PORTLAND, Ore. — Lindsey Rice doesn't blame HIPAA for her mother's disappearance.
The medical privacy law (the Health Insurance Portability and Accountability Act) was just one of the problems she had in dealing with Rachel Rice, a schizophrenic who has been missing since August.
Lindsey Rice said she couldn't get her mother committed to the state hospital or get foster care, and meanwhile voices were telling her mother to pull her own teeth.
Amid all that grief, the daughter said, it didn't help that her mother would be in and out of hospitals in southern Oregon, and the family couldn't keep track of her because medical personnel were trying to follow HIPAA, the Health Insurance Portability and Accountability Act of 1996.
Once, Rice said, her mother walked out of a hospital without getting a proper discharge, but, because of the privacy law, the hospital didn't call Lindsey. That time, she said, the police found Rachel and brought her home.
"She was just being released into a world of paranoia, and it wasn't good," Rice said.
When Rachel Rice, 46, vanished most recently, it wasn't because of HIPAA. She had a habit of wandering off. But when Lindsey Rice started talking about her mother to news organizations, she expressed her frustration with HIPAA.
"If you read the privacy act, it's keeping anyone from finding out anything at all," Rice said. "You call the hospital looking for a loved one, and they tell you they can't tell you whether she's there."
Journalists in Oregon share her frustration over the law itself and over confusion over its enforcement.
Among the effects of the wide-ranging law is a stopper in a traditional source of information about the daily stream of accidents, crime and the like: the local hospital's admitting desk.
HIPAA requires hospitals to ask patients whether they wish to have information disclosed to the public. If the patient says no, the hospital can't give out information such as the traditional short condition descriptions "good" or "serious," or even say whether the person is in the hospital, dead and in the morgue, or transferred to a specialized hospital.
"That's not very satisfying for readers if they don't know whether their neighbor or the person they know from Rotary is alive, dead or what," said Mark Furman, editor of the Baker City Herald.
Furman noted ways around the roadblock: If the hospital won't release information, a reporter can call family members, for instance. But, Furman asks, "Are we invading their privacy more by knocking on their doors?"
If a patient, unconscious or mentally ill, can't make a decision, medical personnel can make one in the patient's best interest, and hospital officials say they will generally make a conservative decision not to release information.
And, sometimes, signals get crossed. Lindsey Rice says that she eventually got her mother to sign a waiver form, only to be told later by a hospital official that it wasn't on file.
HIPAA wasn't aimed at journalism — its broad purposes were to make it easier for consumers to switch health insurance policies and to protect patients' records.
But privacy advocates say the law is working appropriately when a patient opts to keep medical information from journalists.
"The regulations were intended to give people more control over their information," said Joy Pritts, director of the Center of Medical Record Rights and Privacy at Georgetown University's Health Policy Institute.
Another irritation for reporters and editors is confusion among some officials about how the law works. It applies only to medical personnel, for example, but police officers and first responders such as emergency medical technicians sometimes cite it as a reason for refusing to release information.
"That's where we hear most of the horror stories," said Lucy Dalglish, executive director of the Reporters Committee for Freedom of the Press in Arlington, Va.
For instance, Dalglish said, "If your paramedics are run by the local fire department, they're not covered, but if they're run by the local hospital, they are."
Oregon hospital officials say much of the confusion came early as the law was put into effect. "Most of that has eased off," said Gwen Dayton, executive vice president and general counsel of the Oregon Association of Hospitals and Health Systems.
Investigative journalists say the law can be a major roadblock.
The state has curtailed the reports that The Oregonian in Portland used to produce a 2002 series that documented failures in the state mental health system that led to deaths, said reporter Michelle Roberts.
She said the reports had details about places and dates that allowed the newspaper to track nearly 250 deaths through a variety of other records and to document that 94 were the result of failures by agencies, doctors and caseworkers.
"In honesty, I do not believe that we would have seen the trends," she said. "I do not think we would have done that level of story."
Recently, spurred in part by such investigations, the state has come up with a master plan for reforming the mental health system.
Though journalists chafe when they are denied information, HIPAA isn't likely to be changed.
Privacy advocates and medical interests make a powerful political combination, Dalglish said, and they won most of the battles over the HIPPA rules. "They ate our lunch," she said.
She said journalists had had the most success in making sure that news sources who aren't covered by HIPAA don't use it as a shield.
Privacy advocates say that, if anything, the law ought to be strengthened. Pritts said it ought to prevent pharmacies and pharmacy-benefit managers from using patient information to solicit prescription-hopping, for the purpose of nothing but profit.
"In some ways, HIPAA has been very effective," Pritts said.
She cites its power in making people aware of their rights under state and federal laws and the "clear legal right" it has given patients to have access to their own records. It has stopped egregious violations such as reality-show style broadcasts from emergency rooms, she said.