Important note: Information in this article was accurate in 2006. The state of the art may have changed since the publication date.
Bay Windows - April 20, 2006
Ethan Jacobs, ejacobs@baywindows.com
Philip Curtis, governmental affairs director for APLA, said in part his group's switch was guided by the pressure from the CDC, which has warned states that Ryan White Care Act funding for states that maintain code-based systems could be in jeopardy if Ryan White is changed during reauthorization to include state HIV data in the formula for allocating funds. The CDC will not accept state HIV data that uses a code-based system, and California could lose between $50 and $100 million if it does not make the switch, according to APLA.
Yet Curtis also said the code-based system also made it difficult to collect good data on the epidemic because cases were frequently counted multiple times due to the difficulty of tracking them with anonymous codes.
"I also think that while we certainly continue to take concerns about confidentiality and stigma very seriously, I think we also knew from talking to the epidemiologists at L.A. County and other jurisdictions in California that these offices were really struggling with the code system," said Curtis.
The legislation signed by the governor includes some provisions that help address activists' concerns about confidentiality, including increased fines for individuals who negligently or willfully disclose HIV test results and a mandate that the state operate some anonymous testing sites for those who do not want to be recorded in name-based systems. Curtis said he does not expect people to be scared away from name-based reporting, saying that California has used a similar system for tracking AIDS cases without difficulty.
"I don't think there's any data that shows that people are aware enough to know and will flock to anonymous testing sites if they're available," said Curtis. "It's a nice protection for people who think they need it."
Massachusetts also currently uses a code-based reporting system, and some local advocates, including AIDS Action, oppose a switch. The state Department of Public Health is deciding on how to respond to potential changes to Ryan White around funding formulas but has not reached a decision on whether or not to switch to name-based reporting.
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