The human immunodeficiency virus (HIV) attacks the immune system, resulting in a progressive immunodeficiency that predisposes the infected person to opportunistic infections and cancers. This immunodeficiency is eventually fatal in nearly all cases in the absence of potent antiretroviral treatment. The advanced stage of HIV-induced immunodeficiency is termed acquired immunodeficiency syndrome or AIDS.
Before the availability of potent therapy in 1996, AIDS resulted in death in less than 2 years in most cases, usually as a direct result of one or more opportunistic infections or cancers. Advances in HIV research have led to the widespread availability of potent combination antiretroviral therapy, which has dramatically changed the course of HIV infection, making it a chronic, manageable disease in many people. These advances have important implications for treatment and outcomes as well as policies addressing the disease.
The U.S. Social Security Administration (SSA) responded early to the HIV/AIDS epidemic by providing disability benefits beginning in 1983 to people diagnosed with AIDS. In 1993 it adopted disability criteria for HIV (i.e., the HIV Infection Listings) as an administrative tool to more rapidly adjudicate claims. These criteria were loosely based on the Centers for Disease Control and Prevention’s (CDC’s) definition of AIDS. Despite the remarkable advances in HIV/AIDS management resulting from the availability of potent antiretroviral therapy in 1996, the HIV Infection Listings have not been substantially revised. In 2009, SSA asked the Institute of Medicine to establish the Committee on Social Security HIV Disability
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Summary
The human immunodeficiency virus (HIV) attacks the immune system,
resulting in a progressive immunodeficiency that predisposes the infected
person to opportunistic infections and cancers. This immunodeficiency is
eventually fatal in nearly all cases in the absence of potent antiretroviral
treatment. The advanced stage of HIV-induced immunodeficiency is termed
acquired immunodeficiency syndrome or AIDS.
Before the availability of potent therapy in 1996, AIDS resulted in
death in less than 2 years in most cases, usually as a direct result of one
or more opportunistic infections or cancers. Advances in HIV research
have led to the widespread availability of potent combination antiretrovi-
ral therapy, which has dramatically changed the course of HIV infection,
making it a chronic, manageable disease in many people. These advances
have important implications for treatment and outcomes as well as policies
addressing the disease.
The U.S. Social Security Administration (SSA) responded early to the
HIV/AIDS epidemic by providing disability benefits beginning in 1983 to
people diagnosed with AIDS. In 1993 it adopted disability criteria for HIV
(i.e., the HIV Infection Listings) as an administrative tool to more rapidly
adjudicate claims. These criteria were loosely based on the Centers for
Disease Control and Prevention’s (CDC’s) definition of AIDS. Despite the
remarkable advances in HIV/AIDS management resulting from the avail-
ability of potent antiretroviral therapy in 1996, the HIV Infection Listings
have not been substantially revised. In 2009, SSA asked the Institute of
Medicine to establish the Committee on Social Security HIV Disability
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HIV AND DISABILITY
Criteria to recommend improvements to the HIV Infection Listings (see
Box S-1 for the statement of work).
Throughout its discussions, the committee acknowledged that listings
cannot be viewed in a vacuum. The committee recognized that HIV/AIDS
outcomes are improved by adhering to potent antiretroviral regimens. Ad-
herence requires timely diagnosis of HIV infection, linkage and retention
in HIV care, as well as continuous access and adherence to these drugs and
to expert medical care. Recognition of this connection is critical because
Social Security benefits have a great impact on access to care and treatment
for people living with HIV/AIDS. Qualifying for Social Security disability
benefits in many states is seen as an entrée to other public programs, such
as Medicare and Medicaid and housing programs. The 00 Patient Protec-
tion and Affordable Care Act will undoubtedly affect these social programs
and others, but it is too early to determine how the Social Security disability
program will be affected. While the issues of adherence and access to care
are critical in the discussion of Social Security disability benefits, in-depth
discussion about the means by which people receive treatment and medica-
tions are outside the committee’s scope.
