Public Health Briefs
Implications of the Revised Surveillance Definition: AIDS New York City Drug Users
among
Don C. Des Jarlais, PhD, John Wenston, MA, Samuel R. Fnedman, PhD, Jo L. Sotheran, AL4, Robert Maslansky, MD, Michael Marmor, PhD, Stanley Yancovitz, MD, and Sara Beatrice, PhD
Introduction
Methods
The number of acquired immunodeficiency syndrome (AIDS) cases reported to the Centers for Disease Control (CDC) has certainly been the most widely used measure of the AIDS epidemic in the United States. This number is routinely cited in the scientific and popular press, and it has served as the basis for political decisions such as allocation of Ryan White CARE Act funding. As knowledge about human immunodeficiency virus (HIV) infection has accumulated, the CDC has periodically revised the surveillance definition of AIDS,' and it has recently proposed a new surveillance definition. This definition would include HIV-seropositive persons with a CD4 cell count of fewer than 200 cells per microliter of blood, regardless of whether those persons have opportunistic infections, neoplasms, or any other symptoms of HIV infection.2 This proposed new definition has generated considerable controversy. Whether it will be adopted is still undecided; the issues it raises, however, will remain relevant even if it is not adopted. Based on a large (n = 7628) study that included only persons already receiving care for HIV infection, the CDC estimates that the new definition would increase the number of persons recognized as living with AIDS by approximately 50%, and that the rate of increase would not vary significantly by route of HIV infection (i.e., risk group).3 Our current studies in New York indicate that the proposed new definition could lead to much more dramatic increases in the numbers of injecting drug users diagnosable as having AIDS.
Since 1984, our collaborative research group has been enrolling injecting drug users in a study of HIV seroprevalence and AIDS risk behaviors in southern Manhattan, New York City.4 Subjects are recruited from among new entrants to an inpatient drug detoxification program and a methadone maintenance program, as well as from among drug injectors seen at an outreach storefront. At the treatment programs, potential participants are recruited within several days of an entry medical examination. These examinations are performed by staff experienced with HIV disease, and thus it is very unlikely that many cases of symptomatic HIV infection are missed. Persons with AIDS are included in the samples. Informed consent is obtained, a structured questionnaire is administered, HIV pretest counseling is administered, and a 25-miL blood sample is drawn for HIV testing and T-cell subset determinaDon C. Des Jarlais and Stanley Yancovitz are with Beth Israel Medical Center; John Wenston, Samuel R. Friedman, and Jo L. Sotheran are with the National Development and Research Institutes, Inc; and Robert Maslansky is with Bellevue Hospital's Addiction Treatment Center, all in New York City, NY. Michael Marmor is with New York University, Environmental Medicine; and Sara Beatrice is with the New York City Department of Health. Requests for reprints should be sent to Don C. Des Jarlais, PhD, BIMC/NDRI, 11 Beach St, New York, NY 10013. This paper was submitted to the Journal March 20, 1992, and accepted with revisions August 12, 1992. The views expressed in this paper do not necessarily reflect the positions of the granting agency or of the authors' employers. Editor's Note. See related editorial by Buehler (p 1462) in this issue.
American Journal of Public Health 1531
Public Healh Briefis
tions. HIV testing uses double enzymelinked immunosorbent assay testing with confirmation of all samples by Westem blot assay. T-cell subset determinations are conducted using a Coulter EPICS C flow cytometer at the New York City Department of Health Laboratory. (The method is described in detail in Des Jarlais et al.5) Subject cooperation has been excellent, with more than 95% of the eligible subjects who were asked to participate in the study agreeing to do so.
