The emperor has never looked better: The case for HIV reporting

AIDS and Public Policy Journal

Volumn 14, Issue 4, 1999, Pages 159-173

  Hanssens, Catherine A ^a  

^a Puerto Rican Leg Def Educ Fund   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

CONFIDENTIALITY; EPIDEMIC; HEALTH STATUS; HEALTH SURVEY; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; LEGAL ASPECT; PROPHYLAXIS; PUBLIC HEALTH SERVICE; REVIEW;

HEALTH CARE AND PUBLIC HEALTH;

AIDS SERODIAGNOSIS; ATTITUDE TO HEALTH; CENTERS FOR DISEASE CONTROL AND PREVENTION (U.S.); CONFIDENTIALITY; DATA INTERPRETATION, STATISTICAL; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HIV INFECTIONS; HUMANS; PATIENT ADVOCACY; POPULATION SURVEILLANCE; PRACTICE GUIDELINES; PUBLIC HEALTH PRACTICE; UNITED STATES;

EID: 0033285948     PISSN: 08873852     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Review

References (128)

1. CDC, "Guidelines for National Human Immunodeficiency Virus Case Surveillance, Including Monitoring for Human Immunodeficiency Virus Infection and Acquired Immunodeficiency Syndrome," Morbidity and Mortality Weekly Report 48, RR-13 (10 December 1999), 1-28; 〈www.cdc.gov/ epommwr/preview/mmwrhtml/rr4813al.htm〉.
2. At present, 33 states require reporting of all positive HIV test results by name, while six states and Washington, D.C., have adopted some form of unique identifier (UI), or alphanumeric code, to keep track of positive HIV results (Illinois, Connecticut - non-pediatric cases, Massachusetts, Maryland, Rhode Island, and Vermont). One state, Connecticut, requires name reporting of pediatric cases only; one recently adopted a system employing both names and unique identifiers (Oregon); and three additional states (California, Hawaii, and Kentucky) appear to be leaning toward HIV case reporting with unique identifiers.
3. R. Bayer, "HIV Testing and Reporting," Journal of the American Medical Association HIV/AIDS Information Center - Policy, March 1996, 〈www.ama-assn.org/special/hiv/ policy/testing.htm〉. Bayer does not define what he means by the need for "complete" data, nor does he cite a source or authority for his suggestion that there was broad support for AIDS reporting, or that such support explains the absence of wide-scale opposition to reporting.
4. CDC, "Public Opinion About Public Health - California and the United States, 1996," 47 Morbidity and Mortality Weekly Report 69 (6 February 1998).
5. See, for example, "Advocates Condemn States, National Push for Names Reporting," 17 March 1999, 〈www.lambdalegal.org/cgi-bin/pages/documents/ record?record-388〉 (press release announcing opposition to name reporting initiatives and consensus statement endorsed by nearly 100 organizations). In New York State, the testimony of a physician who operates an adolescent AIDS clinic for high-risk youth in Brooklyn fell on deaf ears, despite its urgency: [The NY name reporting/partner notification regulations] will do more harm than good in driving people most likely to be HIV infected away from the counseling and testing process. As far as the needs of adolescents at risk of being or becoming HIV infected are concerned, these regulations should be completely rethought. In particular, the issue of names HIV reporting and the mechanisms of mandatory partner notification will create an insurmountable barrier that will prevent providers working with high risk youth from being able to gain the trust required to engage them in the HIV counseling and testing process. J.M. Birnbaum, "Comments on the Proposed Regulations Implementing Article 21 Title III of the New York Public Health Law," submitted by J.M. Birnbaum, MD, MPH, Adolescent HIV Program, State University of New York Health Science Center at Brooklyn/Kings County Hospital Center, 8 April 1999; on file with the author.
6. See, for example, "Advocates Condemn States, National Push for Names Reporting," 17 March 1999, 〈www.lambdalegal.org/cgi-bin/pages/documents/ record?record-388〉 (press release announcing opposition to name reporting initiatives and consensus statement endorsed by nearly 100 organizations). In New York State, the testimony of a physician who operates an adolescent AIDS clinic for high-risk youth in Brooklyn fell on deaf ears, despite its urgency: [The NY name reporting/partner notification regulations] will do more harm than good in driving people most likely to be HIV infected away from the counseling and testing process. As far as the needs of adolescents at risk of being or becoming HIV infected are concerned, these regulations should be completely rethought. In particular, the issue of names HIV reporting and the mechanisms of mandatory partner notification will create an insurmountable barrier that will prevent providers working with high risk youth from being able to gain the trust required to engage them in the HIV counseling and testing process. J.M. Birnbaum, "Comments on the Proposed Regulations Implementing Article 21 Title III of the New York Public Health Law," submitted by J.M. Birnbaum, MD, MPH, Adolescent HIV Program, State University of New York Health Science Center at Brooklyn/Kings County Hospital Center, 8 April 1999; on file with the author.
7. "Advocates Condemn State, National Push for Names Reporting," ibid. At an April 1998 public meeting on HIV reporting in Washington, D.C., after approximately 100 individuals and representatives of local AIDS service organizations spoke against name reporting - with many opposing any system of reporting - John Ward, representing the CDC's HIV Surveillance Branch, said that the concerns voiced were consistent with those he had heard in forums he had attended around the country since 1997. L. Chibbaro, "Mayor Supports Unique Identifier," Washington Blade, 20 August 1999, 1.
8. "Advocates Condemn State, National Push for Names Reporting," ibid. At an April 1998 public meeting on HIV reporting in Washington, D.C., after approximately 100 individuals and representatives of local AIDS service organizations spoke against name reporting - with many opposing any system of reporting - John Ward, representing the CDC's HIV Surveillance Branch, said that the concerns voiced were consistent with those he had heard in forums he had attended around the country since 1997. L. Chibbaro, "Mayor Supports Unique Identifier," Washington Blade, 20 August 1999, 1.
9. CDC, "Guidelines for National HIV Case Surveillance," see note 1 above, p. 1.
10. See, for example, M. Johri et al., "New Approaches to HIV Surveillance: Means and Ends," in this issue of APPJ, (noting the polarization of HIV surveillance debate into "camps," one supporting name reporting, and one unique identifiers).
11. CDC, DHHS, Program Announcement 00005, "HIV/ AIDS Surveillance and HIV Incidence and HIV Prevalence Studies, Notice of Availability of Funds," 〈www/cdc/gov/ od/pgo/funding/00005.html, http://www/cdc/gov/od/pgo/ funding/00005NCS.html〉. Under this funding program, only a portion of about $6 million was made available for a limited number of state in-progress HIV incidence and prevalence surveys, which the CDC distinguishes in its program description from "core" HIV/AIDS surveillance (the balance of the $6 million supports laboratories performing the STARHS - Serological Testing Algorithm for Recent HIV Seroconversion - Assay).