SOCIAL SECURITY DISABILITY EVALUATION PROCESS
SSA pays disability benefits through two programs: Social Security Dis-
ability Insurance (SSDI) and Supplemental Security Income (SSI). To qualify,
individuals must meet SSA’s definition of disability, which differs for adults
and children,1 defined as follows:
• Adults: “an inability to engage in any substantial gainful activ-
ity2 by reason of any medically determinable physical or mental
1 Social
Security considers children to be those under the age of 18.
2 Theterm substantial gainful activity (SGA) is used to describe a level of work activity and
earnings. Work is “substantial” if it involves doing significant physical or mental activities or
a combination of both. For work activity to be substantial, it does not need to be performed
on a full-time basis. Work activity performed on a part-time basis may also be substantial
gainful activity. “Gainful” work activity is work performed for pay or profit; work of a nature
generally performed for pay or profit; or work intended for profit, whether or not a profit
is realized. The amount of monthly earnings considered as SGA depends on the nature of
the person’s disability. The Social Security Act specifies a higher SGA amount for statutorily
blind persons. If a person’s impairment is anything other than blindness, earnings averaging
over $1,000 a month (for the year 2010) generally demonstrate SGA. For a statutorily blind
person, earnings averaging over $1,640 a month (for the year 2010) generally demonstrate
SGA for SSDI.
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SUMMARY
BOX S-1
Statement of Work
An ad hoc committee of medical experts will conduct a study to assist the Social
Security Administration (SSA) on HIV disability issues. The committee will review
the current medical criteria for disability resulting from HIV infection in SSA’s List-
ing of Impairments (“the Listings”) and identify areas in which the HIV Infection
Listings should be revised and updated based on current medical knowledge and
practice. Specifically, the committee will (1) conduct a comprehensive review of
the relevant research literature and current professional practice guidelines; (2)
assess the current HIV Infection Listings in light of current research knowledge
and evidence-based medical practice; and (3) produce a short report with specific
recommendations for revision of the HIV Infection Listings based on evidence (to
the extent possible) and professional judgment (where evidence is lacking).
impairment(s)3 which can be expected to result in death or which
has lasted or can be expected to last for a continuous period of not
less than 12 months.”
• Children: a child is “considered disabled if he has a medically de-
terminable physical or mental impairment which results in marked
and severe functional limitations, and which can be expected to
result in death or which has lasted or can be expected to last for a
continuous period of not less than 12 months.”
For adults applying for SSDI or SSI, SSA uses a five-step sequential eval-
uation process to determine whether a claimant is disabled (see Figure S-1).
The process is modified for children applying for SSI benefits.
At Step 1, SSA determines whether the claimant is engaging in sub-
stantial gainful activity. If not, the claim progresses to Step 2 to determine
whether the claimant has a severe impairment that significantly limits
the claimant’s ability to perform basic work activities (e.g., standing and
sitting). If the claimant is found to have a severe impairment then SSA
determines whether it satisfies the medical condition found in the Listing
of Impairments, also referred to as the Listings. Adult claims not allowed
3 A medically determinable impairment (MDI) is an impairment that results from anatomical,
physiological, or psychological abnormalities which can be shown by medically acceptable
clinical and laboratory diagnostic techniques. The MDI must be established by medical evi-
dence consisting of signs, symptoms, and laboratory findings, not only by a person’s statement
of symptoms.
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4 HIV AND DISABILITY
Yes
Step 1. Is the individual working and engaging in substantial gainful activity?
No
No Step 2. Does the individual have any impairment or combination of impairments
that significantly limits his physical or mental ability to do basic work activities?
Yes (adult) Yes (child)
Step 3. Does the individual Step 3. Does the individual
have an impairment(s) that have an impairment(s) that
No
Yes
meets or medically equals the Yes meets, or medically equals, or
severity of an impairment functionally equals the D
D listed in the Listing of severity of an impairment
E
Impairments?
E listed in the Listing of
N
Impairments?
A
N No I
L
I A
L
Step 4. Considering the
A
L
individual’s residual functional O
L
capacity (RFC) and the
W
No physical and mental demands
A
of the work he did in the past,
N
does the individual’s
C
impairments(s) prevent him
from doing past relevant work? E
Yes
Step 5. Considering the
individual’s RFC, age, No
Yes
education, and past work
experience, is he able to do
any other work?
