Index
A
Abortion, 17, 26, 45, 102-103, 269, 278, 324
Accountability
clinical policy performance measures, 18, 117-118, 125, 133, 196
health care plans/providers, general, 8, 62-63, 65, 89, 187
state programs, federally funding criteria, 1, 4-5, 10, 16-17, 57, 59, 61, 122-123, 125-126, 173, 175, 177, 181, 343-346
see also Cost and cost-benefit factors
ACTG (AIDS Clinical Trials Group)
ACTG 076 (AIDS Clinical Trials Group protocol number 076)34, 39,48, 120, 127, 359
compliance with, 96, 107, 121-122, 208, 209, 243, 264
impact of, general, vii, 1, 4, 5, 14, 15-16, 68, 106, 128, 213, 331
Medicaid managed care, 66
steps involved in implementation, 206
unintended pregnancies, 12
see also ''counseling guidelines" and "testing guidelines" under Public Health Service
Adolescents, 103, 176, 180, 212, 242, 243-244
attitudes, 243-244
community-level services, 56, 62, 131-132, 156, 161, 243-244
injection drug users, 131, 244
testing of, 13, 117, 130, 131-132, 243-244
see also School-based programs
AFP, see Alpha-fetoprotein
African Americans
patient vignettes, 246-247
prenatal care trends, 74
prevalence, 3, 38, 40-41, 204, 228, 357
sickle cell disease, 19, 25, 27-28
testing of newborns, 333
testing of women, 34-35, 74, 87, 89, 93, 95, 207, 226, 288, 290,293, 296, 298, 300, 302
Age factors
AIDS development in infants/children, 37, 205
incarcerated women, 129
polymerase chain reaction tests, 52
service provision, 214
testing of women, 87, 207, 289, 290, 293, 297, 299, 300
ZDV use, 238
AIDS Drug Assistance Program, 175, 238
AIDS Education and Training Centers, 196, 211
AIDS exceptionalism, 32, 33, 314
AIDS Health Education Centers, 7, 114
AIDS Policy Center for Children, Youth and Families, 73, 230-231
AIDS Public Information Data Set, 37
AIDS service organizations, 57, 157, 169
Aid to Families with Dependent Children, reform of, 63, 184
see also Temporary Assistance for Needy Families
Alabama, 19, 86-87, 100, 231, 252-259
Alaska, 86-87
Alcohol use and abuse
Medicaid coverage of abusers, 172
prenatal care use and, 231
testing of newborns, 30
treatment for, 180
see also Substance abusers
Alpha-fetoprotein, 25-26, 29, 193
American Academy of Family Physicians, 72, 214-216
American Academy of Pediatrics, 1, 25, 27, 72, 193-194, 331
American Association of Health Plans, 221-222
American College of Nurse Midwives, 73, 219-220
American College of Obstetricians and Gynecologists, 1, 25, 29, 71 -72, 166, 167, 192-193
American Medical Association, 72-73, 191-192
Americans with Disabilities Act, 155, 187, 195
Association of Maternal and Child Health Programs, 220-221
Association of Women's Health, Obstetric, and Neonatal Nurses, 216 -218
Attitudes
family members, 239, 240-241, 247, 248, 257, 269, 277
patients, 21, 81, 101, 120, 213, 231, 232
adolescents, 243-244
drug treatment, acceptance/refusal, 241, 243, 246-247, 248, 256-257, 261, 278, 284
individuals, accounts of, 232-234, 246-248, 266-269, 275-285
testing, acceptance/refusal, 5, 6, 14, 18-19, 21, 31, 71, 72, 77, 85, 86-89, 92-96, 105, 111, 120, 121-122, 133, 191, 207, 212, 222, 231, 233, 277, 363
ZDV treatment acceptance/compliance, 96-100, 213, 229, 256, 261, 268, 276-277, 279, 283, 284, 307, 309
providers, 21, 32, 75, 76-85, 198-199, 209, 233-234, 242, 281, 282 , 283-284
counseling, 32, 75, 76-85, 117, 193, 200, 206, 213, 226, 237, 239, 242, 243, 281
sexual behavior, discomfort with discussing, 242, 243, 281
stigma and taboo, 2, 6, 7, 14, 21, 28-29, 31, 32, 33, 112-113, 231 , 239, 268, 317
see also Cultural factors;
Religious factors
AZT, see Zidovudine
B
Balanced Budget Act of 1997, 64, 65, 169, 185
Behavioral interventions, see Counseling;
Psychotherapy
Behavioral Risk Factor Surveillance System, 85, 88-89, 94
Birth control, see Abortion;
Contraception;
Family planning
Maternal and Child Health Services Block Grant, 158, 161, 177-178, 184, 218, 220-221
Prevention and Treatment of Substance Abuse Block Grant, 180
primary care, federal requirements, 57, 165, 177, 257-258
Substance Abuse, Prevention, and Treatment Block Grant, 57, 164-165
TANF, 63
Blood donation and transfusion, 31, 40, 89, 268, 287, 317
hemophilia/coagulation disorders, 40, 176, 262
Bragdon v. Abbott, 58
Breast-feeding, 13, 17, 45, 46, 53, 72, 73, 102, 130, 161, 162, 190 , 194, 197-200 (passim), 213-214, 219, 240, 248, 261, 266, 278, 314 , 359, 365
Bureau of HIV/AIDS, 11
Bureau of Primary Health Care, 60, 160, 174, 178
C
California
counseling and testing, 70, 75, 80-83, 86-87, 89-90, 114, 116, 216 -219, 336
ZDV use, 94-95
California Perinatal HIV Testing Project, 218-219
Canada, 111
Case management, 124, 160, 175, 179, 212, 262, 263, 272
Center for Substance Abuse Treatment, 165, 180
Centers for Disease Control and Prevention (CDC), 19, 42, 178-180, 206
community-based care, 162-163, 169
counseling, 62, 74, 75-77, 80-81, 84, 176, 179, 181, 210, 342, 343
drug treatment/testing, 49
prenatal care trends, 74-75
primary and specialty care, 60, 62
sexually transmitted disease clinics, 162-163
state programs and, 4-5, 37, 165-166, 169, 181, 197, 314, 320-321, 324, 325
testing of newborns, 315
testing of women, 74, 75-77, 80-81, 84-88, 94-96, 130, 179, 342,343
ZDV use studies, 97
see also Public Health Service;
other subordinate organizations
Cesarean sections, 51, 103, 233, 279
Child Health Insurance Program, 59, 132, 173-174
Children with Special Health Care Needs, 177
Chlorhexidine, 51
Clinical policy performance measures, 18, 117-118, 125, 133, 196
Clinical practice guidelines, 8, 14, 18, 19, 49(n), 72, 75, 84-85, 115-117, 218, 225, 238, 254, 263, 279
see also "counseling guidelines" and "testing guidelines" under Public Health Service
Community-based health services, 60-61, 155-170, 175, 253, 262
adolescents, 56, 62, 131-132, 156, 161, 243-244
contracted, 159-160
counseling, 157-171 (passim), 176-179 (passim), 181
family planning clinics, 55, 56, 92-93, 127, 160-161, 253
home care, 61, 157, 169-170, 173, 175, 212, 238, 258
list of providers, 157
local health departments, 157-158
Maternal and Child Health Services Block Grant, 158, 161, 177-178, 184, 211, 218, 220-221
Medicaid, 155, 156, 159, 160, 165
Ryan White CARE Act of 1990, 160, 165
Ryan White CARE Act Programs, 169, 176
school-based programs, 56, 61, 62, 163-164, 180
screening and testing, general, 56-57, 155, 157, 160
state programs, 158, 159, 162, 164-165, 165-166
STD services, 56, 131, 162-163, 255-256
testing of women, 155, 157, 160-176 (passim), 179, 181
see also Outreach
Community Programs for Clinical Research on AIDS, see Terry Beirn Community Programs for Clinical Research on AIDS
Confidentiality and privacy, 314, 316, 322, 333
adolescents, 243
prison populations, 224
testing of women, 23, 32, 34, 35, 72, 73, 81, 83, 85, 120, 121, 122 , 194, 211, 213, 215, 217, 243, 246, 254, 256, 267, 360, 361
Connecticut, 42, 84-85, 88-89, 204
Consumer education, 176, 213, 230, 323
