Index

A

Abortion, 287-288

Abrams, Donald, 100

Academic medicine, 57, 99-100

Acer, David J., 62

Activism, see Advocacy and activist groups

ACT-UP, 92, 94, 96, 119, 166-168, 264-265

Adoption, 208, 209-210

Advocacy and activist groups, 8, 14

cancer patients, 99

and drug development and approval, 89-92, 95-97, 101-102, 104, 107-108, 167-168

in New York City, 263-265

see also ACT-UP;

Community-based organizations;

Gay Men's Health Crisis

African Americans, 42, 171-172

churches, 123, 142-143, 149-150

and clinical research, 87, 104-105

gay men, 265-266

incarceration of, 16, 178, 179, 281

in New York City, 251-252, 275

AIDS Clinical Trials Group (ACTG), 92, 94, 95-97, 98, 102, 105-107

AIDS Coalition to Unleash Power, see ACT-UP

AIDS/HIV Experimental Treatment Directory, 101, 110

AIDS National Interfaith Network, 140

AIDS-related complex, 16, 91, 92

AIDS Treatment News, 101, 110

Aid to Families with Dependent Children (AFDC), 212, 213-214

Almarez, Rudolph, 61

Alternative therapies, 90, 99

American Foundation for AIDS Research, 101, 110

American Medical Association, 28, 32

Amphotericin B, 49

Antibody testing, see Testing and screening

ARC, see AIDS-related complex

Asymptomatic HIV-positive population, 21, 24, 29, 92

in prisons, 16, 186-187



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The Social Impact of Aids in the United States Index A Abortion, 287-288 Abrams, Donald, 100 Academic medicine, 57, 99-100 Acer, David J., 62 Activism, see Advocacy and activist groups ACT-UP, 92, 94, 96, 119, 166-168, 264-265 Adoption, 208, 209-210 Advocacy and activist groups, 8, 14 cancer patients, 99 and drug development and approval, 89-92, 95-97, 101-102, 104, 107-108, 167-168 in New York City, 263-265 see also ACT-UP; Community-based organizations; Gay Men's Health Crisis African Americans, 42, 171-172 churches, 123, 142-143, 149-150 and clinical research, 87, 104-105 gay men, 265-266 incarceration of, 16, 178, 179, 281 in New York City, 251-252, 275 AIDS Clinical Trials Group (ACTG), 92, 94, 95-97, 98, 102, 105-107 AIDS Coalition to Unleash Power, see ACT-UP AIDS/HIV Experimental Treatment Directory, 101, 110 AIDS National Interfaith Network, 140 AIDS-related complex, 16, 91, 92 AIDS Treatment News, 101, 110 Aid to Families with Dependent Children (AFDC), 212, 213-214 Almarez, Rudolph, 61 Alternative therapies, 90, 99 American Foundation for AIDS Research, 101, 110 American Medical Association, 28, 32 Amphotericin B, 49 Antibody testing, see Testing and screening ARC, see AIDS-related complex Asymptomatic HIV-positive population, 21, 24, 29, 92 in prisons, 16, 186-187

