8
Maximizing the Utility of the HIV Infection Listings

Previous chapters identified ways to redesign the HIV Infection Listings, with the goal of reliably and validly identifying people who are disabled in the context of current medical practice. With improvements in treatment, HIV/AIDS is now a chronic disease with improved patient longevity. The success of the HIV Infection Listings will depend on how they are used; this chapter recommends approaches to ensure its proper and effective implementation.

INTRODUCTORY TEXT

The committee determined that the introductory text (14.00 and 114.00) should be reviewed separately from the sublistings (14.08A to 14.08K and 114.08A to 114.08L), and should be revised based on changes made to them.

The introductory text precedes each body system, or section, of the Listing of Impairments and contains varying amounts of detail for each body system. The purpose of the introductory text is to clearly explain how the listings in each section are to be implemented. The intended audience is broad and includes claimants and their families, the general public, disability examiners, medical consultants, and adjudicators. Currently the introductory text for the HIV Infection Listings is woven throughout the Immune System Disorders Listing.

The committee heard from disability examiners and medical consultants that the introductory text for the HIV Infection Listings provides helpful guidance for implementing the listings. At the same time, many indicated it was confusing, disjointed, and difficult to read.



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8 Maximizing the Utility of the HIV Infection Listings Previous chapters identified ways to redesign the HIV Infection Listings, with the goal of reliably and validly identifying people who are disabled in the context of current medical practice. With improvements in treatment, HIV/AIDS is now a chronic disease with improved patient longevity. The success of the HIV Infection Listings will depend on how they are used; this chapter recommends approaches to ensure its proper and effective implementation. INTRODUCTORY TEXT The committee determined that the introductory text (14.00 and 114.00) should be reviewed separately from the sublistings (14.08A to 14.08K and 114.08A to 114.08L), and should be revised based on changes made to them. The introductory text precedes each body system, or section, of the Listing of Impairments and contains varying amounts of detail for each body system. The purpose of the introductory text is to clearly explain how the listings in each section are to be implemented. The intended audi- ence is broad and includes claimants and their families, the general public, disability examiners, medical consultants, and adjudicators. Currently the introductory text for the HIV Infection Listings is woven throughout the Immune System Disorders Listing. The committee heard from disability examiners and medical consul- tants that the introductory text for the HIV Infection Listings provides helpful guidance for implementing the listings. At the same time, many indicated it was confusing, disjointed, and difficult to read. 0

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0 HIV AND DISABILITY Reflect Changes in the Listings The committee concluded that the introductory text should be revised to reflect the changes made in the HIV Infection Listings. If the Social Se- curity Administration (SSA) decides to adopt the four categories described in Chapters 3 through 7 (i.e., CD4 ≤ 50 cells/mm3, imminently fatal or se- verely disabling HIV-associated conditions, HIV-associated conditions with- out listings elsewhere in the Listing of Impairments, and HIV-associated conditions with listings elsewhere), brief explanations of each category should be included in the introductory text. Current concepts in HIV, such as those identified in Chapter 2, also need to be incorporated into the in- troductory text. Simplify Language The current introductory text of the HIV Infection Listings is long, not well organized, and highly technical. Detailed clinical descriptions pertain mostly to disability examiners and medical consultants, while the general discussion about what qualifies as a disabling condition is most useful for patients, their families, and advocates. In an effort to make the introduc- tory text more audience appropriate and better organized, the committee suggests reorganizing the text to focus on the broad, general issues and to put the highly technical discussions into a different section. One example is the discussion of how HIV is diagnosed. A way to sim- plify this would be to adopt the Department of Health and Human Services (HHS) guidelines for diagnosing HIV infection instead of including specific diagnostic methods in the introductory text. If SSA decides it is necessary to include diagnostic methods in the introduction, it should follow the HHS guidelines. Adopting guidelines from HHS and professional societies about the management of HIV infection would allow for the introduction to stay more current, and would require fewer updates as the management of HIV infection evolves. To this end, the committee believes it would be prudent to separate the technical details from the basic overview of the HIV Infection Listings. The introductory text should be split into two pieces: general principles and technical overview. General Principles The general principles portion would be aimed at the general public and explain how the Listings are organized. A short opening section de- scribing the evolution of HIV from an almost uniformly fatal disease to a chronic, complex, largely treatable disease is needed to provide some con- text for changes made to the Listings. This section needs to:

