[Congressional Record Volume 148, Number 137 (Thursday, October 17, 2002)]
[Extensions of Remarks]
[Page E1927]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




  REGARDING H.R. 5646, THE STOP TAKING OUR HEALTH PRIVACY ACT OF 2002

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                          HON. HENRY A. WAXMAN

                             of california

                    in the house of representatives

                      Wednesday, October 16, 2002

  Mr. WAXMAN. Mr. Speaker, Americans are deeply concerned with ensuring 
the privacy of their health information. Every day, in fact, the need 
for medical privacy protections grows more urgent. Advances in 
information systems are increasing the possibilities for accessing 
health information, and genetic developments are increasing 
capabilities to screen for sensitive information regarding an 
individual's susceptibility to certain conditions or diseases.
  Unfortunately, the Bush Administration recently took a major step 
backward in providing medical privacy protections to American 
consumers. In August 2002, the Administration opened up large loopholes 
in medical privacy protection with changes to the Federal medical 
privacy rule that had been finalized in December 2000 by the Clinton 
Administration.
  The medical privacy rule was the culmination of many years of 
hearings, study, and analysis in which the Administration, members of 
Congress, and a multitude of interested parties participated. The rule 
established a sound foundation for addressing the complex issues 
relating to medical records privacy.
  But the Bush Administration's August 2002 changes undermined the 
privacy protection provided by the rule. The changes eliminated the 
rule's requirement that individuals must give consent before their 
personal health information can be used for treatment, payment, and a 
broad category of activities called ``health care operations.''
  The Bush Administration also decreased privacy protections relating 
to marketing activities by removing privacy protections for activities 
that most consumers consider to be marketing.
  Further, in a so-called ``public health'' provision, the Bush 
Administration created a broad exemption that allows disclosures of 
health information without patient consent to drug companies and other 
entities regulated by the FDA for a wide range of purposes. The 
December 2000 rule, in contrast, allowed such disclosures only for a 
narrowly defined list of health-related activities such as reporting 
adverse events associated with drugs.
  Because of the damage the Bush Administration did to medical privacy 
in August 2002, I am joining Representative Ed Markey, Representative 
John Dingell, and others in introducing H.R. 5646, the Stop Taking Our 
Health Privacy Act of 2002. This bill would: (1) reinstate the December 
2000 rule's patient consent requirement for treatment, payment, and 
health care operations while ensuring that this requirement does not 
undermine essential health care activities such as filling 
prescriptions and making referrals; (2) strike the Bush 
Administration's definition of ``marketing,'' thereby ensuring that the 
rule's privacy protections apply to activities consumers consider 
marketing; and (3) eliminate the broad exemption the Bush 
Administration created that would have allowed disclosure without 
consent to drug companies, while ensuring that disclosures essential 
for public health purposes are allowed.
  This bill is necessary to restore Federal medical privacy protections 
that were taken away by the Bush Administration. At the least, Congress 
should ensure that Americans have at least the same medical privacy 
protections that were established in the December 2000 rule.
  Congress of course must go beyond remedying the damage done by the 
Bush Administration. In large part due to statutory restrictions on the 
authority of the Secretary of Health and Human Services, gaps in 
medical privacy protection remained after the December 2000 rule. We 
need to ensure that all entities that maintain an individual's health 
records take appropriate steps to protect the privacy of that 
information. We also need to provide protections against discrimination 
by employers and health insurers based on an individual's genetic 
information--protections that are increasingly important as we continue 
to gain understanding of the human genome.
  I will continue to work to enact comprehensive protections regarding 
the disclosure and use of individuals' personal health information.

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