Consumer information program (HCFA), 230
Contraception, 12, 128, 161, 280
abortion, 17, 26, 45, 102-103, 269, 278, 324
Hispanic culture, 266
Contracts and contracting, 60-62, 119
community health centers, 159-160
Medicaid managed care, 8-9, 14, 18, 66, 118-119, 133, 169
primary and specialty health care, 56-57
prisons, health care services, 56-57, 164
Coordinated HIV Services and Access to Research for Children, Youth, Women, and Families, 176
Correctional institutions, 13, 20, 55, 56-57, 129-130, 164, 176, 223-224, 253, 262, 273, 277
age factors, 129
contracted services, 56-57, 164
Cost and cost-benefit factors, 5, 23
case finding, 23
developing countries, viii
financial barriers to health care access, 5, 13, 63-65, 128, 243
managed care, 186
Medicaid, 185
prenatal care, general, 132, 304-307
testing of women, 6-7, 200, 306-307, 321
home-based, 169
ZDV, 306
see also Accountability;
Funding
Counseling, 4, 12, 28, 32, 110-111, 181, 190, 207, 210, 231, 322-323, 332, 334
attitudes toward, providers, 32, 75, 76-85, 117, 193, 200, 206, 213, 226, 237, 239, 242, 243, 281
breast-feeding, 4, 52, 199-200, 213
WIC program, 104, 233, 261, 282
CDC sites, 62, 74, 75-77, 80-81, 84, 176, 179, 181, 210, 342, 343
community-based services, 157-171
(passim), 176-179
(passim), 181
cost factors, 6, 305, 306, 307
drug therapy, 49, 229, 241, 246, 247 ZDV therapy, risks of, 48-49, 219, 361
family planning, 73, 127, 210, 253
follow-up testing and, 115, 361
funding, 10, 16, 62, 67, 123, 124, 161, 169, 176-179 (passim), 181 , 194, 196, 200, 210, 230, 237-238, 242, 249, 261, 265, 342, 343
gender factors, 260
genetic, 24-25, 28, 29, 193, 323
HCFA, 230
Hispanics, 245
inadequate/inappropriate, 101-103, 195, 199-200, 213, 218, 231, 248 , 264, 268, 281
managed care, non-Medicaid, 242
Medicaid managed care, 66, 67, 119, 196, 209, 210, 230
nurses/nurse-midwives, 97, 117, 124, 167-168, 212, 216-217, 219, 271
peer, 19
PHS guidelines, vii, 1, 5, 15, 36, 38, 71-73, 104, 105, 106, 110-111, 114, 115, 166, 168, 171, 186, 190-198, 203, 206, 215-234 (passim), 237, 253-254, 263, 307, 357, 358-359, 360-361, 363-364, 365-366
physicians, 11, 67, 72, 101, 114, 117, 166-167, 193, 195, 197, 213, 215, 228, 239, 241-243, 249, 263, 273, 281, 324, 327, 333
political factors, vii, 322-323
post-test, 116, 120, 163, 165, 193, 213, 215, 249, 255, 334
inadequate/inappropriate, 101-103, 195, 199-200, 231, 264, 268, 281
preconception, 12, 127, 128, 217, 218, 280;
see also Family planning
prenatal care providers, 5, 71-73, 76-85, 107, 110, 117, 124, 192, 197-200, 201, 209, 210, 216, 217, 221, 226, 237, 239, 242, 246, 249, 253, 254-256, 258, 265, 271, 359
pre-test, 107, 110-112, 113, 116-117, 120, 163, 165, 170, 193, 199, 212, 215, 216, 223, 243, 249, 255, 272, 273, 283
professional education on, 71, 114, 116, 177, 218, 225, 249
professional organizations, policies, 7-8, 71-73, 113-115, 191-195, 214-223, 361
psychotherapy, 4, 52, 71, 121, 192-193, 217, 224
risk-based, 81, 83, 85, 114, 276
rural areas, 82-83
Ryan White CARE Act Amendments of 1996, 10, 16, 230, 342-344
Ryan White CARE Act Programs, 124, 177, 195
school-based, 56, 61, 62, 163, 178, 180
social factors, general, 21, 23, 217
sickle cell disease, 28
site visits, 237-270
state programs/policies, 62, 71, 115, 165-166, 169, 176, 181, 195, 196, 218, 225-227, 232, 242, 253, 255, 257, 320, 322, 323, 324, 327, 329-332, 333, 334, 336
legislation, 1, 15, 66, 68, 69, 70, 74-75, 91, 106, 107, 108, 114, 196, 198, 210, 217, 218, 223, 227, 228, 232, 236, 239, 242, 265, 271
specific states, 69, 70, 74, 75, 80-84, 86-90, 114, 116, 124, 216-219, 271-273, 336;
see also "counseling and testing" under specific state names
telephone help lines, 70
time limitations, 5, 85, 193, 213, 217, 237, 238, 241, 242, 249, 263
universal/routine, 15, 32, 69, 71, 72, 73, 104, 106, 111-112, 168, 191-193, 203, 215, 219, 220, 221, 223, 229, 237, 249, 253, 255, 257 , 323, 324, 329-332, 333, 342-344
routine testing vs, 6, 8, 113, 115, 191, 192, 255
WIC program, 57, 104, 161-162, 233, 261, 282
see also Informed consent;
Partner notification;
Patient education;
Patient notification
CPCRA, see Terry Beirn Community Programs for Clinical Research on AIDS
Cultural factors, 5, 132, 214, 244, 249, 266
religious factors, 26, 121, 244, 255, 257-258, 269, 272, 284, 331
stigma and taboo, 2, 6, 7, 14, 21, 28-29, 31, 32, 33, 112-113, 231, 239, 268, 317
see also Language factors
D
Demographic factors, general, 235, 286-303, 321
see also Age factors;
Gender factors;
Homeless persons;
Marriage and marital status;
Racial/ethnic factors;
Regional factors;
Rural areas;
State-level factors;
Urban areas
Dentists and dentistry, 61, 177, 178, 214, 262
Department of Agriculture, see Special Supplemental Nutrition Program for Women, Infants and Children
Department of Health and Human Services
see also specific agencies
Department of Justice, 165
Developing countries, viii
Diagnosis and diagnostic tools, 1, 45-46
heel-stick blood sampling, 27, 34, 38, 97, 203, 307, 319
home-based, 169-170
see also Enzyme-linked immunosorbent assays;
Immunoassays;
Polymerase chain reaction tests;
Testing of newborns;
Testing of women;
Western blot tests
Discrimination
AIDS-related, 23, 31-34 (passim), 58, 69, 121, 191, 194, 207, 213, 248, 317, 360, 361
AIDS exceptionalism, 32, 33, 314
Americans with Disabilities Act, 155, 187, 195
employment, 28, 187, 211, 248, 360, 361
insurance, 58, 187, 195, 207, 345-346
newborns, treatment of, 198-199
stigma and taboo, 2, 6, 7, 14, 21, 28-29, 31, 32, 33, 112-113, 231, 239, 268, 317
Diseases and disorders, other than HIV/AIDS
genetic, 24-25, 28, 29, 193, 323 sickle cell disease, 19, 25, 27-28
hemophilia/coagulation disorders, 40, 176, 262
neural tube defects, 26, 29-30
phenylketonuria, 25, 27, 33, 215
Pneumocystis carinii pneumonia, 4, 31, 34, 41-42, 53, 205, 222, 276, 314, 322, 325, 360
tuberculosis, 158, 165, 253, 265, 320
see also Screening and testing, general;
Sexually transmitted diseases, other than HIV/AIDS
Disproportionate share hospitals, 65, 185, 194
District of Columbia, 42
Domestic violence, 69, 191, 211, 231, 233, 240-241, 245, 256, 273, 277
Drug abuse, see Substance abusers
Drug treatment for HIV/AIDS, 4, 216, 218, 258, 342, 365, 366
acceptance of, 241, 243, 246-247, 248, 256-257, 261, 278, 284
adolescents, 243
AIDS Drug Assistance Program, 175, 238
counseling, 49, 229, 241, 246, 247 risk of therapy, 48-49, 219, 361
Medicaid coverage, 59-60, 65, 172-173, 175, 238, 256
multiple drugs, 103, 164, 233-234, 256, 261, 280, 284
physician involvement, 261, 263, 264, 268
Pneumocystis carinii pneumonia, 4, 31, 34, 41-42, 53, 205, 222, 276, 314, 322, 325, 360
regional centers, 10-11, 123-125
risks of, 48, 49-50, 213, 219, 263, 360, 361
Ryan White CARE Act Amendments of 1996, 342
Ryan White CARE Act Programs, 175, 238, 257, 272
see also ACTG 076;
Zidovudine
E
Eastern U.S.