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0 MAXIMIZING THE UTILITY OF THE HIV INFECTION LISTINGS • Acknowledge that the ability to manage HIV infection has im- proved considerably, but a number of severe complications associ- ated with HIV infection can persist and can be disabling; • Address the possible adverse effects of treatment, which can be- come chronic and disabling; and Recognize that CD4 ≤ 50 cells/mm3 is a surrogate marker of immune • function in HIV-infected individuals and can indicate chronic dis- ability and generally poor outcomes (e.g., progressive disability). Technical Overview The technical overview portion envisioned by the committee would describe specifics about the sublistings to help disability examiners, medical consultants, and adjudicators make decisions based on the HIV Infection Listings. This portion would include definitions and specific clinical details of disease manifestations. Although the language will be necessarily techni- cal, it needs to be written in a clear and simple manner. The committee recognizes the desire for the sublistings to avoid rep- etition of the introduction, but it learned that the introductory text and sublistings are not always used together. Therefore, definitions of the mani- festations identified in previous chapters should be considered for inclusion in both the sublistings and the introduction. Make User Friendly To facilitate use of the Listing of Impairments, a cross-index ought to be developed that includes hyperlinks to the Internet version of the Listings. This would make them more user friendly for the public. 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. REEVALUATING THE LISTINGS Understanding of the effects of HIV disease and its associated condi- tions and treatment is continuously evolving. As HIV-infected persons are living longer on effective treatment regimens, new sources of illness are likely to develop. For example, the effects of HIV and treatments on cardio- vascular disease and cognition are now emerging. To best meet claimants’ needs, the Listings ought to continuously reflect advances in the clinical understanding of how HIV and its treatments affect health.

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04 HIV AND DISABILITY Potential Areas for Future Revisions In future revisions, reflecting changes in the management and care of HIV infection will be important. 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 antiretroviral therapies. SSA ought to monitor these issues and others that may potentially be added to the HIV Infection Listings as appropriate. First, the long-term impacts of HIV and its treatment are still largely unknown because HIV disease did not become a chronic, manageable in- fection until combination antiretroviral therapies were widely introduced in the mid-1990s. Identifying all the effects from antiretroviral therapies could take many years as people use established and new combinations of them. Adverse effects of treatment with the potential to prevent people from performing daily activities will continue to evolve and may need to be addressed in the HIV Infection Listings. Second, as discussed in previous chapters, HIV infection affects mul- tiple body systems. With the evolution into a chronic disease with improved longevity, new disease conditions may arise that could cause severe impair- ments. For example, the impact of HIV on increasing risk of cardiovascular disease was not recognized until recently, and the impact of HIV infection on neurocognitive function with long-term survival is largely unknown. It is also possible that some impairments may also lessen or even disappear over time as new therapies are developed. Finally, because HIV is perpetually replicating and evolving, complica- tions of nonadherence and resistance is another issue to consider in future revisions of the HIV Infection Listings. Resistance can result from a number of causes, such as nonadherence and individual pharmacodynamics, which can lead to severe adverse health outcomes similar to those that occurred before widespread use of combination antiretroviral therapy. As the nature of treatment evolves, new patterns of resistance are likely to emerge. Trans- mitted resistance may also become an important factor to consider due to its potential to reduce treatment options. Revision Process SSA will need to create HIV Infection Listings that are both flexible enough and broad enough to reflect advances in HIV therapy. Although ad- ditions and revisions to the Listings will likely be needed, removal of some sublistings may also become necessary. The Listings also will need periodic revision to add, remove, or modify criteria to maintain its currency. The committee understands that a process is in place for SSA to revise all the listings. This process typically involves evaluating an entire body sys-

