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HIV and Disability: Updating the Social Security Listings
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Index
Abacavir, 79
Acceptable sources of information, 106–107
medical sources, 11, 22
Acquired immunodeficiency syndrome. See AIDS
Activities of daily living
ability to perform, 9, 35
defining, 120
Adherence. See Medication adherence
Administrative law judge (ALJ), 21
Advanced Notice of Proposed Rulemaking (ANPRM), 23–24, 148
Age factors, 34
AIDS, 1, 15
cause of discovered, 46
estimated numbers of case reports, 38
AIDS-defining conditions
cancers, 82
presenting with severe diarrhea, 144
Allowances
duration of, 84
by sublisting 14.08, 25
by sublisting 114.08, 25
Antibiotics, 66, 117
Antineoplastic therapy, 71
Antiretroviral therapy, ix, 55–56, 63, 79, 88
adherence to, x, 2, 28, 39, 65
advances in, 70–71
adverse effects of, 83
attenuated response to, x
development of combination, 53
making HIV infection manageable, 1, 33
monitoring response to, 6
resistance to, 104
Appeals process, ix, 21
Atherosclerosis, 78
Attention deficit hyperactivity disorder, 91
Autoimmune disorders, 110, 125
Azidothymidine (AZT), 36
Beck Depression Inventory, 28
Benefit amounts, and initial allowances, 17
Benton Visual Retention Test, 28
Blindness, 2n, 16n
Body mass index (BMI), 69
Brain atrophy, 94
Brain biopsy, 58
Brain growth, impaired, 94
Breastfeeding, perinatal HIV through, 87
Bronchoscopy, 56
CAL (Compassionate ALlowances), 17n, 58
California Verbal Learning Test, 28
Cancers, 1, 45, 138, 145–146.
See also individual cancers
AIDS-defining, 82
a leading cause of HIV morbidity and mortality, 77
non-AIDS-defining, 82, 158
Cardiovascular disease, xi, 7, 39, 78–79, 103, 158
a leading cause of HIV morbidity and mortality, 77
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Caregivers, 91
Categories of recommended HIV disability allowances in report, x–xii
HIV-associated conditions without Listings in other body systems, xi
HIV-associated diseases with existing Listings elsewhere, xi–xii
imminently fatal conditions, xi
low CD4 count, x–xi
CD4 cell count, 34, 47–49, 113, 129
indicating disease progression, 45–50
as an indicator of disability, x–xi, 6–7, 45–52
progression of untreated HIV infection demonstrated by, 46
Centers for Disease Control and Prevention (CDC), x, 1, 15, 29, 33, 47, 82, 96, 105
Central nervous system (CNS), lymphomas arising within, 56, 82, 148
Cervical cancer, invasive, 82
Children, defining, 2n
Children with HIV/AIDS
concepts specific to, x, 10–12, 87–99, 131–132
mood disorders, with HIV, 91
proposed disabling CD4 count ranges for children, 11
rationale for listing recommendations for pediatric patients, 92–96
specialized evaluation of cases involving, 21
survival and prognosis, 88–92
Children with HIV Early Antiretroviral Therapy trial, 90
Chronic conditions
associated with aging, 15
HIV infection as, ix, 33, 101
Chronic diarrhea, defining, 66
Chronic hepatitis, 81
Chronic inflammatory state, associated with HIV infection, 33, 78
Chronic kidney disease
including HIV-associated nephropathy, 79–80
an increasing problem for the HIV-infected, xi
Chronic pancreatitis, 147–148
Cirrhosis of the liver, 81
Collagen-vascular diseases, 81
Combined antiretroviral therapy. See Antiretroviral therapy
