Name Reporting for HIV+? Current System Doesn't Work

You go get an HIV test, and your name winds up on a list at the local health department and in a Texas Department of Health (TDH) computer. Subsequently, the information is disclosed to your employer or family, and your life is wrecked. Realistic or not, this scenario is envisioned by many folks as TDH explores by-name reporting of
HIV-infected people. Public meetings currently being held around Texas have been polite but sincere and often passionate.

Texas does need better information for policy decisions and to direct both current and future resources for care and prevention. The only "real" statistics deal with fully-developed AIDS cases. Information on HIV infection is largely mathematical projection. But how do you accurately project where new infections are moving when a 10-year time lag typically lies between infection and AIDS?

To gather better data, in 1994 TDH instituted a "Unique Identifier Number" system (UI) which creates a unique number for each person testing positive, encoding age, gender and race. The UI prevents someone's data from being duplicated in TDH stats.

TDH now says, however, that so many test results performed by private physicians and labs have incomplete UIs that the system's usefulness is critically impaired. Furthermore, the number does not indicate mode of transmission or the area where someone lives, and that's important information.

Complicating things, the new treatments are reducing the number of annual AIDS cases and deaths (while doing nothing to reduce new infections) that the connection between AIDS stats and the continuing spread of HIV becomes shaky, indeed. Further, the present optimism has led the public (and decision-makers like the Legislature) to disastrously mis-perceive that AIDS is over, endangering support for programs, even while the disease moves forward. Last, reporting by name would enable TDH to be sure that HIV-infected people get connected to the system of information, medical care, and partner notification.

Accurate, complete and timely data are needed to ensure successful care and programs to stem the epidemic's spread. TDH believes reporting HIV-positivity by name will provide what they need.

It's more complex, but in a nutshell, these are the arguments typically put forth in support of name reporting. Next week, we'll look at why people are worried.

- Sandy Bartlett, Information/Education Coordinator

AIDS Services of Austin