Resus Table 1 presents demographic information on subjects who were enrolled in the study during 1990 and 1991 and for whom both interview and blood sample data are available. These demographic characteristics are similar to those of heterosexual injecting drug users who have been diagnosed with AIDS in New York
City.6 Table 2 presents HIV seroprevalence and CD4 cell count data for the injecting drug users who are participating in our current studies. The mean CD4 cell count among the HIV-seropositive subjects was 575 cells per microliter (SD = 366); the median was 519 cells per microliter. The HIV seroprevalence rates among these research subjects are consistent with those found in previous studies of injecting drug users in New York4j7 and with those in current blinded anonymous HIV screening of injecting drug users entering drug abuse treatment in New York City (New York State Department of Health, unpublished data). 1532 American Joumal of Public Health
A search of the New York City Department of Health AIDS Registry was conducted to determine how many of our HIV-positive subjects with CD4 cell counts of fewer than 200 cells per microliter (who would thus meet the new CDC surveillance definition for AIDS) had already been reported as having AIDS. Of the 59 subjects meeting this definition, only 15 (25%, 95% confidence interval = 13% to 36%) had been reported to the AIDS registry.
Disussion Studies of drug injectors who develop AIDS indicate that the great majority of these subjects (approximately 85%) have CD4 counts below 200 cells per microliter before they develop an AIDS-defining illness.3 Current studies ofthe completeness of AIDS reporting in New York City, which use a wide variety of data sources, suggest that more than 80% of drug injectors who meet the current surveillance definition are reported to the city AIDS registry (P. Thomas, MD, unpublished data, personal communication). Thus, from the data reported here, there would appear to be many more injecting drug users in New York City-perhaps three to four times as many-who would meet the new surveillance definition than are currently being reported as having AIDS. Nonetheless, the actual increase in reported cases under a new definition would depend on a number of factors, of which the ready availability of a "user-friendly" process of T-cell testing would appear to be the most important. Research projects in other cities have also found many HIV-seropositive drug injectors with low CD4 cell counts. The median CD4 cell count among HIV-seropositive drug injectors entering the ALIVE study in Baltimore was 508 cells cubic per microliter.8 Among HIV-seropositive drug injectors entering a research
study in San Francisco 1987 through 1989, the mean CD4 cell count was approximately 400 per cubic centimeter (A. Moss, personal communication, 1992). We therefore suspect that HIV and T-cell testing of drug injectors in these cities would similarly identify very large numbers who would qualify as having AIDS under the proposed new surveillance definition. Unfortunately, however, a large increase in the number of persons with AIDS could also lead to more public confusion about what AIDS is and could undermine public confidence in the CDC surveillance numbers. A loss of public confidence in AIDS surveillance would be almost certain if the public came to believe that the surveillance numbers represented primarily the extent of case finding among cities competing for federal monies rather than the "true" number of AIDS cases. Moreover, a loss of public confidence in the CDC numbers would in itself be a major obstacle to adopting rational AIDS policies in this country. Despite potentially difficult problems in adopting the new CDC surveillance definition ofAIDS, however, we do not believe these problems outweigh the need for a new definition. The new surveillance definition more closely reflects current scientific understanding of the pathogenic properties of HIV, which suggests a much wider spectrum of illnesses associated with HIV infection than the current list of opportunistic infections.9-42 The use of a single laboratory test is also operationally much simpler than reliance upon a continuously revised list of opportunistic infections and neoplasms (which also often require laboratory tests to diagnose). Without a surveillance definition that is based on good science and is relatively easy to use in the field, AIDS surveillance will not be able to perform its primary function-that of epidemiological tracking. [1 November 1992, Vol. 82, No. 11
Public Health Brief
Acknowledgents This research was supported by grant DA03574 from the National Institute on Drug Abuse. The authors would like to thank Thomas Ward for his editorial assistance and expertise during the preparation of this manuscript.
References 1. Centers for Disease Control. Revision of the CDC surveillance case definition for acquired immunodeficiency syndrome. MMWR 1987;36(suppl 1S):3S-15S. 2. Centers for Disease Control. Review ofdraft for revision of HIV infection classification system and expansion of AIDS surveillance case definition. MMWR 1991;40:787. 3. Farizo KM, Buehler JW, Chamberland ME, et al. Spectrum of disease in persons with human immunodeficiency virus in the United States. JAMA. 1992;261:17981805.