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0 MAXIMIZING THE UTILITY OF THE HIV INFECTION LISTINGS tem at one time and evaluating individual listings on a less frequent basis. However, given the rapidly evolving science of HIV disease and the pace of therapeutic advances in modern medicine, SSA may consider employing a more focused process that continuously assesses specific conditions. USE OF DATA Data can be very informative in making the HIV Infection Listings as effective as possible. SSA collects detailed data on each claim submitted and to an extent uses these data to inform its process. The data SSA collected about the HIV Infection Listings were very helpful to the committee in understanding how they are used. For example, the total number of allow- ances and denials for each sublisting showed that only a handful of claims were adjudicated under 14.08J in 2009, bringing into question the need to include it in a revision of the Listings. Patterns in the data also indicate that Pneumocystis pneumonia (PCP) infection accounts for more than 20 percent of all HIV allowances since 1999. Because PCP can now generally be treated effectively, this criterion is outdated; this suggests that many claimants continue to qualify for disability based on a history of ever having had PCP and not necessarily on current ability to work. Specific data about the number of allowances that equal each sublisting could also be used to determine which sublistings may require modifica- tion. For instance, nearly half of 14.08K allowances medically equaled the Listing, suggesting it may be too narrow or out of date. Other analyses of equals allowances could reveal that a condition not in that listing is becom- ing increasingly prevalent. Similarly, if the number of medical–vocational allowances for a specific sublisting is high, it may indicate that the sublist- ing is too strict, forcing cases that should be allowed in Step 3 (the Listings Step) to be decided in the more time intensive and costly Steps 4 and 5. These data collected by SSA are key to identifying patterns that can inform the relevancy of the Listings and can provide a framework for revisions. Currently, SSA’s data are not available for public use. Making deidenti- fied data publicly accessible and available for relevant analysis could result in improved timeliness and applicability of the HIV Infection Listings. The process of making these deidentified data accessible for improved scholar- ship could follow a process similar to that of the Centers for Medicare and Medicaid Services or the National Institutes of Health. 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 b. Making data more widely accessible for outside analysis to better inform their currency and efficiency.

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0 HIV AND DISABILITY INFORMATION: MEDICAL RECORDS AND SSA DISABILITY FORMS 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 health professionals. Although most information used at the Listings Step is found in the medical record, this information is not always complete or of high enough quality to ad- equately make a determination. The medical record is developed by health professionals primarily to follow a person’s health history, not extent of disability, but the poor quality of record keeping is part of the problem. As a result, SSA must use more resources to seek additional information. Many Disability Determination Services have developed forms specifically to supplement HIV claims so that disability examiners and medical con- sultants have adequate information at the beginning of a decision process, saving time and resources. This reflects a need for SSA’s application forms to be updated. The committee expects that the forms will be updated to reflect revi- sions to the Listings 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. ACCEPTABLE SOURCES OF INFORMATION The information that SSA uses to make its decisions often comes from a claimant’s “treating source,” which includes “acceptable medical sources” and “other sources”1 who can provide relevant information regarding a claimant’s impairment. As described in Chapter 1, “acceptable medical sources” are limited to physicians, osteopaths, optometrists, psychologists, podiatrists, and speech-language pathologists. The opinions of these clini- cians are often given controlling weight over “other sources.” “Other sources” are defined as those who can help provide supporting opinions in areas such as prognosis and physical and mental restrictions. When such sources have more meaningful and informative interactions with the claimant, these opinions receive equal weight or can outweigh those of acceptable medical sources. Overall, SSA’s regulations and rules make it seem that the opinions of “other sources” are not as important as those of the “treating source.” Other sources may not be appropriate with respect to diagnosing HIV infec- 1 Other sources are defined by SSA to “include public and private agencies; nonmedical sources such as schools, parents and caregivers, social workers and employers; and other prac- titioners such as naturopaths, chiropractors, and audiologists” (http://www.ssa.gov/disability/ professionals/bluebook/evidentiary.htm).