Committee on Social Security HIV Disability Criteria, 1–2, 29–31
charge to, 1–2, 16, 141–155
considerations for developing a Listing, 30
methods, 29–30
scope of the report, 30–31
Comorbidities of HIV, 9, 34–35
anxiety, 28, 35, 91
behavioral disorders, 35
bipolar disorder, 28, 35
cognitive dysfunction, 35
cognitive limitations, 34-35, 103
delirium, 35
drug dependence, 35
in the Listings, 83–84
major depressive disorder, 34
posttraumatic stress disorder, 35
psychiatric disorders, 35
schizophrenia, 28, 35
substance abuse, 34
Composite International Diagnostic Interview, 28
Concurrent conditions, 63
Conditions covered elsewhere in the Listings, 10, 77–84
cardiovascular disease, 10, 78–79, 84
chronic kidney disease, including HIV-associated nephropathy, 10, 79–80, 84
diabetes, 10, 80–81, 84
hepatitis, 10, 81–82, 84
list of, 10, 78, 84
malignancies not otherwise specified, 10, 82–84
Conditions currently without Listings, 9, 64–74
diarrhea, 9, 64–66, 73
distal sensory polyneuropathy, 9, 64, 66–67, 74
HIV-associated neurocognitive disorders (HAND), 9, 64, 67–69, 74
HIV-associated wasting syndrome, 9, 64, 69–70, 74, 123
Kaposi’s sarcoma, 9, 64, 70–71, 74
lipoatrophy and lipohypertrophy, 9, 64, 71–72, 74
osteoporosis, 9, 64, 72–74
Contrast-enhanced computed tomography (CT), 56, 72
“Controlling weight,” applied to treating source opinions, 22
Cross-referencing procedure in the SSA, 77, 83–84
Curcumin, 66
Current concepts in HIV/AIDS, 33–43
evolution of the epidemic, 33–36
improvements in functioning and capacity to return to work, 39–41
management of HIV/AIDS, 36–39
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Current HIV/AIDS antiretroviral drugs, 159–162
entry inhibitors, CCR5 coreceptor antagonist, 162
fusion inhibitors, 162
HIV integrase strand transfer inhibitors, 162
multiclass combination products, 159
nonnucleoside reverse transcriptase inhibitors (NNRTIs), 161
nucleoside reverse transcriptase inhibitors (NRTIs), 159–160
protease inhibitors (PIs), 161
Current HIV Infection Listings (14.08 and 114.08) of Impairments, 109–139
HIV Infection Listing, 47, 122–124, 137–139
HIV Infection Listing Introductory Text, 110–122, 125–136
Part A, 20, 109
Part B, 20, 124–125
Cytomegalovirus (CMV) disease, problems documenting, 114–115, 130
D-dimer levels, 34
Data. See Disability data
Data Collection on Adverse Events of Anti-HIV Drugs Study, 78
Death certificates, in which HIV disease was underlying cause of death, 38
Deidentified data. See Disability data
Dementia, HIV-associated, 11
Department of Health and Human Services (HHS), guidelines from, 102
Depression, 39
Developing a Listing, considerations for, 30
Developmental disorders, 11, 88, 95
Developmental milestones, loss of previously acquired or delay of, 94
Diabetes, 39, 80–81
Diagnosis, timely, 2
Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-IV-TR), 28
Dialysis, 80
Diarrhea, 65–66, 139, 142–144, 151
frequency of in clinical trials using protease inhibitor-based therapy, 144
Didanosine, 79, 147
Diphenoxylate, 66
Disability
Americans working with, 40
defining, 2, 16–17
importance of functioning in determining, 63–65
measures of, 50
surrogate markers of, 45
Disability allowances
defining pathways to, xi
permanent, xi
regular review of, xi, 73–74
Disability benefits
applying for, ix
for people with AIDS, 1–2, 15
qualifying for, 2
Disability data