12. The CDC's 1991 guidelines for the management of HIV-positive healthcare workers provide an apt example of the consequence of disconnecting policy from supporting science. In a bow to political pressures, the CDC rejected the overwhelming testimony of medical, infectious disease, and public health experts and adopted guidelines that permitted the restriction or removal of healthcare workers with HIV from practice, or the notification of their patients, in the event that they performed "exposure-prone" procedures. Then, as now, the CDC lacked any data that attempted to define what procedures were "exposure-prone," or data on how restrictions on HIV-positive healthcare workers would enhance patients' safety. CDC, "Recommendations for Preventing Transmission of Human Immunodeficiency Virus and Hepatitis B Virus to Patients During Exposure-Prone Invasive Procedures," Morbidity and Mortality Weekly Report 40 (1991): 1-9 (hereinafter "1991 Recommendations"). As the title indicates, the recommendations addressed infection with hepatitis B virus (HBV) as well; they noted that hepatitis is approximately 100 times as infectious as HIV, and developed a partial definition for "exposure-prone procedures" by referring to those procedures implicated in the transmission of HBV, not HIV. Ibid., pp. 3-4. The guidelines continue in force, despite the continuing lack of evidence that HIV-positive healthcare workers pose a real risk of transmission to their patients. See, for example, R.L. Chamberland et al., "Investigations of Patients of Health Care Workers Infected With HIV," Annals of Internal Medicine 122 (1995): 653-7, helpfully summarized in "AIDS Alert," American Health Care Consultants (May 1998): 50-1. The CDC guidelines have provided the foundation for most federal court decisions upholding the firing or demotion of HIV-positive healthcare workers, despite the absence of data that any of the affected professionals posed a measurable risk to patients' safety. See, for example, Estate of Mauro v. Borgess Medical Center, 137 F.3d 398 (6th Cir. 1998), cert. denied, 119 S.Ct. 51 (1998) (upholding the dismissal of an ADA discrimination suit and the firing of a surgical assistant with HIV because the possibility that he would have to put his finger near the open wound of a patient during surgery constituted an exposure prone procedure posing a "direct threat" to the patient); Waddell v. Valley Forge Dental Assoc., 1:99-CV-00262-CAP (ND Georgia 14 August 2000) (dismissing the ADA suit of a dental hygienist who challenged his proposed demotion and firing after employer learned of his HIV status; fact that Waddell holds sharp instruments, and has his fingers in patients' mouths during teeth cleaning, constitutes an "exposure prone" procedure under CDC guidelines and warrants his termination as a "direct threat" to patients).
13. The CDC's 1991 guidelines for the management of HIV-positive healthcare workers provide an apt example of the consequence of disconnecting policy from supporting science. In a bow to political pressures, the CDC rejected the overwhelming testimony of medical, infectious disease, and public health experts and adopted guidelines that permitted the restriction or removal of healthcare workers with HIV from practice, or the notification of their patients, in the event that they performed "exposure-prone" procedures. Then, as now, the CDC lacked any data that attempted to define what procedures were "exposure-prone," or data on how restrictions on HIV-positive healthcare workers would enhance patients' safety. CDC, "Recommendations for Preventing Transmission of Human Immunodeficiency Virus and Hepatitis B Virus to Patients During Exposure-Prone Invasive Procedures," Morbidity and Mortality Weekly Report 40 (1991): 1-9 (hereinafter "1991 Recommendations"). As the title indicates, the recommendations addressed infection with hepatitis B virus (HBV) as well; they noted that hepatitis is approximately 100 times as infectious as HIV, and developed a partial definition for "exposure-prone procedures" by referring to those procedures implicated in the transmission of HBV, not HIV. Ibid., pp. 3-4. The guidelines continue in force, despite the continuing lack of evidence that HIV-positive healthcare workers pose a real risk of transmission to their patients. See, for example, R.L. Chamberland et al., "Investigations of Patients of Health Care Workers Infected With HIV," Annals of Internal Medicine 122 (1995): 653-7, helpfully summarized in "AIDS Alert," American Health Care Consultants (May 1998): 50-1. The CDC guidelines have provided the foundation for most federal court decisions upholding the firing or demotion of HIV-positive healthcare workers, despite the absence of data that any of the affected professionals posed a measurable risk to patients' safety. See, for example, Estate of Mauro v. Borgess Medical Center, 137 F.3d 398 (6th Cir. 1998), cert. denied, 119 S.Ct. 51 (1998) (upholding the dismissal of an ADA discrimination suit and the firing of a surgical assistant with HIV because the possibility that he would have to put his finger near the open wound of a patient during surgery constituted an exposure prone procedure posing a "direct threat" to the patient); Waddell v. Valley Forge Dental Assoc., 1:99-CV-00262-CAP (ND Georgia 14 August 2000) (dismissing the ADA suit of a dental hygienist who challenged his proposed demotion and firing after employer learned of his HIV status; fact that Waddell holds sharp instruments, and has his fingers in patients' mouths during teeth cleaning, constitutes an "exposure prone" procedure under CDC guidelines and warrants his termination as a "direct threat" to patients).
14. The CDC's 1991 guidelines for the management of HIV-positive healthcare workers provide an apt example of the consequence of disconnecting policy from supporting science. In a bow to political pressures, the CDC rejected the overwhelming testimony of medical, infectious disease, and public health experts and adopted guidelines that permitted the restriction or removal of healthcare workers with HIV from practice, or the notification of their patients, in the event that they performed "exposure-prone" procedures. Then, as now, the CDC lacked any data that attempted to define what procedures were "exposure-prone," or data on how restrictions on HIV-positive healthcare workers would enhance patients' safety. CDC, "Recommendations for Preventing Transmission of Human Immunodeficiency Virus and Hepatitis B Virus to Patients During Exposure-Prone Invasive Procedures," Morbidity and Mortality Weekly Report 40 (1991): 1-9 (hereinafter "1991 Recommendations"). As the title indicates, the recommendations addressed infection with hepatitis B virus (HBV) as well; they noted that hepatitis is approximately 100 times as infectious as HIV, and developed a partial definition for "exposure-prone procedures" by referring to those procedures implicated in the transmission of HBV, not HIV. Ibid., pp. 3-4. The guidelines continue in force, despite the continuing lack of evidence that HIV-positive healthcare workers pose a real risk of transmission to their patients. See, for example, R.L. Chamberland et al., "Investigations of Patients of Health Care Workers Infected With HIV," Annals of Internal Medicine 122 (1995): 653-7, helpfully summarized in "AIDS Alert," American Health Care Consultants (May 1998): 50-1. The CDC guidelines have provided the foundation for most federal court decisions upholding the firing or demotion of HIV-positive healthcare workers, despite the absence of data that any of the affected professionals posed a measurable risk to patients' safety. See, for example, Estate of Mauro v. Borgess Medical Center, 137 F.3d 398 (6th Cir. 1998), cert. denied, 119 S.Ct. 51 (1998) (upholding the dismissal of an ADA discrimination suit and the firing of a surgical assistant with HIV because the possibility that he would have to put his finger near the open wound of a patient during surgery constituted an exposure prone procedure posing a "direct threat" to the patient); Waddell v. Valley Forge Dental Assoc., 1:99-CV-00262-CAP (ND Georgia 14 August 2000) (dismissing the ADA suit of a dental hygienist who challenged his proposed demotion and firing after employer learned of his HIV status; fact that Waddell holds sharp instruments, and has his fingers in patients' mouths during teeth cleaning, constitutes an "exposure prone" procedure under CDC guidelines and warrants his termination as a "direct threat" to patients).
15. The CDC's 1991 guidelines for the management of HIV-positive healthcare workers provide an apt example of the consequence of disconnecting policy from supporting science. In a bow to political pressures, the CDC rejected the overwhelming testimony of medical, infectious disease, and public health experts and adopted guidelines that permitted the restriction or removal of healthcare workers with HIV from practice, or the notification of their patients, in the event that they performed "exposure-prone" procedures. Then, as now, the CDC lacked any data that attempted to define what procedures were "exposure-prone," or data on how restrictions on HIV-positive healthcare workers would enhance patients' safety. CDC, "Recommendations for Preventing Transmission of Human Immunodeficiency Virus and Hepatitis B Virus to Patients During Exposure-Prone Invasive Procedures," Morbidity and Mortality Weekly Report 40 (1991): 1-9 (hereinafter "1991 Recommendations"). As the title indicates, the recommendations addressed infection with hepatitis B virus (HBV) as well; they noted that hepatitis is approximately 100 times as infectious as HIV, and developed a partial definition for "exposure-prone procedures" by referring to those procedures implicated in the transmission of HBV, not HIV. Ibid., pp. 3-4. The guidelines continue in force, despite the continuing lack of evidence that HIV-positive healthcare workers pose a real risk of transmission to their patients. See, for example, R.L. Chamberland et al., "Investigations of Patients of Health Care Workers Infected With HIV," Annals of Internal Medicine 122 (1995): 653-7, helpfully summarized in "AIDS Alert," American Health Care Consultants (May 1998): 50-1. The CDC guidelines have provided the foundation for most federal court decisions upholding the firing or demotion of HIV-positive healthcare workers, despite the absence of data that any of the affected professionals posed a measurable risk to patients' safety. See, for example, Estate of Mauro v. Borgess Medical Center, 137 F.3d 398 (6th Cir. 1998), cert. denied, 119 S.Ct. 51 (1998) (upholding the dismissal of an ADA discrimination suit and the firing of a surgical assistant with HIV because the possibility that he would have to put his finger near the open wound of a patient during surgery constituted an exposure prone procedure posing a "direct threat" to the patient); Waddell v. Valley Forge Dental Assoc., 1:99-CV-00262-CAP (ND Georgia 14 August 2000) (dismissing the ADA suit of a dental hygienist who challenged his proposed demotion and firing after employer learned of his HIV status; fact that Waddell holds sharp instruments, and has his fingers in patients' mouths during teeth cleaning, constitutes an "exposure prone" procedure under CDC guidelines and warrants his termination as a "direct threat" to patients).