prenatal care trends, 74
prevalence of HIV infection, 3, 7, 38, 39, 42, 112, 204
testing, 289, 291, 297, 299, 300
Economic factors, see Cost and cost-benefit factors;
Funding;
Poverty;
Socioeconomic status
Education, see Patient education;
Professional education;
Public education
Educational attainment
testing of women, 95, 207, 287, 288, 290, 293, 296, 298, 300, 302
ELISA, see Enzyme-linked immunosorbent assays
Emergency Relief Grant Program for Eligible Metropolitan Areas, 174 -175
Employment factors
insurance, 58
job discrimination, 28, 187, 211, 248, 360, 361
Medicaid eligibility and, 64, 128, 185
Enzyme-linked immunosorbent assays, 51-52, 102, 115, 240, 264, 361 , 364
cost of, 6-7, 112, 304-305, 307
predictive value, 305-306
Epidemiology
gender factors, 3
racial/ethnic factors, 3, 38, 40-41, 204, 228, 321
African Americans, 3, 38, 40-41, 204, 228, 357
regional, 3, 38-39, 42-44, 69, 112, 204
state-level, 42-43, 44, 69, 252-253
specific states, 7, 20, 25, 42-44, 112, 204, 205, 228, 236, 260, 263, 319-321;
see also "prevalence" under specific state names
trends in transmission, general, 1, 3, 15-16, 36, 38-44, 104, 204-206, 225, 357-358, 361
urban areas, 3, 38-39, 43-44, 236, 243, 358
see also Natural history of HIV/AIDS;
Surveillance;
Transmission factors
developing countries, viii
multiple drug therapies, 103, 256
named HIV reporting by states, viii, 315, 326-327, 335-336
sickle cell disease, 29
testing of women, vii, 17, 19, 23-24, 73, 220, 321
see also Confidentiality and privacy;
Informed consent
Etiology, see Natural history of HIV/AIDS;
Transmission factors
F
Family members, 176, 194, 220, 221, 231, 262
attitudes toward HIV-positive members, 239, 240-241, 247, 248, 257 , 269, 277
domestic violence, 69, 191, 211, 231, 233, 240-241, 245, 256, 273, 277
Hispanics, 244, 248, 266-267, 269
HIV-related medical services, 72, 323, 332
see also Partner notification
Family planning
clinics, 55, 56, 92-93, 127, 160-161, 253
unintended pregnancies, viii, 12, 103, 127-128, 278
see also Contraception
Family practice practitioners, 56, 76-77, 156, 167, 193
American Academy of Family Physicians, guidelines, 72, 214-216
see also Pediatricians
Federal government, general, 4, 68, 125
see also Funding;
Legislation, federal;
specific departments and agencies
Federal Health Center programs, 178
Florida
counseling and testing, 80-81, 86-89, 124, 271-273
Medicaid contracts, 66
prevalence, 7, 42, 112, 204, 205
surveillance, 204
Food and Drug Administration, 51, 59, 130, 172, 240, 364
Foreign countries, see International perspectives
Foster care, 34, 71, 277, 281, 285, 325, 330-332, 345, 364
Funding, 4-5, 10, 57, 59-67, 121, 122-124, 155, 156, 170-188, 261-262, 283, 314
CDC state programs, 4-5, 37, 165-166, 169, 181, 197, 314, 320-321, 324, 325
Child Health Insurance Program, 59, 132, 173-174
community-based programs, 10, 56-57, 61-62, 155-169 (passim), 234, 324
counseling, 10, 16, 62, 67, 123, 124, 161, 169, 176-179 (passim), 181, 194, 196, 200, 210, 230, 237-238, 242, 249, 261, 265, 342, 343
disproportionate share hospitals, 65, 185, 194
drug treatment, 57, 256-257, 238, 256, 258, 262
AIDS Drug Assistance Program, 175, 238
Medicaid coverage, 59-60, 65, 172-173, 175, 238
HRSA projects, 5, 10, 11, 61, 123, 124, 174-178, 212-214, 261-262
local health departments, 157-158
outreach, 10, 62, 123, 158, 160, 176, 179, 181, 239, 342
phenylketonuria, 27
prenatal care, 10, 57, 122, 123, 124-125, 165, 177-178, 233, 239, 249, 265, 272
prevention, 10, 60, 62, 122, 180, 228, 234, 261, 262
primary care, 57, 60, 62, 165, 176, 177, 178, 238
research, 11, 122, 123, 124, 176-177, 237-238;
see also National Institutes of Health
Ryan White CARE Act of 1990, 1
Ryan White CARE Act Amendments of 1996, 1, 10, 123, 342-344, 346
Ryan White CARE Act Programs, 10, 123, 124, 174-177, 181, 195, 211 , 272
sickle cell disease, 28
specialty care, 57, 60-61, 62, 169, 279
state programs, federal funding criteria, 1, 4-5, 10, 16-17, 57,59, 61, 122-123, 125-126, 173, 175, 177, 181, 343-346
testing, general, 1, 16, 200, 210, 315, 342, 343
urban areas, 174-175
see also Block grants;
Contracts and contracting; Insurance;
Managed care;
Medicaid;
Ryan White CARE Act Programs
G
Gender factors
counseling, 260
domestic violence, 69, 191, 211, 231, 233, 240-241, 245, 256, 273, 277
epidemiology, 3
prevention, male role, 233, 281
service provision, general, 214, 231
sexually transmitted disease clinics, 162
Geographic factors, see Regional factors;
Rural areas;
State-level factors;
Urban areas
Georgetown Law Center, 19
Georgia, 75, 76-77, 86-87, 92-96
Government, see Federal government;
Local government;
State government
Grants, see Funding
Gynecologists, see Obstetricians/gynecologists
H
Health Care Financing Administration (HCFA), 11, 124, 196, 218, 229 -230
Health care professionals, 56, 72, 254
adolescents' providers, 131
attitudes of, 21, 32, 75, 76-85, 198-199, 209, 233-234, 242, 281, 282, 283-284
counseling, 32, 75, 76-85, 117, 193, 200, 206, 213, 226, 237, 239, 242, 243, 281
testing and counseling, surveys, 76-85
see also Confidentiality and privacy;
Nurse midwives;
Nurse practitioners;
Physicians;
Prenatal care;
Professional education
Health care services, 4-5, 18, 54-67, 100-104, 128-129, 211-212
access to, 5, 9, 12-13, 14, 17, 56-57, 102, 212, 263-266, 273, 277 -279
correctional institutions, 13, 20, 55, 56-57, 129-130, 164, 176, 223-224, 253, 262, 273, 277
financial barriers, 5, 13, 63-65, 128, 243;
see also Uninsured persons;
Welfare reform
pregnancy as opportunity, viii
regional centers, 10-11
transportation assistance, 102, 121, 131, 160, 212, 214, 258, 264, 278, 282
availability of, general, 54, 72, 76-95
blood donation and transfusion, 31, 40, 89, 268, 287, 317
community-based, 12, 54, 56-57, 60-61, 155-189
coordination of, 9-10, 18, 62-63, 119-121, 124, 163, 179, 180, 196
dentists and dentistry, 61, 177, 178, 214, 262
families of HIV patients, 72, 323, 332
see also Drug treatment for HIV/AIDS;
Hospitals;
Insurance;
Managed care; Prenatal care;
Primary care providers;
Specialty care;
Testing of newborns;
Testing of women
Health Insurance Portability and Accountability Act, 58, 155, 187
Health maintenance organizations (HMOs), 197, 216, 218, 221-222,236(n), 261, 263, 278-279, 287
see also Kaiser Permanente Health Plan
Health Plan Employer Data and Information Set (HEDIS), 119, 217, 222-223
Health Resources and Services Administration (HRSA), 5, 60, 174-178, 211-214, 261-262
Maternal and Child Health Services Block Grant, 158, 161, 177-178, 220-221
professional education programs, 212-213, 214
see also Ryan White CARE Act of 1990;
Ran White CARE Act Amendments of 1996;
specific bureaus
Heel-stick blood sampling, 27, 34, 38, 97, 203, 307, 319
Hemophilia/coagulation disorders, 40, 176, 262
family factors, 244, 248, 266-267, 269
patient vignette, 247-248
testing of women, 34, 87, 89, 207, 218, 226, 244-245, 266, 288, 290 , 293, 296, 298, 300, 302
Historical perspectives, 5, 17-18
diagnosis trends, 1
prenatal care trends, 74
screening and testing, general, 21, 25, 26-30, 31-32, 34, 190-191, 313-340
transmission trends, general, 1, 3, 7, 15-16, 36, 38-44, 104, 108, 204-206, 225, 357-358, 361
HIV Early Intervention Services, 176
HIV Programs for Children, Youth, Women and Families, 10-11, 123
Home care, 61, 157, 169-170, 173, 175, 212, 238, 258
testing, 169-170
Homeless persons, 13, 55, 130, 131, 160, 176, 178, 179, 211, 243, 244, 263, 277, 319
