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What's in a Name? The Policy Implications of the CDC Definition of AIDS

Published online by Cambridge University Press:  29 April 2021

Extract

Disease classification systems and surveillance definitions are ordinarily tools for medical professionals, not matters for political debate and patient advocacy. It is hard to imagine a protest march complaining about the classification system for colon cancer. But when it comes to AIDS, nothing is ordinary.

The Centers for Disease Control's (CDC) case definition of AIDS is used by public health officials, researchers, clinicians, hospital administrators, disability specialists, insurance administrators, health economists, legislators, social workers, policy makers, and the media. It has influenced the way the HIV epidemic is perceived, managed, and funded.

It is not surprising, then, that the CDC definition of AIDS and its proposed revision is currently the subject of intense scrutiny. The case definition has transcended epidemiology to become a symbol for the inadequacies of the U.S. government's response to the HIV epidemic, and a particular symbol for the failure to address the needs of HIV-infected women.

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Article
Copyright
Copyright © American Society of Law, Medicine and Ethics 1991

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References

For an overview of the growing epidemic among women, see Susan Chu, Y. Buehler, James W. and Berkelman, Ruth L., “Impact of the Human Immunodeficiency Virus Epidemic on Mortality in Women of Reproductive Age, United States”, Journal of the American Medical Association, 264 (July 11, 1990): 225–29.Google Scholar
ACT UP, Background on the Centers for Disease Control, April 1, 1991, p. 5.Google Scholar
Intergovernmental Health Policy Project, George Washington University, personal communication, April 1991.Google Scholar
L. 1991, c. 38, ¶ 12-18; L. 1991, c. 111 1/2, ¶ 7312, 7402 and 7405.5 (Enacted Oct. 4, 1991).Google Scholar
Report of the Presidential Commission on the Human Immunodeficiency Virus Epidemic (Washington, DC: The Commission, June 1988): xvii.Google Scholar
ACT UP/NEW YORK, “Dear Colleague” letter, April 1, 1991.Google Scholar
Centers for Disease Control, “Pneumocystis Pneumonia, Los Angeles” Morbidity and Mortality Weekly Report, 30 (June 5, 1981): 250–52; Centers for Disease Control, “Kaposi's Sarcoma and Pneumocystis Pneumonia among Homosexual Men — New York City and California,” Morbidity and Mortality Weekly Report, 30 (July 3, 1981): 305-08.Google Scholar
Centers for Disease Control, “Update on Acquired Immune Deficiency Syndrome (AIDS) — United States”, Morbidity and Mortality Weekly Report, 31 (Sept. 24, 1982): 507–14 (hereinafter “Update”).Google Scholar
Dr.Chin, James, personal communication, May 1991.Google Scholar
CDC, “Women and AIDS: The Growing Crisis”, CDC HIV/AIDS Prevention Newsletter, 2 (April 1991): 4.Google Scholar
Centers for Disease Control, “Revision of Case Definition of Acquired Immunodeficiency Syndrome for National Reporting — United States”, Morbidity and Mortality Weekly Report, 34 (June 28, 1985): 373–75.Google Scholar
Centers for Disease Control, “Revision of the CDC Surveillance Case Definition for Acquired Immunodeficiency Syndrome”, Morbidity and Mortality Weekly Report, 36 (Supplement): 1S15S (hereinafter “1987 Revision”).Google Scholar
Centers for Disease Control, “1987 Revision,” p. 3S.Google Scholar
Ibid., p. 7S.Google Scholar
Centers for Disease Control, “Classification System for Human T-Lymphotropic Virus Type III/Lymphadenopathy-associated Virus Infections”, Morbidity and Mortality Weekly Report, 35 (May 23, 1986): 334–39 (hereinafter “Classification System”); Centers for Disease Control, “Classification System for Human Immunodeficiency Virus (HIV) Infection in Children under 13 Years of Age”, Morbidity and Mortality Weekly Report, 36 (April 24, 1987): 225-36.Google Scholar