4. Des Jarlais DC, Friedman SR, Novick D, et al. HIV-1 infection among intravenous drug users in Manhattan, New York City, from 1977 through 1978. JAMA 1989;261: 1008-1012. 5. Des Jarlais DC, Friedman SR, Marmor M, et al. Development of AIDS, HIV seroconversion, and potential co-factors for T4 cell loss in a cohort of intravenous drug users. AIDS. 1987;1:105-112. 6. AIDS Suwveilance Update: Third Quapler 1991. New York, NY: New York City Department of Health; October 31, 1991. 7. Brown LS, Phillips R, Ajuluchukwu D, Battes R, Primm BJ, Nemoto T. Demographic and behavioral features of HIV infection in intravenous drug users (IVDUs) in New York City drug treatment programs: 1985-1988. Poster presented at the Fifth International Conference on AIDS; June 4-9, 1989; Montreal, Canada. 8. Margolick JB, Munoz A, Vlahov D, et al.
Changes in T-lymphocyte subsets in intravenous drug users with HIV-1 infection. JAMA. 1992;267:1631-1636. 9. Selwyn PA, Feingold AR, Hartel D, et al. Increased risk of bacterial pneumonia in HIV-infected intravenous drug users without AIDS. AIDS. 1988;2:267-272. 10. Stoneburner RL, Des Jarlais DC, Benezra D, et al. A larger spectum of severe HIV1-related disase in intravenous drug users in New York City. Science. 1988;242:916919. 11. Vermund SH, Kelley KF, Klein RS, et al. High risk of human papillomavirus infection and cervical squamous intraepithelial lesions among women with symptomatic human immunodeficiency virus infection.AmJObstet GynecoL 1991;165: 392400. 12. MinkoffHL, DeHovitzJA. Care of women infected with the human immunodeficiency virus. JAMA. 1991;266:2253-2258.
HIV Antibody Testing and Posttest Counseling in the United States: Data from the 1989 National Health Interview Survey John E. Anderson, PhD, Ann M. Har, DrPH, Kathy Cahill and Sevg AraL PhD
- ~ ~ ~ ~ ~ ~. . -
Inftdudion Testing for human immunodeficiency virus (HiIV) antibody has been done to protect the blood supply, to ensure that infected persons obtain appropriate medical treatment and other services, and to promote behavior changes that will make HIV transmission less likely.1-3 How successful have counseling and testing efforts been in testing the United States population, particularly those at increased risk for H1V infection? To answer this question we analyzed data from the AIDS Knowledge and Attitudes Supplement to the 1989 National Health Interview Survey (NHIS), a survey of a representative sample of the US population.
Methds Since 1987, information about acquired immunodeficiency syndrome (AIDS) and HIV knowledge and HIV testing experience has been obtained on the NHIS, an annual nationally representa-
tive survey of 40 000 to 50 000 households. In 1989,40 979 respondents aged 18 years and older answered questions related to H1V and AIDS.45 We used data from the 1989 NHIS to measure the extent of self-reported blood tests for HIV among the adult population and among persons at increased risk for HIV infection. We distinguished persons who had sought tests voluntarily from those who had received tests because of military induction, inmmiJohn E. Anderson and Sevgi Aral are with the Division of Sexually Transmitted Diseases and HIV Prevention, National Center for Prevention Services, and Kathy Cahill is with the Public Health Practice Program Office, at the Cen-
ters for Disease Control, Atlanta, Ga. Ann M. Hardy is with the Division of Health Interview
Statistics, National Center for Health Statistics, Hyattsville, Md. Requests for reprints should be sent to John E. Anderson, PhD, Division of STD/HlV Prevention, National Center for Prevention Services, Centers for Disease Control, MSE44, Atlanta, GA 30333. This paper was submitted to the Journal August 19, 1991, and accepted with revisions June 30, 1992.
