Archived Release: November 2005

Being Alive/People with HIV/AIDS Action Coalition commends Senator Kuehl and the entire LGBT Statewide Legislative Caucus for courageous work preventing the hasty enactment of names reporting in California

Being Alive Los Angeles commends the California LGBT Legislative Caucus for blocking the enactment of mandatory HIV names reporting legislation (SB 945) in our state. The bill failed to provide adequate confidentiality and HIV-discrimination protections. Changing such a controversial and important public health policy without carefully assessing the impact on civil rights for people living with HIV-disease should not be done hastily or needlessly.

Now that the California Legislature has adjourned for the year, Being Alive reaffirms our commitment to protect public health without compromising the privacy of Being Alive’s members and all HIV+ Californians. Being Alive Los Angeles believes there are several vital principles that must be addressed before the state considers abandoning its current system of reporting that ensures privacy is protected:

1. Guarantee access, funding and availability of anonymous HIV testing programs, ensure anonymous testing continues to be a significant proportion of all available HIV tests in the state, and link testing to guaranteed medical care. Voluntary anonymous testing has proven to be a critical first step in accessing treatment. In other states (like neighboring Nevada) that have adopted a Names-based Reporting system for HIV, anonymous testing has been eliminated, while in some states anonymous testing has been starved of resources that have overwhelmingly been allocated to “confidential” HIV testing (where individual identifying information is attached to the test result). Collecting such personal information has proven to be a real and effective deterrent to testing. Additionally, we believe testing programs should be linked to guaranteed access to medical care for all people known to be living with HIV. 
2. Enhance confidentiality protections of HIV-related information. According to court decisions in California such as Urbaniak v. Newton (226 Cal.App.3d 1128), the practical ability of injured parties to obtain redress has been effectively narrowed in the unlikely event of the release of identifying information that allow a reasonable person to ascertain an individual’s HIV status. Although proposed legislative language moderately increased financial penalties against the release of HIV test and public health records that would include names-based HIV surveillance data, it is unclear whether this is sufficient to provide protection against the release of other HIV-related information. The  proposed legislation also does nothing to address the concerns raised by  the Urbaniak decision and the impediments interpretation of the law by the  Courts has played in reducing meaningful confidentiality protections  against negligent, malicious or willful disclosure of HIV-related information.
3. Strengthen explicit legal prohibitions against HIV-related discrimination. Although California already has some explicit protections against discrimination against people with disabilities in state law that are stronger and broader than those that appear in federal law, these protections based on disability and medical condition are not also explicitly included in two important sections of the California Government Code. Additionally, some are using other markers of HIV to discriminate in employment, housing and insurance. New laws must be enacted to address this back door discrimination. The well publicized breach of personal data from companies such as ChoicePoint underscore the new threats technology and global corporate consolidation poses to privacy by unregulated firms that collect and use sensitive medical information. Such breaches of personal data that may include HIV related markers raise additional concerns, particularly with firms located outside the state or on foreign soil.
4. Join us in advocating that the federal government be required to accept California’s HIV data. Being Alive understands the critical importance of ensuring California receives its fair share of federal dollars to fund the programs that serve us. We are acutely aware that although it has not affected funding the CDC has until now been refusing to accept HIV surveillance data from California and a number of other states like Massachusetts and Illinois which currently do not collect names-based HIV data. We call on our representatives to work together during the reauthorization process for the Ryan White CARE Act to require the CDC to accept California’s data just as current law prohibits the CDC from requiring a state to switch surveillance systems.
5. Ensure continuation of a legal provision that guarantees federal resources allocated to California are not threatened during any future funding formula change. Current federal law includes a “hold harmless” provision. We believe it is vital this provision be continued.

As an organization of, by, and for people living with HIV/AIDS, Being Alive seeks to provide a forum for over 45,000 people living with HIV-disease in Los Angeles County to have a voice in the important public policy issues that impact their lives. The issue of mandatory HIV names reporting is critically important to us. We know from our own experiences and from well-documented studies of other states that have switched to names reporting, that without adequate protections in place, fewer people in California will seek HIV testing and fewer people living with HIV-disease will access medical care, particularly in communities of color. As a result, it will be harder to fight the AIDS epidemic in California and more people will slide into illness and more will likely die.

We believe that before the State of California rescinds such an important protection for people living with HIV/AIDS, it should fully consider and assess the practical effect such a move will have on the dignity and lives of those of us actually living with HIV/AIDS. We must ensure that enhanced legal protections are first put in place that, as much as possible, provide the civil rights and public health protections that California’s 25-year-old policy of not requiring HIV names reporting has provided.

We have carefully considered the potential risks of making this important policy change, as we have had to consider so many formidable risks during the course of our illnesses, without panic and without hysteria. In doing so, we have seen what former UN AIDS leader Jonathan Mann saw so clearly over a decade ago: that in fighting the HIV epidemic, civil rights and public health are not in tension; rather, promoting the former promotes the latter.