FIGURE S-1 S ocial Security Administration five-step sequential evaluation
process.
at the Listings level proceed to Step 4 and, if necessary, Step 5, which
considers a claimant’s ability to perform past work and to do other work
in the national economy, respectively. This is assessed through a time- and
resource-intensive process based on all relevant medical and other evidence
Figure 1-1
in the case record.
For children under age 18 applying for SSI benefits, Steps 1 and 2 are
R01767
the same. At Step 3, the considerations are whether a child’s impairment
fully editable vector image
meets or medically equals a listing; if the claim does not meet or medically
equal a listing, it may be found to functionally equal a listing. To make this
determination, SSA assesses the interactive and cumulative effects of all of
the child’s impairments in terms of six domains of functioning: (1) acquiring
and using information; (2) attending and completing tasks; (3) interacting
and relating with others; (4) moving about and manipulating objects; (5)
caring for yourself; and (6) health and physical well-being.
The Listing of Impairments
To save time and resources, and to ease the administrative burden of
determining the functional capacity of each claimant, SSA adopted a list of
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SUMMARY
serious medical conditions (the Listings), which are applied at Step 3 of the
sequential evaluation process. The Listings consist of Part A (primarily for
adults) and Part B (applies to children in cases where specific considerations
are needed) and are organized into 14 body systems for adults and 15 for
children (e.g., musculoskeletal, respiratory, neurological). The listing for
each body system begins with a narrative introductory text that defines
key concepts and terms used in that body system. Each body system and
listing is identified by a number. For example, the immune system disorders
body system for Part A is Listing 14.00, and HIV infection is Listing 14.08.
The Part A HIV Infection Listing consists of 11 sublistings, from 14.08A
to 14.08K, and the Part B HIV Infection Listing consists of 12 sublistings,
from 114.08A to 114.08L.
In determining whether an individual is disabled, SSA decides whether
the claimant’s impairment meets or medically equals a listing, as explained
below:
• Meets: If the evidence in a case establishes the presence of all the
criteria required by one of the listings, then the claimant’s impair-
ment meets that specific listing; and
• Equals: If an individual is not found to meet the exact requirements
of a specific listing, he can still be found disabled if the impair-
ment is at least equal in severity and duration to the criteria of any
listed impairment, as established by the relevant evidence in the
claimant’s case record.
REVISING THE HIV INFECTION LISTING
SSA’s Listing of Impairments needs to be highly valid and reliable to ef-
ficiently and effectively recognize disabled claimants. The committee devel-
oped the following principles on which a new Listing ought to be based:
• Reflect current medical practice;
• Determine severity fairly;
• Use objective evidence, to the extent possible;
• Incorporate work-related functioning, to the extent possible;
• Be simple and easy to implement; and
• Use flexible language to account for changes in the disease and its
treatment over time.
The committee considered incorporating measures of work-related
functioning to complement declines in organ or physical functioning be-
cause many patients with HIV/AIDS show a decline in functional abilities
after diagnosis and as their diseases progress. Additionally, comorbid condi-
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HIV AND DISABILITY
tions often lead to a more disabling condition than would be predicted from
the sum of their individual effects. The committee concludes that measures
of functional capacity are critical in assessing whether patients living with
HIV/AIDS can participate meaningfully in social and employment activities.
However, upon reviewing the literature, the committee found no single test
to measure the overall functional capacity or functional limitation of an
individual with HIV. Functional limitations in adults are primarily assessed
in three domains (i.e., physical, mental, neurocognitive), but are difficult to
define or measure in a cost-effective and reproducible manner.
Without strong, valid, and easy-to-conduct functional measures, the
committee sought to identify current equivalents to the earlier CDC defi-
nition of AIDS in the context of disability. Upon evaluating the medical
literature, the committee identified four categories under which claimants
should be considered disabled: those with CD4 ≤ 50 cells/mm3; those with
imminently fatal or severely disabling HIV-associated conditions; those with
HIV-associated conditions without listings elsewhere in the Listing of Im-
pairments; and those with HIV-associated conditions with listings elsewhere
in the Listing of Impairments.