16. CDC, "Draft Guidelines" see note 7 above, p. 1.
17. A. Novick, "HIV Surveillance: What's Hot, What's Not," AIDS & Public Policy Journal 13, no. 2 (Summer 1998): 51-2, p. 51. See also Johri et al., "New Approaches," in this issue of APPJ (concluding that HIV case reporting will not effectively provide information about incidence).
18. A. Novick, "HIV Surveillance: What's Hot, What's Not," AIDS & Public Policy Journal 13, no. 2 (Summer 1998): 51-2, p. 51. See also Johri et al., "New Approaches," in this issue of APPJ (concluding that HIV case reporting will not effectively provide information about incidence).
19. CDC, "Draft Guidelines," see note 7 above, p. 2.
20. See A.K. Nakashima et al., "Effect of HIV Reporting by Name on Use of HIV Testing in Publicly Funded Counseling and Testing Programs," cited in CDC "Guidelines," see note 1 above, p. 8.
21. See A.K. Nakashima et al., "Effect of HIV Reporting by Name on Use of HIV Testing in Publicly Funded Counseling and Testing Programs," cited in CDC "Guidelines," see note 1 above, p. 8.
22. For example, in Louisiana HIV tests can be performed without consent on sex crime arrestees; children in hospitals; blood, semen, and tissue donors; and any person who exposes police, healthcare workers of any kind, or emergency response personnel to blood or bodily fluid that poses "a risk of HIV infection." La. Rev. Stat. Ann. §§40:1062.1; 40:1299; 40:1300. In Nevada, persons charged with sex offenses and all state inmates are among those subject to mandatory testing. Nev. Rev. Stat. Ann. §§441A.320; 209.305. The four other states studied have adopted similar mandatory testing provisions.
23. This kind of survey format, restricting as it does the response of the interviewee to a specified choice of "correct" answers, is inherently flawed. S. Burris, "Driving the Epidemic Underground? A New Look at Law and the Social Risk of HIV Testing," AIDS & Public Policy Journal 12, no. 2 (Summer 1997): 66-78, p. 71, citing D.W. Lyter et al., "The HIV Antibody Test: Why Gay and Bisexual Men Want or Do Not Want to Know Their Results," Public Health Reports 102 (1987): 468-74. It must be noted, however, that a number of the surveys coming to the opposite conclusion relied on similar methodology. Ibid.
24. This kind of survey format, restricting as it does the response of the interviewee to a specified choice of "correct" answers, is inherently flawed. S. Burris, "Driving the Epidemic Underground? A New Look at Law and the Social Risk of HIV Testing," AIDS & Public Policy Journal 12, no. 2 (Summer 1997): 66-78, p. 71, citing D.W. Lyter et al., "The HIV Antibody Test: Why Gay and Bisexual Men Want or Do Not Want to Know Their Results," Public Health Reports 102 (1987): 468-74. It must be noted, however, that a number of the surveys coming to the opposite conclusion relied on similar methodology. Ibid.
25. This kind of survey format, restricting as it does the response of the interviewee to a specified choice of "correct" answers, is inherently flawed. S. Burris, "Driving the Epidemic Underground? A New Look at Law and the Social Risk of HIV Testing," AIDS & Public Policy Journal 12, no. 2 (Summer 1997): 66-78, p. 71, citing D.W. Lyter et al., "The HIV Antibody Test: Why Gay and Bisexual Men Want or Do Not Want to Know Their Results," Public Health Reports 102 (1987): 468-74. It must be noted, however, that a number of the surveys coming to the opposite conclusion relied on similar methodology. Ibid.
26. Many people may view the terms "confidential" and "anonymous" as roughly synonymous; in other contexts, such as confidential communication with a lawyer, therapist, or priest, "confidential" may be understood to mean that the information provided to that individual will not be shared with anyone else.
27. For example, G. Reed et al., "The Impact of Mandatory Name Reporting on HIV Testing and Treatment" (poster presentation at the 11th International Conference on AIDS, July 1996); American Civil Liberties Union (hereafter, ACLU), HIV Surveillance and Name Reporting - A Public Health Case for Protecting Civil Liberties (New York: ACLU, October 1997).
28. For example, G. Reed et al., "The Impact of Mandatory Name Reporting on HIV Testing and Treatment" (poster presentation at the 11th International Conference on AIDS, July 1996); American Civil Liberties Union (hereafter, ACLU), HIV Surveillance and Name Reporting - A Public Health Case for Protecting Civil Liberties (New York: ACLU, October 1997).
29. R. Steinbrook, "Battling HIV on Many Fronts," New England Journal of Medicine 227 (11 September 1997): 779-81.
30. Ibid., 779.
31. Ibid.
32. Ibid., 780. Steinbrook also notes that ADAP programs vary widely in their drug coverage and eligibility criteria, and serve less than one-third of the minimum estimate of those likely to be eligible. Ibid., citing the National Alliance of State Territorial AIDS Directors, AIDS Treatment Data Network, State AIDS Drugs Assistance Programs: A National Status Report on Access: A Technical Report (Menlo, Calif.: Henry J. Kaiser Family Foundation, 10 July 1997). See also M. Marchione, "Cost of AIDS Drug Program Doubles," Milwaukee Journal-Sentinel online, 11 January 1999 (reporting that many states have capped the amount they will pay for AIDS drugs under ADAP).
33. Ibid., 780. Steinbrook also notes that ADAP programs vary widely in their drug coverage and eligibility criteria, and serve less than one-third of the minimum estimate of those likely to be eligible. Ibid., citing the National Alliance of State Territorial AIDS Directors, AIDS Treatment Data Network, State AIDS Drugs Assistance Programs: A National Status Report on Access: A Technical Report (Menlo, Calif.: Henry J. Kaiser Family Foundation, 10 July 1997). See also M. Marchione, "Cost of AIDS Drug Program Doubles," Milwaukee Journal-Sentinel online, 11 January 1999 (reporting that many states have capped the amount they will pay for AIDS drugs under ADAP).
34. Ibid., 780. Steinbrook also notes that ADAP programs vary widely in their drug coverage and eligibility criteria, and serve less than one-third of the minimum estimate of those likely to be eligible. Ibid., citing the National Alliance of State Territorial AIDS Directors, AIDS Treatment Data Network, State AIDS Drugs Assistance Programs: A National Status Report on Access: A Technical Report (Menlo, Calif.: Henry J. Kaiser Family Foundation, 10 July 1997). See also M. Marchione, "Cost of AIDS Drug Program Doubles," Milwaukee Journal-Sentinel online, 11 January 1999 (reporting that many states have capped the amount they will pay for AIDS drugs under ADAP).
35. Ibid., 780. Steinbrook also notes that ADAP programs vary widely in their drug coverage and eligibility criteria, and serve less than one-third of the minimum estimate of those likely to be eligible. Ibid., citing the National Alliance of State Territorial AIDS Directors, AIDS Treatment Data Network, State AIDS Drugs Assistance Programs: A National Status Report on Access: A Technical Report (Menlo, Calif.: Henry J. Kaiser Family Foundation, 10 July 1997). See also M. Marchione, "Cost of AIDS Drug Program Doubles," Milwaukee Journal-Sentinel online, 11 January 1999 (reporting that many states have capped the amount they will pay for AIDS drugs under ADAP).