Centers for Disease Control, “Classification System,” p. 334.Google Scholar
Dr.Berkelman, Ruth, personal communication, May 1991.Google Scholar
Redfield, Robert R. Wright, Craig D. and Tramont, Edmund C., “The Walter Reed Staging Classification for HTLV-III/LAV Infection”, New England Journal of Medicine, 314 (Jan. 9, 1986): 131–32; Redfield, Robert R. Wright, D. Craig and Tramont, Edmund C., “The Walter Reed Staging Classification in the Follow-up of HIV Infection”, New England Journal of Medicine, 315 (1986): 1356.Google Scholar
Justice, Amy C. Feinstein, Alvan R. and Wells, Carolyn D., “A New Prognostic Staging System for the Acquired Immunodeficiency Syndrome”, New England Journal of Medicine, 320 (May 25, 1989): 1388–93.CrossRefGoogle Scholar
Redfield, Robert R. and Tramont, Edmund C., “Toward a Better Classification System for HIV Infection”, New England Journal of Medicine, 320 (May 25, 1989): 1414–16.Google Scholar
Centers for Disease Control, “Guidelines for Prophylaxis against Pneumocystis Carinii Pneumonia for Persons Infected with Human Immunodeficiency Virus”, Morbidity and Mortality Weekly Report, 38 (1989): Supplement 5.Google Scholar
Centers for Disease Control, “1992 Revised Classification System for HIV Infection and Expanded Case Definition for Adolescents and Adults”, Draft, Nov. 15, 1991.Google Scholar
Selik, Richard M. Buehler, James W. Karon, John M. Chamberland, Mary E. and Berkelman, Ruth L., “Impact of the 1987 Revision of the Case Definition of Acquired Immune Deficiency Syndrome in the United States”, Journal of Acquired Immune Deficiency Syndromes, 3 (1990): 7382 (hereinafter “Impact of the 1987 Revision”).Google Scholar
Selik, et al, “Impact of the 1987 Revision”, p. 75.Google Scholar
Payne, Susan F. Rutherford, George W. Lamp, George F. and Clevenger, Craig A., “Effect of the Revised AIDS Case Definition on AIDS Reporting in San Francisco: Evidence of Increased Reporting in Intravenous Drug Users”, AIDS, 4 (1990): 335–39. For a report of the first four months' experience using the 1987 definition, see Rutherford, George W. Payne, Susan F. and Lemp, George F., “Impact of the Revised AIDS Case Definition on AIDS Reporting in San Francisco”, Journal of the American Medical Association, 259 (April 15, 1988): 2235.Google Scholar
Sheppard, Haynes W. Winkelstein, Warren Jr. Osmond, Dennis and Moss, Andrew R., “Effect of New AIDS Case Definition on Numbers of Cases Among Homosexual and Bisexual Men in San Francisco”, Journal of the American Medical Association, 266 (Oct. 23/30, 1991): 2221.CrossRefGoogle Scholar
Stehr-Green, Jeannette K. Jason, Janine M. and Evatt, Bruce L., “Potential Effect of Revising the CDC Surveillance Case Definition for AIDS”, Lancet, 1 (March 5, 1988): 520–21.Google Scholar
Selik, et al, pp. 79-80.Google Scholar
Stoneburner, Rand L. Des Jarlais, Don C. Benezra, Diane Gorelkin, Leo Sotheran, Jo L. Friedman, Samuel R. Schultz, Stephen Marmor, Michael Mildvan, Donna and Maslansky, Robert, “A Larger Spectrum of Severe HIV-1-Related Disease in Intravenous Drug Users in New York City”, Science 242 (Nov. 1988): 916–19 p. 918.Google Scholar
Selwyn, Peter A. Hartel, Diana Wasserman, William and Drucker, Ernest, “Impact of the AIDS Epidemic on Morbidity and Mortality Among Intravenous Drug Users in a New York City Methadone Maintenance Program”, American Journal of Public Health, 79 (Oct. 1989): 1358–62.Google Scholar
Hayes, Thomas Altman, Ronald Akili-Obiba, A. Costa, Samuel Buehler, J. Beil, John Massey, J. and Williams, Neil, “Non-AIDS Mortality in New Jersey Related to HIV-1 Infection”, abstract submitted to the American Public Health Association annual meeting (Nov. 1991).Google Scholar
