Last week I reviewed why Texas Department of Health (TDH) believes by-name reporting of HIV-positive people will resolve their need for better data. Why has such opposition arisen to the proposal? And how does a society balance the government’s need for information against individual’s rights to privacy and safety?
HIV+ people and many of us in HIV services have deep ambivalence: We acknowledge TDH’s information needs, while recognizing the potential dangers of relinquishing anonymity. Do the benefits outweigh the risks?
HIV+ individuals worry most about disclosure, justifiably fearing AIDS discrimination. TDH itself has a stellar record in maintaining confidentiality: over a decade of name-recording full AIDS cases (but not HIV+s) without a breach. The danger lies locally with the doctor’s office, lab, or hospital, where violations do occur and can be just as damaging. And, of course, one cannot predict what use an AIDS-phobic legislature might conjure for The List, but such a draconian turn is an imaginative stretch.
Substantial belief exists that TDH has not acted to correct the deficiencies of the present system. Other states use a Unique Identifier Number (UI) system, and Washington state, a sophisticated deliverer of HIV services, is implementing one at this time. (More states use names, and serious breaches have occurred.) TDH believes it would be easier just to piggyback HIV+ name reporting onto the present system of AIDS name reporting.
Another reservation is that many people may avoid testing if they think their name will be reported, including those most at risk and most lacking empowerment. Early intervention makes a difference in managing HIV disease, in survival, and in reducing transmissions; scaring people away would defeat that purpose. TDH assures that anonymous testing will not be eliminated, but if people don’t perceive that anonymity is an option, then it effectively doesn’t exist.
Last, a common rationale for name reporting is that it will facilitate connecting the HIV+ person to education and services through a “continuum of care.” However, it is unlikely that Texas (through our legislature) will supply that continuum. And without increased resources, how would TDH track HIV+ people to ensure that connection? Why dangle a carrot that cannot be delivered?
There is the controversy, though briefly stated. The folks at TDH’s HIV Division are intelligent, dedicated, and sincere. They are determined to have name reporting. But if they do so, it will lack support from much of the involved community. Does the benefit outweigh the costs? The answer from many is a saddened “No.”
(Any views implied here are mine personally, based on 13 years of dedication to HIV work. ASA has no position on this issue.)
– Sandy Bartlett, Information/Education Coordinator
AIDS Services of Austin
ASA Info Line: 458-AIDS
This article appears in February 27 • 1998 and February 27 • 1998 (Cover).