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Giraffe's medical records are confidential but yours will soon be up for grabs

"All medical records will be treated as if they are government property, not individual property."

Medical records of panda bears, pachyderms, and other popular animals at the National Zoo in Washington, D.C., are confidential but your medical records will soon be available to data-processing companies, researchers, pharmacists, and your insurance company — without your consent.

Sound crazy? Consider this: The National Zoo turned down a Washington Post reporter's request for the medical records of Ryma, a 17-year-old male giraffe who died in February 2002, citing the animal's right to privacy and saying that the release of his records violates the zookeeper-animal relationship.

Yet the United States Department of Health and Human Services (HHS) has eliminated the requirement to get your consent to release your medical records.

All medical records will be treated as if they are government property, not individual property," says Dr. Deborah Peel, past president of the National Coalition of Mental Health Professionals and Consumers. And the scariest part is that you'll never know who requested your records or why — and there will be little you or your doctor can do to stop it.

When did this happen?

Until now, no one could access your personal health information without your written consent. However, on Aug. 9, 2002, the Bush administration announced it has revised the medical privacy rule to the federal Health Insurance Portability and Accountability Act (HIPAA). According to HHS, effective April 2003, "key health care players" will now have the "regulatory permission" to use and disclose all your personal medical and mental health treatment information in order to "facilitate" your medical treatment.

Tipping the scales

In revising the medical privacy rule, regulators used variations of the word "balance" 17 times to describe why patient privacy did not take first place in their considerations. Among other factors, HHS says patient privacy interests were balanced against:

  • Public health and safety.
  • Researchers need to access data for studies.
  • "Legitimate needs" that health insurance plan sponsors have for medical information.
  • Administrative burdens.

You can learn more about the new privacy rule at the HHS Web site.

All health care entities affected by HIPAA must be in full compliance with established privacy guidelines no later than April 2003.

Source: Citizens' Council on Health Care

The American Association of Health Plans is lauding the final privacy rule, saying HHS has "adopted a balanced, workable approach that protects the privacy of patients without undermining their health care."

But patient advocates are outraged. "If Enron or WorldCom executives had distorted the truth the way HHS has about the federal medical privacy rule, they would probably be charged with false advertising," says Sue Blevins, president of the Institute for Health Freedom.

According to Blevins, public comments made by HHS about the medical privacy rule are misleading because HHS claims the new rule maintains privacy protections without mentioning that the new rule does not prevent government or the medical industry from compiling and sharing an individual's personal health information — including genetic information — without the individual's permission.

Blevins and other patient advocates are not exaggerating, according to James Pyles, a Washington, D.C., health care attorney who worked for six years in the Office of the General Counsel for the U.S. Department of Health, Education, and Welfare. "This is a serious blow," says Pyles. "Privacy will be meaningless. There is no accounting for [routine] disclosures in this rule, so there will be no paper or electronic trail to follow if your information gets into the wrong hands."

If this seems far-fetched, consider this: Select individual and small group health insurers already have access to medical information on more than 16 million people contained in files warehoused by the Medical Information Bureau (MIB). The MIB provides more than 600 insurers with medical information from databases that serve as a repository of information that insurers use to compare notes on applicants — and uncover those who've "lied" on their insurance applications — without having to contact one another directly.

Consent catch-22

Although HHS insists that your doctor will still have the "option" to allow you to give or withhold consent to release your medical records, the option will be at the discretion of your doctor, not you. And your doctor will be put in a very difficult position. Will it be in his or her best interest to serve you, the patient, or the insurance company that is cutting the checks?

"This is a serious blow. Privacy will be meaningless."

Let's say your doctor refuses a regulatory request from your insurer for your records. There is nothing stopping the insurer from claiming that it cannot properly conduct its health care operations without your records and dropping your doctor from its network of providers for failing to comply with federal regulations.

Because your doctor won't be able to protect you from disclosure against your will, patient advocates say you will have to start making terrible choices when you're ill. "Who will get genetic testing if the results are used to deny applications for life or health insurance policies?" Peel asks. "These scenarios sound impossible, but they aren't."

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