Homosexuality, 31, 268, 316-317
Hispanic culture, 266
sex with bisexual males, 40, 260
Hospitals, 55, 82-83, 92-95, 159, 262
disproportionate share hospitals, 65, 185, 194
Human rights, see Ethical issues
I
Idaho, 69
Immigrants, 56, 103, 117, 130, 132, 240, 242, 244-245, 265-266, 272 , 317
patient education materials, 71, 218, 249
testing of women, 56, 63, 64, 103, 117, 128, 130, 132, 245
welfare/Medicaid reform, 63, 64, 128, 132, 172, 183, 184, 233, 244 , 245, 272
see also Hispanics
Immigration and Naturalization Service, 64, 184, 244, 283
see also Diagnosis and diagnostic tools;
Enzyme-linked immunosorbent assays ;
Western blot tests
Income, see Poverty;
Socioeconomic status
Informed consent, 23, 72, 73, 77, 81, 110, 111, 120, 193, 196, 254 , 271, 279, 321, 322-323, 334, 363, 364
adolescents, 243
refusal, documentation of, 24, 71, 97, 110, 193
Injection drug users, 3, 38, 39, 40, 99, 126-127, 204, 223-224, 239 , 241-242, 260, 273, 286-287, 292, 316, 317, 320, 335, 360, 361,363
patient vignette, 246-247
rapid tests, 13
sex with, 3, 38, 39, 40, 126-127, 273
Insurance, 4, 54, 57-60, 128, 171-172, 187
accountability, 8, 62-63, 65, 89, 187
American Association of Health Plans, 221-222
community-based care, 160, 165
discrimination by insurers, 58, 187, 195, 207
Ryan White CARE Act Amendments of 1996, 11, 342, 345-346
employment-based, 58
Health Insurance Portability and Accountability Act, 58, 155, 187
immigrants, 245
PHS guidelines, 171
Social Security Disability Insurance, 60, 173
state law, discontinuation of coverage, 17, 345-346
universal testing, 7-8
see also Health maintenance organizations;
Managed care;
Medicaid;
Uninsured persons
International perspectives, 39, 111
J
Jails,
see also Correctional institutions
Joint Commission on Accreditation of Health Care Organizations, 196 , 217
K
Kaiser Permanente Health Plan, 86-87, 90-91, 116, 117, 152, 222
Kansas, 69
L
Medicaid managed care contracts, 8-9, 14, 18, 66, 118-119, 133, 169
patient education materials, 71, 218, 249
immigrants, 56, 103, 117, 130, 132, 240, 244-245, 248, 265-266, 272
welfare reform, 63, 64, 128, 233
insurance, discrimination, 58, 187, 195
malpractice, 6, 24, 29, 103, 111-112, 115, 195, 249, 336
undocumented persons, 13, 103, 184, 240, 244, 245, 263, 272
see also Confidentiality and privacy;
Discrimination;
Ethical issues;
Informed consent
Legislation, federal, 5
Americans with Disabilities Act, 155, 187, 195
Balanced Budget Act of 1997, 64, 65, 169, 185
Health Insurance Portability and Accountability Act, 58, 155, 187
National Sickle Cell Anemia Control Act, 28
Personal Responsibility and Work Opportunity Reconciliation Act of 1996, 63-64, 183, 184
Public Health Service Act, 161, 178
study at hand, mandate, vii, 17, 68, 346
see also Ryan White CARE Act of 1990;
Ryan White CARE Act Amendments of 1996;
Social Security Act
Legislation, state, 5, 19, 23, 231-232
counseling, 1, 15, 66, 68, 69, 70, 74-75, 91, 106, 107, 108, 114, 196, 198, 210, 217, 218, 223, 227, 228, 232, 236, 239, 242, 265,271
PCP prophylaxis, 34
substance abusers, 30, 31, 128-129, 209
testing, 1, 6, 15, 18, 25, 26, 27, 28, 30, 32, 34, 66, 68, 69, 83, 91, 114, 210, 218, 228, 254, 261, 264-265, 271, 282
mandatory newborn testing, viii, 19, 71, 195, 197-200, 232, 236, 245-246, 248, 313-340
Local factors, other, see Community-based factors
health departments, 157-158
Louisiana
counseling and testing, 74, 82-83, 88-89
surveillance, 204
ZDV use, 98-99
Low-income status, see Poverty
M
Maine, 86-87
Malpractice, 6, 24, 29, 103, 111-112, 115, 195, 249, 336
Managed care, 56, 63, 65-66, 67, 176, 185-186, 209, 218, 220, 221-223, 241-242
community-based services, 155, 156, 159, 168-169
cost factors, 106
counseling, non-Medicaid, 242
discrimination, 58
hospitals, 159
Medicaid, 11, 14, 18, 60, 65-66, 104, 155, 156, 159, 168-169, 172-173, 185, 186, 210, 230, 262, 336
contracts, 8-9, 14, 18, 66, 118-119, 133, 169
counseling, 66, 67, 119, 196, 209, 210, 230
specialty care, 65, 66, 104, 262
state role, 65-66, 119, 185, 195
patient notification and followup, 102
poor persons, access to non-Medicaid services, 186
uninsured persons, 66
see also Health maintenance organizations
Marriage and marital status
marriage licenses, 27, 28, 248
testing of women, 28, 286, 288, 290, 296, 298, 300
see also Domestic violence;
Partner notification
Massachusetts, 80-81, 116, 221, 225-226, 318
Mass media, 121, 225, 321, 326, 330, 331, 332, 333-334
Maternal and Child Health Bureau, 11, 60, 177-178
Maternal and Child Health Services Block Grant, 158, 161, 177-178, 184, 211, 218, 220-221
Maternal serum alpha-fetoprotein, 25-26, 29
see also alpha-fetoprotein
Medicaid, 4, 59-60, 104, 120, 172-173, 184-185, 238, 336
Child Health Insurance Program, 59, 132, 173-174
community-based services, 155, 156, 159, 160, 165
employment and eligibility, 64, 128, 185
performance measures and, 118
prenatal care trends, 74
reform of, 63-65, 128, 183-185
Balanced Budget Act of 1997, 64, 65, 169, 185
managed care, 11, 14, 18, 60, 65-66, 104, 155, 156, 159, 168-169, 172-173, 185, 186, 210, 230, 262, 336
contract language, 8-9, 14, 18, 66, 118-119, 133, 169
counseling, 66, 67, 119, 196, 209, 210, 230
specialty care, 65, 66, 104, 262
state role, 65-66, 119, 185, 195
state role, 59-60, 63-64, 104, 128, 172-174, 185
managed care, 65-66, 119, 185, 195
Membrane ruptures, 47, 51, 72, 194, 279
Mental health care, 160, 163, 176-177
psychotherapy for HIV-positive patients, 4, 52, 71, 121, 192-193, 217, 224
substance abuse treatment, 4, 51, 55, 57, 127, 128-129, 160, 164-165, 172, 180, 184
Michigan
counseling and testing, 69, 74, 75, 78-79, 84, 86-89
surveillance, 204
Midwest U.S., 39, 204, 289, 291, 297, 299, 300
Midwives, see Nurse midwives
Migrant workers, 56, 160, 176, 178, 211, 262, 265
Minnesota
counseling and testing, 82-83, 84
ZDV use, 98-99
Minority groups, see Racial/ethnic factors
Mississippi, 69
Missouri, 82-83
N
National Ambulatory Medical Care Survey, 167
National Cancer Institute, 233
National Committee for Quality Assurance, 8-9, 217, 222-223
National Health Interview Survey, 90-91
National Institute of Allergy and Infectious Diseases, 182
National Institute of Child Health and Human Development, 181-182
National Institute of Justice, 224
National Institutes of Health, 181-182
primary and specialty care, 62
sickle cell disease, 28
see also ACTG
National Medical Association, 72, 194, 244
National Sickle Cell Anemia Control Act, 28
National Survey of Childbearing Women, 357-358
National Survey of Family Growth, 90-91, 286-303
Natural history of HIV/AIDS, 4, 22, 45-47
AIDS development in infants/children, 37, 205
Neural tube defects, 26, 29-30
New Jersey
counseling and testing, 19, 25, 70, 74, 75, 76-77, 80-81, 88-89,114, 227-229
prevalence, 7, 43-44, 112, 204, 205, 228, 236
site visit summary, 236-251
surveillance, 204
New York City, 212
adolescents, 131
counseling and testing, 19, 34, 88-89, 92-93, 236-251
site visit summary, 236-251
ZDV use, 97-100
New York State
counseling and testing, 70, 86-87, 88-89, 231, 236-251
mandatory newborn testing, viii, 19, 71, 195, 197-200, 232, 236, 245-246, 248, 313-340
partner notification, 32
prevalence, 42, 112, 204, 205, 319-321
sickle cell disease, 28
universal testing, 7
North Carolina, 226-227
counseling and testing, 75, 82-83, 88-89, 90-93, 226-227
surveillance, 204
ZDV use, 100-101
Northeastern U.S.
