HIV patients' privacy questioned by ACLU

A California health department is accused of breaching confidentiality by releasing information to a contractor charged with providing services to Medicaid recipients.

By Pamela Lewis Dolan — Posted Oct. 1, 2010

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The American Civil Liberties Union of Northern California claims that the California Dept. of Health Care Services violated state laws protecting the confidentiality of patients' HIV-status.

The organization said the health department supplied a list of potential clients to a business associate that provided services to HIV-positive Medicaid recipients. The accusation comes in a letter the ACLU sent to the department.

In 2003, the California Dept. of Health Care Services launched a disease management pilot program for HIV-positive Medi-Cal recipients. It contracted with the AIDS Healthcare Foundation in 2007 to provide services to those patients.

As a means of identifying potential clients, the health department sent the foundation the names and contact information of Medi-Cal recipients who probably would qualify for services. Although the lists did not disclose the HIV status of the names that appeared on them, the ACLU believes state laws, which go beyond the bar set by the Health Insurance Portability and Accountability Act, were violated. The ACLU said inclusion on the list would imply an HIV-positive status because they were names of people potentially eligible to receive HIV/AIDS-related services.

"The legal arguments seem clear, and the public health repercussions are enormous," said Elizabeth Gill, staff attorney for the LGBT and AIDS Project of the ACLU of Northern California, who helped draft a letter sent to the California Dept. of Health Care Services. "It's incredibly well-documented that if folks are worried about their HIV status being disclosed, they won't get tested, and they will stop taking treatments."

Lambda Legal and the HIV and AIDS Legal Services Alliance also signed the letter sent to the health department.

Norman Williams, spokesman for the health department, said the department takes every precaution to protect the HIV status of patients. He said the HIV status of Medi-Cal members is never disclosed, and that the AHF, as a contracted business associate, was bound by the same privacy laws the department is obligated to follow.

In its correspondence to potential clients, the AHF did not put its name on envelopes or say the name of the organization when leaving phone messages. The only time the health status was disclosed was when the potential clients decided to talk about it, Williams said.

In a statement released after the ACLU became involved, AHF President Michael Weinstein said, "When privacy trumps prudent public health and the provision of lifesaving care, we've gone too far." He said "outdated and overblown privacy concerns" could put the lives of HIV patients at risk.

The contract between AHF and the health department was terminated at the end of 2009 after the AHF's request for additional information from the health department was denied. The AHF said it could not meet its obligation to find HIV Medi-Cal patients and provide services to them without the information.

Williams said he could not provide details on what additional information the AHF was seeking but said information the health department did share included names, addresses, gender, ethnicity, contact information, determination dates for Medi-Cal eligibility and unique identifiers the state uses to issue benefits.

A bill introduced this year in California would have allowed, without written consent from the patient, the disclosure of HIV blood test results to contractors hired by the state to provide medical care and treatment to HIV patients. The bill died in committee.

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