, designed in 1983, tracks the epidemic by counting\npeople who become hospitalized with, or die from, AIDS-related illnesses. The system\nmisses the shift of HIV care from hospitals to outpatient clinics and doctors' offices. It also\nmisses the large numbers of people who have learned they are HIV positive but have\nremained healthy.\nGMHC is calling for a monitoring system with strong and enforceable privacy protections\nto prevent discrimination against people who are HIV positive. Personal information\ngathered by the state public health department needs to be protected as stringently as the\ncurrent AIDS monitoring system has guarded privacy for nearly two decades. Public health\ndata in New York State are among the most highly protected form of medical information.\nGMHC believes that the real threat to privacy is the unregulated free market for private\nmedical records among insurers, drug companies, industry and employers.\nGMHC also favors the preservation of free, publicly-funded anonymous testing.\nAnonymous testing is an important vehicle for some people to receive counseling and\ntesting, enter medical care, and prevent further transmission. Anonymous testing is an\nimportant adjunct to any HIV monitoring system, because lack of this option leads some\npeople to delay testing, donate blood as a means to be tested anonymously, and give false\ninformation at confidential testing sites.\n\"Our call for a new monitoring system should not become a vehicle for enacting punitive,\nineffective or unrelated HIV policies,\" said Mr. Johnson. \"Some propose linking a new\nmonitoring system to the issue of partner notification. We are opposed to mandatory,\nl of 2\n10/23/98 6:14 PM\nGMHC News Release\nhttp://www.gmhc.org/press/980113.htm\ngovernment-run partner notification. We are convinced that counseling about voluntary\ndisclosure and protecting sexual partners must continue to be performed by doctors, nurses,\nsocial workers and community-based organizations. The real challenge for New York State\npublic health officials and elected leaders is to use the data collected from a new HIV\nmonitoring system to increase care for the infected and to prevent new infections from\noccurring.\"\nPress Room I Facts & Statistics | A History of GMHC & AIDS | GMHC at a Glance\nGMHC\n2 of 2\n10/23/98 6:14 PM\nGMHC News Release\nhttp://www.gmhc.org/press/980326.html\nGMHCNews Release\nFOR IMMEDIATE RELEASE\nMarch 26, 1998\nContact: Stephen Soba, (212) 367-1214\nGMHC Strongly Opposes Coercive Partner Notification\nBill\nBill Would Deter HIV Testing, Endanger People with HIV and Their\nPartners\nThe following statement was released by Ronald S. Johnson, Managing Director for\nPublic Policy, Communications and Community Relations at Gay Men's Health Crisis:\nGay Men's Health Crisis firmly rejects legislation mandating government- directed contact\ntracing, a misguided, ineffective and perilous approach to a complex question. Mandatory\npartner notification is not the answer. It would accomplish nothing, except to heighten the\nthreat of domestic violence and lead people at risk for HIV to avoid early testing and\nmedical treatment, driving the infected and their partners into a state of increased ignorance\nand even greater danger.\nThe Mayersohn/Velella bill (A.6629/S.4422) demands that physicians report the names of\nHIV-positive persons to local health departments, which would in turn notify spouses and/or\nknown sexual partners. In an election year, politicians may conveniently forget that existing\nstate law already authorizes partner notification, regardless of the consent of people with\nHIV, whenever physicians believe there is risk of infection to an unsuspecting partner.\nCommunities most vulnerable to infection -- gay men, intravenous drug users, adolescents,\nwomen of color -- will not be tested if they believe government is collecting names of HIV\npositive people and hunting down their partners. Rather than compelling people to resist\ngetting tested, as this bill will do, New York should commit itself to aggressively promoting\nHIV testing. That's the best way of stemming the spread of HIV.\nIf this bill passes, spouses and partners, particularly women, will fall prey to domestic\nviolence, which is far more likely to occur as a result of government-driven HIV disclosure.\nTo argue that HIV is the same as other STDs is deceptive; unlike syphilis and gonorrhea,\nHIV is an incurable life-long infection. Furthermore, the Mayersohn/Velella bill would\ncreate an outrageously costly bureaucratic structure - the cost could be as high as $5,600\nfor every single contact - wasting precious funds that could be spent more effectively to\npromote testing and prevention.\nWe share the legitimate concerns reflected in the Mayersohn/Velella bill. However,\nstopping the spread of HIV will require more than a simplistic response. Partner notification\nwill only succeed when an individual and a health care provider work together to identify\nand notify a partner.