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Does Government Need to Know if Grandpa Curses?
Heritage and ACLU Say NO!

July 1, 1999

Under new rules proposed recently by a federal health-care agency, information on millions of homebound patients would be compiled and disseminated without their consent. The proposal brought immediate rebuke from the Heritage Foundation and the American Civil Liberties Union (ACLU).

Heritage Foundation Responds

"Americans are accustomed to thinking the health information they share with their doctors remains confidential," noted Robert Moffit of the Heritage Foundation. "But under a new rule proposed by the Health Care Financing Administration (HCFA), the powerful bureaucracy that runs Medicare, such information would also be shared with the federal government-without patient knowledge."

Moffit went on to explain the new rules: "Under the pretext of regulating prices and assuring `quality' service, HCFA would force 9,000 home health care agencies to collect and report sensitive personal information about millions of [mostly elderly] homebound patients. The information, which would be transmitted to a federal database, would include a patient's medical history and personal characteristics, such as race, ethnicity, living arrangements, as well as financial, behavioral, and psychological profiles."

Personal Data Collected

"The detailed record would note whether the patient has expressed `depressive feelings,' a `sense of failure,' `thoughts of suicide,' or had used `excessive profanity' or made `sexual references," stressed Moffit. He explains that this personal information eventually would also be made available to state governments.

ACLU Remarks

Government officials contend that data collection is necessary to crack down on Medicare fraud and to assess the quality of care. But the ACLU points out that the database will be used to do "outcomes" research on home-care patients. "HCFA has yet to explain how any of these [data collection] objectives can justify overriding the Fourth Amendment of the U.S. Constitution, the requirements of medical ethics, and the federal regulations on research involving human subjects. Research that uses fully identified information requires fully informed consent," warns the ACLU in a recent press release.

The ACLU also points out that "Because HCFA is unwilling that anyone be able to opt out of this date collection scheme, it has no plans to get true consent. The patient or client must `consent' as a condition of receiving care." That's the care they prepaid for with their Medicare payroll taxes during their working years.

Solution for Privacy?

Moffit correctly argues that Congress could stop this potential abuse of seniors' right to privacy by reforming Medicare. He suggests the best model for reform would be the Federal Employee Health Benefits Program (FEHBP), "a patient-driven system of competing private health insurance plans enjoyed by members of Congress and their staffs, federal workers and federal retirees."

IHF's Solution

The Medicare/FEHBP proposal could be used to help secure patients' privacy if-and only if-it allows seniors to pay privately for their health care. Nothing prohibits members of Congress and federal workers from going outside their health plans to pay privately for care. Seniors deserve the same freedom.

Allowing seniors to choose their own health plans and contract privately is the best way to prevent Uncle Sam from collecting information on the homebound elderly.

This article was originally published in the May/June issue of Health Freedom Watch.