prenatal care trends, 74
prevalence of HIV infection, 3, 7, 38, 39, 42, 112, 204
testing, 289, 291, 297, 299, 300
Notification, see Partner notification;
Patient notification
Nurse midwives, 76-77, 82-83, 167-168, 193, 219-220
American College of Nurse Midwives, 73, 219-220
Association of Women's Health, Obstetric, and Neonatal Nurses, 216 -218
Nurse practitioners, 55, 56, 76-77, 82-83, 117, 124, 168, 216-218, 263
ZDV use, 97
WIC, 57, 104, 162-163, 233, 261, 282
see also Breast-feeding
O
Obstetricians/gynecologists, 76-85, 156, 160, 166, 212, 215, 242, 262-263
American College of Obstetricians and Gynecologists, 1, 25, 29, 71 -72, 166, 167, 192-193
Office of Population Affairs, 60, 160
Ohio, 78-79
Oklahoma, 86-87
Oregon
counseling and testing, 75, 76-77, 84
ZDV use, 98-99
Outreach, 9, 160, 161, 230, 263
adolescents and their providers, 131, 243
funding, 10, 62, 123, 158, 160, 176, 179, 181, 239, 342
site visit summaries, 237, 257
see also Case management; Public education
P
Partner notification, 12, 31, 32, 35, 71, 170, 179, 193, 197, 215, 240, 326-327, 335-336
domestic violence and, 69, 191, 211, 231, 233
physician's involvement, 235, 322, 335
Patient education, 110, 116-117, 120
AMA guidelines, 72
community-based services, 160
foreign language, 71
state programs, 70, 71, 254, 265
telephone help lines, 70
WIC breast-feeding guidelines, 104, 233, 261, 282
ZDV use/risk factors, 48-49, 50, 96, 97, 100, 101, 210, 213, 219, 230, 233
see also Counseling
Patient notification, 6-9, 14, 16, 24-25, 109-113, 133, 215, 264, 269, 334, 345
inappropriate practices, 101-102, 231, 264, 268, 281
see also Partner notification
Pediatric AIDS Clinical Trials Groups, 62;
see also ACTG
Pediatricians, 56, 166-167, 212, 215
American Academy of Pediatrics, 1, 25, 27, 72, 166-167, 193-194,331
Pediatric Spectrum of Disease, 204, 208
Pennsylvania, 205
Performance measures, see Clinical policy performance measures
Perinatal Guidelines Evaluation Project, 204, 207, 211
Personal Responsibility and Work Opportunity Reconciliation Act of 1996, 63-64, 183, 184
Pharmacological agents, see Drug treatment for HIV/AIDS
Phenylketonuria, 25, 27, 33, 215
American Medical Association, 72-73, 191-192
counseling by, 11, 67, 72, 101, 114, 117, 166-167, 193, 195, 197, 213, 215, 228, 229, 232, 239, 241-243, 249, 263, 273, 281, 320, 324 , 327, 333
sexual behavior, discomfort with discussing, 242, 243, 281
discrimination by, 199
drug therapy, 261, 263, 264, 268
malpractice, 6, 24, 29, 103, 111-112, 115, 195, 210, 249, 336
Medicaid payment, 59
partner notification by, 235, 322, 335
testing by, 26, 56, 70, 76-85, 111-112, 113, 114, 194-195, 215, 216 -217, 228,
229, 232, 255, 262, 264, 273, 320, 326, 327, 333, 334, 335
see also Family practice practitioners;
Obstetricians/gynecologists;
Pediatricians;
Primary care providers
Placental risk factors, 46, 53
Pneumocystis carinii pneumonia, 4, 31, 34, 41-42, 53, 205, 222, 276 , 314, 322, 325, 360
agency ''turf wars,"; 221, 224
see also Advocacy
Polymerase chain reaction tests, 46, 52-53, 200, 278, 334, 362, 364
Poverty, 260
AIDS as a cause of, 184
health care access, 5, 56, 156
community-based, 156, 160, 161, 162
managed care, not Medicaid, 186
pregnancy as factor, viii
testing, 2, 34, 91, 261, 289, 291, 293, 297, 299, 300
see also Medicaid;
Welfare reform
Pregnancy Risk Assessment Monitoring System, 94-95, 204, 206, 207
Prenatal care
access to/awareness of, general, 2, 5, 12-13, 18-19, 67, 73-85, 107 , 128, 133, 158, 206-210, 231, 239, 240, 253, 255, 276, 282, 283, 304-312, 363
educational attainment, 156, 257
family attitudes, 257
immigrants, 132, 233, 244-245, 265-266, 269, 272, 283
incarcerated women, 13, 20, 55, 56-57, 129-130, 164, 176, 223-224, 253, 262, 273, 277
racial/ethnic factors, 74, 206
substance abusers, 107, 108, 128-129, 131, 206-207, 208-210, 231, 239, 277, 282
counseling during, 5, 71-73, 76-85, 107, 110, 117, 124, 192, 197-200, 201, 209, 210, 216, 217, 221, 226, 237, 239, 242, 246, 249, 253, 254-256, 258, 265, 271, 359
education of providers, 7-8, 113-115, 133
funding, 10, 57, 122, 123, 124-125, 165, 177-178, 233, 239, 249,265, 272
HIV patient treatment, 119, 120, 124, 128, 129, 216
regional centers, 10-11, 123-124
ZDV use, 5, 9, 40, 48-49, 68, 69, 97-106, 107, 109, 120-121, 126, 164, 208-209, 210, 212, 213, 277, 284, 356, 357, 362, 365
nurses, 167
see also Community-based health services;
Screening and testing, general;
Testing of women
Prevention and Treatment of Substance Abuse Block Grant, 180
Primary care providers, 102, 120-122
adolescents, 56
Bureau of Primary Health Care, 60, 160, 174, 178
community-based services, 159, 160, 163, 165, 221
coordination with HIV services, 11, 120-122, 123, 211-212, 216, 221 , 257-258
correctional facilities, 56-57
funding, 57, 60, 62, 165, 176, 177, 178, 238
HIV centers/specialists as, 104, 263
low-incidence areas, 102
model for HIV services, 127, 225
policy control, 62
professionals, provider types, 166-170
regional centers, relations with, 11, 123
Ryan White CARE Act Programs, 62, 107
state programs, 57, 60-61, 62, 165, 177, 257-258
Primary prevention, general, vii-viii, 12, 19, 64, 126-127, 321-322
correctional facilities, 14, 129
defined, 126
funding, 10, 60, 62, 122, 180, 228, 234, 261, 262
Pneumocystis carinii pneumonia, 4, 31, 34, 41-42, 53, 205, 222, 276 , 314, 322, 325, 360
regional centers, 10-11, 123-125
Ryan White CARE Act Programs, 62, 107
unintended pregnancies, viii, 12, 103, 127-128, 278
welfare reform, 184
see also Breast-feeding;
Counseling;
Prenatal care;
Screening and testing, general;
Testing of newborns;
Testing of women
Prisons, see Correctional institutions
Privacy, see Confidentiality and privacy
Private-sector role, 5
community-based services, 56, 156, 157, 160
pharmaceutical companies, 49
see also Contracts and contracting;
Insurance;
Managed care
Professional education, 18, 28, 72, 75, 116, 120, 176, 209, 249,263, 282-283
clinical practice guidelines, 8, 14, 18, 19, 49(n), 72, 75, 84-85, 115-117, 218, 225, 238, 254, 263, 279
counseling, 71, 114, 116, 177, 218, 225, 249
universal testing and, 7-8, 14, 113-115, 191-195, 196
Professional organizations, 1, 62-63, 68, 71, 114
counseling and testing policies, 7-8, 14, 71-73, 113-115, 191-195, 196, 214-223, 361