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0 MAXIMIZING THE UTILITY OF THE HIV INFECTION LISTINGS tion and its manifestations, but their expertise can be particularly important when assessing whether a claimant meets a sublisting with a functional requirement (e.g., ability to perform activities of daily living). The opinions of other practitioners may be more appropriate in determining the severity of a claimant’s disability, including other allied health professionals, such as advanced-practice nurses and rehabilitation counselors. When evaluating a claimant’s level of functioning and ability to work, a broader base of expertise may be needed to ensure that the most informed health professional is assessing the claim, as expressed in SSR 06-03p.2 In these situations, the opinions of other practitioners have equal or greater applicability to the disability decision than those of the professionals listed as “acceptable medical sources.” The committee concludes that SSA should consider including a wide array of licensed health professionals as accept- able medical sources (e.g., nurses, dentists, allied health professionals) for determining the functional effects of impairments. TRAINING OF DISABILITY EXAMINERS AND MEDICAL CONSULTANTS The committee recognizes that training of disability examiners and medical consultants is critical to implementing the HIV Infection Listings. Disability examiners and medical consultants are an important part of ensuring the effectiveness of the Listings and can provide critical feedback about how well the Listings are functioning. Disability examiners and medical consultants are rarely HIV specialists, but they have the most responsibility for implementing the Listings. They are challenged not only by the need to keep up to date with a quickly evolving disease, but also by large case loads that require knowledge of a wide variety of conditions and body systems. The HIV Infection Listings can only be broadly effective if they are applied consistently across the country. However, training of disability examiners and medical consultants occur at the state level and can lead to regional differences in interpretation of the Listings. Training curriculums vary by state, usually requiring an 8- to 12-week course for disability ex- aminers and an approximately 12-week process for medical consultants. Other on-the-job training often follows the formal training course. The National Association for Disability Examiners offers a voluntary certifica- tion program, and training conferences are held nationally. However, no 2 SSR 06-03p is a ruling called “Considering Opinions and Other Evidence from Sources Who Are Not ‘Acceptable Medical Sources’ in Disability Claims; Considering Decisions on Disability by Other Governmental and Nongovernmental Agencies,” which explains SSA’s policy on opinions from nonacceptable medical sources.

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0 HIV AND DISABILITY mandatory national training curriculum exists to ensure that disability examiners and medical consultants interpret listings consistently across states and regions. Training provides these personnel with the necessary background to ac- curately determine whether a claim meets or equals a listing. For example, the disability examiner/medical consultant team must be confident in its ability to interpret a listing and apply it to determine that a claimant has a limitation on activities of daily living, maintains social functioning, and completes tasks in a timely manner (the functional criteria in the current 14.08K sublisting). This information can be subjective and is not easily de- rived from the medical record. If the team is not able to accurately identify these limitations, cases that should be determined at Step 3 may unnecessar- ily progress to Steps 4 and 5, resulting in inefficiencies. By the same token, an incorrect allowance may be made at Step 3. Training on the technical details of the HIV Infection Listings and the most current advances in HIV medicine are essential to correctly interpreting and applying the Listings. As in continuing medical education, continuing training of medical examiners and disability examiners is also expected to enhance the professionalism and reduce turnover of these key personnel. RESEARCH ON FUNCTIONAL ASSESSMENT AND RETURN TO WORK As discussed in Chapter 5 and Appendix D, the committee believes as- sessment of functional capacity is necessary for identifying the severity of a person’s disability. Ideally, an objective predictive measure of HIV-related employment disability would be available to assess whether a claimant would be able to work. Such a measure could be coupled with evidence of a claimant’s medical condition to determine the severity of disability at Step 3. The current knowledge base about functioning and return to work for people living with HIV/AIDS is limited, though research is likely to expand as they live longer. Areas of needed research include (1) how medical, psychosocial, financial/legal, and vocational factors impact functional limi- tations, and (2) how well a person’s ability to function is impacted by the fit between the person and his work environment (Conyers and Braveman, 2010). Conclusive research about valid measures of functioning and return- ing to work could greatly improve the HIV Infection Listings. REFERENCE Conyers, L., and B. Braveman. 2010. HIV/AIDS and employment. Paper presented at Work- shop of the IOM Committee on Social Security HIV Disability Criteria, Irvine, CA.