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The Social Impact of Aids in the United States Atlanta Declaration, 140 AZT, 52, 59, 67, 70, 91-92, 98, 105, 106-108, 191 B Baltimore, Almarez case, 61 STD clinics, 40 Barrier protection, in health care settings, 12, 67-68 see also Condoms Behavioral risks criminal endangerment, 35-37 modification of, 25, 26, 37-38 and religion, 15, 141 see also Intravenous drug use and users; Sexual behavior Belmont report, 87-88 Bergalis, Kimberly, 62 Black Death, see Bubonic plague Black population, see African Americans Blacks Educating Blacks about Sexual Health issues, 150 Bloodborne Pathogens Standard, 59 Blood donation, 161-162 Boarder babies, 206-207, 290 Braschi v. Stahl Associates Co., 230, 232-235 Breast cancer, patient activism, 99 Britt, Harry, 221-222, 227 Broder, Samuel, 91 Bronchoscopies, 71 Bubonic plague, 5, 6, 7, 125 Budgets, see Costs of care; Financing Burroughs-Wellcome, 67, 91, 92, 167 C Cancer clinical trials, 100 hospice care, 52 patient activism, 99 Cardiac Arrhythmia Suppression Trial, 104 Caregivers, see Health care workers; Volunteers and volunteer organizations Case definition, expansion of, 21 Case management, 11, 53-55 in Miami, 208 in New York City, 205-206 Cases, see Incidence Catastrophic health insurance claims, 46 Catholicism, see Roman Catholicism Centers for Disease Control (CDC), 21, 23-24, 31, 32-33, 59, 119-120 Certification of professionals, 41, 55, 68 Charitable contributions, 123, 161, 169-171 Children, 17-18, 105, 131, 203-215, 236-237, 279 in clinical trials, 18, 105, 218-219 of infected mothers, 18, 203-204, 289 in New York City, 279, 289-291 see also Foster care; Perinatal transmission Cholera, 5, 126 Christian Broadcasting Network, 131 Christianity, 123, 127-129 doctrinal responses to AIDS, 15, 129-149 passim and epidemics, 5, 6, 125-127 Chronic granulomatous disease (CGD), 103-104 Churches, see Religion and religious groups Church of Jesus Christ of Latter-Day Saints, 143-144 Citizens' Commission on AIDS, 295 Civil rights, see Rights and liberties Clinical research, see Clinical trials; Drugs, development of; Experimental treatment Clinical trials, 13, 95-97, 99-104 access to, 100, 104-108 advisory boards for, 83, 96, 97 and alternative treatments, 99 AZT, 91 and children, 18, 105, 218-219 double-blind, 82 ethical issues, 82-84, 87-88, 103, 105, 107-108, 112-113

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The Social Impact of Aids in the United States parallel track, 13, 93-95 randomized, 81-84, 85-87, 111-112 women in, 105-108 Clinics, 38-40, 50, 52-53, 71 Cocaine, 269-271 Community Advisory Boards (CABs), 97 Community-based care, 11, 47, 53-54 case management, 54-55 and clinical trials, 13, 100-102 see also Clinics Community-based organizations (CBOs), 14-15, 38, 41, 158-161, 164-165, 168-173, see also Gay Men's Health Crisis Community Clinical Oncology Program (CCOP), 100 Community Consortium of Bay Area HIV Care Providers, 97, 100 Compassionate-plea distribution mechanism, 91 Compound Q, 101-102 Condoms, 128, 146-147, 184-185, 292-294 Confidentiality, see Privacy and confidentiality Consumer activism, see Advocacy and activist groups Contact tracing, 5-6, 31-33 Correctional system, see Prisons and prisoners Costs of care, 12, 68-71, 72 clinical trials, 95, 97 control of, 53, 54 volunteers contribution toward, 158 Counseling for HIV testing, 27-28 Criminal statutes, 36-37 Cryptococcal meningitis, 49 Cutter incident, 85 Cytomegalovirus retinitis, 52 D Death and dying, 52, 160-161 Delaney, Martin, 101-102 Dentists, with AIDS, 61 Dideoxyinosine (ddI), 94-95, 97, 105 Dignity USA, 136 Disclosure, see Informed consent; Partner notification; Reporting of cases Divine punishment, plagues as, 15, 125-126, 128 Doctors, see Physicians Domestic partnerships, 18, 219-221, 237-238 in New York City, 18, 230-236 San Francisco ordinance, 18, 221-230 Drugs, 67 access to, 12, 70, 91, 92, 95, 97, 100 alternative, 90 development of, 13-14, 67, 80-81, 97-99 regulation of, 13-14, 84-87, 90, 92-95, 112 see also Amphotericin B; AZT; Clinical trials; Compound Q; Dideoxyinosine; Fluconazole; Gancyclovir; HPA-23; Intravenous drug use and users; Methadone maintenance programs; Pentamidine; Suramin; Vaccines E Early identification and treatment, 28, 29, 30-32, 40, 42 Economic issues, see Costs of care; Financing Education programs, 10, 25-26, 38, 42, 68, 119-120 in prisons, 17, 184-185 professional, 41, 68 and religion, 15, 133-135, 146, 151, 292-294 Elixer sulfanilamide, 84 Ellenberg, Susan, 96 Emergency medical care, 66 Epidemics, 1, 5-6, 9, 58-59, 158 religious response to, 5, 6, 124-127, 128-129

