HIV testing should require consent and promise privacy


he lure of federal dollars may be prompting California lawmakers to consider an ill-advised law to make HIV testing routine. But there’s nothing routine about testing for HIV, and legislative efforts to make it more common show little concern for the frankness of the doctor-patient relationship, or the insidious threats to patient privacy. Assembly member Patty Berg, D-Eureka, introduced a bill in February to encourage routine testing for HIV by eliminating state requirements that patients provide written consent to the procedure. The bill was voted out of the Assembly Appropriations Committee on May 31 and is expected to come to a vote before the full Assembly later this week and possibly as early as today.

No lawmaker admits as much, but the effort may, at least in part, be driven by the new federal Ryan White Grant Program requirements that states provide the names of HIV patients — not just anonymous numbers — to the federal government in order to receive funding for state HIV programs. To maximize numbers, the bill absolves physicians of any need to obtain written consent or do pre-test counseling, and creates a presumption that the test will be done unless the patient specifically objects.

The U.S. Department of Health and Human Services announced late last month that three California counties (San Francisco, Marin and San Mateo) will lose $8.6 million in federal funds under the Ryan White program this year, as funds are redistributed from urban to rural areas.

San Francisco was hit especially hard, so Sacramento lawmakers no doubt hope to identify as many patients with HIV as possible, because greater numbers mean more funds. If the law passes, the net result will be that patients are tested with no legal requirement that they’ve received an adequate explanation of the associated risks. In essence, the law would sweep the “informed” part of “informed consent” under the rug.

No medical care should be so routine that physicians are dissuaded from discussing with patients their individual needs and concerns. A patient should only be tested for HIV if and when a physician determines that it’s appropriate in view of the patient’s particular circumstances. Unnecessary tests are against the patient’s best interests, are likely to create mistrust and could discourage people who might need to be tested from seeking crucial medical care.

{If HIV testing is made mandatory in CA without consent and all names will be reported, fewer people will be willing to see doctors. Paradoxically, if the diagnosis and treatment of any stigmatized disease is not private, people just stop seeking medical help—whether the disease is HIV or a mental illness or addiction. The federal Ryan White Law requires names of those with HIV be reported before states can receive federal dollars for treatment. The proposed CA law to eliminate consent before testing for HIV, is aimed solely at increasing federal payments to CA for HIV/AIDS. The result will be that far fewer Californians who suspect they have HIV will be willing to seek ANY medical care for any reason fearing mandatory testing. Eliminating privacy actually endangers the population — people who are afraid of being ‘outed’ as having HIV will avoid medical care altogether rather than be forced to be tested and they will continue to infect others, infecting more people. The CA law is a prescription for a public health disaster. ~ Dr. Deborah Peel, Patient Privacy Rights}

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