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'
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
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
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."
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