Stark Contrast in Details on Giffords, Jobs
Why is the public getting such detailed information about Rep. Gabrielle Giffords' medical condition and none about Steve Jobs?
Both are public figures of intense national interest.
With Giffords, it's almost a case of TMI. The University Medical Center in Tucson is providing intimate details about her treatment and condition. We know that over the weekend, doctors replaced a breathing tube in her mouth with one in her neck, installed a feeding tube and went through her skull to repair her right eye socket with titanium mesh.
All we know about Jobs is that the chief executive of the world's most valuable tech company is taking a medical leave of absence. Apple gave no details about the nature of his illness, his whereabouts or how long he will be out.
The contrast has sparked a debate about whether the university's disclosures are going too far and Apple's not far enough.
It helps to understand the Health Insurance Portability and Accountability Act, which regulates the use and disclosure of personal medical information by health care providers and health insurers. It has no separate rules for information about elected officials, public figures or celebrities. Nor does it govern disclosures by individuals, companies or anyone else not covered by HIPAA.
"Generally if you are a famous person or not a famous person, you have a right to keep your medical information private from the media and the general public," says Jamie Court, president of Consumer Watchdog. "The doctors and hospitals have a duty to make sure they keep it private. But if you disclose it to anyone else in society, they have no duty to keep their mouth shut."
Under HIPAA's medical privacy rule, if an individual or member of the media asks about a patient by name, a hospital may release only the patient's location in the hospital and a general description of his or her condition – such as stable or critical – without the patient's permission. Hospitals are supposed to give
patients a chance to opt out of this disclosure if possible.
Hospitals or doctors can give additional information about a patient's condition or treatment to a person who is responsible for the person's care, as long as the patient does not object.
But if the hospital wants to disclose any additional information to the public, it must get the consent of the patient or – if the patient cannot provide it – whoever has authority under state law to act as the patient's representative, says Robert Gellman, a privacy consultant in Washington.
Jo Marie Gellerman, a spokeswoman for the University of Arizona Department of Surgery, says Giffords' husband, Mark Kelly, gave the university hospital permission to disclose certain information.
"We run the updates by him. The doctors talk to him ahead of time" about what they are going to say, she says. "There is a lot of information we are not disclosing."
In Monday's press briefing, doctors refused to answer a question about whether Giffords could move both sides of her body, saying the family did not want to go into that detail.
Patients have no right to sue a health care provider that violates HIPAA. They can file an administrative complaint and if authorities find any wrongdoing, they can impose fines and in extreme cases jail.
Some states have laws that go further than HIPAA. California's medical privacy law covers some health care providers not covered by HIPAA and gives individuals the right to sue under state law, says Tena Friery, research director with the Privacy Rights Clearinghouse.
Last week, the university medical center said that three employees and a contracted nurse were fired for improperly accessing medical records of victims in the shooting rampage that killed six and injured more than a dozen including Giffords. The hospital said they violated an internal policy and it was not aware of any confidential patient information being released publicly.
Although there is no indication that the university's disclosures violated ,HIPAA, some privacy experts were surprised at how far they went. "I understand it's medical science; there's a lot of exciting news. But it was a little over the top," says Pam Dixon, executive director of the World Privacy Forum, a public interest research group. "I just don't know if she would want all of this out in the public eye forever."
At the other extreme is Jobs. His six-sentence letter to Apple employees gave no reason for his leave and asked them to respect his privacy.
Although Jobs has no obligation to disclose his medical condition, if he discussed it with Apple's board, the board could have an obligation to disclose it to shareholders. HIPAA would not prohibit this disclosure and some argue that securities law might even require it.
The Securities and Exchange Commission requires public companies to quickly disclose material events, but has never defined material.
"The courts have defined material as something a reasonable investor would want to know before making a decision to buy, sell or hold a security," says SEC spokesman John Nester.
The SEC has not issued guidance on whether boards should disclose health issues for officers or directors. Alexa Perryman, an assistant professor of management at Texas Christian University, says it should.
For example, the SEC could require disclosure if the CEO has an illness that is immediately life threatening, requires a leave of more than three months or affects the CEO's ability to do his or her job reliably.
Perryman says the SEC needs to balance a CEO's right to privacy with shareholders' right to know things that could impact their investment. "We are trying to make the case that CEOs are not your average employee. Therefore the average law should not apply to them."
Court says boards are in a tough situation. If they fail to disclose an illness that could affect a company's stock, they are criticized. But if they disclose an illness that causes the stock to drop and the diagnosis turns out to be wrong, they could also be in trouble.
Net Worth runs Tuesdays, Thursdays and Sundays. E-mail Kathleen Pender at [email protected].