36. Steinbrook, "Battling HIV," see note 19 above, pp. 779-80.
37. M. Adams, C. Hanssens, and T. Lazarus, "Battling HIV on Many Fronts" (letter), New England Journal of Medicine 338 (13 January 1998): 198; M. Horberg and B. Schatz, "Battling HIV on Many Fronts" (letter), New England Journal of Medicine 338 (13 January 1998): 198.
38. M. Adams, C. Hanssens, and T. Lazarus, "Battling HIV on Many Fronts" (letter), New England Journal of Medicine 338 (13 January 1998): 198; M. Horberg and B. Schatz, "Battling HIV on Many Fronts" (letter), New England Journal of Medicine 338 (13 January 1998): 198.
39. R. Pear, "Medicaid May Be Extended to Early Treatment of AIDS," New York Times, 1 June 1997, A10.
40. See AIDS Alert, 73 (1 July 2000), 2000WL9065707 (identifying jurisdictions with syringe-exchange programs and describing the flagging government interest in adoption of such programs).
41. In New Jersey, 47 percent of the cumulative cases of AIDS reported were contracted through intravenous-drug use (IDU), as compared with 20 percent through men who had sex with men (MSM); the cumulative HIV report percentages for each risk group are 46 percent IDU and 21 percent MSM. New Jersey Department of Health and Senior Services, New Jersey HIV/AIDS Quarterly Newsletter, 30 June 2000 〈www.state.nj.us/health/aids/qtr0006.htm〉. See also D. Leusner, "AIDS Council: Whitman Stalling Nominees Over Needle Swap Issue," (New Jersey) Star Ledger, 7 September 2000.
42. In New Jersey, 47 percent of the cumulative cases of AIDS reported were contracted through intravenous-drug use (IDU), as compared with 20 percent through men who had sex with men (MSM); the cumulative HIV report percentages for each risk group are 46 percent IDU and 21 percent MSM. New Jersey Department of Health and Senior Services, New Jersey HIV/AIDS Quarterly Newsletter, 30 June 2000 〈www.state.nj.us/health/aids/qtr0006.htm〉. See also D. Leusner, "AIDS Council: Whitman Stalling Nominees Over Needle Swap Issue," (New Jersey) Star Ledger, 7 September 2000.
43. For example, the National Institutes of Health (NIH), Consensus Development Statement on Interventions to Prevent HIV Risk Behaviors (March 1997) concluded that needle-exchange programs "show a reduction in risk behaviors as high as 80 percent in IDUs, with estimates of a 30 percent or greater reduction of HIV, and that the preponderance of evidence shows either a decrease in injection drug use among participants or no changes in their current levels of drug use." See also AIDS Alert, see note 18 above (noting Governor Whitman's public sanctioning of the arrest of syringe-exchange volunteers; recognition by NIH and AMA that syringe-exchange programs have been successful in reducing HIV infection); see also J. McLaughlin, "Stubborn State Gives 'Tacit Approval' to AIDS Deaths" (editorial), (New Jersey) Star Ledger, 5 May 2000, 2000WL21304952.
44. Kaiser Family Foundation, Preliminary Findings from National Survey of Teens on HIV/AIDS, 2000 〈www.kff.org/ content/2000/3066〉.
45. Ibid.
46. See, for example, comments of Dr. Birnbaum, see note 5 above.
47. IOM, National Academy of Sciences, No Time to Lose: Getting More from HIV Prevention (2000) 〈www.nap.edu/ books/0309071372/html〉.
48. Ibid. This figure refers to the total amount spent on prevention activities by a number of agencies, including the Department of Health and Human Services (DHHS) and agencies within it, such as the CDC and the Food and Drug Administration (FDA), and others such as the Department of Defense (DOD), the Department of Veterans Affairs (VA), and the Departments of Labor (DOL) and Justice (DOJ). See S. Foster et al., Federal HIV/AIDS Spending: A Budget Chartbook (Washington, D.C.: Georgetown University Law Center, Henry J. Kaiser Family Foundation, August 1999). Obviously, this figure includes a number of activities related to prevention, such as the costs of HIV case reporting.
49. Ibid. This figure refers to the total amount spent on prevention activities by a number of agencies, including the Department of Health and Human Services (DHHS) and agencies within it, such as the CDC and the Food and Drug Administration (FDA), and others such as the Department of Defense (DOD), the Department of Veterans Affairs (VA), and the Departments of Labor (DOL) and Justice (DOJ). See S. Foster et al., Federal HIV/AIDS Spending: A Budget Chartbook (Washington, D.C.: Georgetown University Law Center, Henry J. Kaiser Family Foundation, August 1999). Obviously, this figure includes a number of activities related to prevention, such as the costs of HIV case reporting.
50. "Survey Reveals Continued Public Unease About HIV," AIDS Policy & Law 13 (7 August 1998), 1, 6.
51. Ibid.
52. Ibid., 6. For example, 55 percent of those surveyed said that HIV can be transmitted by a person with AIDS sharing a drinking glass, while 54 percent believed that they could contract HIV from a cough or sneeze; 41 percent believed HIV could be transmitted through a public toilet; 28 percent would not want to use a glass if it had been used by a person with AIDS several days earlier, even if the glass had been sterilized in the interim; 27 percent would not wear a sweater worn a single time by someone with AIDS, even if the sweater had been cleaned and repackaged; and 25 percent said that they would feel uncomfortable working in the same office as someone with AIDS.
53. Ibid., 1.
54. One notable exception to this silence was the testimony of Helene Gayle, MD, MPH, Director of the CDC's National Center for HIV, STD, and TB Prevention, in opposition to provisions of H.R. 4431, the HIV Partner Protection Act, which sought, in part, the elimination of anonymous HIV testing options across the country and mandatory universal partner notification. Testimony on HIV Partner Protection Act by H.D. Gayle, Director, National Center for HIV, STD, and TB Prevention, CDC, U.S. Department of Health and Human Services, before the House Committee on Commerce, Subcommittee on Health and Environment (29 September 2998), 〈http://waisgate.hhs.gov/cgi-bin/ waisgat...D+4473319810+14+0+0 &WAIS action=retrieve〉.
55. See, for example, Burris, "Driving the Epidemic Underground?" see note 16 above, p. 71: A generalized sense that officialdom or society at large is hostile to people with or at risk for HIV - drug users, gay men, people of color, or poor people - may be a very important, and neglected, influence on testing behavior. Research among gay men reports a mistrust of government and its motives, particularly a fear that over the long run, HIV test information could be subject to misuse. [citation omitted] Mistrust of health authorities and government "help" has also been strong among Black people, with notoriously good reason [citation omitted].
56. See, for example, EEOCv. Prevo's Family Market, 135 F.2d 1089 (6th Cir. 1998) (grocery store fired HIV-positive produce clerk); Bragdon v. Abbott, 524 U.S. 624 (1998) (dentist refused to fill cavity of HIV-positive patient). In a study of dental students, 53 percent of those surveyed said that they would not treat patients with HIV if they had a choice. E.S. Solomon et al., "Issues in the Dental Care Management of Patients with Bloodborne Infectious Diseases: An Opinion Survey of Dental School Seniors," Journal of Dental Education 55 (1991): 594; S. Burris, "Dental Discrimination Against the HIV-Infected: Empirical Data, Law, and Public Policy," Yale Journal on Regulation 13 (1996): 1, 11-15. A survey of 951 neonatologists nationwide found that many would withhold costly medical treatments from babies born to HIV-positive mothers, even if they had no idea whether the baby was actually infected with HIV. "In Brief...HIV Babies," AIDS Policy & Law 10 (1995). In another study, almost half of those physicians surveyed reported an unwillingness to treat HIV-positive patients. C. Lewis and M.D. Montgomery, "Primary Care Physicians' Refusal to Care for Patients Infected with HIV," Western Journal of Medicine 36 (1992): 156; see also F. Christian, Jr. et al., "Open Heart Survey in an HIV-Positive Patient," AIDS Patient Care and STDs 10 (1996): 210-11 (discussing "a reluctance among surgeons and especially cardiothoracic surgeons to operate on HIV-positive patients"); see also L.O. Gostin and D.W. Webber, "The AIDS Litigation Project: HIV/AIDS in the Courts in the 1990s, Part 2," AIDS & Public Policy Journal 13, no. 1 (Spring 1998): 3-19 (providing a comprehensive compilation of HIV discrimination cases).