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The Social Impact of Aids in the United States Ethical issues clinical trials, 82-84, 87-88, 103, 105, 107-108, 112-113 physicians' duty to inform, 33-34 professional obligation, 65-66, 66 Europe, plagues in, 5, 65-66 Evangelical Lutheran Church, 144 Exceptionalist approach, 10, 26-27, 42 Experimental treatment of children, 18, 217-219, 290 of prisoners, 17, 192-193 see also Clinical trials F Falwell, Jerry, 131 Families, 17-18, 201-203, 236-237 see also Children; Domestic partnerships Fauci, Anthony, 94, 96-97 Faya v. Almarez, 61 Federal aid programs child and family, 210-212 health care services, 47, 70 public health agencies, 23, 33, 36, 41, 63 see also Aid to Families with Dependent Children; Medicaid; Medicare Feinstein, Dianne, 222 Felony transmission, 36-37 Fetal transmission, see Perinatal transmission Financing charitable contributions, 123, 161, 169-171 correctional system, 17 government, 14, 24 health care, 11, 12, 47, 68-72 pediatric programs, 210-215 public health, 10, 40 of volunteer groups, 14-15, 169-171 see also Costs of care; Federal aid programs Fluconazole, 49 Food, Drug, and Cosmetic Act, 85 Food and Drug Administration (FDA), 85, 86, 87, 91, 92-93, 97, 102 , 167 Foster care, 18, 105, 210, 213-215, 218 in Miami, 209 in New York City, 206-208, 209-210 Fundamentalist beliefs, 131-136, 143 G Gancyclovir, 52 Gay community, 8-9, 10, 26-28, 41-42, 104 activism, 92, 166-169, 263-265 domestic partnerships, 18, 219-236, 237-238 in New York City, 256, 258-268, 272-273 as patients, 64, 100 in prisons, 186, 187 and religion, 15, 119, 127-149 passim, 226-227 volunteerism and volunteer groups, 14-15, 158, 160, 162-163, 168-172 , 265 Gay Men's Health Crisis (GMHC), 28, 101, 160, 162, 169, 170, 262-263 , 264, 267-268 Government, see Federal aid programs; Prisons and prisoners; Public health systems; Regulations; State public health and welfare systems Greeley, Andrew, 132-133 Guidelines, clinical trials, 105, 106 HIV-positive health care workers, 62-63 infection control, 12, 59, 62-63 H Harlem Hospital, 289-291 Hatch, Orrin, 63 Health care system, 7-8, 11-13, 46-48 financing, 11, 12, 47, 68-72 in New York City, 271-279 service delivery, 48-50, 71-72

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The Social Impact of Aids in the United States see also Clinics; Community-based care; Drugs; Health care workers; Home health care; Hospices; Hospitals; Inpatient care; Medical devices and equipment; Nurses; Nursing homes; Physicians; Testing and screening Health care workers, 29, 55, 72 avoidance of HIV patients, 12, 48, 56-57, 64-66 with HIV, 61-63 occupational risks, 58-61 shortages, 12, 57 training and certification, 41, 55-57, 68 transmission between workers and patients, 11, 12, 29, 49, 58-63 Health insurance, 11, 46, 47, 171 and case management, 54 enrollment practices, 12, 46, 69-70 and home-based care, 53 and unmarried partnerships, 223, 224, 229 see also Medicaid; Medicare Health Resources and Services Administration, 41 Hepatitis B, 64 Heroic interventions, 90 Heroin, 268-269 High-technology care, 52, 53 Hispanic community, 151, 171-172 gay men, 265-267 in New York City, 265-267, 277-278 Hockenberry, Clint, 228-229 Home health care, 53, 68, 71, 165 Homosexuality, viewed as a sin, 15, 127-149 passim see also Gay community Hospices, 51-52, 165 Hospitalization, 12, 52-53 Hospitals, 28, 48-49, 50-51, 53 in New York City, 68-69, 271-274 volunteers in, 163-164 Housing rights, New York City case, 18, 230-236 HPA-23, 90 Hudson, Rock, 90 Human experimentation, 87-88, 113, see also Clinical trials I Immunization, see Vaccines Incarnation Children's Center (ICC), 290-291 Incidence, 1, 7, 61, 67 among health care workers, 61 among hospital patients, 59-60 among prisoners, 16, 180-181 calculation of, 19-21 in New York City, 245-259 Incubation period, 19-21 Indiana v. Haines, 37 Indigent care, 11, 38-39, 40 Individual rights, see Privacy and confidentiality; Rights and liberties Infants, see Children; Maternity and pregnancy; Perinatal transmission Infection, see Incidence; Transmission of HIV Influenza pandemic, 6 Informed consent for invasive procedures, 63 for testing, 26, 27-28, 29 Inmates, see Prisons and prisoners Inpatient care, 48-49, 50, 53 Institutional review boards, 88 Insurance, see Health insurance; Uninsured population Interferon, 103-104 Internal medicine, 56-57 International AIDS Conference, 95-96 Intravenous drug use and users, 9, 10, 42, 104, 141 community-based organizations, 171-173 in New York City, 256-257, 268-271, 272 in prisons, 184, 190-191, 280 see also Methadone maintenance programs

