March 15, 2001

The End of Anonymous HIV Testing in California

Berkeley, CA -- 15 March 2001 -- Since 1985, HIV testing has provided a way for people to learn their status and talk with a counselor about reducing their risk. In this way, HIV testing is crucial for preventing new infections and helping those already infected access treatment. Recent improvements in combination HIV therapy have made testing more important than ever. Despite widespread availability of free testing, many clients do not return for their results or avoid getting tested altogether. The reasons for this are complex, yet what is clear is that many avoid testing out due to the stigma associated with HIV and AIDS.

In California, there are two ways to get tested for HIV. Confidential testing links the test result to your name, and becomes part of your medical record, which is available to other health care providers and insurance companies. Anonymous testing is not linked to any identifying information and is never included in a medical record. While the vast majority of people seek confidential tests from their private doctor, there is clear evidence that government subsidized anonymous test sites serve high-risk clients who are concerned about their anonymity. In 1999, approximately 210,000 tests were provided in government-funded test sites, and half of these were anonymous tests. Studies have found that many people would not test if their name was recorded with the result, and that people who test anonymously enter into HIV care sooner than those who test confidentially.

While state-sponsored anonymous tests are technically "free," clients are asked to provide a great deal of information about their HIV risk factors. State-funded clinics are required to collect this information using a standardized risk assessment form that is completed by the test counselor for each client. The risk assessment form has required increasingly detailed information about risk behavior. The state uses this the form to track trends in HIV risk behavior and testing and for billing and administrative purposes. This database of testing and counseling information is distinct from the blinded surveillance conducted by the epidemiology branch and the coded HIV/AIDS registry.

Beginning in January, the new version of the risk assessment form (HIV5) requires counselors to ask anonymous test clients for their last initial and date of birth, in addition to zip code, gender, and ethnicity. Collection of such identifiers conflicts with state law and Office of AIDS' own guidelines, which stipulate that name and date of birth are among the "forbidden identifiers" in anonymous testing. The state explains the change in policy as part of an effort to track the number of unique clients who test, rather than the number of tests, many of which represent repeat clients. The state is also interested in using unique identifiers (including the date of birth and last initial) to track individuals contacted by street outreach workers to the test sites and ultimately to other, unspecified services. The state's intent to cross link anonymous and confidential client databases for tracking purposes clearly violates the spirit of unlinked anonymous testing.

A group of concerned California citizens and test counselors at the Berkeley Free Clinic are mounting a campaign to keep anonymous testing anonymous. The campaign's central message, "Don't Ask, Don't Tell" is directed to both heath workers and test clients. Anonymous test clients should refuse to provide date of birth and last initial and realize that all information requested for the form is optional. Anonymous test counselors and outreach workers should refuse to ask clients for identifying information such as date of birth and last initial.

The State's new tracking policy jeopardizes HIV prevention efforts that have been built on trust in the system's anonymity. John Day, a test counselor at the Berkeley Free Clinic since 1989, points out that "Laws protecting private information change all the time. Who knows if some county health department will decide to crosslink the databases at some point in the future." Many states, including California, have recently signed legislation that makes HIV transmission a crime when the person knew they were infected.

While one can question the security of the centralized test counseling database in Sacramento, perhaps the greatest risk for abuse exists at the 700 local community-based test sites where the risk assessment information is collected. "All it takes is one leak at the local level by a disgruntled health worker and the entire anonymous HIV testing system can be compromised. Look at the case in Florida." cites Day, referring to the 1996 incident in which a computer diskette containing the names of HIV positive people was leaked by a disgruntled health officer in Florida.

Computer databases connected via the Internet have increasingly eroded the privacy of medical records.
According to a recent Consumer Reports study, it is possible to identify 69% of all registered voters in Massachusetts using only date of birth and zip code. Each additional piece of data, such as initials, gender, and ethnicity, increases the likelihood of positive identification to nearly 100%.

For more information about anonymous HIV testing and the Don't Ask, Don't Tell campaign, visit the Berkeley Free Clinic's web site at http://www.berkeleyfreeclinic.org or call 1.800.918.4392.

THE BERKELEY FREE CLINIC was founded in 1969 as a volunteer collective providing services and referrals for the thousands of clients without access to medical care. For over 30 years, the clinic has lived up to it's motto: "Health for People, Not Profit," by providing free medical, counseling, and dental services to thousands of clients. Services are provided by over 100 committed and well-trained volunteers who believe that quality health care is a right and not a privilege.

 

For more information, see HIV Surveillance and Reporting in Context.

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