57. See, for example, EEOCv. Prevo's Family Market, 135 F.2d 1089 (6th Cir. 1998) (grocery store fired HIV-positive produce clerk); Bragdon v. Abbott, 524 U.S. 624 (1998) (dentist refused to fill cavity of HIV-positive patient). In a study of dental students, 53 percent of those surveyed said that they would not treat patients with HIV if they had a choice. E.S. Solomon et al., "Issues in the Dental Care Management of Patients with Bloodborne Infectious Diseases: An Opinion Survey of Dental School Seniors," Journal of Dental Education 55 (1991): 594; S. Burris, "Dental Discrimination Against the HIV-Infected: Empirical Data, Law, and Public Policy," Yale Journal on Regulation 13 (1996): 1, 11-15. A survey of 951 neonatologists nationwide found that many would withhold costly medical treatments from babies born to HIV-positive mothers, even if they had no idea whether the baby was actually infected with HIV. "In Brief...HIV Babies," AIDS Policy & Law 10 (1995). In another study, almost half of those physicians surveyed reported an unwillingness to treat HIV-positive patients. C. Lewis and M.D. Montgomery, "Primary Care Physicians' Refusal to Care for Patients Infected with HIV," Western Journal of Medicine 36 (1992): 156; see also F. Christian, Jr. et al., "Open Heart Survey in an HIV-Positive Patient," AIDS Patient Care and STDs 10 (1996): 210-11 (discussing "a reluctance among surgeons and especially cardiothoracic surgeons to operate on HIV-positive patients"); see also L.O. Gostin and D.W. Webber, "The AIDS Litigation Project: HIV/AIDS in the Courts in the 1990s, Part 2," AIDS & Public Policy Journal 13, no. 1 (Spring 1998): 3-19 (providing a comprehensive compilation of HIV discrimination cases).
58. See, for example, EEOCv. Prevo's Family Market, 135 F.2d 1089 (6th Cir. 1998) (grocery store fired HIV-positive produce clerk); Bragdon v. Abbott, 524 U.S. 624 (1998) (dentist refused to fill cavity of HIV-positive patient). In a study of dental students, 53 percent of those surveyed said that they would not treat patients with HIV if they had a choice. E.S. Solomon et al., "Issues in the Dental Care Management of Patients with Bloodborne Infectious Diseases: An Opinion Survey of Dental School Seniors," Journal of Dental Education 55 (1991): 594; S. Burris, "Dental Discrimination Against the HIV-Infected: Empirical Data, Law, and Public Policy," Yale Journal on Regulation 13 (1996): 1, 11-15. A survey of 951 neonatologists nationwide found that many would withhold costly medical treatments from babies born to HIV-positive mothers, even if they had no idea whether the baby was actually infected with HIV. "In Brief...HIV Babies," AIDS Policy & Law 10 (1995). In another study, almost half of those physicians surveyed reported an unwillingness to treat HIV-positive patients. C. Lewis and M.D. Montgomery, "Primary Care Physicians' Refusal to Care for Patients Infected with HIV," Western Journal of Medicine 36 (1992): 156; see also F. Christian, Jr. et al., "Open Heart Survey in an HIV-Positive Patient," AIDS Patient Care and STDs 10 (1996): 210-11 (discussing "a reluctance among surgeons and especially cardiothoracic surgeons to operate on HIV-positive patients"); see also L.O. Gostin and D.W. Webber, "The AIDS Litigation Project: HIV/AIDS in the Courts in the 1990s, Part 2," AIDS & Public Policy Journal 13, no. 1 (Spring 1998): 3-19 (providing a comprehensive compilation of HIV discrimination cases).
59. See, for example, EEOCv. Prevo's Family Market, 135 F.2d 1089 (6th Cir. 1998) (grocery store fired HIV-positive produce clerk); Bragdon v. Abbott, 524 U.S. 624 (1998) (dentist refused to fill cavity of HIV-positive patient). In a study of dental students, 53 percent of those surveyed said that they would not treat patients with HIV if they had a choice. E.S. Solomon et al., "Issues in the Dental Care Management of Patients with Bloodborne Infectious Diseases: An Opinion Survey of Dental School Seniors," Journal of Dental Education 55 (1991): 594; S. Burris, "Dental Discrimination Against the HIV-Infected: Empirical Data, Law, and Public Policy," Yale Journal on Regulation 13 (1996): 1, 11-15. A survey of 951 neonatologists nationwide found that many would withhold costly medical treatments from babies born to HIV-positive mothers, even if they had no idea whether the baby was actually infected with HIV. "In Brief...HIV Babies," AIDS Policy & Law 10 (1995). In another study, almost half of those physicians surveyed reported an unwillingness to treat HIV-positive patients. C. Lewis and M.D. Montgomery, "Primary Care Physicians' Refusal to Care for Patients Infected with HIV," Western Journal of Medicine 36 (1992): 156; see also F. Christian, Jr. et al., "Open Heart Survey in an HIV-Positive Patient," AIDS Patient Care and STDs 10 (1996): 210-11 (discussing "a reluctance among surgeons and especially cardiothoracic surgeons to operate on HIV-positive patients"); see also L.O. Gostin and D.W. Webber, "The AIDS Litigation Project: HIV/AIDS in the Courts in the 1990s, Part 2," AIDS & Public Policy Journal 13, no. 1 (Spring 1998): 3-19 (providing a comprehensive compilation of HIV discrimination cases).
60. See, for example, EEOCv. Prevo's Family Market, 135 F.2d 1089 (6th Cir. 1998) (grocery store fired HIV-positive produce clerk); Bragdon v. Abbott, 524 U.S. 624 (1998) (dentist refused to fill cavity of HIV-positive patient). In a study of dental students, 53 percent of those surveyed said that they would not treat patients with HIV if they had a choice. E.S. Solomon et al., "Issues in the Dental Care Management of Patients with Bloodborne Infectious Diseases: An Opinion Survey of Dental School Seniors," Journal of Dental Education 55 (1991): 594; S. Burris, "Dental Discrimination Against the HIV-Infected: Empirical Data, Law, and Public Policy," Yale Journal on Regulation 13 (1996): 1, 11-15. A survey of 951 neonatologists nationwide found that many would withhold costly medical treatments from babies born to HIV-positive mothers, even if they had no idea whether the baby was actually infected with HIV. "In Brief...HIV Babies," AIDS Policy & Law 10 (1995). In another study, almost half of those physicians surveyed reported an unwillingness to treat HIV-positive patients. C. Lewis and M.D. Montgomery, "Primary Care Physicians' Refusal to Care for Patients Infected with HIV," Western Journal of Medicine 36 (1992): 156; see also F. Christian, Jr. et al., "Open Heart Survey in an HIV-Positive Patient," AIDS Patient Care and STDs 10 (1996): 210-11 (discussing "a reluctance among surgeons and especially cardiothoracic surgeons to operate on HIV-positive patients"); see also L.O. Gostin and D.W. Webber, "The AIDS Litigation Project: HIV/AIDS in the Courts in the 1990s, Part 2," AIDS & Public Policy Journal 13, no. 1 (Spring 1998): 3-19 (providing a comprehensive compilation of HIV discrimination cases).
