April 26, 2006

Robert S. Janssen, MD, Director
Division of HIV/AIDS Prevention
National Center for HIV, STD, and TB Prevention / Centers for Disease
Control and Prevention
Corporate Square Building 8, Room 5170
Corporate Square Boulevard
Atlanta, GA 30329

Dear Dr. Janssen:

We the undersigned, wish to acknowledge your "Dear Colleague" letter of March 2, 2006, granting funded states and community-based organizations (CBOs) a moratorium on the implementation of the CDC’s

Program Evaluation and Monitoring System (PEMS) until October 1, 2006, and to express our appreciation to you for having acknowledged the concerns of the HIV/AIDS community regarding PEMS.

We represent directly-funded sites, community-based HIV/AIDS service providers and people living with HIV and their advocacy organizations from across the nation who are concerned about the design, extensive data collection and reporting mechanisms of the proposed PEMS system. In an effort to inform the deliberations of the work group that will develop recommendations for improving PEMS, we are outlining a core set of principles and proposed solutions below that we have identified through our consultations.

We look forward to reviewing the recommendations that emerge from the work group and moving towards a system that is accurate, minimally intrusive, and respectful of the delicate relationships between prevention providers and persons at risk for, and currently living with HIV infection.

On March 9th, 2006, CHAMP submitted to you a detailed solutions-oriented document recommending improvements to PEMS. However, our core principles and proposed solutions for improving PEMS are summarized below:

• Restrict required data collection to routine program and contract monitoring. Simplify program and client-level data collection, including designating all Table I variables in version 2.0 as optional or non-required, and do not require CBOs to collect more program or client-level variables than health departments.
• Reduce the average time burden PEMS adds for CBOs in half, or no more than 33 hours per quarter. This must be verified through a documented piloting process that includes a range of different types and sizes of directly-funded CBOs.
• Provide a thorough explanation of how CDC and other Federal entities will use data collected by PEMS. This explanation must also include when and how data will be available for the use of CBOs that collect it, and additional guidance on how data collected can specifically inform program improvement.
• Do not require or encourage CBOs to record or report sensitive information on sexual behavior and/or drug use that could put people living with HIV at risk for discrimination or criminal prosecution, especially if CBOs also record client names or other identifying information. PEMS security guidelines are not currently requirements and are inadequate to provide the necessary level of protection for clients. Providing the necessary level of protection to safeguard longitudinal behavioral variables and HIV status also may present an undue burden for some organizations. In light of the significant concerns about data security and client relationship-building, it is unsafe and unwise to require universal reporting for variables that present these concerns.

Sincerely,
[Full list will be provided when final letter is received.]