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IHF Press Conference on Federal Medical Privacy Rule

June 8, 2002

Less than a week after the Bush administration announced that it was going to revise the federal medical privacy rule, the Institute for Health Freedom (IHF) analyzed the proposed modifications and sponsored a press conference to inform the media and public about how the changes would affect citizens' health privacy.

The April 2, 2002 press conference was held at the National Press Club in Washington, D.C. The event was well attended by journalists and Capitol Hill staffers, who asked meaningful questions and sought clarification about how the proposed changes (published in the Federal Register on March 27, 2002) would affect patients' control over their personal health information. Panelists included a representative of the Free Congress Foundation (speaking on behalf of Lisa Dean); Jim Pyles, an attorney representing the American Psychoanalytic Association; Tom Miller of the Cato Institute; and Kent Snyder of the Liberty Committee. IHF's Sue Blevins moderated the panel discussion.

Proposed Revisions Make Bad Rule Worse

[A spokesperson for the Free Congress Foundation (FCF)] noted that the administration's proposed changes would harm patient privacy by substituting notification for consent. Patients would no longer have to consent to the sharing of their personal health information; rather the rules would only require patients be notified that their information is being shared. "While this change is damaging to patient privacy there is a larger issue," [the FCF's spokesperson noted]. "This change is only one more small hole in an already sinking ship and that ship's cargo is our medical privacy." He went on to note, "The previous rule promulgated by the Clinton administration began with such egregious exceptions that these alterations make an already terrible rule...worse."

Government Granted "Regulatory Permission" to Decide for Patients Whether to Share Personal Health Information

Jim Pyles told the audience, "The latest proposed amendment [to the privacy rule] has the potential, I believe, for causing the greatest damage to the quality of health care in this country of any government action in my lifetime. It is truly breathtaking in its scope and what it tries to do." He stressed that the proposed changes "eliminate the right that all of you currently have to not have any of your information disclosed without your consent. It's a right you currently have under most state laws. It's a right that is reflected in the professional standards of most medical practices. It's a right at the very least which is contained in the current privacy rule." Pyles noted that patients' privacy is eliminated in the proposed changes by "having the federal government provide regulatory permission on your behalf for the use and disclosure of your health information."

"We also know that privacy is absolutely essential to quality health care," Pyles said. "And yet these regulations say the federal government is going to come in and provide regulatory permission for the access of any of your health information, even against your will. If you don't want it disclosed...too bad."

Market-Based Solutions

Tom Miller of the Cato Institute argued that "there's no magic bullet" or "simple solution" when it comes to medical privacy. But he offered a few suggestions: "We have to avoid the false choice of maximum privacy for everyone or no privacy for anyone," he said. He went on to note, "In the [free] market in terms of health insurance contracts...we would think about other options [such as] less comprehensive health insurance so that more of your health care is handled on a direct first-party basis where you know who you're dealing with. You may be paying out-of-pocket in cash and you're not worried about what's going downstream through multiple parties in a complex insurance transaction."

He also speculated that "You would seek out long-term contracts and voluntary pooling arrangements to deal with that worry lurking in people's mind that somewhere some health information about my health status is going to leak out and I won't be able to get health insurance in the future. Those are the market-based ways to deal with it."

Finally, Miller stressed that "We have to remember that you go to doctors to give them information in order to be treated. The information is necessary in order to be [treated for] what you're seeking out in that regard."

Is HHS Listening to Ordinary Citizens?

Kent Snyder of the Liberty Committee reported that during the first public comment period [that closed in February 2000], his organization submitted over 12,000 comments critical of the proposed privacy rule to then-HHS Secretary Donna Shalala. [She modified the rule somewhat in response to those comments.] But during the second public comment period that closed in April 2001, 13,534 individuals from across the country signed a petition to HHS Secretary Tommy Thompson objecting to the rule. However, "HHS decided to calculate 13,534 petition signatures as one [comment]," he said.

Snyder also pointed out that Congressman Ron Paul (R-Texas) has sponsored legislation to repeal the privacy regulations and has also succeeded during the past few years in placing a moratorium on funding for the "unique health identifier" for all citizens.

IHF's Sue Blevins noted that HHS, in ignoring the thousands of public comments, was clearly siding with medical industry special interest groups when it comes to medical privacy. That is why those who care greatly about medical and genetic privacy issues must continue to express their opinions to their elected officials.

This article was originally published in the March/April 2002 issue of Health Freedom Watch.