Low CD4 Count
The committee tried to identify a laboratory marker that could be used
to make decisions about functional impairment and disability, but no direct
associations were found. In the absence of such associations, the commit-
tee considered measures predictive of disease progression, morbidity, and
mortality as surrogate markers of disability.
The CD4+ T-cell (also known as CD4 cells or T-cells) count is a com-
mon standard laboratory marker of disease stage for HIV/AIDS patients.
The 1993 CDC AIDS definition was expanded to include a CD4 count
below 200 cells/mm3 as indicative of an AIDS diagnosis. Varying CD4 lev-
els indicate different levels of disease severity. A CD4 ≤ 50 cells/mm3 has
been associated with poorer response to antiretroviral therapy, increased
short-term all-cause mortality, and increased incidence of HIV-associated
illnesses. Additionally, the majority of early mortalities from those with op-
portunistic infections occur at CD4 ≤ 50 cells/mm3. Although CD4 count is
a continuous variable, CD4 ≤ 50 cells/mm3, as compared to other values,
is most indicative of severe advanced immunodeficiency. It is comparable
to the previous CDC AIDS definition based on opportunistic infections
and cancers in its ability to indicate impairment. Although other clinical
markers exist, such as HIV plasma viral load, none predict disease stage
as well as CD4 count. The HIV viral load is clinically useful in monitoring
the response to antiretroviral therapy and is a good predictor of the rate of
CD4 decline, but it is not a direct measure of disease stage.
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SUMMARY
Although widely accepted measures of HIV functional impairments are
limited, a strong relationship exists between advanced immune impairment
and clinical outcomes, including mortality. The committee concludes that a
threshold can be drawn at CD4 ≤ 50 cells/mm3 as an indicator of disability.
Because CD4 count can change in response to antiretroviral therapy, claim-
ants allowed disability under such a listing should be periodically reevalu-
ated. The committee believes 3 years would allow for a sustained response
and is the maximum practical period for SSA reassessment.
RECOMMENDATION 1. SSA should use CD4 count as an indicator
of disability. Specifically, CD4 ≤ 50 cells/mm3 is an indicator that a
claimant’s HIV infection is disabling. This allowance should be reevalu-
ated periodically by SSA.
Imminently Fatal or Severely Disabling HIV-Associated Conditions
A number of imminently fatal or severely disabling HIV-associated con-
ditions exist, even in the era of potent antiretroviral therapy. These rare but
very aggressive diseases will likely lead to death or severe disability within
a year and patients are unlikely to improve. Although much less common
than early in the epidemic, these generally untreatable conditions resemble
the AIDS-defining infections or cancers that were considered appropriate
for disability allowance in the current listing. The committee therefore con-
cludes that claimants with these conditions need to be considered separately
from other HIV infection claimants and that these conditions should be spe-
cifically included in the HIV Infection Listings as permanent disabilities.
RECOMMENDATION 2. SSA should make disability determination
allowances permanent for imminently fatal and/or severely disabling
HIV-associated conditions. These conditions may be appropriate as
compassionate allowances. These include the following:
• HIV-associated dementia;
• Multicentric Castleman’s disease;
• Kaposi’s sarcoma involving the pulmonary parenchyma;
• Primary central nervous system lymphomas;
• Primary effusion lymphoma; and
• Progressive multifocal leukoencephalopathy.
Other Severe HIV-Associated Conditions
A new set of nonimminently fatal medical conditions associated with
HIV infection has emerged in recent years. Among these are conditions
also seen in the general population, including cardiovascular disease and
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HIV AND DISABILITY
osteoporosis. In the United States, these and other HIV-associated condi-
tions have become leading causes of morbidity and mortality for persons
living with HIV infection. They can be the result of the disease itself, ad-
verse effects of HIV treatments, comorbid diseases, or from the treatment of
those conditions. Additionally, longer recognized conditions such as distal
sensory polyneuropathy also continue to be disabling.
