Rep. Nancy Pelosi (D-CA) today led an effort to voice concern over the Centers for Disease Control's (CDC) proposed guidelines for National HIV Case Surveillance. In a letter sent to Dr. Helene Gayle, the CDC's Director of HIV, STD and TB Prevention, Rep. Pelosi and 11 California Democrats (Reps. George Miller, Maxine Waters, Lucille Roybal-Allard, Anna Eshoo, Loretta Sanchez, Tom Lantos, Lynn Woolsey, Brad Sherman, Juanita Millender-McDonald, Lois Capps and Barbara Lee) questioned the CDC's recommendation that states utilize a names-based system to track new HIV infections. The letter notes that the guidelines do not "fully discuss the diversity of research findings on HIV surveillance policy," especially research indicating names-based reporting may discourage people from testing.
California is currently debating which system of surveillance to implement, one that is names-based or one that provides a unique-identifier, a code that would be used in lieu of a name.
The letter to Dr. Gayle was sent during the public comment period. A copy of the letter is attached.
Dr. Helene Gayle, MD, MPH
National Center for HIV, STD, and TB Prevention
Centers for Disease Control and Prevention (CDC)
Technical Information and Communications Branch
Atlanta, Georgia 30333
RE: Draft Guidelines for National HIV Case Surveillance
Dear Dr. Gayle:
We are writing to express our concern about the Draft Guidelines for National HIV Case Surveillance issued by CDC in December of last year. Specifically, we recommend the guidance more fully discuss the diversity of research findings on HIV surveillance policy, and refrain from advising states which surveillance option to choose.
In March, 1998, several of us wrote Donna Shalala, Secretary of the Department of Health and Human Services, and noted our support for efforts by public health officials to improve their ability to track new HIV infections and better respond to the developing HIV epidemic. In our letter, we urged that CDC HIV surveillance guidelines then under development provide state public health officials with maximum flexibility in determining which HIV surveillance system best suits the needs of state residents.
The draft guidelines issued by CDC last month give states the option whether to use names-based or unique identifier reporting for HIV, but advise states to use names-based reporting. The guidelines reference several recent studies to support this recommendation.
As Members of Congress representing a state currently debating which HIV surveillance system to implement, we are concerned that CDC's draft Guidelines base their recommendation for names-based reporting on an incomplete reading of the current research. In fact, the research sited by CDC provides ample reason for states to choose unique-identifier systems for HIV reporting.
One study cited by the CDC draft Guidelines found that among persons who had not been tested for HIV, "concern about having one's name reported to the government was cited as one of the factors for not testing for 19%," of respondents. In states using named-based reporting, 35% of men who have sex with men in the survey identified name reporting to the government as one factor for not being tested. Assuming no anonymous testing was available, 61% of all respondents reported they would likely be tested for HIV if names were reported, 72% if no HIV reporting, and 73% assuming a unique-identifier surveillance system. (MMWR, vol. 47, no. 50, 12/25/98) Several other studies have found that the deterrent effect of names reporting is the greatest in groups at highest risk of HIV infection.
Given these studies documenting concerns with name-based reporting, we urge the CDC to amend its Guidelines to more fully discusses the diversity of research findings on HIV surveillance policy. And in light of these findings, we urge CDC not to recommend one surveillance system over another, but present both names-based and unique-identifier reporting as viable options.
The CDC Guidelines for National HIV Case Surveillance will be an important tool for states as they choose an HIV surveillance system. It is important that these Guidelines provide maximum flexibility to states and completely reference the relevant research concerning the potential deterrent effect of name-based reporting.
Thank you for the opportunity to provide these comments.
Nancy Pelosi George Miller Loretta Sanchez Tom Lantos Lynn Woolsey Brad Sherman Lois Capps Barbara Lee Lucille Roybal-Allard Juanita Millender-McDonald Maxine Waters Anna Eshoo
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