61. See, for example, EEOCv. Prevo's Family Market, 135 F.2d 1089 (6th Cir. 1998) (grocery store fired HIV-positive produce clerk); Bragdon v. Abbott, 524 U.S. 624 (1998) (dentist refused to fill cavity of HIV-positive patient). In a study of dental students, 53 percent of those surveyed said that they would not treat patients with HIV if they had a choice. E.S. Solomon et al., "Issues in the Dental Care Management of Patients with Bloodborne Infectious Diseases: An Opinion Survey of Dental School Seniors," Journal of Dental Education 55 (1991): 594; S. Burris, "Dental Discrimination Against the HIV-Infected: Empirical Data, Law, and Public Policy," Yale Journal on Regulation 13 (1996): 1, 11-15. A survey of 951 neonatologists nationwide found that many would withhold costly medical treatments from babies born to HIV-positive mothers, even if they had no idea whether the baby was actually infected with HIV. "In Brief...HIV Babies," AIDS Policy & Law 10 (1995). In another study, almost half of those physicians surveyed reported an unwillingness to treat HIV-positive patients. C. Lewis and M.D. Montgomery, "Primary Care Physicians' Refusal to Care for Patients Infected with HIV," Western Journal of Medicine 36 (1992): 156; see also F. Christian, Jr. et al., "Open Heart Survey in an HIV-Positive Patient," AIDS Patient Care and STDs 10 (1996): 210-11 (discussing "a reluctance among surgeons and especially cardiothoracic surgeons to operate on HIV-positive patients"); see also L.O. Gostin and D.W. Webber, "The AIDS Litigation Project: HIV/AIDS in the Courts in the 1990s, Part 2," AIDS & Public Policy Journal 13, no. 1 (Spring 1998): 3-19 (providing a comprehensive compilation of HIV discrimination cases).
62. See for example, Doe v. Mutual of Omaha Insurance Co., 179 F.3d 557 (7th Cir. 1999), cert. denied 145 L.Ed.2d 714, 68 U.S.L.W. 3327 (10 January 2000), 120 S.Ct. 845 (2000) (upholding insurer's practice of limiting benefits for AIDS-related care to a fraction of that provided to other medical conditions). The addition of a recent decision from the relatively liberal Ninth Circuit Court of Appeals to the federal appeals courts rejecting ADA cases against insurers who discriminate has seriously eroded the possible use of the ADA's Title III (governing public accommodations) to successfully challenge disability-based discrimination in insurance policies in most jurisdictions. See Chabner v. United of Omaha Life Insurance Co., 2000WL1276794 (11 September 2000).
63. See Lambda Legal Defense & Education Fund, "State Laws Criminalizing HIV Transmission" (chart), updated June 2000 〈www.lambdalegal.org〉.
64. The National AIDS Strategy (Washington, D.C.: Office of National AIDS Policy 1997), 10 (acknowledging that fear of discrimination and stigma deters testing and demanding that testing not compromise confidentiality).
65. See D.W. Webber and L.O. Gostin, "Discrimination Based on HIV/AIDS and Other Health Conditions: 'Disability' as Defined under Federal and State Law," Journal of Helaht Care Law & Policy 3 (2000): 266-329, p. 285 (noting the "significant barriers" for plaintiffs with HIV discrimination claims under the ADA).
66. Ibid., 304-5 (concluding that less than half of the population of individuals with AIDS are in jurisdictions with protections that are "clearly established," while approximately 6 percent of that population are in jurisdictions that significantly limit or have no protection for HIV infection in major areas; the remaining individuals are in jurisdictions that pose much the same "significant barriers" as are faced under the ADA).
67. L.O. Gostin et al., "The Public Health Information Infrastructure," Journal of the American Medical Association 275 (1996): 1921, 1924.
68. Ibid., 1925.
69. A. Simones, "The Right to Suffer as Individuals or the Necessity to Survive as a Society: HIV Status and the Constitutional Right to Privacy," University of Missouri - Kansas City Law Review 68 (1999): 195, citing A. Nossiter, "Man Knowingly Exposed 62 Women to AIDS Virus," New York Times, 13 November 1997, B.1; see also L. Kennedy, "The Miseducation of Nushawn Williams," POZ (August 2000): 38-43, 63.
70. A. Simones, "The Right to Suffer as Individuals or the Necessity to Survive as a Society: HIV Status and the Constitutional Right to Privacy," University of Missouri - Kansas City Law Review 68 (1999): 195, citing A. Nossiter, "Man Knowingly Exposed 62 Women to AIDS Virus," New York Times, 13 November 1997, B.1; see also L. Kennedy, "The Miseducation of Nushawn Williams," POZ (August 2000): 38-43, 63.
71. A. Simones, "The Right to Suffer as Individuals or the Necessity to Survive as a Society: HIV Status and the Constitutional Right to Privacy," University of Missouri - Kansas City Law Review 68 (1999): 195, citing A. Nossiter, "Man Knowingly Exposed 62 Women to AIDS Virus," New York Times, 13 November 1997, B.1; see also L. Kennedy, "The Miseducation of Nushawn Williams," POZ (August 2000): 38-43, 63.
72. For example, a grand jury in Virginia indicted two sex workers for attempted murder because they allegedly were having unprotected sexual intercourse. The Virginia State Attorney General ordered this arrest after obtaining the women's HIV records from the local health department. The charges were dropped after witnesses against the women perjured themselves. A. Forbes, "'Names' Versus 'Unique Identifiers': the 'How' of HIV Case Reporting," SIECUS Report (February/March 1998): 4.
73. AIDS Foundation of Chicago, Action Bulletin 11, no. 2 (April 1998): 3.
74. On a national level, DHHS Secretary Donna Shalala recommended that proposed medical record privacy law allow police and other law enforcement officials to have virtually unlimited access on request to all private medical records. "Confidentiality of Individually-Identifiable Health Information, Recommendations of the Secretary of Health and Human Services, Pursuant to Section 264 of the Health Insurance Portability and Accountability Act of 1996, Submitted to The Committee on Labor and Human Resources and the Committee on Finance of the Senate and The Committee on Commerce and the Committee on Ways and Means of the House of Representatives, 11 September 1997" 〈http:// aspe.os.dhhs.gov/admnsimp/pvcrec0.htm〉.
75. Illinois Public Act 87-763, codified at 410 Ill. Comp. Stat. 325/5.5.
76. See D.N. Klaucke, et al., "Guidelines for Evaluating Surveillance Systems," Morbidity & Mortality Weekly Report 37, S-5 (6 May 1988): 1-18, p. 6 (epidemiologic surveillance information "is used for planning, implementing, and evaluating public health interventions and programs. Surveillance data are used both to determine the need for public health action and to assess the effectiveness of programs").
77. See, for example, E.J. Fordyce et al., "Mandatory Reporting of Human Immunodeficiency Virus Testing Would Deter Blacks and Hispanics from Being Tested," Journal of the American Medical Association 262 (1989): 349 (22 percent of African-American and Hispanic participants would not test if their results were reportable to public health officials); D. Hirano et al., "Anonymous HIV Testing: The Impact of Availability on Demand in Arizona," American Journal of Public Health 84 (1994): 2008 (name reporting and fear of discrimination discourages men who have sex with men from HIV testing.); P. Mayer, "Confidentiality in HIV Testing Remains," WebMD Medical News 〈http://my.webmd.com/content/ article/1728.50477〉.
78. See, for example, E.J. Fordyce et al., "Mandatory Reporting of Human Immunodeficiency Virus Testing Would Deter Blacks and Hispanics from Being Tested," Journal of the American Medical Association 262 (1989): 349 (22 percent of African-American and Hispanic participants would not test if their results were reportable to public health officials); D. Hirano et al., "Anonymous HIV Testing: The Impact of Availability on Demand in Arizona," American Journal of Public Health 84 (1994): 2008 (name reporting and fear of discrimination discourages men who have sex with men from HIV testing.); P. Mayer, "Confidentiality in HIV Testing Remains," WebMD Medical News 〈http://my.webmd.com/content/ article/1728.50477〉.