The committee believes that the presence of an opportunistic infec-
tion or a manifestation of HIV alone is no longer sufficient to declare a
person unable to work. However, the combination of clinical severity and
limited functional capacity would allow for an appropriate determination
of disability to be made. The severity of such conditions can be assessed
by coupling objective tests of medical impairment with an evaluation of
functioning. Although few measures of functioning exist for people living
with HIV/AIDS, three measures of functioning are currently used in other
areas of the Listing of Impairments, including 14.08K of the HIV Infection
Listing: ability to perform activities of daily living; maintenance of social
functioning; and completion of tasks in a timely manner due to deficiencies
in concentration, persistence, or pace. This sublisting is the second most
frequently used sublisting, leading the committee to conclude that disability
examiners are comfortable with using these measures. In the absence of
a single, widely used measure of functioning for people living with HIV/
AIDS, the committee believes these three measures should be retained in
revisions to improve the effectiveness of the Listing.
RECOMMENDATION 3. SSA should continue to include measures
of functional capacity in the HIV Infection Listings and update these
measures with research advances.
Although opportunistic infections now occur at a lower rate, they can
still be associated with early mortality. The committee believes the major-
ity of HIV-infected people with severe opportunistic infections would be
captured by a CD4 ≤ 50 cells/mm3 listing; disability assessment could also
be triggered by poor functional status.
Some HIV-associated conditions are not addressed in other sections of
the Listing of Impairments, while others are. The committee considered the
two groups separately because if a current listing does not exist for condi-
tions that can be truly disabling, a path to receive disability benefits will
need to be identified. Having a condition with a current listing elsewhere
also provides a path to being deemed disabled in Step 3.
HIV-Associated Conditions Without Listings Elsewhere
The committee suggests that a Listing be developed that identifies poten-
tially severe HIV-associated conditions currently without listings elsewhere
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SUMMARY
in the Listing of Impairments (i.e., outside of Listings 14.08 and 114.08).
An assessment of functioning should be completed in disability claims that
present with (1) HIV-associated conditions, (2) adverse effects of treatment
for HIV or comorbid conditions, or (3) other significant, documented symp-
toms (e.g., fatigue, malaise, pain). To account for the unpredictable nature
of HIV and its treatment, allowances made under these parameters should
be considered a disability for 3 years following the last documentation of
the manifestation, adverse effects, or symptoms. This time period reflects
the fact that HIV is now generally a manageable chronic disease and that
the immunologic and functional status of many HIV claimants is likely to
improve once they are engaged in care and receiving therapy. It should be
noted that the benefits of therapy may decrease as comorbidities continue
to develop, therefore requiring regular reevaluation.
RECOMMENDATION 4. Comorbidities induced by HIV infection
or adverse effects of treatment should be considered disabling if they
markedly limit functioning in one or more of the following areas: abil-
ity to perform activities of daily living; maintenance of social function-
ing; or completion of tasks in a timely manner due to deficiencies in
concentration, persistence, or pace. This includes, but is not limited to,
the following conditions:
• Diarrhea;
• Distal sensory polyneuropathy;
• HIV-associated neurocognitive disorders;
• HIV-associated wasting syndrome;
• Kaposi’s sarcoma;
• Lipoatrophy or lipohypertrophy; and
• Osteoporosis.
Symptoms such as fatigue, malaise, and pain should also be considered
if found to limit functioning. Periodically, SSA should reevaluate claims
made using these comorbidities, consistent with the reevaluation of
other disability allowances.
HIV-Associated Conditions With Listings Elsewhere
The committee identified a number of HIV-associated conditions with
high morbidity and mortality currently represented in other sections of the
Listing of Impairments. The prevalence of these diseases is growing among
HIV-infected populations and will likely increase as these populations live
longer. HIV infection typically results in an increased risk of developing
comorbid conditions and an accelerated rate of progression to a severe or
fatal outcome. However, the literature suggests the disability caused by co-
morbid conditions is not usually clinically distinct and therefore is captured
by other disability listings.
