Most AIDS-service organizations and the Centers for Disease Control and Prevention are in agreement that better surveillance of HIV, not AIDS, is necessary to track the epidemic and facilitate more targeted prevention funding.
Activists in the 31 states not requiring name-based HIV surveillance ("mandatory names reporting") argue that only unique identifiers -not names- should be used to tract HIV infection. "Unique identifiers" (UI) are digital codes constructed from Social Security numbers and other personal information and are used in place of names to track each infected individual.
This debate has simmered for years. It's near boiling now as the CDC prepares to issue "best practice" guidelines related to the security and quality of HIV/AIDS surveillance. The guidelines are expected to be supportive of name-based HIV surveillance.
My beef with our community is how unwilling some folks have been to think out of the box and examine if our traditional opposition to name-based surveillance makes sense in 1998.
For individual states to arrive at a workable HIV surveillance systems, it's necessary to examine all of the relevant data. Much of these data have been released in the last few months, and some members of our community either ignore or misstate them. As we wrestle with the future, I hope our community negotiates a fair, rational approach to HIV surveillance by rigorously engaging these findings:
Of the 31 states currently conducting HIV name-based surveillance, 21 states provide HIV anonymous testing. Anonymous testing is available in all other states. The CDC strongly supports the option of anonymous testing. In fact, unless state laws prohibit it, the CDC requires states receiving prevention funding to offer anonymous testing.
The CDC sponsored research in states doing anonymous, name-based or unique-identifier-based testing. Over 55 percent of people surveyed in each state did not know if infected people were reported to the health department.
In the same states, among men who have sex with men, injection drug users and heterosexuals with high-risk behaviors, 18 percent overall cited having their names reported as a reason for not seeking HIV testing. Only 2 percent cited it as the main reason.
When people test positive for HIV, does the fact they must surrender their anonymity to access care deter them from doing so? There was no indication this was the case among a sample of 399 people studied.
A study of Maryland and Texas, states with unique-identifier based surveillance, indicated that 22 percent and 34 percent of the respective data were missing the Social Security number indicator which contributed to a high rate of incomplete case reporting. This compares with 74-97 percent completeness of reporting in name-based surveillance data.
Regarding unique identifier systems, several questions must be addressed.
The Maryland and Texas systems are examples of unique identifier systems. They are not necessarily optimum models. Their completeness is lacking. Also, they depend upon using multiple lists of infected people to generate the unique identifiers. An optimum model would minimize the number of lists and maximize incentives that guard their safety.
Is a safeguard system that applies to private labs, physicians, public clinics and health departments possible? Has the community evaluated what the necessary confidentiality safeguards are? Developing, implementing and evaluating another unique identifier system requires time. What is an acceptable amount of time to develop such a process?
The main reason cited by surveyed people for not wanting to test is that they are afraid to find out if they are infected. In opposing name-based surveillance, is the HIV community creating a discourse stressing what could happen (but which hasn't happened with the current AIDS name-based surveillance) which acts as a tremendous additional disincentive for people too frightened to test?
Our community brings great passion to this issue. The best policy is always a combination of the heart and head. Let's think about it.