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AMA update on med. records privacy legislation (fwd)
http://www.ama-assn.org/sci-pubs/amnews/pick_99/gvta0913.htm
> [AMNews] [American Medical News]
> GOVERNMENT & MEDICINE
Work on privacy bill continues
Proponents of federal legislation to protect the privacy
of medical records still hold out hope for passage this
year, even though Congress' deadline passed.
> By Geri Aston, AMNews staff. Sept. 13, 1999.
> Washington -- Congress returned to town already behind on
> one assignment: passing a medical records confidentiality bill.
> Lawmakers had three years to adopt such legislation, required under
the Health Insurance Portability and Accountability
Act of 1996. But
Congress let the deadline slip by on Aug. 21.
That forces the Dept. of Health and Human Services
into
> high gear. The law requires the agency to issue
> regulations governing the confidentiality of
> electronically transferred medical information by Feb. 21
> if Congress fails to meet its deadline.
>
> But Congress isn't out of the picture yet.
>
> "It's important to look at the deadline as more of a
> trigger than a deadline," said Joe Karpinski, spokesman
> for Sen. Jim Jeffords (R, Vt.), one of the leaders in the
> drive to pass privacy legislation. Congress could adopt
> legislation before it adjourns at the end of October and
> still avoid letting the responsibility fall into HHS'
> hands, Karpinski said. Congress also could push back the
> date by which HHS must act, thus giving itself more time
> to pass a bill.
>
> Lawmakers in both the House and Senate are striving to
> adopt legislation before adjournment, but they still face
> many obstacles.
>
> In the Senate Health, Education, Labor and Pensions
> Committee, which Jeffords chairs, disputes over two
> provisions have for months stalled Jeffords' plans to
> bring his bill for a vote.
>
> One of the sticking points involves a provision giving
> people the right to sue as individuals when their privacy
> rights have been violated. Democrats are unhappy with
> liability limits the bill would impose, such as a $50,000
> cap on noneconomic damages.
>
> But some business and insurance groups oppose giving
> individuals any right to sue over privacy violations. The
> bill already includes civil and criminal penalties for
> entities that breach confidentiality rules, so an
> individual right to sue is unnecessary, said Alan Mertz,
> executive vice president of the Healthcare Leadership
> Council.
>
> Protecting the privacy of minors
>
> The other unresolved issue holding up committee action
> involves juveniles' right to control access to their
> medical records. Jeffords' bill would honor state laws
> regarding minors' medical record privacy rights and not
> impose new rules on states that have no laws, Karpinski
> said.
>
> Sen. Edward Kennedy (D, Mass.), however, would like the
> bill to include a provision that would give juveniles the
> right to control access to their records in states that
> allow them to receive certain types of treatment, such as
> abortions or mental health services, without parental
> consent, an aide said. Anti-abortion groups and some
> lawmakers oppose the addition of such language to the
> bill.
>
> Jeffords remains committed to hammering out these two
> contentious issues before a vote can be taken. He
> "doesn't want to bring a bill to the floor with a
> partisan stigma," Karpinski said.
>
> Despite the conflicts, the committee is "in as good of a
> position as you can be," Karpinski said. All sides agree
> on the need for legislation, just two issues are tying up
> the vote and lawmakers have avoided bitter partisan
> bickering, he explained.
>
> The delay in the Senate also has had the unexpected
> effect of spurring activity among House members, who
> previously appeared to be relying on the Senate to lead
> the way on privacy legislation. Several bills have been
> introduced, and committees began to hold hearings before
> recess.
>
> An effort to fashion a bipartisan confidentiality bill
> has been launched by Rep. William Thomas (R, Calif.),
> House Ways and Means health subcommittee chair, and Rep.
> Benjamin Cardin (D, Md.). Both are pushing for passage
> this year.
>
> But aides for both said no decisions had been made on
> some of the most controversial issues, such as whether a
> federal privacy law should preempt state rules and what
> type of rules should govern law enforcement officials'
> access to medical records.
>
> Those are hot-button issues for competing interest
> groups.
>
> For example, insurance and business groups have said they
> want the federal privacy legislation to preempt state
> laws, because the patchwork of state rules adds to their
> administrative costs and hinders efficiency.
>
> Meanwhile, physician groups such as the AMA and privacy
> advocacy groups have said that states should be able to
> pass stronger confidentiality laws. States must be able
> to develop privacy rules that meet their specific needs
> and deal with future confidentiality issues that federal
> legislation might not address.
>
> A "complicated, misunderstood" issue
>
> The difficulty in finding abalance between competing
> interest groups on preemption and other privacy issues is
> one of the reasons for the missed congressional deadline,
> health care officials said.
>
> "It's a hard issue because it's complicated and
> misunderstood and because there are dangers in going too
> far in either direction," said Susan Pisano, spokeswoman
> for the American Assn. of Health Plans.
>
> Insurers want to preserve their ability to conduct
> quality improvement and care management activities, she
> said. "There are real dangers in putting restrictions on
> how data can be used that would hamstring providers in
> terms of delivering good care to individuals and
> advancing research helpful to all patients."
>
> The other risk is jeopardizing patients' faith in the
> system by including too few restrictions on the
> disclosure of personal health information.
>
> "Everybody talks about wanting as much privacy as
> possible, but when interest groups see what it would mean
> to them they back off," said Peter Kane, executive
> director of the National Coalition for Patient Rights.
>
> Patients won't be willing to share important health
> information with their doctors if they fear it could be
> disclosed inappropriately, said AMA President Thomas R.
> Reardon, MD.
>
> "It's such a complex issue," he said. "All the interests
> need to be balanced with a minimum of government
> intrusion."
>
> Another factor in the slow pace of action is the lack of
> public pressure for federal privacy protections.
>
> "People have a false sense of security that their medical
> records are protected," Karpinski said. "It's a stealth
> issue," because a person could be discriminated against
> based on their medical information without ever knowing
> it.
>
> Consequently, the public is not pushing lawmakers to act.
>
> "It's not the kind of issue where members are getting
> thousands of letters from constituents," said Healthcare
> Leadership Council's Mertz.
>
> Back to top.
> ----------------------------------------------------------
>
> Confidentiality confounds Congress
>
> Key dates in the ongoing effort to enact federal medical
> records privacy legislation:
>
> Aug. 21, 1996: Congress passes the Health Insurance
> Portability and Accountability Act. Concern over the lack
> of federal medical records privacy standards spurs
> lawmakers to include a provision requiring that Congress
> create such confidentiality rules within three years.
>
> Sept. 11, 1997: As directed by the law, the Dept. of
> Health and Human Services unveils recommendations for
> standards governing the confidentiality of individually
> identifiable medical information.
>
> Aug. 21, 1999: Congress misses its self-imposed deadline
> for developing legislation on the privacy of medical
> information. Lawmakers vow to pass a bill by year's end.
>
> Oct. 29, 1999: Tentative congressional adjournment date.
>
> Feb. 21, 2000: If Congress has failed to enact
> legislation, HHS must, by law, promulgate final
> regulations regarding the confidentiality of
> electronically transferred medical information.