AIDS rules raise privacy questions

March 4, 2010


The state’s nonpartisan Legislative Analyst’s Office urged lawmakers last week to generate amore  stringent reporting protocol for HIV/AIDs cases,  according to a report issued by that office.  A new reporting system, the LAO said, would make California a better competitor for federal HIV/AIDs money, though some critics note that streamlining the reporting process may compromise patients’ rights to privacy.

The Center for Disease Control reports that in 2006, more than 148,000 Californians were living with HIV or AIDs. Some advocacy groups question that figure; some estimate that up to 70,000 HIV-positive Californians are not counted because of loopholes the current system.

One such group, the AIDs Healthcare Foundation, noted in a recent statement that California has “lost out on millions of dollars in federal funding” because of flaws in its counting. That funding relies on a complex reporting process: local health care providers, in partnership with diagnostic labs, to report all new cases to local health authorities, who then forward them to state officials, who forward them to Washington. Whatever the state does not receive, it supplements directly from the General Fund.

Last week’s LAO report recommended methods to establish a more complete case count in California. One, an approach known as “data matching,” would require cross-referencing treatment and surveillance databases to ensure no patient is missed. Such a system would require small amendments to state’s Health and Safety Code and no new budget items, according to the state Office of AIDs.

“Improving the sharing of case information, if it results in counting more cases, will ultimately benefit HIV-positive individuals themselves by virtue of increased federal funds available for medical and support services,” said Lisa Murawski, of the LAO.

The last major development in California’s reporting system came in 2005, when a new federal statute — the Ryan White Comprehensive Aids Resources Emergency (CARE) Act — required that states provide a name-based case count in order to qualify for federal funding. That year, California, which had used a coded reporting system since the 1980s, was forced to disclose patient names for the first time.

Today, though many note that the LAO’s recommended changes are not as drastic, skeptics of public health surveillance continue to raise questions.

In a paper entitled “Mission Creep: Public Health Surveillance and Medical Privacy,” Legal expert Wendy K. Mariner, who also teaches at Boston University’s School of Public Health, identified the tension between disease surveillance imperatives and privacy rights in an oft-quoted paper.

“Even where there is a persuasive argument for social choice, the question remains whether that choice should be made through legislation or by some other more stringent mechanism,” she wrote. “The expanding concept of public health suggests that we may currently be experiencing a shift in perceptions … Debates over illicit drugs, tobacco, alcohol and now obesity and ‘fitness’ suggest that these behaviors are moving from the sphere of personal choice to that of the public interest.”

She added, “The more that certain behaviors or conditions are viewed as affection the public — or public health — the more likely it is that the government will claim an interest in access to personal information about those behaviors and conditions. For this reason, the government’s claim to information can appear to be especially threatening to a person’s sense of self.”

LAO analyst Murawski responded to these concerns. “We always struggle to find a balance between personal privacy and the benefits of effective exchange of health information,” said Murawski. “Rational people can disagree about precisely what the balance should be … One could ponder the ethical considerations of ignoring known gaps in the surveillance system that could bring the state more money for individuals who need services.”

Mariner could not be reach for further comment.

CDC figures show that California is second only to New York in its total HIV/AIDs case count, but ranked ninth in terms of annual federal funding per patient. States like Pennsylvania and Illinois, according to the Kaiser Family Foundation, receive double what California does per patient. The amount of public funding spent by California HIV/AIDs group totaled $404 million in 2008, according to the same figures.

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