deidentified, xi, 12, 105
uses of, 105
Disability Determination Services (DDSs), 21, 106
Disability evaluation decision process, ix, 16–20, 21
for adults, 2–3
appeals process, 21
for children, 3
definition of disability, 16–17
five-step sequential evaluation process, 17–20
initial decisions, 21
Disability examiners
expertise of, 24
reducing turnover in, 108
Disease progression, measures predictive of, 45
Distal sensory polyneuropathy, 8, 66–67
Drug dependence, with HIV, 35
“Drug holiday,” 117–118, 134
Drug resistance, 65
Dual X-ray absorptiometry (DEXA), 72
ELISA screening test, 112, 128
Employment, common barriers to, 40
Employment capability and HIV, literature review on, 166–183
Encephalopathy, 148, 151
Endothelial dysfunction, 78
Entry inhibitors, 36
Epstein-Barr virus (EBV), 55, 83
Ethnicity factors, 34
EuroSIDA, data from, 29, 65
Evaluation. See Sequential evaluation process
Evolution of the epidemic, 33–36
comorbidities of HIV, 34–35
HIV and aging, 35–36
pathogenesis of HIV, 34
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Fatigue, 9, 66, 111
Federal Register, 23
Finger Tapping Test, 28
Fracture Risk Assessment Tool, 72–73
French Perinatal Cohort, 90
Functional assessment of the patient with HIV/AIDS, ix, 26–29, 117–118, 133–134
categories of functional assessment, 26–27
decline in functional abilities after diagnosis, 26
importance of, 29
in the mental domain, 27
in the neurocognitive domain, 27
in the physical domain, 27
three scales of self-measurement, 28
tools to measure, 27–29, 135
Functioning
HIV infection still allowing high levels of, ix
importance in determining disability, 63–65
improvements in, 39–41
Fusion inhibitors, 36
Future revisions, potential areas for, 104
Griffiths Mental Development Test, 91
Growth disturbances, 10–11, 88–89, 94, 138–139, 151
Guidelines for the Management of Chronic Kidney Disease in HIV-Infected Patients, 79
Halstead Category Test, 28
Hamilton Depression Inventory, 28
Health care professionals, allowing to provide input into the determination process, xii, 13
Hepatitis coinfection, 67, 80–82, 146–147
Hepatocellular carcinoma, 81, 83
Highly active antiretroviral therapy (HAART), 36, 133, 141
HIV
described, 1, 15
HIV/AIDS-related illnesses and malignancies, 158
AIDS-defining illnesses and malignancies, 158
HIV-associated conditions
in the Listings, 73–74
with Listings elsewhere, 9–10, 77–86
comorbidity in the Listings, 83–84
conditions covered elsewhere in the Listings, 77–83
without Listings elsewhere, xi, 8–9, 63–76
conditions currently without Listings, 65–73
HIV-associated conditions in the Listings, 73–74
importance of functioning in determining disability, 63–65
list of, 64
HIV-associated diseases, with existing Listings elsewhere, xi–xii
HIV-associated neurocognitive disorders (HAND), 67–69
HIV-associated asymptomatic neurocognitive impairment (HIV ANI), 69
HIV-associated dementia (HAD), 54–55, 68
HIV-associated mild neurocognitive disorder (HIV MND), 68
most commonly affected domains of cognitive functioning, 68
HIV-associated wasting syndrome, 9, 64, 69–70, 74, 123, 144, 151
HIV disease
and aging, 35–36
as a disabling condition, ix
documenting and evaluating, 112–113, 129–131
listed on death certificates as underlying cause of death, 38
pathogenesis of, 34
HIV Infection Listings, ix–x, 1–2, 24–26, 51, 122–124, 137–139.