see also specific organizations
Psychotherapy, 4, 52, 71, 121, 192-193, 217, 224
Public assistance, see Medicaid;
Welfare reform
Public education, 9, 13, 28, 62, 117, 128, 212, 257, 316
community-based, 161
mass media, 225
see also Outreach;
Patient education
Public health issues, general, vii, 17
see also Screening and testing, general
Public Health Service, 349-371
clinical practice guidelines, 8, 14, 75, 84-85
counseling guidelines, vii, 1, 5, 15, 36, 38, 104, 105, 106, 110-111, 114, 115, 166, 171, 190-191, 195-197, 206, 215-234 (passim), 237, 253-254, 263, 307, 357, 358-359, 360-361, 363-364, 365-366
Florida Conference, 271-273
site visits, 239-270 (passim)
state role, 1, 6, 69-71, 74-96, 108, 114, 195-197
testing guidelines, 8, 14, 18, 36, 48, 51, 68-71, 73-108 (passim), 166, 190, 195-197, 203-234 (passim), 307, 357, 358-366
ZDV, 96-106 (passim), 107, 190, 196, 206, 208, 209, 230, 264
Public Health Service Act, 161, 178
R
Racial/ethnic factors, 17-18
access to services, 156
National Medical Association, 72, 194, 244
prevalence, 3, 38, 40-41, 204, 228, 321
sickle cell disease, 28-29, 207
testing of women, 2, 21, 28, 34-35, 74, 87, 89, 93, 95, 207, 226, 288, 290, 293, 296, 298, 300, 302
ZDV use, 97
see also African Americans;
Hispanics;
Immigrants;
White persons
Regional factors
prevalence, 3, 7, 38-39, 42-44, 69, 112, 204
prevention and treatment centers, 10-11, 123-125
testing, 7, 10-11, 112, 114, 123-124, 289, 291, 297, 299, 300
see also specific regions
Religious factors, 26, 121, 244, 255, 257-258, 269, 272, 284, 331
Reporting, 215
Centers for Disease Control, 37-38, 344, 357
prenatal care professionals, 75
named HIV reporting, viii, 315, 326-327, 335-336
Research
funding, general, 11, 122, 123, 124, 176-177, 237-238
HIV patient, opinion, 280
New York City metropolitan area, 237-238
Ryan White CARE Act Amendments of 1996, 343-344, 346
Ryan White CARE Act Programs, 181
study at hand, methodology, vii-ix, 19-20, 304-312
testing, 31, 74-96, 90-91, 286-303
see also ACTG;
National Institutes of Health;
Surveillance
State prison system, 129-130, 223-224
Risk factors, general, 209
counseling, risk-based, 81, 83, 85, 114, 215, 276
drug therapy, risks involved, 48-49, 50, 122
ZDV, 48-49, 50, 96, 97, 100, 101, 210, 213, 219, 230, 233
hemophilia/coagulation disorders, 40, 176, 262
immigrants, 245
testing, risk-based, 32-33, 81, 83, 85, 114, 276, 286-287, 292, 294 , 303
see Breast-feeding;
Injection drug users;
Primary prevention;
Sexual behavior;
Sexually transmitted diseases, other than HIV/AIDS;
Transmission factors
Rural areas, 176, 211, 212, 253, 258, 358
counseling and testing, 82-83
migrant workers, 56, 160, 176, 178, 211, 262, 265
sickle cell disease, 28
Ryan White CARE Act of 1990
community-based services, 160, 165
funding, 1
Ryan White CARE Act Amendments of 1996, 341-346
counseling, 10, 16, 230, 342-344
drug treatment, 342
excerpts from legislation, 341-346
funding, 1, 10, 123, 342-344, 346
insurance coverage discrimination, 342-344, 346
partner notification, 197
surveillance, 125, 343-344, 346
testing,
newborn testing, mandatory, viii, 16, 33-34, 123, 174, 345, 346
women, 10, 16, 123, 174, 230, 342-346
Ryan White CARE Act Programs
adolescents, 176
case management, nurses, 124, 272
community-based services, 169, 176
funding, 123, 124, 174-177, 181, 195, 211, 272
insurance coverage uninsured/underinsured, 175
primary and specialty care, 61, 107
drug treatment, 175, 238, 257, 272
research, 181
special needs population, 176-177, 211, 262
testing, women, 124, 195, 230, 272
urban areas, 174-175
S
School-based programs, 56, 61, 62, 163-164, 180
Screening and testing, general, 2-3, 8, 14, 21-30, 36, 62, 178, 316 -324
community-based programs, 56-57, 155, 157, 160
genetic, 24-25, 28, 29, 193, 323
historic perspectives, 21, 25, 26-30, 31-32, 34, 190-191, 313-340
pregnancy testing, 161;
see also Testing of women
principles of, 22-24
screening, defined, 22, 24-25, 375
completely mandatory, 24
conditionally mandatory, 24
non-directive patient choice, 24
routine with notification, 6, 24
routine without notification, 24
substance abuse, testing for, 30, 49
see also Case finding;
Confidentiality and privacy;
Patient notification;
Testing of newborns
Sex-based influences, see Gender factors
Sexual behavior, 38, 40, 204, 209, 260, 280, 292, 295, 324, 360,361, 363
Hispanic culture, 266
immigrants, taboos, 245
injection drug users, sex with, 3, 38, 39, 40, 126-127, 273
physicians' discomfort with discussing, 242, 243, 281
see also Homosexuality
Sexually transmitted diseases, other than HIV/AIDS, 120, 179-180, 292, 294
community-level services, 56, 131, 162-163, 255-256
primary prevention, 12
syphilis, 21, 25, 26, 35, 111, 257
see also Syphilis
Sickle cell disease, 19, 25, 27-28
counseling and testing, 21, 23, 217
stigma and taboo, 2, 6, 7, 14, 21, 28-29, 31, 32, 33, 112-113, 231 , 239, 268, 317
see also Cultural factors;
Political factors;
Racial/ethnic factors
Social Security, 173
Social Security Act, 172
Child Health Insurance Program, 59, 132, 173-174
Maternal and Child Health Services Block Grant, 158, 177-178, 184, 211, 218, 220-221
see also Medicaid;
Supplemental Security Income
Social Security Disability Insurance, 60, 173
Social workers, 163, 237, 263, 282, 326
Socioeconomic status
access to services, 156
see also Poverty
South Carolina
counseling and testing, 74, 76-77, 84, 86-89, 232, 289, 291
surveillance, 204
ZDV use, 98-99
Southern U.S., 3, 7, 39, 112, 204, 289, 291, 297, 299, 300
Special Projects of National Significance, 176-177, 211, 262
Special Supplemental Nutrition Program for Women, Infants and Children (WIC), 57, 161-162
breast-feeding guidelines, 104, 233, 261, 282
Specialty care, general, 57, 100, 102, 120, 159, 221-222, 225, 278 -279
centers for specialized HIV care, 10-11, 100, 101-104, 123-125, 255
funding, 57, 60-61, 62, 169, 279
linkage/access to, 9, 65, 119, 120-121, 124, 186, 193, 209-210, 218, 220-222, 272, 334
Medicaid managed care, 65, 66, 104, 262
professionals, provider types, 166-170
Ryan White CARE Act Programs, 62, 107
state programs, 57, 60-61, 62, 165, 177, 257-258
see also Drug treatment for HIV/AIDS;
Family practice practitioners;
Nurse midwives;
Nurse practitioners;
Obstetricians/gynecologists;