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The Social Impact of Aids in the United States Intravenous pumps, 53 Invasive procedures, 29, 62-63 Investigational new drug (IND) mechanisms, 91, 93-94 Isolation, see Quarantine; Segregation of HIV-positive population J Joseph, Stephen, 30-31, 35 Journals, peer-reviewed, 13-14, 38, 108-109 Judaism, 123, 127, 130, 145 Jungle, The, 84 K Kaposi's sarcoma, 90 Kefauver-Harris amendments, 85, 86-87 Kramer, Larry, 160, 166 Kubler-Ross, Elizabeth, 161 L Latinos, see Hispanic community Law, see Criminal statutes; Public health systems; Quarantine; Regulations Lawsuits, 61 Legal services, 165 Local health departments, 38-40 Los Angeles, 151 M Male nurses, 58 Mandatory testing of government employees, 28 of health care workers, 29, 62, 63 of newborns, 17-18, 28-29 of pregnant women, 17-18, 28-29 of prison inmates, 180, 181-182 Marketing of products and services, 67-68 Marriage, 220-221 Mass media, 111 Maternity and pregnancy, 17-18, 26, 247, 251, 286-289 and AZT, 106-108 and clinical trials, 105-108 among prison inmates, 179 see also Perinatal transmission Medicaid, 31, 40, 69, 70, 210-211 Medical devices and equipment, 53, 67-68 Medicare, 47, 56, 70 Methadone maintenance programs, 39, 184 Methodists, 148-149 Miami, family and child programs, 208-210 Military recruits, testing policies, 28 Modeling of incidence, 20-21 Models and model programs, 33, 39-40, 50, 54, 58 Montefiore Medical Center, 40, 188 Moral Majority, 131 Mormons, 143-144 Mothers, see Maternity and pregnancy Myers, Woodrow, 31, 35 N Named reporting, 30-31 National AIDS Information and Education Program, 119-120 National Black Church Consortium on Critical Health Care Needs, 143 National Cancer Institute (NCI), 91, 97, 100, 109 National Commission for the Protection of Human Subjects, 87-88 National Commission on AIDS, 63 National Community AIDS Partnership, 170 National Council of Churches of Christ in the U.S.A., 129 National Institute of Allergy and Infectious Diseases (NIAID), 96, 101 see also AIDS Clinical Trials Groups National Institutes of Health, 34, 104, 106