See also Introductory Text
allowances by sublisting 14.08, 25
allowances by sublisting 114.08, 25
bacterial infections, 122, 137
current, 109–139
fungal infections, 122, 137
helminthic infections, 122, 137
most and least used sublistings of 14.08, 26
principles for new, 30
protozoan infections, 122, 137
urgent need for revising, x, 1
viral infections, 122–123, 137–138
HIV Pediatric Prognostic Markers Collaborative Study, 93
HIV RNA, 46, 93
Hodgkin’s lymphoma, 83
HOPS cohort, 144
Human herpesvirus-8 (HHV-8), 55, 70
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Human immunodeficiency virus. See HIV
Human papillomavirus, 83
Hyperreflexia, 90
Hypertonicity, 90
Imminently fatal or severely disabling HIV-associated conditions, xi, 7, 53–61, 93–94
HIV-associated dementia, 7, 54–55, 59
imminently fatal or severely disabling conditions, 53–58
impaired brain growth, 94
Kaposi’s sarcoma involving the pulmonary parenchyma, 7, 55–56, 59
loss of previously acquired or delay of developmental milestones and intellectual ability, 94
multicentric Castleman’s disease (MCD), 7, 55, 59
place in the determination process, 58–59
primary central nervous system lymphomas, 7, 56, 59
primary effusion lymphoma, 7, 57, 59
progressive motor dysfunction, 94
progressive multifocal leukoencephalopathy (PML), 7, 57–59
Immune function
progressive disruption of, 15
recovery of, x
Immune reconstitution inflammatory syndrome (IRIS), 49
Immune system, generalized activation and inflammation of, 34
Immunodeficiency disorders
excluding HIV infection, 110, 126
progressive in HIV, 1
severe and advanced, 6
Immunofluorescence assay, 112, 128
Immunoglobulin G (IgG) levels, 129
Immunologic reserve, 46
Impairments. See Listing of Impairments
Indicators of disease progression, 45–50
CD4 count, 47–49
HIV-1 viral load, 49–50
mortality rates for patients with HIV infection, 48
progression of untreated HIV infection demonstrated by CD4 count and viral load, 46
Indinavir, 79
Information
“accepted medical source,” 13
credible sources of, x
from medical records and SSA disability forms, 106
Initial allowances, and benefit amounts, 17
Initial decisions, 21
Institute of Medicine (IOM), xii, 1, 16, 141
Insulin resistance, 90
Integrase inhibitors, 36
Intellectual ability, loss of previously acquired or delay of, 94
Intelligence tests, 29
Interleukin-6 levels, 34
International Classification of Disorders (ICD-10), 28
Introductory Text, 11, 101–103
definitions in, 111–112, 126–127
general principles in, 102–103
making user friendly, 103
maximizing the utility of the HIV Infection Listings, 101–103
reflecting changes in the Listings in, 102
simplifying language in, xi, 102
technical overview to, 103
Kaposi’s sarcoma (KS), 45, 70–71, 82
involving the pulmonary parenchyma, 55–56
Limitations
“extreme,” 19
“marked,” 19, 119–120
Lipid profiles, HIV-induced changes in, 78, 89
Lipoatrophy and lipohypertrophy, 71–72, 89
Listing of Impairments (the Listings), ix, 4–5, 8, 20
based on age-specific CD4 criteria, 92–93
functionally equaling, 19
guidance on implementing, 12
history and purpose, 20
meeting or medically equaling, 5, 18
need to cross-index, 103
proposed disabling CD4 count ranges for children, 93
setting severity standard of, 20
structure of, 20
Literature review on employment capability and HIV, 166–183
disability, 166–167
employment, 168–177
functional capacity, 178–181
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methods, 163–164
quality of life, 182–183
search strategy, 164
severity of impairment, 182–183
Loperamide, 66
Lopinavir-ritonavir, 79
Lymphocytic interstitial pneumonia/pulmonary lymphoid hyperplasia (LIP/PLH) complex, 95–96, 139, 151
Magnetic resonance imaging (MRI), 56, 58, 72
Malaise, 9, 111
Malignancies.
See also Cancers
not otherwise specified, 82–83
Malignant neoplasms. See Cancers
Malignant Neoplastic Diseases Listings, 71
Malnutrition. See Wasting syndrome;
Weight loss
Management of HIV/AIDS, 36–39.
See also Medication adherence
death certificates in which HIV disease was underlying cause, 38
estimated numbers of U.S. AIDS case reports, 38
replication cycle of HIV with stages to initiate treatment, 37
treatment side effects, 38–39
Maximizing the utility of the HIV Infection Listings, 12–13, 101–108
acceptable sources of information, 106–107
information from medical records and SSA disability forms, 106
reevaluating the Listings, 103–105
research on functional assessment and return to work, 108
training of disability examiners and medical consultants, 107–108
use of data, 105
Medical reports, obtaining, 22, 110–111
Medical sources.
