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What's New in Policy?
Excerpts From Hotline Memos of January 2000
from the Information Department of Project Inform

February, 2000

Opportunity for Public Comment on Medical Record Confidentiality Legislation

In 1996, the Health Insurance Portability and Accountability Act (HIPAA) was signed into law. This bill contained a provision requiring Congress to pass comprehensive heath privacy legislation by August 21, 1999. There is currently no comprehensive federal law that protects the confidentiality of medical records. Without such safeguards, personal medical information could be vulnerable to unauthorized use and exposure. Therefore, some individuals may choose not to access healthcare out of fear that their medical information could result in loss of insurance, employment, housing, or other forms of discrimination.

Congress missed its deadline to pass privacy legislation, so according to HIPAA, the Secretary of Health and Human Services (Donna Shalala), must draft federal regulations protecting the confidentiality of medical records. The Secretary has issued a draft of the proposed regulations. There is an opportunity for the public to comment on the draft until February 17, 2000.

While these regulations are an important step forward, advocates working on this issue have identified some concerns. Most notably, the regulations only protect electronic records, while most healthcare records are still in written form. In addition, the Administration's regulations only apply to health plans and certain providers, not to other entities that may collect health information, such as life insurance companies or researchers. However, under HIPAA, the Secretary is given only limited authority, so only Congress can address many of these concerns.

The Consumer Coalition for Health Privacy, a coalition of health care and disability groups, has convened to monitor and respond to health privacy legislation and regulations. Its website,, contains background information on the issue, as well as the draft regulations from the Secretary. In addition, the coalition has issued its own comments on the regulations, which you can review and sign on to.

The website also explains how you can issue your own comments to the Department of Health and Human Services about its regulations. Individual letters will be more effective than sign-on letters. However, responding to federal regulations is not an easy process, and given the deadline, it will likely require access to the Internet.

It's important to note that Congress can pass legislation at any time to override the Secretary's regulations. Even when the regulations are finalized, they are really only an interim solution until a law is passed and signed by the president. It is just as important to communicate with your U.S. representatives and U.S. senators about this issue and let them know that privacy of medical records is critical and urge them to support the strongest protections possible.

For help in communicating with your elected officials on this issue, contact Ryan Clary at 415-558-8669 ext. 224 or

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