Pediatricians
SSI, see Supplemental Security Income
SSI Disabled Children's Program, 60, 64
State-Enhanced Pediatric HIV Surveillance Program, 74, 88-89, 204, 206, 207
State government, 2, 5, 18, 19, 32, 68, 180-181, 183
CDC programs, 4-5, 37, 165-166, 169, 181, 197, 314, 320-321, 324, 325
community-based programs, 158, 159, 162, 164-165, 165-166
federal funding criteria, 1, 4-5, 10, 16-17, 57, 59, 61, 122-123, 125-126, 173, 175, 177, 181, 343-346
Medicaid, 59-60, 63-64, 104, 128, 172-174, 185
managed care, 65-66, 119, 185, 195
primary and specialty care, 57, 60-61, 62, 165, 177, 257-258
professional education programs, 70, 71, 255
named HIV reporting, viii, 315, 326-327, 335-336
surveillance, 37, 38, 74, 88-89, 125, 204, 206, 207, 231, 318-319
testing
mandatory, viii, 19, 71, 195, 197-200, 232, 236, 245-246, 248, 313 -340 (passim)
PHS counseling/testing guidelines, 1, 6, 69-71, 74-96, 108, 114, 195-197
programs, other, 68, 232, 313-340
Ryan White CARE Act of 1990, 16
Ryan White CARE Act
Amendments of 1996, viii, 16, 33-34, 123, 345, 346
Ryan White CARE Act Programs, 174
See also New York State
universal, viii, 7-8, 16, 19, 71, 123, 195
women, 25, 26, 27, 28, 30, 69-71, 74-96, 108, 114, 195-197, 225-229
correctional institutions, 13, 20, 55, 56-57, 129-130, 164
legislation, 1, 6, 15, 18, 25, 26, 27, 28, 30, 32, 34, 66, 68, 69, 83, 91, 114, 210, 218, 228, 254, 261, 264-265, 271, 282
programs, other, 5, 68, 165-166, 216-217, 218, 223-229, 324
Ryan White CARE Act
Amendments of 1996, 10, 16, 123, 230, 342-346
Ryan White CARE Act Programs, 124, 174, 195, 272
substance abusers, 30, 31, 128-129
ZDV guidelines/use, 94-95, 97-101, 114, 196, 228-229
see also Funding;
Legislation, state;
specific states
State-level factors, vii
counseling, survey of providers, 75, 76-85
managed care, 185
PHS counseling/testing guidelines, implementation, 1, 6, 69-71, 74 -96, 116
PHS ZDV guidelines, implementation, 97-101
prenatal care trends, 74-85
prevalence trends, 42-43, 44, 69, 252-253
ZDV use, 94-95, 97-101, 114, 196, 228-229
see also specific states
Stigma and taboo, 2, 6, 7, 14, 21, 28-29, 31, 32, 33, 112-113, 231 , 239, 268, 317
Substance Abuse and Mental Health Services Administration (SAMHSA) , 60, 165, 177, 180
Substance Abuse, Prevention, and Treatment Block Grant, 57, 164-165
Substance abusers, vii, 3, 103, 184, 224
Hispanic culture, 266
prenatal care, use by, 107, 108, 128-129, 131, 206-207, 208-210,231, 239, 277, 282
state law, 30, 31, 128-129, 209
testing,
HIV, 30, 31, 128-129, 210, 248, 324
testing for substance abuse, 30, 49
treatment programs, 4, 51, 55, 57, 127, 128-129, 160, 164-165, 172 , 180, 184
see also Injection drug users
Supplemental Security Income, 60, 63-65, 183
Surveillance, 11, 33, 98-99, 196, 203-211, 342
defined, 22
named HIV reporting, viii, 315, 326-327, 335-336
Pregnancy Risk Assessment Monitoring System, 94-95, 204
Ryan White CARE Act Amendments of 1996, 125, 343-344, 346
state-level, 37, 38, 74, 88-89, 125, 204, 206, 207, 231, 318-319
see also Reporting;
Testing of newborns;
Testing of women
Surveillance to Evaluate Prevention, 98-99, 206, 208, 228-229
Survey of Childbearing Women, 37, 125, 208, 228
Syphilis, 21, 25, 26, 35, 111, 257
T
Telephone help lines, 70
Temporary Assistance for Needy Families, 63-64, 183
Terry Beirn Community Programs for Clinical Research on AIDS, 62
Testing, general, see Screening and testing, general
Testing of newborns, vii, 4, 17, 19, 31, 33-34
African Americans, 333
alcohol/substance abuse, 30
mandatory, 25, 71, 72-73, 191-192, 195, 233, 248, 272
funding contingent on, 10, 16, 123, 342-344, 346
Ryan White CARE Act Amendments of 1996, viii, 16, 33-34, 123, 174, 345, 346
see also New York State
patient vignettes, 247
phenylketonuria, 25, 27, 33, 215
PHS/professional organization guidelines, 68, 71-73, 193
professional education on, 7-8, 14, 113-115, 191-195, 196
screening, defined, 22, 24-25, 375
completely mandatory, 24
conditionally mandatory, 24
non-directive patient choice, 24
routine with notification, 6, 24
routine without notification, 24
state government, 25, 30, 34, 38, 69, 195-197
mandatory, viii, 19, 71, 195, 197-200, 232, 236, 245-246, 248, 313 -340 (passim)
programs, other, 68, 232, 313-340
Ryan White CARE Act of 1990, viii, 16, 33-34, 123, 174, 345, 346, 357, 361, 363
universal, 72, 109, 342-346 (passim)
urban areas, 315-316
voluntary, 27, 72, 123, 272, 330, 332, 342-346 (passim), 357, 361, 363
see also Diagnosis and diagnostic tools;
Screening and testing, "screening, defined"
Testing of women, vii, 2-3, 5-6, 17, 19, 21-35, 67, 68-108, 176
acceptance/refusal of, by women, 5, 6, 14, 18-19, 21, 31, 71, 72, 77, 85, 86-89, 92-96, 105, 111, 120, 121-122, 133, 191, 207, 212, 222, 231, 233, 277, 363
documentation of refusal, 24, 71, 97, 110, 193
educational attainment and, 95, 207, 287, 288, 290, 293, 296, 298, 300, 302
informed consent, 23, 72, 73, 77, 81, 110, 111, 120, 130, 191, 193 , 196, 240, 243, 254, 267-268, 271, 279, 321, 322-323, 334, 363,364
adolescents, 243
refusal, documentation of, 24, 71, 97, 110, 193
patient vignettes, 247
site visits, 237-239, 254, 255
adolescents, 13, 130, 131-132, 117, 243-244
age factors, 87, 207, 289, 290, 293, 297, 299, 300
community-based services, 155, 157, 160-176 (passim), 179, 181
coordination of, 9-10, 18, 62-63, 119-121, 124, 131-133
confidentiality, 23, 32, 34, 35, 72, 73, 81, 83, 85, 120, 121, 122 , 194, 211, 213, 215, 217, 243, 246, 254, 256, 267, 360, 361
correctional institutions, 13, 20, 55, 56-57, 129-130, 164, 176, 223-224, 253, 262, 273, 277
ethical issues, general, vii, 17, 19, 23-24, 73, 220, 321;
see also Confidentiality and privacy;
Informed consent
financial incentives for individuals, 257
gender factors, 2, 21, 220, 240-241
home-based, 169-170
immigrants, 56, 63, 64, 103, 117, 128, 130, 132, 245
intrapartum, 13, 17, 130, 240, 249
mandatory, 24, 25, 71, 72-73, 111, 113, 125, 191-192, 226, 276-277, 306
definitional issues, 24-25
marital status and, 28, 286, 288, 290, 296, 298, 300
National Survey of Family Growth, 90-91, 286-303
PHS/professional organization guidelines, 1, 68-108 (passim), 190-197, 206, 215-234 (passim)
physician involvement, 26, 56, 70, 76-85, 111-112, 113, 114, 194-195, 215, 216-217, 228, 229, 232, 255, 262, 264, 273, 320, 326, 327, 333 , 334, 335
