ILLINOIS: Caves In To CDC On HIV Names Reporting

On October 19, the Director of the Illinois Department of Public Health, Dr. Eric Whitaker, announced that Illinois will abandon its long standing practice of tracking cases of HIV by alphanumeric code beginning January 1, 2006. Illinois has succumbed to pressure from the Bush Administration and the Centers for Disease Control and Prevention who have refused to accept code-based HIV surveillance data and threatened reductions in federal funding to states using unacceptable data. AIDS Foundation of Chicago has set up a helpful frequently asked questions website to attempt to explain their support for this radical public policy change.

I have been involved in the fight to prevent such a policy being enacted in California. The reasons for this are manifold. First, I believe the policy will negatively impact HIV prevention efforts. As I have posted recently, I think one primary goal of HIV prevention should be to increase the number of people who get tested regularly. Any misguided policy which tends to discourage or punish people for knowing their HIV status should be avoided. Switching to reporting cases of HIV infection by name will lead to exactly the groups (those that are most suspicious and fearful of the government) that we want to see get tested delaying or declining to do so.

Second, the policy change raises obvious privacy concerns. The government wants to maintain a list of all HIV-positive people in the state, at the behest of the federal government? If we have not learned anything from the massive breaches of credit card data security in the last year and the incredible rise in the frequency of identity theft, it is that once information is collected and digitized, it is vulnerable to unauthorized access and unpredictable usage.

Third, the policy change is unnecessary right now. The policy change to enact names-based HIV reporting is in response to a push from the Centers for Disease Control and Prevention who claim that HIV surveillance data is more accurate than code-based data and that in the newly reauthorized Ryan White CARE Act states with inaccurate data will be negatively impacted financially through reduced federal disbursements. But the Ryan White CARE Act won't be reauthorized until Spring 2006, at the earliest. The fact that the policy change is not called for legislatively causes advocate for people with AIDS to question the motive for making this policy change. In the last twenty years California has faced three discriminatory ballot measures which would have attempted to quarantine, incarcerate or violate people with AIDS. The fact is that the people who sponsored these kinds of initiatives in the past have always wanted to start by collecting the names of people with AIDS.
So it is not surprising that advocates for people with AIDS are suspicious of the motives behind the recent calls for Names-based HIV surveillance.