Wednesday, April 19, 2006

Do You Trust the State With Your Private Medical Data?

If you have HIV, it seems you have little choice. On Monday California joined all but six holdout states in using the patients actual name when collecting data on HIV cases for reporting to the Federal health authorities.

HIV-positive patients are wise to worry about their privacy. Exposure could jeapardize their jobs, their social standing, or other aspects of their lives.
more . . .

The Centers for Disease Control (CDC) is demanding an end to using anonymous codes (as California and many states were, previously) because the various agencies couldn't handle the extra complication of coded files with any accuracy. According to L.A. County’s HIV Epidemiology Program, code-based lab case data collected over the last year contain a 40 percent error rate. The CDC will enforce using actual names by making it a requirement for distribution of federal AIDS/HIV related funding to the states under the Ryan White CARE Act of 2000.

All the usual mainstream LGBT suspects, many initally against the bill because of the potential loss of privacy for HIV-positive individuals, became ardent supporters of the change in California when it was learned that nearly $50M of Aids/HIV related federal funding might be at stake. The bill was passed unanimously by both the state house and senate and signed by the Governator. Even big business applauded the new law.

So, let me understand this. Because of the incompetence of some local and state agencies in being able to be both accurate and at the same time keep patients anonymous, patients nationwide now have to trust their state governments to maintain their privacy. And this was all dictacted by a non-elected federal bureaucrats by reissuing regulations for a six-year old law. No one challenged the various agencies to improve their accuracy in handling coded data; everyone immediately caved in to the CDC demands as soon as a money figure was attached. As quoted from the this L.A. Times article:
"We are not oblivious to the stigma of testing positive for HIV," said Philip Curtis, director of government affairs for AIDS Project Los Angeles. But without switching to names-based reporting, California is "likely to lose an enormous amount of funding," Curtis said.
What a bunch of whores.