From the Los Angeles Times
Schwarzenegger Signs Bill to Track HIV Cases by Name
By Michelle Keller
Times Staff Writer
April 18, 2006
Epidemiologists tracking the spread of HIV in California will begin using data based on patient names rather than relying on a flawed code-based system under a new law signed Monday by Gov. Arnold Schwarzenegger.
The shift will ensure that California continues to receive more than $50 million annually for HIV/AIDS care from the federal government, which has ruled that code-based reporting is unreliable. With at least 38 states already signed on to use patient names, California is one of a handful of states still using alphanumeric codes to identify HIV cases.
The bill, sponsored by Sen. Nell Soto (D-Pomona), unanimously cleared the state Senate and Assembly and was lauded by health officials around the state.
"This is a historic moment in time in fighting AIDS," said Michael Weinstein, president of the AIDS Healthcare Foundation. "We're aligning the way we handle AIDS to how we handle all other public health issues."
Under the code system, enacted in July 2002, healthcare providers and labs reported HIV infections to local health agencies and the state Department of Health Services using codes created from birth dates, gender and elements of the patient's last name.
The practice of using codes was created to ensure patient confidentiality, but proved to be a bureaucratic nightmare for health officials. County health departments have reported difficulties in exchanging data with doctors and duplication of HIV cases. Sorting out errors, argue proponents of the bill, has proven to be both expensive and time-consuming.
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4 comments:
How do you feel about this? Is the increased accuracy of reporting a benefit to epidemiology that offests concerns about confidentiality/privacy? Is anonymous testing still provided? Will people tend to avoid being tested if they think it will invade their privacy? What have studies from the other 38 states using names shown so far?
Do HIV infections get reported, or only AIDS cases?
In reading the entire story, it does say that anonymous testing is still going to be available. I was glad to read that because I have personal experience with people afraid to get tested out of fear that someone will "find out."
As to your other questions, I don't have the answers. I only just now read this story and wanted to relay it here since I know a lot of people read my blog to keep up with AIDS information.
My roomie has been "in the system" in Oregon and now in Washington. Apparently their have been changes to the Ryan White fund that requires tracking by name instead of number for the disbursment of funds. I am trying desperately to find information on this change so I can post about it and get others to. This is an agregious invasion of privacy that has very frightening implications.
It's Standard Operating Procedure for most disease outbreaks. The problem with using this model for HIV is the fear that people will avoid the system altogether because of the social stigma accompanying the disease. Losing a job. Losing friends. If this plan makes things worse by chasing people away from the system, then it's not a good idea.
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