\nPress Room Facts & Statistics I A History of GMHC & AIDS I GMHC at a Glance\n1 of 1\n10/23/98 6:15 PM\nTake AIM News & Information: In the News\nhttp://www.takeaim.org/newsinfo.htm\nNEWS & INFORMATION\ni\nWhat's new? Find out about the latest theories, discoveries, and\ntreatments for HIV and AIDS.\nIn the News\n12th World AIDS Converence or\nTwo of AIM's finest were in Geneva, Switzerland for\ntry this mirror site , or this one\nthe conference on AIDS. Dr. David Ostrow offered a\nposter on Hepatis and HIV risk among drug-using men\nwho have sex with men, and the impact of new\ncombination HIV therapies on knowledge, attitudes,\nand behaviors among Chicago gay men. Dr. David\nMcKirnan offered a poster on HIV sexual risk among\nsubgroups of drug and alcohol-involved men who have\nsex with men. For abstracts of the posters, and links to\nmore information about the conference, see our\nGeneva Update, and view the press release.\nCBC calls for declaration of\nThe Congressional Black Caucus called upon Donna\nPublic Health Emergency\nShalala, Secretary of Health and Human Services to\ndeclare AIDS/HIV a public health emergency. Key to\nthe plan developed by the CBC is the integration of\nsubstance abuse treatment with HIV prevention and\ncare, as well as prevention and treatment of HIV in\nprison populations. Representatives also stated a\nstrategy must be developed to combat anti-gay bias.\nOn the record\nWant to know how your representative voted on the\nban against needle exchange programs? Check out\nthe discussion and the vote from the Congressional\nRecord. (If you want more info, check the Library of\nCongress search engine, search for needle\nexchange.)\nDrinks, Drugs and HIV\nAs the weather warms up and some of us begin to\ndrag ourselves out of winter hibernation and onto the\nparty circuit, it's a good time to review the impact of\ndrugs and drinking on people with HIV. We start this\nmonth's discussion with an informative brochure from\nGay Men's Health Crisis.\nName Reporting\nThe Illinois Department of Public Health opened up the\nin Illinois\ndiscussion of its proposed rule change to require\nmandatory reporting of names of HIV positive people.\nThe results of the discussion are unclear: some\nsources say there is now a work group to study other\noptions, while IDPH is still stating the proposal is going\non as scheduled, meaning the proposal will continue to\nbe refined over the next few months. Many health\norganizations and AIDS treatment advocates are\nopposing names reporting. While tracking HIV is a\ncrucial part of treatment and research, experts say\nthere are other ways to ensure effective tracking\nwithout names. We will keep you posted as details of\nthe proposed rule change become available.\nViagra and Pls\nReports indicate Viagra may interact with drugs\ncommonly used to fight HIV, including some protease\ninhibitors and antibiotics. There also may be possible\nadverse, or even fatal, effects of combining amyl\nnitrate (poppers) with Viagra. Check out the Gay and\nLesbian Medical Association press release and\nJAMA's article for more information.\n1 of 3\n10/23/98 6:20 PM\nTake AIM News & Information: In the News\nhttp://www.takeaim.org/newsinfo.htm\nHIV as Disability?\nUPDATE: The U.S. Supreme Court has decided HIV is\nconsidered a disability protected under the Americans\nwith Disabilities Act. As we reported last month,\nBragdon V. Abbot, centered on the refusal of a dentist\nto fill the cavity of a patient with HIV unless she agreed\nto have the procedure done in a hospital. For\ninformation on the case, see Chicago Sun-Times or\nThe Washington Post.\nPEP Talk\nIn the launch of our Feedback column, the discussion\nof Post-Exposure Prevention continues. Tell us what\nyou think. We'll include your comments in next month's\nFeedback.\nUndetectable Viral Load\nStudies indicate undetectable viral load in the blood\ndoesn't mean the virus is gone. It still hides in semen\nand in the brain.\nBarebacking\nWell into the second decade of the AIDS crisis, it\nseems more people are engaging in barebacking (sex\nwithout a condom). Sometimes it's intentional, either as\na part of a philosophy of risk taking, or as acceptable\nrisk between HIV-positive partners. If you are into\nbarebacking, we'd like to talk with you. We are\ncurrently conducting interviews with men in the\nChicago area who are having sex with other men, who\nfeel there is no longer a need to be quite so careful,\nmaybe because of the availability of new treatments,\nor maybe just because\nThe interviews take about an hour and a half, and a\nsmall stipend is offered. To get more information or\nsign up for an interview, please give us a call at\n773.525.0246, and tell 'em you saw it on the web.\nLet's talk about Sex\nCan you talk to your doctor about your sexuality?\nCheck out this Washington Post article for information\non how a doctor can talk about sex more comfortably\nwith his or her patients, including suggestions by our\nown Dr. David Ostrow.