Activist Update

By Edward Sodaro, M.D. and Jennifer Ball, C.S.W.

Many health insurance companies and government regulatory agencies no longer honor this ancient oath of confidentiality. As a healthcare provider, I am now forced to answer intimate, personal questions by third parties, which seems to work against your privilege to confidentiality. This information appears to make its way into private national data repositories. Your personal medical and/or psychiatric history is accessible by insurers, governmental agencies, and apparently even the general public now and forever in the future. In a front-page main report of The New York Times, 9/15/97, investigators find that personal privacy is for sale on-line over the Internet. A fee of $400 is charged by agencies for any individual’s complete medical history for the past ten years.

For this reason, if you are using your insurance to get medical treatment, I as your provider must obtain your informed consent, not only for the treatment you will receive, but also for the release of your records to your insurer. It is important that you understand the power your "permission" places in the hands of a third party. I must now give detailed private information to your managed care company or receive no reimbursement.

The situation is going to soon get worse, a lot worse. A little known amendment to the 1996 Health Reform Act (also called the Kasselbaum-Kennedy Act) requires by law a far greater violation of the privacy of your medical records. The deceitfully labeled "Administrative Simplification Amendment" to the 1996 Health Reform Act assigns each citizen of the United States a "unique health identifier" (probably our Social Security Number). This will allow release of our medical records without our consent or knowledge.

The Kasselbaum-Kennedy Act also mandated a universal federal database of all medical records held by insurers. By law all medical encounters where health insurance is used generates records to be stored in all details in the United States Government’s "Administrative Simplification Amendment" computer. This involves a unique use of the word "simplification." This potentially gives corporate America and every federal agency an on-line library of your most confidential records. Fortunately this universal database is not set up and running yet. But it will be soon.

The Clinton Administration has also recently proposed broad police access to medical records. Under the proposal your records could be used permanently for discovery in all future legal activity you might find yourself in. Federal and state prosecutors could freely access the national database set up by the Kasselbaum-Kennedy Act. Your medical records have fewer legal protections than your video rental history, e-mail, cable television history, or bank records. No court review or patient consent would be required.

Sensitive information that could be easily abused includes genetic, psychiatric, sexual and in fact almost any medical data. No requirement is needed for any court order or notification of you, a citizen of a country that supposedly possesses a nominal Bill of Rights! And the Administration claims it really does not need to have Congress pass any law anyway. It is claimed that law enforcement officials already have these rights under existing laws! Attorney Diedre Mulligan of the Center for Democracy and Technology unfortunately agrees with this claim: "(Currently) there’s no procedural requirement to inform patients that law-enforcement agents are getting access to their records."

Is there anyway to protect your right to privacy? Yes, there is a time honored privacy strategy that you can use. This is through self-payment for the services rendered, with no insurance claim form to be sent. There are definite advantages to paying out of pocket. This is the only guaranteed way to assure complete confidentiality now and for the future. It is the only way that your treatment history will stay off the Internet. You should be aware that the information I must send to your insurance company is entered into their information processing storage. The insurance companies have agreements to share information. Your data is then easily transferred, shared, and sold, at least according to the front-page investigative report in The New York Times.

There are obvious dangers to you in all of this that you must be made aware of. The potential for discrimination increases significantly by employers, health and life insurance companies, credit agencies and the legal system. It is possible that you will be denied insurance coverage in the future for any problems discovered today. By paying for your care privately, you are have better control of your treatment and better assurance of your privacy.

For further information visit the American Civil Liberty Union's "Take Back Your Data Campaign" in the "In Congress" section of the ACLU web site at http://www.aclu.org. You can also write, fax, or call the ACLU Field Office, 122 Maryland Avenue NE, Washington, D.C. 20002, Send it to "Attention: Take Back Your Data Campaign." Fax: 202-546-1440; Tel: 202-675-2307. You can also call the National Coalition for Patient Rights (888-44-PRIVACY) to register and volunteer for pro-privacy efforts to increase patient confidentiality protections.

For further information visit the American Civil Liberty Union's "Take Back Your Data Campaign" in the "In Congress" section of the ACLU web site at http://www.aclu.org. You can also write, fax, or call the ACLU Field Office, 122 Maryland Avenue NE, Washington, D.C. 20002, Send it to "Attention: Take Back Your Data Campaign." Fax: 202-546-1440; Tel: 202-675-2307. You can also call the National Coalition for Patient Rights (888-44-PRIVACY) to register and volunteer for pro-privacy efforts to increase patient confidentiality protections.

For further privacy updates click on the Managed Care Report at www.NoHMO.com

For submissions, for volunteering to report and work with the newsletter editors, and for letters to the editor, please contact:

Editor, The Coalition Report
William A. MacGillivray, Ph.D.
newsletter@TheNationalCoalition.org

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