The state health department since 1986 has recorded the name and vital statistics of every South Carolinian who has tested positive for HIV.
Gathering personal information was the only way officials could measure “the real, rather than the imagined, threat of AIDS,” infectious-diseases specialist Dr. Charles Bryan argued in a 1983 editorial in the Journal of the S.C. Medical Association.
Until 1986, the state had allowed anonymous testing.
The change troubled advocates, who worried that it violated privacy and was just a way for the state to keep an eye on people with HIV.
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Public-health leaders maintained that a name-based system was in the public’s best interest.
Now, though, those advocates call the system a success, because it provided a way for the state to track the course of the epidemic over the years and to plan prevention and treatment efforts.
The reporting system has also helped show federal funders how the disease has shifted largely to the Southeast, and why the money for treatment needed to follow.
“It may have been based in prejudice, but what it evolved into was one of the best surveillance systems in the United States,” said Bambi Gaddist, executive director of the S.C. HIV/AIDS Council.
The fledgling system showed how the disease spread county by county, with new diagnoses peaking in 1990 at 1,389 cases.
It showed which counties bore the greatest burden — Richland has consistently been at the top.
The system has helped show that for the past several years, the number of new HIV diagnoses has declined steadily. In 2006, there were 777.
In 2006, numbers from the reporting system also helped South Carolina and other Southeastern states make their case for a larger share of $2.1 billion from the Ryan White Care Act, by being able to show a more accurate picture of the growing epidemic in the region.
The act provides money for the care and treatment of those with HIV/AIDS who have little or no income or health insurance.
In 1986, South Carolina was one of only five states to record HIV as well as AIDS cases; an important distinction that has helped accurately calculate how many people need to served.