\nCelebrate Summer with the AIM\nAh, summer. Parades, lakefront gatherings, late night\nBoys\nstrolls down Halsted. Through it all, AIM is out and\nabout at area venues. For a complete schedule of\nwhen and where you can meet us to talk, check out\nthis month's calendar.\nWant more?\nWith HIV as with the rest of life, act locally, think\nglobally. Click here for a list of resources in Chicago,\nand links to publications, information and organizations\nall over the planet.\nFrom the TAKEAIM Library\nBehavioural and psychosocial implications of the new\nprotease inhibitors\nby David Ostrow, M.D., Ph.D. A discussion of the\nimplications of the new treatment options and viral\nload measurements.\nWake Up! Turn Off the auto-pilot Now by Stephen\nGendin. A reality check in the wake of media hype\nabout the successes of new treatments. Reprinted\nfrom the December issue of Community Prescription\n2 of 3\n10/23/98 6:20 PM\nTake AIM News & Information: In the News\nhttp://www.takeaim.org/newsinfo.htm.\nService Info Pack.\n0000\nDISCUSS\nABOUT US PRODUCTS\nHOME\nNumber of visits to this page:\n3 of 3\n10/23/98 6:20 PM\nIMPROVING HIV SURVEILLANCE SYSTEMS\nThis propos al would\nThe President has proposed a demonstration project providing States with funds to develop HIV\nsurveillance systems that utilize privacy protection codes rather than names based reporting.\nThese States would be required to apply their disease surveillance strategies in ways that link\ninfected individuals with critical health care and social support services. As a condition of\nrecieving funds, States would also be required to evaluate their new surveillance systems.\nBACKGROUND\nImportance of Accurate HIV Surveillance Systems\nIn 1995, AIDS became the leading cause of death for all Americans aged 25-44. Over half a\nmillion American men, women and children have been diagnosed with AIDS, and more than\n300,000 have already died from this disease. VAIDS strikes hardest against younger people,\nrobbing the country of valuable energy, talent and promise for the future. It is vitally important\nto have an accurate national surveillance system in order to allocate limited resources, target and\nevaluate prevention efforts, and project the future of the epidemic.\nantdated\nCurrent Surveillance Systems Are No Longer Adequate\nPresently, all people diagnosed with AIDS are reported by name to State and local health\ndepartments. State officials then delete identifying information from the reports and forward\nthem to the Centers for Disease Control (CDC) for compilation of national data on the AIDS\nepidemic. At the beginning of the epidemic, this was a reliable way to determine the extent of\ninfection nationwide, because people with HIV routinely developed AIDS within a very short\ntime period. However, because of the success of new HIV drug therapies, people are living\nlonger with asymptomatic HIV disease. Therefore, the current method of tracking the AIDS\nepidemic is no longer reliable, because it is based solely on the end stages of disease progression.\nHealth care organizations, AIDS advocates, and Federal, State, and local public health officials\nare all in agreement that generating better data on the scope of the HIV epidemic is essential.\nWithout assistment States Prive\nStates Work Independently to Track Levels of HIV Infection\nState and local public health officials are currently working together to develop accurate HIV\nsurveillance systems. Thirty-one States have chosen to implement name-based HIV surveillance\nsystems that build off their current surveillance systems. Because of privacy concerns, three\nStates (Maryland, Massachussetts, and Texas) have chosen to implement non-name based\nsystems, where HIV infected individuals would be reported to public health officials by a unique\ncode that cannot be traced rather than by name. Although there is a high level of interest in\ndeveloping non-name based surveillance systems, there is a significant cost associated with the\ndevelopment of these systems because there is no existing public health infrastructure to support\nthem.\nsig#s:\nPatin\nThe Advocate Community Favors Non-Name Based Surveillance Systems\nAdvocates have come out strongly in favor of non-name based HIV surveillance systems. There\nis considerable concern that mandatory name based reporting will discourage people from getting\ntested and seeking treatment. In addition, because people are living longer with asymptomatic\nHIV disease, public health officials would have the names of people with HIV on record for an\nextended period of time, increasing the possibility of confidentiality breaches. Advocates believe\nthat non-name based surveillance systems will reduce the fear of stigma and the loss of\nconfidentiality while enabling the collection of better data on HIV infection.\nInitial Evaluation of Non-Name Based Reporting Systems is Inconclusive\nInformation from CDC studies here.\nMovement Towards a National HIV Surveillance System\nNovembr.