Kenny Hooker is not sure he would have been tested for HIV 13 years ago, when he first learned he was infected, if his name would have been reported to the state.
"There was just so much paranoia (about the disease) back then," he said. But now having survived this long and having seen the epidemic change, Mr. Hooker agrees with the state of Georgia that some kind of human immunodeficiency virus reporting system is needed.
Mr. Hooker was among about 20 people who attended a hearing Wednesday in Augusta to discuss with health officials how the state should begin reporting HIV cases. The series of meetings across the state is expected to conclude Oct. 8 in Athens, Ga., and health officials will make a decision on how to report HIV cases by next summer.
Georgia currently is one of 11 states that does not report HIV cases, only those cases that develop into AIDS, said David Johnson, senior public health adviser in the STD/HIV section of the Division of Public Health. And with newer drugs like protease inhibitors allowing HIV patients to remain healthier longer, AIDS is no longer a good measure of how much infection is out there, Mr. Johnson said.
"AIDS cases tell us what may have occurred 8-10 years ago, not what's occurred recently," Mr. Johnson said. And with AIDS cases and AIDS deaths declining during the past few years, it could give a false sense that the epidemic is declining, he said.
"We want to go with HIV reporting because we're not in a good position to say (that) because AIDS cases have gone down that we've gotten over this hurdle," he said.
But in reporting by either name or a "unique identifier" number, the fear is people will not come in to be tested, said Frank Rumph, director of the East Central Health District that includes Augusta. That's what happens in South Carolina, which already requires doctors to report HIV cases by name to the state, Mr. Hooker said.
"There are people there who will come here to be tested because they don't want their name on a book," Mr. Hooker said.
But Mr. Johnson said experience in other states has not indicated that a significant number of people decline to come in or go to places that don't report by name.
And the information is crucial if health officials are going to make any headway against the virus, which state officials estimate has infected 25,000 to 30,000 people in Georgia. But that number is only a guess, much like the numbers Dr. Rumph faced when he was the first director of the state's AIDS program 10 years ago.
"And the estimates now are even further off than they were 10 years ago," Dr. Rumph said. "Because we're in the prevention business, we need to know the magnitude of the problem we're trying to prevent."
Both doctors and labs would be required to report either the name or the "unique identifier number," which could be a combination of date of birth and Social Security numbers. Because the state licenses labs, it gives the state a way to compel reporting and also check up on private physicians, who may not report a case at a patient's urging, Mr. Johnson said.
Still, Dr. Rumph said, the new testing system will need to prove to patients that it can deliver the data and keep it confidential.
"There is that tradeoff," Dr. Rumph said. "But our hope is as we put some security systems in place for data, the community will see it working and that will instill more confidence in the system."
Currently, only three people have access to the locked office where AIDS data is kept and the database is not accessible from a mainframe or the Internet, Mr. Johnson said. The same would apply for HIV data, he said.