American Joumal of Public Health 1533
Implications of the Revised Surveillance Definition: AIDS New York City Drug Users
among
Don C. Des Jarlais, PhD, John Wenston, MA, Samuel R. Fnedman, PhD, Jo L. Sotheran, AL4, Robert Maslansky, MD, Michael Marmor, PhD, Stanley Yancovitz, MD, and Sara Beatrice, PhD
Introduction
Methods
The number of acquired immunodeficiency syndrome (AIDS) cases reported to the Centers for Disease Control (CDC) has certainly been the most widely used measure of the AIDS epidemic in the United States. This number is routinely cited in the scientific and popular press, and it has served as the basis for political decisions such as allocation of Ryan White CARE Act funding. As knowledge about human immunodeficiency virus (HIV) infection has accumulated, the CDC has periodically revised the surveillance definition of AIDS,' and it has recently proposed a new surveillance definition. This definition would include HIV-seropositive persons with a CD4 cell count of fewer than 200 cells per microliter of blood, regardless of whether those persons have opportunistic infections, neoplasms, or any other symptoms of HIV infection.2 This proposed new definition has generated considerable controversy. Whether it will be adopted is still undecided; the issues it raises, however, will remain relevant even if it is not adopted. Based on a large (n = 7628) study that included only persons already receiving care for HIV infection, the CDC estimates that the new definition would increase the number of persons recognized as living with AIDS by approximately 50%, and that the rate of increase would not vary significantly by route of HIV infection (i.e., risk group).3 Our current studies in New York indicate that the proposed new definition could lead to much more dramatic increases in the numbers of injecting drug users diagnosable as having AIDS.
Since 1984, our collaborative research group has been enrolling injecting drug users in a study of HIV seroprevalence and AIDS risk behaviors in southern Manhattan, New York City.4 Subjects are recruited from among new entrants to an inpatient drug detoxification program and a methadone maintenance program, as well as from among drug injectors seen at an outreach storefront. At the treatment programs, potential participants are recruited within several days of an entry medical examination. These examinations are performed by staff experienced with HIV disease, and thus it is very unlikely that many cases of symptomatic HIV infection are missed. Persons with AIDS are included in the samples. Informed consent is obtained, a structured questionnaire is administered, HIV pretest counseling is administered, and a 25-miL blood sample is drawn for HIV testing and T-cell subset determinaDon C. Des Jarlais and Stanley Yancovitz are with Beth Israel Medical Center; John Wenston, Samuel R. Friedman, and Jo L. Sotheran are with the National Development and Research Institutes, Inc; and Robert Maslansky is with Bellevue Hospital's Addiction Treatment Center, all in New York City, NY. Michael Marmor is with New York University, Environmental Medicine; and Sara Beatrice is with the New York City Department of Health. Requests for reprints should be sent to Don C. Des Jarlais, PhD, BIMC/NDRI, 11 Beach St, New York, NY 10013. This paper was submitted to the Journal March 20, 1992, and accepted with revisions August 12, 1992. The views expressed in this paper do not necessarily reflect the positions of the granting agency or of the authors' employers. Editor's Note. See related editorial by Buehler (p 1462) in this issue.
American Journal of Public Health 1531
Public Healh Briefis
tions. HIV testing uses double enzymelinked immunosorbent assay testing with confirmation of all samples by Westem blot assay. T-cell subset determinations are conducted using a Coulter EPICS C flow cytometer at the New York City Department of Health Laboratory. (The method is described in detail in Des Jarlais et al.5) Subject cooperation has been excellent, with more than 95% of the eligible subjects who were asked to participate in the study agreeing to do so.
