Many California county health officials are discounting arguments that it is in the public interest to know who died from swine flu and refusing to release the records to journalism students from University of Southern California’s Annenberg School of Journalism. In denying the requests, officials cite privacy issues and the Health Insurance Portability and Accountability Act, a federal law to keep patients’ health records confidential. -DB
By Holly Butcher, Bethany Firnhaber and Julia James
Who is dying of the swine flu? It’s a simple question, but the answer has been hard to come by: Many counties across California and the nation are refusing to grant public records requests for death certificates of H1N1 victims.
“We’re finding that it is incredibly difficult nationwide for a variety of reasons to get the actual names of the people who have died of H1N1,” Lucy Dalglish, executive director of the Reporter’s Committee for the Freedom of the Press, said in a telephone interview last week.
Two counties — Los Angeles and Fresno — reversed previous denials and released death certificates of swine flu victims to Neon Tommy in recent weeks. Ten other California counties rejected public records requests: Alameda; Contra Costa; Marin; Napa; San Bernardino; San Diego; San Francisco; Santa Clara; Shasta and Sonoma.
With limited vaccine supplies and lingering uncertainty about who is most at risk from the virus, Tom Burke of the San Francisco law firm Davis Wright Tremaine takes special issue with county officials’ refusal to release death certificates of H1N1 victims.
“Given the high public interest in this health issue, it’s precisely the type of information people need to know now,” Burke said. “It’s not only wrong; it’s dangerous and counter-productive to hide the information.”
Some county officials denied requests for the documents on the basis that they contain personal health information protected by the Health Insurance Portability and Accountability Act, which Congress passed in 1996 to keep patients’ hospital records confidential.
Laura Welch, clerk of the board in San Bernardino County, wrote in a Sept. 28 e-mail: “Even though these individual [swine flu victims] are now deceased, the production of this health information remains prohibited as the protection of health information survives an individual’s death.”
Not true, legal experts say. County officials are confusing medical records — which are private — with government records such as death certificates — which are not. Access to public documents is guaranteed at the federal level by the Freedom of Information Act and at the state level by the California Public Records Act.
“If death records are to be made public under state law, HIPAA does not preclude their being publicly released,” said Burke in a telephone interview last week. “The person who has died certainly does not have a privacy claim, nor does the family.”
Burke won a 2008 decision by the Nebraska Supreme Court, which found that state death records are not covered by HIPAA privacy protections and must be released to the public. In another case, Georgia’s attorney general issued an opinion that death certificates must be made public under state law and that federal patient privacy statute had no bearing.
Dalglish, of the Reporter’s Committee for the Freedom of the Press, agrees that HIPAA is a red herring.
“HIPAA is intended to apply to medical providers that exchange information electronically,” Dalglish said. “A state public records agency is not a medical provider. So the fact that [counties] would invoke a federal law saying it somehow governs their own state record-keeping ability is ludicrous.”
The federal government itself has issued guidelines stating that HIPAA does not apply to official documents that are required to be public under state laws.
When refusing to provide certificates based on cause of death, most counties approached by Neon Tommy reporters made the Kafkaesque concession that any individual certificate would be made available if the name of the deceased were known. In these cases — where victims’ names had already been made public — students were able to obtain seven swine flu death certificates in total without any kind of privacy protest. One came from Alameda; two from Fresno County; one from Marin; two from Sacramento and one from San Diego.
A few counties, like San Francisco, offered hybrid denials, citing both privacy laws and administrative procedures as reasons for withholding death certificates.
“We use an electronic death registry system and that system is not accessible nor covered under the public information act because confidential information is contained therein,” Karen MacKenzie of the San Francisco County Health Department wrote in an Oct. 6 e-mail.
Sonoma, Napa and Marin Counties pointed Neon Tommy to the California Department of Public Health.
“The state is required to maintain birth and death records in a manner that can be disclosed to the public for the purposes of research,” JoAnn Borri, a compliance officer with the Sonoma County Department of Health Services, wrote in an Oct. 23 e-mail.
Jane McKendry, section chief at the state’s Office of Health Information and Research, confirmed that “in order to obtain certificates for deaths where you only know the cause, you must obtain the decedent’s name, which can be done by purchasing a special data run.”
But other CDPH officials told Neon Tommy that the Division of Communicable Disease Control does not maintain any name-based lists of swine flu deaths — that the best way to obtain the certificates would be through the counties where the deaths occurred.
Some counties defended their denials by citing an incompatibility of state statutes and administrative procedures with the California Public Records Act.
“We’re a public services office,” said Mari-Ann Rivers, deputy counsel in Marin County, “We’re not out to hide information.”
But Burke sees the counties’ refusal to release death certificates in a different light.
“They’re public servants collecting data and they’re withholding that public data from a public that is potentially misinformed,” he said.
Hillel Aron, Jessica Flores, Michael Green, Olga Khazan, Walter Redmond, Rob Schwandt, Amy Silverstein, Susannah Snider and Jessika Walsten contributed to this story.
Copyrght 2009 USC Annenberg