\nThe CDC has developed draft regulations that would require States to implement HIV\nsurveillance systems by April of 1999. As presently drafted, these regulations emphasize the\nimportance of State flexibility when developing a reporting system. They do not require any\nparticular method of surveillance and establish performance measures for both names based and\nnon-names based systems.\nPOLICY DESCRIPTION\nThe President has proposed a three part demonstration project to explore the issues surrounding\nnon-name based HIV surveillance.\n1.\nDeveloping New Surveillance Systems\nStates will be provided funding to develop and implement HIV surveillance systems that\nuse encryption and other non-name based methodologies to track the level of HIV\ninfection in their State. These systems will utilize \"privacy protection codes\" rather than\nthe names of individuals when forwarding data to the State Department of Health,\nensuring that only patients and health care providers have identifying information on the\nHIV status of individuals.\n2.\nLinking Infected Individuals with Critical Health Care and Social Support Services\nStates must enhance their current efforts to link infected individuals with critical health\ncare and social support services. Special outreach efforts to educate individuals about the\nnew privacy safeguards and the importance of early diagnosis and treatment should be\nundertaken. In addition, strategies to improve referral to primary care sources should be\nimplemented for those infected individuals being tested at publicly funded sites.\n3.\nEvaluating the New Surveillance Systems\nStates would be required to perform a technical evaluation of their new surveillance\nsystems that focused on rates of record duplication and lost or missing data. They would\nalso be required to evaluate the success of the outreach, education, and patient referral\nstrategies in promoting HIV testing and early entry of infected individuals into primary\ncare.\nBUDGET EFFECTS\nUnknown.\nADVAN7448\nT\nprivacy agenda\nD\nadvocate support\nIMPROVING HIV SURVEILLANCE SYSTEMS\nSummary: ENO italies.)\nThis proposal would fund a demonstration project providing States with funds to develop HIV\ndo\nsurveillance systems that utilize privacy protection codes rather than names based reporting.\nIned 1\nThese States would be required to apply their disease surveillance strategies in ways that link\ninfected individuals with critical health care and social support services. As a condition of\nthis?\nrecieving funds, States would also be required to evaluate their new surveillance systems.\nyes -\nBACKGROUND\nunderlined\nit's\n+\nBold\nNo\ngood\nBukets\n- Importance of Accurate HIV Surveillance Systems. In 1995, AIDS became the leading cause of\ndeath for all Americans aged 25-44. Over half a million American men, women and children\nhave been diagnosed with AIDS, and more than 300,000 have already died from this disease. It\nis vitally important to have an accurate national surveillance system in order to allocate limited\nresources, target and evaluate prevention efforts, and project the future of the epidemic.\nSurveillance Systems Are Outdated. Presently, all people diagnosed with AIDS are reported by\nname to State and local health departments. State officials then delete identifying information\nfrom the reports and forward them to the Centers for Disease Control (CDC) for compilation of\nnational data on the AIDS epidemic. At the beginning of the epidemic, this was a reliable way to\ndetermine the extent of infection nationwide, because people with HIV routinely developed\nAIDS within a very short time period. However, because of the success of new drug therapies,\npeople are living longer with asymptomatic HIV disease. Therefore, because the current method\nof tracking the AIDS epidemic is based solely on the end stages of disease progression, it is no\nlonger reliable. Health care organizations, AIDS advocates, and Federal, State, and local public\nhealth officials are all in agreement that generating better data on the scope of the HIV epidemic\nis essential.\nPresent State Surveillance Systems Raise Privacy Concerns. State and local public health\nofficials are currently working together to develop accurate HIV surveillance systems. Thirty-\none States have chosen to implement name-based HIV surveillance systems. Although this issue\nis still being debated, there is concern in both the public health and advocacy communities that\nname-based surveillance systems would discourage infected individuals from seeking testing and\ntreatment because of the fear of confidentiality breaches. In addition, because people are living\nlonger with asymptomatic HIV disease, public health officials would have the names of people\nwith HIV on record for an extended period of time, increasing the possibility of confidentiality\nbreaches. Although there is a high level of interest in developing non-name based surveillance\nsystems that include essential privacy protections, the significant cost associated with the\ndevelopment of these systems is discouraging for many States.