Resus Table 1 presents demographic information on subjects who were enrolled in the study during 1990 and 1991 and for whom both interview and blood sample data are available. These demographic characteristics are similar to those of heterosexual injecting drug users who have been diagnosed with AIDS in New York
City.6 Table 2 presents HIV seroprevalence and CD4 cell count data for the injecting drug users who are participating in our current studies. The mean CD4 cell count among the HIV-seropositive subjects was 575 cells per microliter (SD = 366); the median was 519 cells per microliter. The HIV seroprevalence rates among these research subjects are consistent with those found in previous studies of injecting drug users in New York4j7 and with those in current blinded anonymous HIV screening of injecting drug users entering drug abuse treatment in New York City (New York State Department of Health, unpublished data). 1532 American Joumal of Public Health
A search of the New York City Department of Health AIDS Registry was conducted to determine how many of our HIV-positive subjects with CD4 cell counts of fewer than 200 cells per microliter (who would thus meet the new CDC surveillance definition for AIDS) had already been reported as having AIDS. Of the 59 subjects meeting this definition, only 15 (25%, 95% confidence interval = 13% to 36%) had been reported to the AIDS registry.
Disussion Studies of drug injectors who develop AIDS indicate that the great majority of these subjects (approximately 85%) have CD4 counts below 200 cells per microliter before they develop an AIDS-defining illness.3 Current studies ofthe completeness of AIDS reporting in New York City, which use a wide variety of data sources, suggest that more than 80% of drug injectors who meet the current surveillance definition are reported to the city AIDS registry (P. Thomas, MD, unpublished data, personal communication). Thus, from the data reported here, there would appear to be many more injecting drug users in New York City-perhaps three to four times as many-who would meet the new surveillance definition than are currently being reported as having AIDS. Nonetheless, the actual increase in reported cases under a new definition would depend on a number of factors, of which the ready availability of a "user-friendly" process of T-cell testing would appear to be the most important. Research projects in other cities have also found many HIV-seropositive drug injectors with low CD4 cell counts. The median CD4 cell count among HIV-seropositive drug injectors entering the ALIVE study in Baltimore was 508 cells cubic per microliter.8 Among HIV-seropositive drug injectors entering a research
study in San Francisco 1987 through 1989, the mean CD4 cell count was approximately 400 per cubic centimeter (A. Moss, personal communication, 1992). We therefore suspect that HIV and T-cell testing of drug injectors in these cities would similarly identify very large numbers who would qualify as having AIDS under the proposed new surveillance definition. Unfortunately, however, a large increase in the number of persons with AIDS could also lead to more public confusion about what AIDS is and could undermine public confidence in the CDC surveillance numbers. A loss of public confidence in AIDS surveillance would be almost certain if the public came to believe that the surveillance numbers represented primarily the extent of case finding among cities competing for federal monies rather than the "true" number of AIDS cases. Moreover, a loss of public confidence in the CDC numbers would in itself be a major obstacle to adopting rational AIDS policies in this country. Despite potentially difficult problems in adopting the new CDC surveillance definition ofAIDS, however, we do not believe these problems outweigh the need for a new definition. The new surveillance definition more closely reflects current scientific understanding of the pathogenic properties of HIV, which suggests a much wider spectrum of illnesses associated with HIV infection than the current list of opportunistic infections.9-42 The use of a single laboratory test is also operationally much simpler than reliance upon a continuously revised list of opportunistic infections and neoplasms (which also often require laboratory tests to diagnose). Without a surveillance definition that is based on good science and is relatively easy to use in the field, AIDS surveillance will not be able to perform its primary function-that of epidemiological tracking. [1 November 1992, Vol. 82, No. 11
Public Health Brief
Acknowledgents This research was supported by grant DA03574 from the National Institute on Drug Abuse. The authors would like to thank Thomas Ward for his editorial assistance and expertise during the preparation of this manuscript.
References 1. Centers for Disease Control. Revision of the CDC surveillance case definition for acquired immunodeficiency syndrome. MMWR 1987;36(suppl 1S):3S-15S. 2. Centers for Disease Control. Review ofdraft for revision of HIV infection classification system and expansion of AIDS surveillance case definition. MMWR 1991;40:787. 3. Farizo KM, Buehler JW, Chamberland ME, et al. Spectrum of disease in persons with human immunodeficiency virus in the United States. JAMA. 1992;261:17981805.
