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

awareness of, 75, 114

compliance with, 96, 107, 121-122, 208, 209, 243, 264

general, 49, 62

impact of, general, vii, 1, 4, 5, 14, 15-16, 68, 106, 128, 213, 331

Medicaid managed care, 66

rapid testing, 13, 52

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

Medicaid, 131, 244

rapid tests, 13, 130

testing of, 13, 117, 130, 131-132, 243-244

see also School-based programs

Advocacy, vii, 34, 314, 336

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

epidemiology, 39, 41, 53, 321

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



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--> 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 awareness of, 75, 114 compliance with, 96, 107, 121-122, 208, 209, 243, 264 general, 49, 62 impact of, general, vii, 1, 4, 5, 14, 15-16, 68, 106, 128, 213, 331 Medicaid managed care, 66 rapid testing, 13, 52 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 Medicaid, 131, 244 rapid tests, 13, 130 testing of, 13, 117, 130, 131-132, 243-244 see also School-based programs Advocacy, vii, 34, 314, 336 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 epidemiology, 39, 41, 53, 321 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

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--> 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 testing of women, 30, 277 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 immigrants, 244, 245 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 Block grants, 177, 180 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 counseling, 4, 52, 199-200, 213 WIC program, 104, 233, 261, 282

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--> 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 prevalence, 25, 43, 204, 205 ZDV use, 94-95 California Perinatal HIV Testing Project, 218-219 Canada, 111 Case finding, 22, 23, 249 Case management, 124, 160, 175, 179, 212, 262, 263, 272 ZDV use, 97, 212 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 reporting, 37-38, 344, 357 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 Chorioamnionitis, 46, 47, 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 Colorado, 75, 78-79, 84 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 Condoms, 266, 280, 281 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 condoms, 266, 280, 281 Hispanic culture, 266

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--> 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 cesarean sections, 103, 233 counseling, 6, 305, 306, 307 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 ELISA, 6-7, 112, 304-305, 307 general 23, 52, 81 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 defined, 22, 24, 375 drug therapy, 49, 229, 241, 246, 247 ZDV therapy, risks of, 48-49, 219, 361 family members, 22, 217 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 HRSA sites, 62, 211, 212-213 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 non-directive, 24-25, 219 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

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--> 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 managed care, 67, 241-242 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 Delaware, 80-81, 231 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 rapid tests, 13, 52, 130-131 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 racial, 2, 21 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 chorioamnionitis, 46, 47, 51 genetic, 24-25, 28, 29, 193, 323 sickle cell disease, 19, 25, 27-28 hemophilia/coagulation disorders, 40, 176, 262 hepatitis, 25, 111 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

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--> 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 state coverage, 61-62, 175 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 access to services, 156, 257 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 managed care, 65, 185 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 age factors, 39, 41, 53, 321 gender factors, 3 racial/ethnic factors, 3, 38, 40-41, 204, 228, 321 African Americans, 3, 38, 40-41, 204, 228, 357 Hispanics, 3, 38, 40-41, 204 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 Ethical issues, 220, 256, 280 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 Europe, 39, 48 F Family members, 176, 194, 220, 221, 231, 262 attitudes toward HIV-positive members, 239, 240-241, 247, 248, 257 , 269, 277

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--> counseling, 22, 217 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 immigrants, 132, 265 see also Partner notification Family planning clinics, 55, 56, 92-93, 127, 160-161, 253 counseling, 73, 127, 210, 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 ZDV use, 98-99, 100 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 pregnant women, 55, 57 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 testing, 2, 21, 220, 240-241

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--> 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 Hawaii, 76-77, 84, 86-87 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 regional centers, 11, 123 see also Ryan White CARE Act of 1990; Ran White CARE Act Amendments of 1996; specific bureaus Healthy Start, 163, 211 Heel-stick blood sampling, 27, 34, 38, 97, 203, 307, 319 Hemophilia/coagulation disorders, 40, 176, 262 Hepatitis, 25, 111 Hispanics, 244-245, 248, 266 family factors, 244, 248, 266-267, 269 patient vignette, 247-248 prevalence, 3, 38, 40-41, 204 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

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--> Homeless persons, 13, 55, 130, 131, 160, 176, 178, 179, 211, 243, 244, 263, 277, 319 Homosexuality, 31, 268, 316-317 advocacy, 34, 326 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 Illinois, 43, 94-95 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 Immunoassays, 51, 115 see also Diagnosis and diagnostic tools; Enzyme-linked immunosorbent assays ; Western blot tests Income, see Poverty; Socioeconomic status Indiana, 70, 232 Informed consent, 23, 72, 73, 77, 81, 110, 111, 120, 193, 196, 254 , 271, 279, 321, 322-323, 334, 363, 364 adolescents, 243 rapid tests, 130, 240 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 adolescents, 131, 244 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 Language factors, 5, 244 Medicaid managed care contracts, 8-9, 14, 18, 66, 118-119, 133, 169 patient education materials, 71, 218, 249 Legal issues, 23, 85, 209 immigrants, 56, 103, 117, 130, 132, 240, 244-245, 248, 265-266, 272 welfare reform, 63, 64, 128, 233 litigation, 62, 210, 326, 336 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