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The Social Impact of Aids in the United States National Partnership Program, 119-120 Newborns, see Maternity and pregnancy; Perinatal transmission New England Journal of Medicine, 87, 109 New Jersey, case reporting, 31 Newsletters, 101, 110 New York City, 19, 243-245, 295-296 correctional system, 280-285 passim domestic partnerships, 18, 230-236 drug use and users, 256-257, 268-271, 272 family and child programs, 205-208, 212-213 gay community, 256, 258-268, 272-273 health care system and policies, 30-31, 32, 35, 246, 271-279 incidence and distribution of HIV, 245-259 sex education, 292-294 New York City Task Force on Single-Disease Hospitals, 50-51 Nurses, 12, 57-58, 66 with AIDS, 61 staffing shortages, 12, 57 Nursing homes, 52 O Occupational Safety and Health Administration, 59 Opportunistic diseases and clinical trials, 103, 105 drug development, 98-99 see also Pneumocystis carinii Ordination of gays and lesbians, 140-141 Orphan Drug Act, 67 Outpatient care, 69, 71-72 see also Clinics; Home health care P Parallel track mechanism, 13, 93-95 Pare, Ambrose, 125 Parents, rights of, 17-18, 216-218 Parole, 194 Partner notification, 26, 32-34 Patient activism, see Advocacy and activist groups Patient rights, 11, 26, 89, 90 Peer-review process, 13-14, 108-110 Pentamidine, 90, 100, 191 Perinatal transmission, 17, 106-108, 202, 288-289 Pestilence, see Epidemics; Plagues Physicians, 28, 55, 100 with AIDS, 61 avoidance of HIV patients, 12, 48, 56-57, 64-66 career choices impacts of AIDS, 11-12, 56-57, 72 duty to inform, 33-34 in New York City, 273-274 occupational risks, 58-59 professional obligation, 65-66 Plagues, 1, 5-6, 9, 58-59, 158 bubonic (Black Death), 5, 6, 7, 125 as divine punishment, 15, 125-126, 128 physicians's duties during, 65-66 Pneumocystis carinii pneumonia (PCP), 29, 51, 71, 90, 91, 92, 98 Polio, 98 vaccine, 83-84, 85 Poverty and the poor experimental drug access, 95 incarceration of, 16, 179 in New York City, 267-268, 275-276, 279 pregnancy and children, 217, 279 see also Indigent care Pregnancy, see Maternity and pregnancy; Perinatal transmission Presbyterian Church, U.S.A., 145-146 Presidential Commission on the HIV Epidemic, 36 Preventive medicine, 37-38, 40 Primary care and clinical trials, 100 specialties, 56-57 Prisons and prisoners, 16-17, 176-181, 195-196 conjugal visits, 187, 296n

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The Social Impact of Aids in the United States health care systems, 17, 188-194, 283-285 isolation of HIV-positive inmates, 16-17, 177, 185-187 in New York, 16, 17, 180-181, 190, 280-285 screening of inmates, 16, 176-177, 180-182 seroprevalence of inmates, 16, 180-181 transfer and release, 193-194 Privacy and confidentiality, 11, 17-18, 26, 217 and case reporting, 25, 26, 30-31 and contact tracing, 32 and physicians' duty to inform, 33-34 in prisons, 181 Professional obligation, 65-66 Project Inform, 28, 101-102, 110 Prostitution, 37 Protocol 076, 106-108 Provider referral model, 33 Psychological support services, 165-166 Publications, see Journals, peer-reviewed; Newsletters Public Health Service, 70, 110 Public health systems, 5-6, 9-11, 21, 23-27, 41-43 criminal statutes, 36-37 in New York City, 274-279 as primary care provider, 24, 38-40, 42-43 testing policies, 28-29 see also Clinics; Contact tracing; Medicaid; Partner notification; Preventive medicine; Quarantine; Reporting of cases; State public health and welfare systems Puerto Ricans, 277-278 Pure Food and Drug Act, 84 Q Quarantine, 5, 25, 26-27, 34-36 Quinn, John R., 138-139 R Racial and ethnic groups, 29, 42 community-based organizations, 171-172 gay men, 265-267 incarceration of, 16, 179, 281 in New York, 265-267, 273, 275-276, 277-278, 288-289 see also specific groups Randomized clinical trials, 81-84, 85-87, 111-112 Ratzinger, Cardinal, 146 Recruitment of professionals, 55-58 Registries, 25, 26, 30 Regulations drugs, 13-14, 84-87, 90, 92-95, 112 home-based care, 53 prisoner protection, 17, 192-193 Religion and religious groups, 15-16, 117-124 as care providers, 15, 130, 139-140, 149-153 doctrinal responses to AIDS, 15-16, 129-149, 152-153 and epidemics, 5, 6, 124-127, 128-129 and gay community and lifestyle, 15, 119, 127-149 passim, 226-227 Rent-controlled housing, New York City case, 230-236 Reporting of cases, 21, 25, 26, 30-31 Research, see Clinical trials; Drugs, development of; Experimental treatment; Human experimentation; Peer-review process Rights and liberties, 8, 25-26, 216 and mandatory testing, 17-18 of parents, 17-18, 216-218 of patients, 11, 26, 89, 90 and quarantine, 35 see also Privacy and confidentiality Rikers Island, New York City, 188, 283-284 Risk of infection, see Behavioral risks; Intravenous drug use and users;