political factors, vii
predictive value, 305-306
professional education on, 7-8, 14, 113-115, 191-195, 196, 214-223, 361
professional organizations, 71-73, 113-115, 191-195, 214-223, 361
racial/ethnic factors, 2, 21, 28, 34-35, 74, 87, 89, 93, 95, 207, 226, 288, 290, 293, 296, 298, 300, 302
African Americans, 34-35, 74, 87, 89, 93, 95, 207, 226, 288, 290, 293, 296, 298, 300, 302
Hispanics, 34, 87, 89, 207, 218, 226, 244-245, 266, 288, 290, 293, 296, 298, 300, 302
rapid tests, 13, 52, 130-131, 239, 240, 249, 315;
see also "intrapartum" supra
regional centers, 10-11, 123-124
regional factors, 7, 10-11, 112, 114, 123-124, 289, 291, 297, 299, 300
risk-based, 32-33, 81, 83, 85, 114, 276, 286-287, 292, 294, 303
Ryan White CARE Act Amendments of 1996, 10, 16, 123, 230, 342-346
Ryan White CARE Act Programs, 124, 174, 195, 272
screening, defined, 22, 24-25, 375
completely mandatory, 24
conditionally mandatory, 24
non-directive patient choice, 24
routine with notification, 6, 24
routine without notification, 24
sexually transmitted diseases, not HIV/AIDS, 25, 26, 257
state government, 25, 26, 27, 28, 30, 69-71, 74-96, 108, 114, 195-197, 225-229
correctional institutions, 13, 20, 55, 56-57, 129-130, 164
legislation, 1, 6, 15, 18, 25, 26, 27, 28, 30, 32, 34, 66, 68, 69, 83, 91, 114, 210, 218, 228, 254, 261, 264-265, 271, 282
programs, other, 5, 68, 165-166, 216-217, 218, 223-229, 324
Ryan White CARE Act of 1990, 195
Ryan White CARE Act Amendments of 1996, 10, 16, 123, 174, 230, 342 -346
Ryan White CARE Act Programs, 124, 272
substance abusers, 30, 31, 128-129
stigma associated with testing per se, 32, 33, 255-256
substance abusers,
HIV testing, 30, 31, 128-129, 210, 248, 324
testing for substance abuse, 30, 49
universal and/or routine, 6-9, 14, 24-25, 79, 109-122, 125, 133, 190-193, 233, 255, 257, 275, 279, 281, 306-307
clinical practice guidelines, 8, 14, 18, 19, 49(n), 72, 75, 84-85, 115-117, 218, 225, 238, 254, 263, 279
see also "counseling guidelines" and "testing guidelines" under Public Health Service
urban areas, 74, 76-77, 80-81, 82-83, 88-91, 92-95, 291, 293, 297, 300
voluntary, vii, 1, 15, 24-26, 69-70, 71, 72, 73, 93-96, 111, 190-191, 193, 215, 217, 219, 233, 247, 255, 257, 276-277, 279, 287, 293, 306 , 324, 342, 343, 357, 361, 363;
see also "acceptance/refusal" supra
see also Counseling;
Diagnosis and diagnostic tools;
Partner notification;
Patient notification
Texas
counseling and testing, 69, 70, 74, 86-87, 260-270
prevalence, 20, 25, 43, 204, 205, 260, 263
South Texas site visit summary, 260-270
Therapeutic services, vii
see also Drug treatment for HIV/AIDS;
Health care services
Time factors
counseling, 5, 85, 193, 213, 217, 237, 238, 241, 263, 270
patient notification, 101
rapid tests, 13, 52, 130-131, 239, 240, 249, 315
Transfusions, see Blood donation and transfusion
Transmission factors, 18, 45-47, 307-312, 344, 357
advanced maternal HIV, 46-47, 48
age of infants and children, 37, 205
correctional settings, 13
current approaches to reduction, 17
descriptive epidemiology, 36-44
intrapartum, 4, 45, 46-47, 51, 53, 196, 358
cesarean sections, 51, 103, 233, 279
invasive procedures, 47, 51, 72, 73, 104, 233, 279
membrane ruptures, 47, 51, 72, 194, 279
ZDV use, vii, 1, 4, 15, 48, 96, 98, 99, 100, 208, 239, 278
postpartum, 4, 13, 46-47, 49, 196, 208, 358;
see also Breast-feeding
professional awareness of, 75
testing and screening, general, 2-3, 82, 310-311, 314
trends in transmission, general, 1, 3, 15-16, 36, 38-44, 104, 204-206, 225, 357-358, 361
see also Breast-feeding;
Epidemiology;
Risk factors;
Sexual behavior;
Substance abusers;
Surveillance
Transportation assistance, 102, 121, 131, 160, 212, 214, 258, 264, 278, 282
Treatment, see Drug treatment for HIV/AIDS;
Health care services
Tuberculosis, 158, 165, 253, 265, 320
U
Undocumented persons, 13, 103, 184, 240, 244, 245, 263, 272
Uninsured persons, 4, 56, 57, 64, 66, 170-171
AIDS discrimination, 58, 187, 195, 207, 345
community-based care, 156, 159, 161
disproportionate share hospitals, 65, 185, 194
managed care, 66
Ryan White CARE Act Amendments of 1996, 342, 345-346
Ryan White CARE Act Programs, 175
Unintended pregnancies, viii, 12, 103, 127-128, 278
United Kingdom, 111
adolescents, 243-244
funding, 174-175
prevalence of AIDS, 3, 38-39, 43-44, 236, 243, 358
Ryan White CARE Act Programs, 174-175
sickle cell disease, 28
testing of newborns, 315-316
testing of women, 74, 76-77, 80-81, 82-83, 88-91, 92-95, 291, 293, 297, 300
see also New York City
V
Vermont, 69
Violence, see Domestic violence
W
Washington, 86-87
Welfare reform, 4, 63-65, 128, 182-184, 210
Balanced Budget Act of 1997, 64, 65, 169, 185
community-based services, 155, 169
Personal Responsibility and Work Opportunity Reconciliation Act of 1996, 63-64, 183, 184
see also Medicaid;
Special Supplemental Nutrition Program for Women, Infants and Children
Western blot tests, 51, 52, 115, 264, 306, 362
Western U.S., 39, 204, 289, 291, 297, 299, 300
West Virginia, 86-87
White persons, 38, 41, 47, 74, 288, 290, 296, 298, 300, 302
WIC, see Special Supplemental Nutrition Program for Women, Infants and Children
Women Organized to Respond to Life-threatening Diseases, 101
Women's Initiative for HIV Care and Reduction of Perinatal Transmission , 176, 211, 213
Z
Zidovudine (ZDV), vii, 1, 4, 15, 31, 48-49, 68, 72, 119, 176, 229, 230, 315
acceptance/refusal of treatment, 96-100,
213, 229, 256, 261, 268, 276-277, 279, 283, 284, 307, 309
compliance with regime, 96, 107, 121-122, 208, 209, 243, 264, 269, 307, 309
adolescents, 243
age factors, other, 238
cost factors, 306
infants, 47-49, 72, 176, 253, 359
intrapartum administration, vii, 1, 4, 15, 48, 96, 98, 99, 100, 208 , 239, 278
Medicaid coverage, 172-173
patient education, 48-49, 50, 96, 97, 100, 101, 210, 213, 219, 230 , 233
PHS guidelines, 96-106 (passim), 107, 190, 196, 206, 208, 209, 230 , 264
physician knowledge of, 264
prenatal use, 5, 9, 40, 48-49, 68, 69, 97-106, 107, 109, 120-121, 126, 164, 208-209, 210, 212, 213, 277, 284, 356, 357, 362, 365
prisoners, 164
risks of use (side effects), 48-49, 50, 96, 97, 100, 101, 210, 213 , 219, 230, 233
state guidelines, 97-101, 114, 196
women with HIV-infected partners, 280
see also ACTG 076