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0 HIV AND DISABILITY
Upon assessment of the criteria currently in the Listing of Impairments
for these other conditions, the committee determined that these were appro-
priate for assessing disability for people also infected with HIV. Because the
condition is not unique, the committee concluded that current, existing list-
ings are adequate for determining disability resulting from these conditions
in HIV-infected people. Comorbid conditions should be cross-referenced to
other listings and follow the disability criteria of those listings.
RECOMMENDATION 5. SSA should cross-reference the following
HIV-associated conditions to existing listings:
• Cardiovascular disease (Listings 4.00 and 104.00);
• Chronic kidney disease, including HIV-associated nephrop-
athy (Listings 6.00 and 106.00);
• Diabetes (Listings 9.08 and 109.08);
• Hepatitis (Listings 5.05 and 105.05); and
• Malignancies (Listings 13.00 and 113.00), not otherwise
specified in the report.
Recommendation 5 differs from Recommendation 4 in two ways. First,
the duration of these allowances should follow the durations identified
by the other sublistings. However, if it is found in the literature that HIV
coinfection causes changes to the disease not effectively captured in other
disability listings, SSA may want to consider adding the disease to the HIV
Infection Listings. Second, the conditions discussed in this recommendation
are not linked to functional criteria to allow for the conditions to be easily
cross-referenced.
Concepts Specific to Children
When children receiving disability benefits reach age 18, they need to
reapply to sustain their benefits. This can result in HIV-infected children
switching from Part B (114.08) to Part A (14.08) to qualify as disabled. To
allow for a smooth transition, the committee recommends that the listing
specific to children follow as closely as possible to the Listing in Part A of
the SSA Listing of Impairments.
RECOMMENDATION 6. SSA should ensure that the HIV Infection
Listings in Parts A and B of the SSA Listing of Impairments are con-
structed similarly. However, conditions specific to children not found
in adults should also be listed in Part B, including age-appropriate CD4
and developmental criteria, neurological manifestations of HIV infec-
tion, and HIV-related growth disturbance.
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SUMMARY
Because of the differences in CD4 count and percentage and prognosis
between children and adults, Recommendation 1 needs to be modified for
children, but still easily abstracted from the medical record. Count, percent-
age, or both may be available in medical records, but recent studies indicate
that CD4 percentage adds little to the prognostic value of CD4 count. Based
on approximate equivalency for the various age groups for HIV disease
progression and death, the committee suggests the age-specific CD4 count
and percentage criteria for children shown in Table S-1.
The conditions listed in Recommendation 2 are also rare in children but
have been reported. Accordingly, a similar listing should be included in the
pediatric HIV Infection Listing. Modifications should include the replace-
ment of HIV-associated dementia with the current listing for neurological
manifestations of HIV infection (currently 114.08G). Even in the era of
combination antiretroviral therapy, neurological manifestations still present
serious challenges for children. Therefore, neurological manifestations in
children and adolescents should be maintained under Part B. In addition,
growth development is an important indicator of their health and is seen as
one of the most sensitive indicators of disease progression. Growth distur-
bance or failure to grow has been associated with rapid progression from
asymptomatic HIV infection to AIDS in children thus leading to shorter
survival. As a result, the committee concluded that the current listing for
growth disturbance (currently 114.08H) should be retained in Part B.
In Part B, the measures of functioning used in Recommendation 4
should reflect measures relevant to children—developmental and emotional
disorders of newborn and younger infants (currently paragraphs A–E of
112.12) and organic mental disorders (currently paragraphs B1–B2 of
112.02).
Although the conditions contained in Recommendation 5 are not com-
mon in children, they do occur and may become more evident as perinatally
infected children continue to age. Additionally, there are current pediatric
listings for these conditions that would be applicable. Therefore, the com-
TABLE S-1 Proposed Disabling CD4 Count Ranges
for Children
Suggested CD4 Suggested CD4
Age Range Count Percentage
≤ 500 cells/mm3
< 1 year < 15 percent
≤ 200 cells/mm3
1–5 years < 15 percent
≤ 50 cells/mm3
> 5 years N/A
NOTE: N/A = not applicable.
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HIV AND DISABILITY
mittee concludes that Recommendation 5 should also be applied to the Part
B HIV Infection Listings.