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--> 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 reporting, 71, 215 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 Local government, 5, 62, 183 health departments, 157-158 regional systems, 11, 124-125 surveillance, 37, 125 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 employment-based, 65, 185 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 regional systems, 11, 124-125 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 Maryland, 27, 42-43, 204, 205 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 adolescents, 131, 244 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

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--> 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 regional centers, 11, 124 state role, 59-60, 63-64, 104, 128, 172-174, 185 managed care, 65-66, 119, 185, 195 testing of women, 87, 95, 207 Medicare, 118, 159, 173 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 ZDV use, 97, 98-99 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 Montana, 75, 80-81 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 regional centers, 11, 124 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 testing and, 2, 11, 30-31 Neural tube defects, 26, 29-30 Nevada, 84-85, 98-99 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 ZDV use, 97, 98-101, 228-229 New York City, 212 adolescents, 131 counseling and testing, 19, 34, 88-89, 92-93, 236-251 prevalence, 43-44, 236 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 ZDV use, 97, 98-99, 100 North Carolina, 226-227 counseling and testing, 75, 82-83, 88-89, 90-93, 226-227 surveillance, 204 ZDV use, 100-101

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--> 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 Nutrition, 47, 56 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 Physicians, general, 55, 56 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 time limitations, 5, 241, 270 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,

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--> 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 Planned Parenthood, 56, 161 Pneumocystis carinii pneumonia, 4, 31, 34, 41-42, 53, 205, 222, 276 , 314, 322, 325, 360 Political factors, 209, 283 agency ''turf wars,"; 221, 224 testing, 23, 34, 279, 312-340 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 rural areas, 253, 255 substance abusers, 107, 108, 128-129, 131, 206-207, 208-210, 231, 239, 277, 282 cost factors, 132, 304-307 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 cultural barriers, 5, 67 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 condoms, 266, 280, 281 contracting for, 60, 165 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 rural areas, 121, 257-258 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 HEDIS, 222, 223 male role, 233, 281 Pneumocystis carinii pneumonia, 4, 31, 34, 41-42, 53, 205, 222, 276 , 314, 322, 325, 360

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--> 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 HRSA projects, 212-213, 214 state programs, 70, 71, 255 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 national, 112-113, 230 state programs, 61, 70, 117 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 Puerto Rico, 204, 205 R Racial/ethnic factors, 17-18 access to services, 156 epidemiology, 3, 40-41 National Medical Association, 72, 194, 244 prenatal care trends, 74, 206 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 state role, 11, 124-125 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 rapid tests, 13, 130-131 state systems, 71, 215, 254 named HIV reporting, viii, 315, 326-327, 335-336 Research funding, general, 11, 122, 123, 124, 176-177, 237-238 HIV patient, opinion, 280

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--> New York City metropolitan area, 237-238 regional centers, 11, 123 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 ZDV use, 48-49, 97-101, 210 see also ACTG; National Institutes of Health; Surveillance Rhode Island, 70, 80-81 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 education regarding, 71, 249 hemophilia/coagulation disorders, 40, 176, 262 immigrants, 245 placental, 46, 53 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 primary care, 121, 257-258 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 overview, viii, 1-2, 16-17 partner notification, 197 patient notification, 16, 345 research, 342-344. 246 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 counseling, 124, 177, 195 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 prisons, 176, 224 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 newborns, 30, 165, 277 testing, defined, 22, 375 see also Case finding; Confidentiality and privacy; Patient notification; Testing of newborns Sex-based influences, see Gender factors

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--> 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 testing, 25, 26, 257 see also Syphilis Sickle cell disease, 19, 25, 27-28 Social factors, 186, 209 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 children, 56, 262 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 regional systems, 11, 124-125 reporting, 71, 215, 254 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) newborns, 25, 30, 34, 38, 69, 195-197

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--> 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 rapid tests, 13, 131 testing for substance abuse, 30, 49 newborns, 30, 165, 277 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 data on, 36-38, 125-126 defined, 22 named HIV reporting, viii, 315, 326-327, 335-336 newborns, 37, 333 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 Tennessee, 69, 70 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 foster care, 34, 71, 285, 325, 330-332, 345, 364 heel-stick blood sampling, 27, 34, 38, 97, 203, 307, 319

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--> 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 rapid tests, 13, 52, 130-131 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 substance abuse, 30, 165, 277 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 rapid tests, 130, 240 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 Medicaid, 87, 95, 207 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

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--> 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 rapid tests, 13, 131 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 ZDV use, 98-99, 100 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 managed care, 67, 241-242 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 antepartum, 4, 45-46, 49, 53, 196, 358 placental, 46, 53

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--> chain of, 2, 17 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 rapid testing, 13, 130 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 Urban areas, 19-20, 123 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 ZDV use, 98-99, 100 see also New York City V Vermont, 69 Violence, see Domestic violence Virginia, 76-77, 84 W Washington, 86-87 Welfare reform, 4, 63-65, 128, 182-184, 210 AFDC, 63, 184 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 TANF, 63-64, 183 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 Wisconsin, 75, 78-79, 84 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,

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--> 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 case management, 97, 212 cost factors, 306 HRSA, 212, 213 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 research, 48-49, 97-101, 210 risks of use (side effects), 48-49, 50, 96, 97, 100, 101, 210, 213 , 219, 230, 233 state guidelines, 97-101, 114, 196 urban areas, 98-99, 100 women with HIV-infected partners, 280 see also ACTG 076