California Discloses HIVers' Private Info

Three agencies — Lambda Legal, the American Civil Liberties Union of Northern California, and the HIV & AIDS Legal Services Alliance — sent a letter today to David Maxwell-Jolly, director of the California Department of Health Care Services, demanding a full explanation for the unauthorized and illegal disclosures of confidential identifying information of approximately 5,000 HIV-positive Medi-Cal recipients.

The information was released over a 2.5-year period, beginning in 2007, to a third-party service provider, according to the agencies. In addition, Lambda Legal, the ACLU-NC, and HALSA seek immediate assurances from the state agency that no additional unauthorized, illegal disclosures will occur.

Lambda Legal and the ACLU-NC became aware of the breach during discussions about a bill in the state assembly that would have diluted the strong confidentiality protections under California law for HIVers and would have legalized the unauthorized release of such information to an AIDS service provider.

Although current law forbids unauthorized disclosures about a person's HIV status, the state agency released confidential identifying information about HIV-positive Medi-Cal recipients without authorization or proper limitations on how that information was to be used by a private organization, the AIDS Healthcare Foundation.

"The state stepped out of bounds when it disclosed the confidential records of HIV-positive Medi-Cal patients, even including their contact information," says Elizabeth Gill, staff attorney at the ACLU of Northern California. "Medical records contain highly sensitive and personal information, and [the Department of Health Care Services] had no right to give out that information without people's permission."

"This is not just a violation of people's privacy. It's a violation of California law," says Peter Renn, staff attorney with Lambda Legal. "HIV is still a highly stigmatized disease, something the state agency seems to have conveniently forgotten. Especially for those who are extra vulnerable — like many who depend on Medi-Cal for their essential medical care — it is critical to prevent improper disclosures of private health information, such as one's HIV status. Of course we all want people with HIV to be able to access quality health services. But that does not require stripping patients of control over their own medical information and exposing them to greater likelihood of stigma and discrimination."

The letter, delivered on September 9 demands that the state agency comply with California law and stop releasing information to third-party service providers. It also demands that the state agency provide a full accounting of exactly what information was released.

Lambda Legal, the ACLU, and HALSA have also submitted a request under the California Public Records Act requesting documents regarding the release, with the confidential information removed.

The three organizations have requested DHCS to respond by September 20.