MAXIMIZING THE UTILITY OF THE LISTINGS
The success of the HIV Infection Listings relies in part on how it is
used, including general guidance for how to implement the Listings, how
to reflect future changes in clinical practice, and how to more effectively
obtain medical evidence.
Guidance for how to interpret and implement the Listings is in the in-
troductory text, which precedes each section of the Listing of Impairments.
The intended audience is broad and includes claimants and their families,
the general public, disability examiners, medical consultants, and adjudica-
tors. According to some disability examiners and medical consultants, the
introductory text helps guide interpretation of the Listings, but at the same
time it is confusing, disjointed, and difficult to read. In an effort to improve
the usability of the introductory text, the committee believes that it should
be reorganized and simplified.
RECOMMENDATION 7. SSA should rewrite the introductory text for
Parts A and B of the SSA Listing of Impairments by:
a. Simplifying and reorganizing the text to address the appro-
priate audiences; and
b. Consolidating all HIV references into one section.
It will be important to reflect changes in the management and care of
HIV infection in future revisions. Areas of particular concern for future as-
sessments include long-term adverse events of treatment; newly emerging
clinical manifestations of HIV infection; and consequences of nonadherence
and resistance to HIV therapies. SSA should monitor these issues and others
and consider adding them to the HIV Infection Listings as appropriate.
Data can be very informative in making the listings as effective as pos-
sible. SSA collects detailed data on each claim submitted and to an extent
uses the data to inform its processes. Evaluations of these data can be
important in identifying trends and patterns to help revise and inform the
relevancy of the Listings. In addition, these data currently are not available
for public use. However, making deidentified data publicly accessible for
relevant analysis could result in improving the timeliness and applicability
of the HIV Infection Listings.
RECOMMENDATION 8. SSA should use its database to maximize the
utility of the HIV Infection Listings by:
a. Collecting and analyzing data to evaluate their effectiveness;
and
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SUMMARY
b. Making data more widely accessible for outside analysis to
better inform their currency and efficiency.
The initial information SSA uses to adjudicate a claim is generally
acquired through the medical record, SSA disability application forms,
and supplemental documents submitted by other health professionals. The
committee expects that these forms will be updated to reflect Listing revi-
sions and include measures of impairment, disability, and functioning. The
forms should also be responsive to the decision-making needs of disability
examiners and medical consultants.
Finally, the information that SSA uses to make its decisions often comes
from an “acceptable medical source.”4 While “other sources”5 may have
more meaningful and informative interactions with a claimant, their opin-
ions may not receive equal weight to an “acceptable medical source.” The
current hierarchy of health professionals delineated in the determination
process may not be appropriate, especially when discussing functional abil-
ity. The committee concludes that SSA ought to consider including a wide
array of licensed health professionals as acceptable medical sources (e.g.,
nurses, dentists, allied health professionals) for determining the functional
effects of impairments.
CONCLUSION
An opportunity exists to improve the effectiveness of the HIV Infec-
tion Listings. The current Listings represent a time prior to the availability
of effective antiretroviral therapy when HIV/AIDS was defined largely by
having an opportunistic infection or malignancy resulting in a fatal out-
come in a short period of time. Widespread availability of combination
antiretroviral therapies has dramatically changed the course of HIV/AIDS.
For many individuals it is now a chronic, manageable disease that is no
longer characterized solely by opportunistic infections and malignancies.
More importantly, HIV infection no longer equates with being permanently
disabled. Instead, disability in HIV-infected claimants can now be more
precisely identified by clinical markers and specific sets of medical condi-
tions. By revising the HIV Infection Listings to better reflect current clinical
practice, SSA will be able to more accurately identify those who need Social
Security disability benefits.
4 “Acceptable medical sources” are defined by SSA to include licensed physicians, psycholo-
gists, optometrists, qualified speech-language pathologists, and psychological consultants.
5 “Other sources” are defined by SSA to include other medical sources such as naturopaths,
chiropractors, and audiologists; educational personnel; public and private social welfare
agency personnel; and nonmedical sources such as spouses, parents, and clergy.
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