Exposing AIDS

Could the lure of federal dollars be the motive behind a law being proposed that would weaken the informed consent requirements for HIV testing in New York?Assemblyman Dick Gottfried and Senator Dunane, both Manhattan Democrats, plan to introduce a bill some time this month requiring health professionals to test most, if not all, patients for HIV “as a standard part of diagnostic services.”Mr. Gottfried, the chairman of the New York state assembly health committee, is gathering support before finalizing the language and introducing the measure. It could very well be that when you go in for your next routine physical exam, you’ll get an HIV test, too.No one admits as much, but this bill, like similar proposals elsewhere, is probably driven by new Ryan White Grant Program requirements, under which states must provide the names of actual HIV patients — not just anonymous numbers — to receive federal funding for HIV/AIDS related programs. States will receive funding based not only on actual reported AIDS cases, as was the standard last year, but also on the number of HIV positive residents.To maximize Ryan White benefits, several states hope to eliminate anonymous testing, and test everyone as routinely as possible to maximize the number of names reported. But these measures distort the doctor-patient relationship, introduce the risk of a higher number of false positives, threaten to discourage at-risk patients from seeking general medical care, and may result in grievous violations of patient privacy.Several states have already made the switch. Illinois switched to name-based reporting last year and just sent a routine HIV testing bill to the governor. California switched to name-based testing in April and is considering a similar law. New York may be next.The California legislature documented its reasoning earlier this year when the state assembly appropriations committee reported that $51 million “is the amount California could lose in [Ryan White] funding without HIV names-based reporting.”New York implemented name-based testing in June 2000, but since the new Ryan White requirements went into effect at the beginning of the fiscal year in October 2006, there is now the added urgency of not only knowing how many AIDS cases reside in the state, but also how many citizens have HIV.The easiest way to get as many names as possible is to make test results a routine entry in patients’ charts, whether or not patients want to be tested, whether or not physicians believe testing is necessary, and whether or not such testing is in a patient’s best interest.The Center for Disease Control screening recommendations from September of last year provide the perfect excuse for maximizing funding under Ryan White. Among other things, the CDC states that “HIV screening is recommended for patients [13 to 64] in all health-care settings,” that written consent “should not be required,” that “general consent for medical care should be considered sufficient to encompass consent for HIV testing,” that “prevention counseling should not be required,” and that the test should be performed “unless the patient declines.”The results of the HIV test will be included in patients’ charts and reported to local and state health authorities.Many AIDS advocacy groups, including the AIDS Foundation of Chicago, oppose the relaxation of informed consent requirements, because of the stigma associated with testing positive. A recent study in the Journal of Public Health Reports found that almost 40% of HIV positive New York residents in transitional housing reported having been discriminated against in their dealings with the health care system.Informed consent is probably the most important principle of modern medicine. It empowers patients to make decisions on all aspects of health care, including what tests to take. Patients need to make these decisions in consultation with a doctor, who is trained to assess their needs based on examinations, analysis of their medical histories, and conversations with them. Mandatory testing requirements — even those with opt-out provisions — dehumanize the doctor-patient relationship and introduce distrust.HIV testing is not like cholesterol testing. People don’t worry about their cholesterol levels becoming public or about being stigmatized for their cholesterol status.Confidentiality rules and anonymous testing policies were introduced to reassure people that their privacy would be respected — to encourage people to overcome their privacy concerns and get tested. Eliminating these protections could discourage those who most need to be tested from getting even routine medical treatment.Loss of confidentiality is a real risk. Florida implemented the Ryan White requirements early, and in 2005 a Palm Beach health department employee inadvertently sent 800 employees an internal e-mail containing a list of about 6,500 HIV and AIDS patients. Who knows how many of those employees subsequently shared the information with others? Imagine what might happen if a government office lost another laptop.It’s bad enough for a state government to decide that it wants to protect people from themselves by making medical choices for them. But it’s worse when that supposedly well-intentioned paternalism is really a ploy to dip into federal coffers.Ms. Fry-Revere is director of bioethics studies at the Cato Institute.

Exposing AIDS

Exposing AIDS

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