Should Everyone Be Tested For HIV Without Documented Written Informed Consent?

Last year Mad Professah previously posted my many objections to the Center for Disease Control and Prevention (CDC)'s planned revised guidelines on HIV Testing in the United States. On Friday September 22, 2006 the CDC announced their final recommendation ("Revised Recommendations for HIV Testing of Adults, Adolescents, and Pregnant Women in Health-Care Settings) that all Americans between the ages of 13-64 be routinely tested for HIV, with pre- and post- counselling be optional. At the New York Times website the commenters were pretty evenly divided on the merits of the issue.

Now, this year those little "engines of democracy" have been responding to the recommendations by introducing legislation. Currently the legislative debate is most vigorous in California, Illinois and New York.

On Thursday May 3 the Chicago Sun-Times editorialized ("Compromise needed to boost HIV testing") about Illinios' bill, HB 980, which was picked up about the Kaiser Family Foundation's Daily HIV/AIDS Report on May 8:

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Making HIV testing a routine part of people's health care, as the Centers for Disease Control is determined to do -- with patients' knowledge and with patients having the right to not be tested -- seems to be a good way to expand these screenings. But the CDC's push to eliminate the requirement of written consent for the tests, as well as pre-test counseling, has the potential to do more harm than good. So, then, does a bill before the Illinois House that in its current form endorses those CDC guidelines.

HIV is anything but a routine disease. Unlike cancer or heart disease, it carries a powerful stigma, particularly in certain low-income communities, where a large percentage of people -- black males especially -- resist testing. Dire consequences can come from administering an HIV test to individuals who don't know they don't have to take it, aren't educated about the infection and ways to fight it, and don't yet have a support group to help get them through. Doctors and AIDS activists see the written consent as essential to the cause of protecting HIV patients' basic rights.

In New York, public hospitals have shown it's possible to greatly increase HIV testing by incorporating it into routine medical care -- without eliminating the requirement of informed, written consent. By going with a rapid testing program, streamlining and diversifying counseling and making testing available in emergency departments, outpatient clinics and other facilities away from the usual spots, New York increased the number of those tested in 2006 by a whopping 63 percent over 2005 and doubled the number of HIV-positive patients identified.

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The Illinois Legislature passed an amended form of HB 980 on June 1. As previously reported ("California HIV-related Legislation"), California's legislature is currently consider AIDS Healthcare Foundation's Assemblymember Patty Berg's AB 682, which purports to enact the (misguided) new federal recommendations on HIV testing into state law. That bill has passed both the Assembly Health Committee unanimously and the State Assembly unanimously (77-0) last Thursday June 7th.

The large AIDS service organizations that were responsible for California enacting mandatory governmental registration of HIV positive individuals by name (i.e. HIV Names Reporting) instead of alphanumeric code have also lined up to eliminate written informed consent for HIV testing in the state of California: AIDS Project Los Angeles, Bienestar, AIDS Healthcare Foundation, L.A. Gay and Lesbian Center, Project Inform and San Francisco AIDS Foundation.
Happily, this time a number of community-based organizations like Center for Health Justice, Being Alive Los Angeles, American Civil Liberties Union, Lambda Legal, Williams Institute at UCLA School of Law and Community HIV AIDS Mobilization Project (some of whom Mad Professah is associated with) are organizing to prevent organizational expediency from steam rolling over individual rights.

In addition, on Wednesday June 6th the San Francisco Chronicle carried an op-ed from Sigrid Fry-Revere of the Cato Institute entitled "HIV testing should require consent and promise privacy" which aptly summarized why enacting the current form of AB 682 is bad public policy.

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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. Federal and state governments introduced confidentiality rules and anonymous testing policies to reassure patients that their privacy would be respected, in hopes of encouraging them to choose freely to risk the loss of privacy and get tested. Eliminating privacy protections and testing routinely could cause those who most need to be tested to avoid medical treatment altogether.

It's bad enough for a state government to decide that it wants to protect people from themselves by making medical choices for them. It's all the worse when that supposedly well-intentioned paternalism is really a ploy to dip into federal coffers.

Indeed!