79. See, for example, E.J. Fordyce et al., "Mandatory Reporting of Human Immunodeficiency Virus Testing Would Deter Blacks and Hispanics from Being Tested," Journal of the American Medical Association 262 (1989): 349 (22 percent of African-American and Hispanic participants would not test if their results were reportable to public health officials); D. Hirano et al., "Anonymous HIV Testing: The Impact of Availability on Demand in Arizona," American Journal of Public Health 84 (1994): 2008 (name reporting and fear of discrimination discourages men who have sex with men from HIV testing.); P. Mayer, "Confidentiality in HIV Testing Remains," WebMD Medical News 〈http://my.webmd.com/content/ article/1728.50477〉.
80. Stansbury Associates, Survey of Latino Attitudes to HIV Surveillance Case Reporting, a study conducted for the Latino Commission on AIDS in December 1997; on file with the author.
81. CDC, "HIV Testing among Populations at Risk for HIV Infection - Nine States, November 1995-December 1996," Morbidity & Mortality Weekly Report 47 (25 December 1998): 1086-91.
82. J. Levi, "Rethinking HIV Counseling and Testing," AIDS and Public Policy Journal 11, no. 4 (Winter 1996): 164.
83. Illinois law, typical of most state laws in this regard, requires an explanation regarding the disclosure of test results prior to obtaining written informed consent to perform an HIV test. See note 52 above.
84. The CDC has acknowledged that a participant's "stated intent to test may not match actual behavior," and that participants "may underestimate concern about reporting." Excerpts from a CDC slide presentation on the HITS and APS Survey, see note 56 above.
85. S. Landry, "AIDS List is Out: State Investigating Breach," St. Petersburg Times, 20 September 1996, I-A, 10-A.
86. M. Iacobbo, "No Names Please," Providence Phoenix, 13 May 1994, 2.
87. ACLU, see note 18 above.
88. Under current Medicaid policy, with the exception of eligible low-income children, a person with HIV not only must meet state income and resources criteria, but also must become sick and disabled in order to be eligible for benefits, even under states' Medicaid "medically needy" programs. U.S. DHHS, Health Care Financing Administration (HCFA), Medicaid Eligibility,
89. IOM, No Time to Lose, see note 32 above, p. 11.
90. Ibid., 13. See also Johri et al., "New Approaches," in this issue of APPJ.
91. Ibid., 13. See also Johri et al., "New Approaches," in this issue of APPJ.
92. Ibid.
93. G.N. Colfax and A.B. Bindman, "Health Benefits and Risks of Reporting HIV-Infected Individuals by Name," American Journal of Public Health 88 (1998): 876-9.
94. CDC, HITS and APS Survey, see note 56 above.
95. See Forbes, "'Names' Versus 'Unique Identifiers'," see note 49 above.
96. Ibid.
97. D.H. Osmond et al., "Name-Based Surveillance and Public Health Interventions for Persons with HIV Infections: Multistate Evaluation of Surveillance for HIV Study Group," Annals of Internal Medicine 131 (1999): 775-9.
98. A. Bindman et al., "Multistate Evaluation of Anonymous HIV Testing and Access to Medical Care," Journal of the American Medical Association 280 (28 October 1998): 1416.
99. CDC, HITS and APS Surveys, see note 56 above; I.H. Picciotto et al., "HIV Test-Seeking Before and After the Restriction of Anonymous Testing in North Carolina," American Journal of Public Health 86 (1996): 1146, 1148.
100. CDC, HITS and APS Surveys, see note 56 above; I.H. Picciotto et al., "HIV Test-Seeking Before and After the Restriction of Anonymous Testing in North Carolina," American Journal of Public Health 86 (1996): 1146, 1148.
101. Forbes, "'Names' Versus 'Unique Identifiers'," see note 49 above, p. 5 (reviewing the results of the HITS and APS Surveys, see note 56 above).
102. Forbes, "'Names' Versus 'Unique Identifiers'," see note 49 above, p. 5 (reviewing the results of the HITS and APS Surveys, see note 56 above).
103. S. Crystal, "AIDS Contact Notification: Initial Program Results in New Jersey," AIDS Education & Prevention 2, no. 4 (1990): 284; K.H. Rothberg et al., "Domestic Violence and Partner Notification: Implications for Treatment and Counseling of Women with HIV," Journal of the American Medical Association 50, no. 3 (1995): 87. According to reports published in the magazine POZ, Amanda Carlson-Bey and her two-year-old son were brutally slain after she disclosed her HIV status to her partner, Michael Charles Stewart. "Death by Disclosure," POZ (March 1999), 26.
104. S. Crystal, "AIDS Contact Notification: Initial Program Results in New Jersey," AIDS Education & Prevention 2, no. 4 (1990): 284; K.H. Rothberg et al., "Domestic Violence and Partner Notification: Implications for Treatment and Counseling of Women with HIV," Journal of the American Medical Association 50, no. 3 (1995): 87. According to reports published in the magazine POZ, Amanda Carlson-Bey and her two-year-old son were brutally slain after she disclosed her HIV status to her partner, Michael Charles Stewart. "Death by Disclosure," POZ (March 1999), 26.
105. S. Crystal, "AIDS Contact Notification: Initial Program Results in New Jersey," AIDS Education & Prevention 2, no. 4 (1990): 284; K.H. Rothberg et al., "Domestic Violence and Partner Notification: Implications for Treatment and Counseling of Women with HIV," Journal of the American Medical Association 50, no. 3 (1995): 87. According to reports published in the magazine POZ, Amanda Carlson-Bey and her two-year-old son were brutally slain after she disclosed her HIV status to her partner, Michael Charles Stewart. "Death by Disclosure," POZ (March 1999), 26.
106. Ibid., 7; see ACLU, The Maryland Lesson: Conducting Effective HIV Surveillance with Unique Identifiers (New York: ACLU, December 1997), an interview with Liza Solomon, Director of the Maryland AIDS Administration, p. 9. "Maryland has not received funds from the Centers for Disease Control to implement its HIV surveillance system. Maryland requested funds to support this program in our 1995, 1996, and 1997 surveillance cooperative agreement. All requests were denied. Maryland and Texas did receive funds from the CDC to evaluate the UI program."
107. Ibid., 7; see ACLU, The Maryland Lesson: Conducting Effective HIV Surveillance with Unique Identifiers (New York: ACLU, December 1997), an interview with Liza Solomon, Director of the Maryland AIDS Administration, p. 9. "Maryland has not received funds from the Centers for Disease Control to implement its HIV surveillance system. Maryland requested funds to support this program in our 1995, 1996, and 1997 surveillance cooperative agreement. All requests were denied. Maryland and Texas did receive funds from the CDC to evaluate the UI program."
108. Ibid.
109. Your Social Security Number: How Secure Is It? (San Diego, Calif.: Privacy Rights Clearinghouse, 1997) (Social Security numbers are the most frequently used record-keeping numbers in the U.S., and their easy accessibility to large numbers of people has resulted in increased fraud).
110. Maryland reported 84 percent completeness for all data elements except Social Security number. Forbes, "'Names' Versus 'Unique Identifiers'," see note 49 above, p. 7. Although it is rarely mentioned, name-based reporting has produced incomplete reporting of test results: names are omitted, duplicated, or erroneously entered into name-based registries, and there is considerable use of pseudonyms by people seeking HIV testing.
111. New Jersey Department of Health and Senior Services, New Jersey HIV/AIDS Quarterly Newsletter, 30 June 2000.
112. New Jersey Department of Health and Senior Services, New Jersey HIV/AIDS Quarterly Newsletter, 30 June 1997 〈www.state.nj.us/health/aids/976pg8.htm〉.
