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 Security Administration (SSA) decides to adopt the four categories described in Chapters 3 through 7 (i.e., CD4 ≤ 50 cells/mm3, imminently fatal or severely disabling HIV-associated conditions, HIV-associated conditions without 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 introductory 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 introductory 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 simplify 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 describing the evolution of HIV from an almost uniformly fatal disease to a chronic, complex, largely treatable disease is needed to provide some context for changes made to the Listings. This section needs to:

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