See also Acceptable sources of information
acceptable medical sources, 22–23
“other medical sources,” 23
Medical-vocational factors, considering, 26
Medically determinable impairment (MDI), 3n, 16n
Medication adherence, x, 2, 28, 39, 65
challenges in, 91–92
Memory tests, 29
Mental domain, of functional assessment, 27, 121
Mesalamine, 66
Methods, 29–30, 163–164.
See also individual tests and measures used
preliminary analysis and results, 164
search strategy, 164
Morbidity, measures predictive of, 45
Mortality
improving patient longevity, 101
measures predictive of, 45
Mortality rates, 1
declining, 33
with and without therapy, 47–48
Multicenter AIDS Cohort Study, data from, 29, 80
Multicentric Castleman’s disease (MCD), 7, 55, 59
Narcotics, for pain management, 67
“Narrative” of patient, 28
National Association for Disability Examiners, 105
National Institutes of Health, 105
Nephropathy, HIV-associated, chronic kidney disease including, 79–80
Neurocognitive domain, of functional assessment, 27
Neurocognitive impairment, related to unemployment, 41
Neurological manifestations of HIV infection, 10–11, 90–91, 94, 138, 151
Non-AIDS-defining cancers, 82
Non-Hodgkin’s lymphoma, 56, 82
Nonadherence. See Medication adherence
Nonnucleoside reverse transcriptase inhibitors, 36, 83
“Nonspecific therapy,” 66
North American AIDS Cohort Collaboration on Research and Design (NA ACCORD), data from, 29, 65
Notice of Proposed Rulemaking (NPRM), 23–24
Nucleoside analogues, 36
Nucleoside reverse transcriptase inhibitors, 79, 81, 88
Nutrition for Healthy Living Cohort, 66
Occupational Performance History Interview (OPHI-II), 28
Opportunistic diseases and infections, ix–xi, 1, 8, 45, 63–65, 88, 145–146
Oropharyngeal cancer, 83
Osteoporosis, 72–73
an increasing problem for the HIV-infected, 8
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PACTG 219C cohort, 89
Pain management, 9, 67
Part A of the Listings, 20, 109
Part B of the Listings, 20, 124–125
Pathogenesis of HIV, 34
Pathways to disability allowances, defining, xi
Patient Protection and Affordable Care Act (2010), 2, 30
Pediatric Spectrum of Disease Cohort, 88
Perinatal HIV
in growing children and adolescents, complications of, 87–89
through breastfeeding, 87
Peripheral neuropathy, 66–67
Pharmacodynamics, individual, 104
Physical domain, of functional assessment, 27–28, 111
Pneumocystis pneumonia (PCP), 45, 47, 105
reclassified, 24
Polyomavirus JC, 56
Predictors, of response to treatment, x, 63
Primary central nervous system lymphomas, 56, 82
Primary effusion lymphoma (PEL), 57, 82
Profile of mood states, 28
Progression of untreated HIV infection, demonstrated by CD4 count, 46
Progressive motor dysfunction, 94
Progressive multifocal leukoencephalopathy (PML), 57–58
Protease inhibitors (PIs), 36, 79, 81, 143
Psychotropic medications, for HIV-infected youth, 91
Pubertal delay, 88
Public assistance, 15
Public comments, on revising and updating the Listings, 24
QDD (Quick Disability Determination), 17n
Rationale for listing recommendations for pediatric patients, 92–96
HIV-associated comorbidities currently with Listings, 95
HIV-associated comorbidities currently without Listings, 95
imminently fatal or severely disabling HIV-associated conditions, 93–94
Listings based on age-specific CD4 criteria, 92–93
lymphocytic interstitial pneumonia/pulmonary lymphoid hyperplasia complex, 95–96
Reconsideration, requesting, 21
Reevaluating the Listings, 103–105
potential areas for future revisions, 104
revision process, 104–105
Renal disease, end-stage, 79–80
Replication cycle of HIV, with stages to initiate treatment, 37
Residual functional capacity (RFC), 19