113. Forbes, "'Names' Versus 'Unique Identifiers'," see note 49 above, p. 7.
114. Novick, "HIV Surveillance," see note 12 above, p. 52. The CDC "Guidelines for National HIV Case Surveillance" state, "Through follow-up with providers, the HIV/ AIDS surveillance system has provided an effective means to identify rare or unusual modes of HIV transmission and infection with rare strains of HIV and to improve the prevention of HIV-related opportunistic illnesses." CDC "Guidelines for National HIV Case Surveillance," see note 1 above, p. 20. In support, the Guidelines cite in part a study of rare strains of HIV conducted in Los Angeles County, where there is no HIV case surveillance system, and a report into the investigation of the Acer case, the dentist suspected of infecting several of his patients, which again did not hinge on the existence of an HIV-test reporting system.
115. Novick, "HIV Surveillance," see note 12 above, p. 52. The CDC "Guidelines for National HIV Case Surveillance" state, "Through follow-up with providers, the HIV/ AIDS surveillance system has provided an effective means to identify rare or unusual modes of HIV transmission and infection with rare strains of HIV and to improve the prevention of HIV-related opportunistic illnesses." CDC "Guidelines for National HIV Case Surveillance," see note 1 above, p. 20. In support, the Guidelines cite in part a study of rare strains of HIV conducted in Los Angeles County, where there is no HIV case surveillance system, and a report into the investigation of the Acer case, the dentist suspected of infecting several of his patients, which again did not hinge on the existence of an HIV-test reporting system.
116. Novick, "HIV Surveillance," see note 12 above, p. 52. The CDC "Guidelines for National HIV Case Surveillance" state, "Through follow-up with providers, the HIV/ AIDS surveillance system has provided an effective means to identify rare or unusual modes of HIV transmission and infection with rare strains of HIV and to improve the prevention of HIV-related opportunistic illnesses." CDC "Guidelines for National HIV Case Surveillance," see note 1 above, p. 20. In support, the Guidelines cite in part a study of rare strains of HIV conducted in Los Angeles County, where there is no HIV case surveillance system, and a report into the investigation of the Acer case, the dentist suspected of infecting several of his patients, which again did not hinge on the existence of an HIV-test reporting system.
117. Ibid., notes 102-6.
118. See Johri et al., "New Approaches," in this issue of APPJ.
119. Gay Men's Health Crisis, "HIV Treatment and Diagnosis in the United States," Treatment Issues 13 (May/June 1999) 〈wysiwyg://62/http://www.aegis.com/pubs/gmhc/ 1999/GM130501.html〉, citing an unpublished survey by F. Hecht, "AIDS Patient Survey," a federally funded study of 2,801 people with AIDS across the country, which found that the time from HIV testing to AIDS diagnosis ranged from two years to less than one year; 20 percent of those surveyed had received their HIV diagnosis and their AIDS diagnosis at the same time; most of those surveyed had been infected more than five years before being tested
120. Gay Men's Health Crisis, "HIV Treatment and Diagnosis in the United States," Treatment Issues 13 (May/June 1999) 〈wysiwyg://62/http://www.aegis.com/pubs/gmhc/ 1999/GM130501.html〉, citing an unpublished survey by F. Hecht, "AIDS Patient Survey," a federally funded study of 2,801 people with AIDS across the country, which found that the time from HIV testing to AIDS diagnosis ranged from two years to less than one year; 20 percent of those surveyed had received their HIV diagnosis and their AIDS diagnosis at the same time; most of those surveyed had been infected more than five years before being tested
121. Illinois law, for example, expressly allows this form of surveillance. 410 Ill. Comp. Stat. 305/8.
122. See Novick, "HIV Surveillance," see note 12 above, p. 53 - citing R.S. Jansen et al., "Diagnosis of Early HIV Infection Using A Dual Enzyme Immunoassay Antibody Testing Strategy for HIV Incidence Estimates, Clinical Research, and Public Health"; R. Brookmeyer et al., "The AIDS Epidemic in India: A New Method for Estimating Current Human Immunodeficiency Virus (HIV) Incidence Rates," American Journal of Epidemiology 142 (1995): 709; R. Brookmeyer and T.C. Quinn, "Estimates of Current Human Immunodeficiency Virus Using Early Diagnostic Tests," American Journal of Epidemiology 141 (1995): 166; E.H. Kaplan, "HIV Surveillance for HIV Prevention: Some Preliminary Ideas, Center for Interdisciplinary Research on AIDS," (unpublished working paper, 1998, Yale University, New Haven, Conn.).
123. See Novick, "HIV Surveillance," see note 12 above, p. 53 - citing R.S. Jansen et al., "Diagnosis of Early HIV Infection Using A Dual Enzyme Immunoassay Antibody Testing Strategy for HIV Incidence Estimates, Clinical Research, and Public Health"; R. Brookmeyer et al., "The AIDS Epidemic in India: A New Method for Estimating Current Human Immunodeficiency Virus (HIV) Incidence Rates," American Journal of Epidemiology 142 (1995): 709; R. Brookmeyer and T.C. Quinn, "Estimates of Current Human Immunodeficiency Virus Using Early Diagnostic Tests," American Journal of Epidemiology 141 (1995): 166; E.H. Kaplan, "HIV Surveillance for HIV Prevention: Some Preliminary Ideas, Center for Interdisciplinary Research on AIDS," (unpublished working paper, 1998, Yale University, New Haven, Conn.).
124. See Novick, "HIV Surveillance," see note 12 above, p. 53 - citing R.S. Jansen et al., "Diagnosis of Early HIV Infection Using A Dual Enzyme Immunoassay Antibody Testing Strategy for HIV Incidence Estimates, Clinical Research, and Public Health"; R. Brookmeyer et al., "The AIDS Epidemic in India: A New Method for Estimating Current Human Immunodeficiency Virus (HIV) Incidence Rates," American Journal of Epidemiology 142 (1995): 709; R. Brookmeyer and T.C. Quinn, "Estimates of Current Human Immunodeficiency Virus Using Early Diagnostic Tests," American Journal of Epidemiology 141 (1995): 166; E.H. Kaplan, "HIV Surveillance for HIV Prevention: Some Preliminary Ideas, Center for Interdisciplinary Research on AIDS," (unpublished working paper, 1998, Yale University, New Haven, Conn.).
125. See Novick, "HIV Surveillance," see note 12 above, p. 53 - citing R.S. Jansen et al., "Diagnosis of Early HIV Infection Using A Dual Enzyme Immunoassay Antibody Testing Strategy for HIV Incidence Estimates, Clinical Research, and Public Health"; R. Brookmeyer et al., "The AIDS Epidemic in India: A New Method for Estimating Current Human Immunodeficiency Virus (HIV) Incidence Rates," American Journal of Epidemiology 142 (1995): 709; R. Brookmeyer and T.C. Quinn, "Estimates of Current Human Immunodeficiency Virus Using Early Diagnostic Tests," American Journal of Epidemiology 141 (1995): 166; E.H. Kaplan, "HIV Surveillance for HIV Prevention: Some Preliminary Ideas, Center for Interdisciplinary Research on AIDS," (unpublished working paper, 1998, Yale University, New Haven, Conn.).
126. See Novick, "HIV Surveillance," see note 12 above, p. 53 - citing R.S. Jansen et al., "Diagnosis of Early HIV Infection Using A Dual Enzyme Immunoassay Antibody Testing Strategy for HIV Incidence Estimates, Clinical Research, and Public Health"; R. Brookmeyer et al., "The AIDS Epidemic in India: A New Method for Estimating Current Human Immunodeficiency Virus (HIV) Incidence Rates," American Journal of Epidemiology 142 (1995): 709; R. Brookmeyer and T.C. Quinn, "Estimates of Current Human Immunodeficiency Virus Using Early Diagnostic Tests," American Journal of Epidemiology 141 (1995): 166; E.H. Kaplan, "HIV Surveillance for HIV Prevention: Some Preliminary Ideas, Center for Interdisciplinary Research on AIDS," (unpublished working paper, 1998, Yale University, New Haven, Conn.).
127. See Forbes, "'Names' Versus 'Unique Identifiers'," see note 49 above, p. 4.
128. IOM, No Time to Lose, see note 32 above, p. 14.