See, e.g., New Jersey Women and AIDS Network, Me First! Medical Manifestations of HIV in Women (1990).Google Scholar
Allen, Harris Machelle, “Primary Care of Women Infected With the Human Immunodeficiency Virus”, Obstetrics and Gynecology Clinics of North America, 17 (Sept. 1990): 557–69; Minkoff, Howard L. and DeHovitz, Jack A., “Care of Women Infected with the Human Immunodeficiency Virus”, Journal of the American Medical Association, 266 (Oct. 23/30, 1991): 2253-58; Vermund, Sten H. Kelley, Karen F. Klein, Robert S. Feingold, Anat R. Schreiber, Klaus Munk, Gary and Burk, Robert D., “High Risk of Human Papillomavirus Infection and Cervical Squamous Intraepithelial Lesions among Women with Symptomatic Human Immunodeficiency Virus Infection”, American Journal of Obstetrics and Gynecology, 165 (Aug. 1991): 392–400.Google Scholar
Centers for Disease Control, “Women and AIDS: The Growing Crisis,” CDC HIV/AIDS Prevention Newsletter, April 1991, p. 4.Google Scholar
See note 1.Google Scholar
Berkelman, Ruth L. Chu, Susan Y. Farizo, Karen and Buehler, James W., “Clarification of AIDS Mortality in Women”, Journal of the American Medical Association (April 17, 1991): 1952.Google Scholar
Personal communication Pauline Thomas and Alan Greenberg, New York City Department of Health.Google Scholar
Ellerbrock, Ted V. Bush, Timothy J. Chamberland, Mary E. and Oxtoby, Margaret J., “Epidemiology of Women With AIDS in the United States, 1981 Through 1990”, Journal of the American Medical Association, 265 (June 12, 1991): 2971–75, p. 2975.Google Scholar
Centers for Disease Control, “Risk for Cervical Disease in HIV-Infected Women”, Morbidity and Mortality Weekly Report, 39 (1990): 846–49.Google Scholar
Centers for Disease Control, “CDC Plan for Preventing Human Immunodeficiency Virus Infection: A Blueprint for the 1990s”, (Atlanta: CDC, 1990) p. 9.Google Scholar
Selik, , “Impact of the 1987 Revision”, at 80.Google Scholar
For detailed information on federal entitlements see McCormack, Thomas P., The AIDS Benefits Handbook (New Haven: Yale University Press, 1990); Scherzer, Mark, “Insurance and Employee Benefits” in Albert, Paul et al, eds., AIDS Practice Manual (San Francisco: National Lawyers Guild AIDS Network, 1991), 8/1–8/32.Google Scholar
20 CFR §416 (effective Feb. 9, 1988).Google Scholar
42 U.S.C. §§ 413(d)(1) [SSDI], 1382c(a)(3)(A) [SSI] (1988).Google Scholar
McGovern, Terry, MFY Legal Services, personal communication, April 1991.Google Scholar
Testimony of Terry McGovern at hearings held by Andrew Stein, President, New York City Council, May 2, 1991. Also see, Second Amended Complaint, S.P., et al. v. Louis W. Sullivan, M.D., 90 Civ. 6294 (MGC) (S.D.N.Y. 1990). In S.P., administrative law judges upheld denials of Medicaid eligibility to at least three female plaintiffs on grounds that their HIV-related gynecological illnesses were not significantly disabling.Google Scholar
S.P., et al. v. Louis W. Sullivan, M.D., 90 Civ. 6294 (MGC) (S.D.N.Y. 1990)Google Scholar
Second amended class action complaint, at 46, filed on March 5, 1991.Google Scholar
53 F.R. 3739, 3740 (Feb. 9, 1988).Google Scholar
SSA Program Circular, “Disability: Evaluation of HIV Infection Cases” (SSA Pub. No. 64-044), March 28, 1991.Google Scholar
Staver, Sari, “Social Security to Ease Benefits for Those with HIV”, American Medical News, August 19, 1991, p. 9.Google Scholar
Social Security and SSI AIDS Disability Act of 1991, “Discussion Draft”, April 29, 1991, p. 2-3.Google Scholar
Office of Technology Assessment, U.S. Congress, “AIDS and Health Insurance: An OTA Survey”, (Washington: OTA, 1988).Google Scholar
Belkin, Lisa, “Albany Denies Rate Increase for Leading Health Issues”, New York Times, Oct. 2, 1991, sec. A1.Google Scholar
Freudenheim, Milt, “Health Insurer Plans to Seek Big Rate Rise”, New York Times, July 25, 1991, sec. B1–4.Google Scholar