Resistance
transmitted, 104
in treating patients with HIV infection, 37–38
Resistance mutations, 88, 104
Return-to-work patterns, for people with HIV/AIDS, 40
Revising the HIV Infection Listing, 5–12, 23–24
concepts specific to children, 10–12
imminently fatal or severely disabling HIV-associated conditions, 7
low CD4 count, 6–7
other severe HIV-associated conditions, 7–10
Revision process, 104–105
Rifampin, 148
Rituximab, 55
Ryan White Care Act, 30–31
Scope of the report, 30–31
Self-care activities, ability to perform, 120
Self-measurement scales, 28
occupational competence, 28
occupational identity, 28
occupational setting, 28
Sequential evaluation process, five-step, 4, 17–20
Severe HIV-associated conditions, 7–10
HIV-associated conditions with Listings elsewhere, 9–10
HIV-associated conditions without Listings elsewhere, 8–9
Side effects of treatment, 38–39
Social functioning, maintenance of, 9, 66, 120
Social Security Administration (SSA), ix–x, 15, 102, 141
cross-referencing procedure within, 77, 83–84
data from, 29
disability evaluation process, 2–5, 4, 18
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maximizing the utility of the Listings, 12–13
number of initial allowances and benefit amounts, 17
responsibilities of field office staff, 21
review by appeals council, 21
Social Security Disability Insurance (SSDI), 2, 16, 20
Social stigma, 70
Stages to initiate treatment, replication cycle of HIV with, 37
Statement of work, 3, 31
Stavudine (d4T), 71, 147
Steroid treatment, 55
Structure, of the Listing of Impairments, 20
Structured treatment interruption (STI), 117–118, 134
Sublisting 14.08
allowances by, 25
comparison of current Listing to suggested revisions, 149–150
most and least used, 26
Sublisting 114.08
allowances by, 25
comparison of current Listing to suggested revisions, 152–153
Substantial gainful activity (SGA), 2n, 16n, 20
Supplemental Security Income (SSI), 2, 16
Survival and prognosis, 88–92
adherence and behavioral challenges, 91–92
complications of perinatal HIV in growing children and adolescents, 88–89
growth complications, 89
metabolic complications, 89–90
neurologic complications, 90–91
prolonged despite HIV infection, ix–x
Swiss HIV Cohort Study, 72, 81
Symptoms, consideration of, 118, 134–135
T-cells. See CD4 cell count
Tasks, completing in a timely manner, 9, 120
TERI (TERminal Illness) cases, 17n
Therapy, advances in, 15
Thymidine nucleoside reverse transcriptase inhibitors, 71
Training of disability examiners and medical consultants, 107–108
Transbronchial biopsy, 56
Transitioning, of youth to adult care providers, 92
Transmission of HIV, mother-to-child, 15
Treatment
considering effects of, 132
minimal response to, xi
predictors of poor response to, x
side effects, 38–39, 103–104
stages to initiate, replication cycle of HIV with, 37
unpredictable nature of, 73, 116–117, 132–133
Trimethoprim/sulfamethoxazole, 46, 148
U.S. Military (DoD) HIV Natural History Study, data from, 29
Veterans Aging Cohort Study, data from, 29
Viral load (VL), 6, 12, 37, 49–50, 128
progression of untreated HIV infection demonstrated by, 46
Viral resistance, development of, 39
Viremia, persistent, 65
Wasting syndrome, 9, 64, 69–70, 74, 123, 144, 151
Weight loss.
See also Wasting syndrome
involuntary, 69, 115–116, 139
Western blot assay, 112, 128
Wisconsin Card Sorting Test, 28
Women, HIV infection manifestations specific to, 115
Women’s Interagency HIV Study, 81
Work
ability to, 15, 63
defining “gainful,” 2n, 16n
defining “substantial,” 2n, 16
improvements in capacity to return to, 39–41
World Health Organization (WHO), 72
Zidovudine (ZDV), 36
Zung Depression Inventory, 28