\nto be released in\nMovement fowards a National HIV Surveillance System. The CDC has developed draft\nregulations that would require States to implement HIV surveillance systems by April of 1999.\nAs presently drafted, these regulations emphasize the importance of State flexibility when\ndeveloping a reporting system. They do not require any particular method of surveillance and but\nestablish performance measures for both names based and non-names based systems.\ncreate l\nPOLICY DESCRIPTION This proposal world establish a\nThe President has proposed a three part demonstration project to explore the issues surrounding\nnon-name based HIV surveillance.\n[Questions Competitive?\nHow many States?\nDeveloping New Surveillance Systems\nyear\n?\nAdmin-\nStates willipe provided funding to develop and implement HIV surveillance systems that\nistess\nuse encryption and other non-name based methodologies to track the level of HIV\ninfection in their State. These systems will would utilize \"privacy protection codes\" rather than\nthe names of individuals when forwarding data to the State Department of Health,\nensuring that only patients and health care providers have identifying information on the\nHIV status of individuals. Recent evaluations of existing non-name based surveillance\nsystems indicate that States have higher rates of missing data and may have difficulty\nconducting adequate follow-up with infected individuals in order to collect HIV risk\ninformation. States would need to adequately address these issues in their grant\nproposals.\n2).\nLinking Infected Individuals with Critical Health Care and Social Support Services\nStates must ehhance their current efforts to link infected individuals with critical health\ncare and social support services. Special outreach efforts to educate individuals about the\ncondition\nnew privacy safeguards and the importance of early diagnosis and treatment should be\nreceiving Federal\nundertaken. In addition, strategies to improve referral to primary care sources should be\nFunds\nimplemented for those infected individuals being tested at publicly funded sites.\nis\nEvaluating the New Surveillance Systems\nStates would be required to perform a technical evaluation of their new surveillance\nsystems that focused on rates of record duplication and lost or missing data. They would\nalso be required to evaluate the success of the outreach, education, and patient referral\nstrategies in promoting HIV testing and early entry of infected individuals into primary\ncare.\nPOLICY RATIONALE\nFunding a demonstration project that would assist States in the development and implementation\nof non-name based HIV surveillance systems would be advantageous for the following reasons:\nNon-name Based Surveillance Systems Provide Greater Privacy Protections\nAIDS advocates have come out strongly in favor of non-name based HIV surveillance systems. said\nSharten-\nearliar\nThere is considerable concern that mandatory name based reporting will discourage people from\ngetting tested and seeking treatment. Advocates believe that non-name based surveillance\nsystems will reduce the fear of stigma and the loss of confidentiality while enabling the\ncollection of better data on HIV infection.\nNon-name Based Surveillance Systems Protect the Hispanic Community\nThe AIDS epidemic disproportionately affects the Hispanic population. In 1997, the incidence of\nAIDS among Hispanics was 37.7 per 100,000 individuals, almost 4 times the incidence rate for\nwhites. There is a widespread fear among the Hispanic population that mandatory names\nreporting for HIV infection will eventually lead to deportation of infected individuals. This\nprovides a strong disincentive to request testing or receive care. The implementation of non-\nname based surveillance systems will help assure the Hispanic community that their infection\nstatus will not be used by State or Federal immigrantion agencies to discriminate against them\nwhen they apply for citizenship or naturalization.\nProvides a Test Case for National Unique Medical Identifiers\nThere was a great deal of concern when the Administration proposed to implement a national\nsystem of unique medical identifiers. We have since stated that we would not move to implement\nsuch a system until we have passed privacy protection legislation. However, implementing a\nnon-names based surveillance system to monitor the level of HIV infection differs significantly\nfrom the original Federal proposal. This system would be developed at State option for a limited\nsubset of individuals who would otherwise be identified by name to State public health agencies.\nIt is important to note, however, that if States are able to design non-name based surveillance\nsystems that are able to meet current public health needs and adequately protect the privacy of\nHIV infected individuals, they may provide a roadmap towards designing a portable medical\nrecord that uses unique medical identifiers.\nBUDGET EFFECTS\nUnknown."
}