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The Social Impact of Aids in the United States Sexual behavior; Transmission of HIV Robert Wood Johnson Foundation, 170 Roman Catholicism, 128, 129-130, 134-135, 136, 139, 146-147, 151-152, 292-293 Rossi v. Almarez, 61 Ryan White Comprehensive AIDS Resources Emergency Act, 36, 41, 54, 211 S Salk, Jonas, 83 Sammons, James, 32 San Francisco, 50, 139 domestic partnership ordinance, 18, 221-230 San Francisco General Hospital, 50, 58 Screening, see Testing and screening Second Presbyterian Church, Kansas City, Mo., 149 Segregation of HIV-positive population in hospitals, 50-51 in prisons, 16-17, 177, 185-187 Sentencing, 37, 194 Sex education, religious objections to, 15, 292-294 Sexual behavior, 38, 202, 255-256, 261-263, 266 and contact tracing, 32 in prisons, 16, 183-185, 202 religious censure of, 15, 126, 127-149 passim Sexually transmitted diseases (STDs), 5-6, 38, 262, 275 clinics, 39-40 as public health model, 28, 32-33 Shanti Project, 165 Sider, Ronald, 135 Sierra Health Foundation, 55 Single-disease medical centers, 50-51, 70 Socially marginalized groups, see Gay community; Intravenous drug use and users; Poverty and the poor; Racial and ethnic groups Soluble CD4, 97 Southern Baptist Convention, 123, 135, 138, 140 Specialization of health care, 11-12, 49-51, 55-57 Spousal notification, 34 Staffing, see Health care workers; Nurses; Physicians Stanley, Charles, 138 State public health and welfare systems, 23, 40-41, 212-214, 218-219 case reporting, 31 contact tracing, 32-33 criminal statutes, 36-37 quarantine, 35-36 see also Aid to Families with Dependent Children; Medicaid State v. Kearns, 37 Stigmatized groups, see Gay community; Intravenous drug use and users; Poverty and the poor; Racial and ethnic groups Streptomycin trials, 83 Suicide, 165-166 Sullivan, Louis, 63 Suramin, 90-91 Surrogate markers, 103-104 Surveillance systems, 21, 23-24 Swing, William E., 138 Syphilis, Tuskegee experiment, 87 T Tarasoff v. Regents of the University of California, 33 Telephone hotlines, 110 Televangelism, 130 Testing and screening, 27-29 behavior modification role of, 27 of government employees, 28 of health care workers, 29, 62 for health insurance, 69-70 of infants and children, 204, 215-218 informed consent, 26, 27-28, 29 of military recruits, 28 of newborns, 28-29

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The Social Impact of Aids in the United States of pregnant women, 17-18, 28-29, 215-216 for tuberculosis, 39 Thalidomide, 85 Theology, see Religion and religious groups Therapeutic agents, see Drugs Therapeutic indifference, 82-83 Transmission of HIV perinatal, 17, 106-108, 202, 288-289 among prisoners, 16, 182-184 between providers and patients, 11, 12, 29, 49, 58-63 Treatment Issues, 101 Tuberculosis, 36, 39, 188-189, 275-277 as public health practices model, 30-31 streptomycin trials, 83 Tuskegee syphilis experiment, 87 U Uninsured population, 11, 12-13, 46, 69 Union of American Hebrew Congregations, see Judaism United Methodist Church, 148-149 Universal Fellowship of Metropolitan Community Churches, 129 Universal precautions, 12, 59, 62, 68 University of Medicine and Dentistry, Newark, 60 Unmarried couples, see Domestic partnerships U.S. Catholic Conference, 146, 147 V Vaccines, 67 for polio, 83-84, 85 Venereal diseases, see Sexually transmitted diseases Volunteers and volunteer organizations, 8, 14-15, 158-166, 173, 265 and drug users, 172-173 and minorities, 171-172 see also Advocacy and activist groups; Community-based organizations; Gay Men's Health Crisis W Whitman-Walker Clinic, 165 Women in clinical trials, 105-108 and cocaine, 269-271 incarceration of, 179, 280-281 in New York City, 251-253, 257, 258, 269-271, 278, 286-289 see also Maternity and pregnancy Workers' compensation, 60-61 Y Yarchoan, Robert, 91 Yellow fever, 125-126 Z Zidovudine, see AZT