Copyright 1999 Federal Document Clearing House, Inc.
Federal Document Clearing House Congressional Testimony
July 20, 1999
SECTION: CAPITOL HILL HEARING TESTIMONY
LENGTH: 540 words
HEADLINE:
TESTIMONY July 20, 1999 PETE STARK HOUSE WAYS AND MEANS HEALTH
PATIENT CONFIDENTIALITY
BODY:
July 19, 1999 The
Honorable Pate Stark Ranking Member, Ways and Means Subcommittee United States
House of Representatives 239 Cannon House Office Bldg. Washington, DC 20515 Dear
Representative Stark: The National Organization for Rare Disorders (NORD) is
very concerned that federal medical privacy legislation should guarantee every
American the security of knowing that anything they tell to their doctor will
riot be released to others. Without this confidentiality guarantee, people will
not feel sufficiently secure to be honest and forthright with their physician.
Patients are keenly aware that a note in one's medical records may carry a risk
of escalating their insurance premiums or making them uninsurable for the rest
of their lives. Therefore, they will avoid telling their doctor important
medical facts unless they are assured that such information will be kept
absolutely confidential. We are particularly concerned about the House
Representatives passage of H R1 0, the Ganske amendment to the barking bill. If
enacted into law, the Ganske amendment will allow health insurance companies to
share our private medical information with other insurance companies, banks, and
lenders. Thus when a examine the medical records of borrowers. This is an
outrageous violation of American's civil rights, not to mention the moral and
ethical standards of all western civilizations. Congress should ensure that
strong state privacy laws are not pre- empted by any federal privacy law that
Congress might enact not should federal law prohibit a private right of action.
Carefully crafted state privacy laws should not be put at risk if they are
stronger than congressionally passed legislation. There must also be a statutory
penalty against those who violate a federal privacy law.
Sharing information about personal medical
information without a person s explicit consent must be punishable in order to
be effective. Unfortunately, in today's medical marketplace, the only parties
that have problems accessing medical records are the patents themselves. When
people want Copies of their own medical records, they have to sign legal
releases, pay for every page, and sometimes wait weeks to obtain information
that is actually their own. Yet pharmaceutical companies can buy our
prescription records from local pharmacies, and health insurers can sell or
trade our most private medical secrets to other insurance companies, all without
any written permission from any of us. Privacy guarantees under current federal
rules are a sham. We feel very strongly that federal legislation must create
absolute minimum standards of privacy that must be observed in all fifty states.
However, if states chose to enact more strlngent privacy standards, they should
be allowed and encouraged to do so because states are necessarily more
-sensitive to moral and ethical concerns of local citizens. We trust that
Congress will do its utmost to ensure that Americans will have a federal right
to medical privacy so that none of us will be at risk of unwanted invasions
into, our most sensitive health information. We hope Congress will act quickly
and in the best interests of consumers. Very truly yours. Abbey S. Meyers
President
LOAD-DATE: July 22, 1999