Scherzer, Mark, “Insurance and Employee Benefits”, in Albert, Paul et al, eds., AIDS Practice Manual: A Legal and Educational Guide, 3rd Edition (San Francisco: National Lawyers Guild AIDS Network, 1991), 8/88/16.Google Scholar
Pear, Robert, “Court Approves Cuts in Benefits in Costly Illness”, New York Times, Nov. 27, 1991, p. A-1.Google Scholar
42 U.S.C.A. § 300 ff et seq. (1991 Supp.).Google Scholar
For a comprehensive assessment, see “Assessing the Impact of the CARE Act: Is New York State Receiving its Fair Share of Federal Funding for AIDS Related Services?” Columbia University Workshop in Applied Policy Analysis, Graduate Program in Public Policy and Administration, Jennifer Thompson, Project Manager, May 1991.Google Scholar
Raphael, Theresa, memo, from the Council of State Governments, Eastern Regional Conference, April 3, 1991.Google Scholar
Institute of Medicine, The AIDS Research Program of the National Institutes of Health (Washington DC: National Academy Press, 1991), p. 16.Google Scholar
Levine, Carol, “Women and HIV/AIDS Research: The Barriers to Equity”, Evaluation Review, 14 (Oct. 1990): 447–63.Google Scholar
IOM report, p. 2.Google Scholar
Pear, Robert, “Medicare to Weigh Cost as a Factor in Reimbursement”, New York Times, April 21, 1991, sec. A1.Google Scholar
National Institutes of Health, Instruction and Information Memorandum OER 90–5, Dec. 11, 1990.Google Scholar
Ellerbrock, et al, p. 2975.Google Scholar
Conway, George A. Colley-Niemeyer, Brenda Pursley, Claire Cruz, Carlota Burt, Sherin Rion, Pam and Heath, Clark W. Jr., “Underreporting of AIDS Cases in South Carolina, 1986 and 1987”, Journal of the American Medical Association, 262 (Nov. 24, 1989): 2859–63; Lindan, Christina P. Norman, Hearst Singleton, James A. Trachtenberg, Alan I. Riordan, Noreen M. Tokagawa, Diane A. and Chu, George S., “Underreporting of Minority AIDS Deaths in San Francisco Bay Area, 1985–86”, Public Health Reports, 105 (July-Aug., 1990): 400-04.Google Scholar
Soumerai, Stephen B. and Avorn, Jerry, “Principles of Educational Outreach (‘Academic Detailing’) to Improve Clinical Decision Making”, Journal of the American Medical Association, 263 (Jan. 26, 1990): 549–56.Google Scholar
Kosecoff, Jacqueline Kanouse, David E. Rogers, William H. McCloskey, Lois Winslow, Monroe Constance and Brook, Robert H., “Effects of the National Institutes of Health Consensus Development Program on Physician Practice”, Journal of the American Medical Association, 258 (Nov. 20, 1987): 2708–13.CrossRefGoogle Scholar
Soumerai and Avorn, op. cit.Google Scholar
Kaufman, Gerald I. DiFerdinando, George T. Jr. and Gottesman, Sarah E., “An Evaluation of the Use of the Statewide Planning and Research Co-operative System of New York State as a Resource Planning Tool for HIV Infection”, American Journal of Public Health, 81 (Feb. 1991): 215–17.Google Scholar
Beil, John, New Jersey Department of Health, personal communication, May 1991.Google Scholar
We are grateful to Chin, James M.D., Global Programme on AIDS, World Health Organization, and Mann, Jonathan M.D., International AIDS Center, Harvard University, for information in this section.Google Scholar
Pan American Health Organization, “Working Group on AIDS Case Definition”, Epidemiological Bulletin of the Pan American Health Organization, Vol. 10, No. 4, 1990, pp. 911.Google Scholar
Staver, , “CDC Is Broadening Definition of AIDS”, op. cit., p. 9.Google Scholar
See Merrill, Laurie C., “Bergen to Impose AIDS Testing Fee,”: The Record, October 22, 1991, p. A-1, reporting on the Bergen County, N.J. Health Department's announcement that it is unable to meet current demands for free HIV antibody testing and that it will now charge $10 for the test.Google Scholar
Chin, James M.D., personal communication, April 1991.Google Scholar