4. Des Jarlais DC, Friedman SR, Novick D, et al. HIV-1 infection among intravenous drug users in Manhattan, New York City, from 1977 through 1978. JAMA 1989;261: 1008-1012. 5. Des Jarlais DC, Friedman SR, Marmor M, et al. Development of AIDS, HIV seroconversion, and potential co-factors for T4 cell loss in a cohort of intravenous drug users. AIDS. 1987;1:105-112. 6. AIDS Suwveilance Update: Third Quapler 1991. New York, NY: New York City Department of Health; October 31, 1991. 7. Brown LS, Phillips R, Ajuluchukwu D, Battes R, Primm BJ, Nemoto T. Demographic and behavioral features of HIV infection in intravenous drug users (IVDUs) in New York City drug treatment programs: 1985-1988. Poster presented at the Fifth International Conference on AIDS; June 4-9, 1989; Montreal, Canada. 8. Margolick JB, Munoz A, Vlahov D, et al.
Changes in T-lymphocyte subsets in intravenous drug users with HIV-1 infection. JAMA. 1992;267:1631-1636. 9. Selwyn PA, Feingold AR, Hartel D, et al. Increased risk of bacterial pneumonia in HIV-infected intravenous drug users without AIDS. AIDS. 1988;2:267-272. 10. Stoneburner RL, Des Jarlais DC, Benezra D, et al. A larger spectum of severe HIV1-related disase in intravenous drug users in New York City. Science. 1988;242:916919. 11. Vermund SH, Kelley KF, Klein RS, et al. High risk of human papillomavirus infection and cervical squamous intraepithelial lesions among women with symptomatic human immunodeficiency virus infection.AmJObstet GynecoL 1991;165: 392400. 12. MinkoffHL, DeHovitzJA. Care of women infected with the human immunodeficiency virus. JAMA. 1991;266:2253-2258.
HIV Antibody Testing and Posttest Counseling in the United States: Data from the 1989 National Health Interview Survey John E. Anderson, PhD, Ann M. Har, DrPH, Kathy Cahill and Sevg AraL PhD
- ~ ~ ~ ~ ~ ~. . -
Inftdudion Testing for human immunodeficiency virus (HiIV) antibody has been done to protect the blood supply, to ensure that infected persons obtain appropriate medical treatment and other services, and to promote behavior changes that will make HIV transmission less likely.1-3 How successful have counseling and testing efforts been in testing the United States population, particularly those at increased risk for H1V infection? To answer this question we analyzed data from the AIDS Knowledge and Attitudes Supplement to the 1989 National Health Interview Survey (NHIS), a survey of a representative sample of the US population.
Methds Since 1987, information about acquired immunodeficiency syndrome (AIDS) and HIV knowledge and HIV testing experience has been obtained on the NHIS, an annual nationally representa-
tive survey of 40 000 to 50 000 households. In 1989,40 979 respondents aged 18 years and older answered questions related to H1V and AIDS.45 We used data from the 1989 NHIS to measure the extent of self-reported blood tests for HIV among the adult population and among persons at increased risk for HIV infection. We distinguished persons who had sought tests voluntarily from those who had received tests because of military induction, inmmiJohn E. Anderson and Sevgi Aral are with the Division of Sexually Transmitted Diseases and HIV Prevention, National Center for Prevention Services, and Kathy Cahill is with the Public Health Practice Program Office, at the Cen-
ters for Disease Control, Atlanta, Ga. Ann M. Hardy is with the Division of Health Interview
Statistics, National Center for Health Statistics, Hyattsville, Md. Requests for reprints should be sent to John E. Anderson, PhD, Division of STD/HlV Prevention, National Center for Prevention Services, Centers for Disease Control, MSE44, Atlanta, GA 30333. This paper was submitted to the Journal August 19, 1991, and accepted with revisions June 30, 1992.
American Joumal of Public Health 1533
