Remarks at the Medical Privacy Summit

February 5, 2001

These days, we have a lot of new things in Washington: a new President and Administration; a new Congress; and, a new year. But I am so pleased to be here with you, longtime friends and allies in the fight to protect some of our most personal information, our medical records. I want to thank the Health Privacy Project for organizing today’s summit, and of course the project’s director, the ubiquitous Janlori Goldman. Look up the word dynamo in the dictionary and you will see Janlori’s picture there.

I also want to thank the other cosponsors of today’s summit -- prominent health and disability rights organizations -- for offering their support of this important gathering to promote understanding of the meaning of the final health privacy regulations.

More than a dozen years ago, when Alan Simpson and I passed the bill that we wrote to protect video rental records, I doubt that it occurred to either of us that one day soon everyone’ s video rental records would enjoy more protection than their medical records.

It is time for Congress to stand up to special interests and do the same for our medical records. It is wrong that people can give the most intimate details of their, and their families’, lives to medical practitioners -- and then to see those records distributed for commercial or other gains.

Fortunately, this is about to change. When these landmark rules go into effect later this month, Americans will -- for the first time ever -- enjoy federal protections of their personal health information.

While some, including myself, have concerns about sections of the final rule, I want to repeat what I just said. These benchmarks -- for the first time -- will extend to each and every American federal protection of their medical records.

There are three things I want to touch on briefly today. First, these are good and balanced regulations. President Clinton and his administration did what Congress was unable to do: establish comprehensive medical privacy protections. I think each of us in this room would agree that in a perfect world these final rules would look a bit differently than they do. But having only a few areas of concern about a more than 300 page regulation does not, in any way, overshadow the remarkable accomplishment of having these new protections in place.

Second, while these new rules are good, they are not perfect, and there is room for improvement. Some provisions within the final regulation need to be closely examined and there may need to be some changes.

One area of concern to me is the explicit allowance of the use of personal medical information for marketing purposes. While some have described this section as necessary to allow patients to receive information about their condition and available treatments as a positive step, I am not convinced. Rather than allowing a patient the right to opt-out of receiving unsolicited advertisements from each and every marketer who sends them information as the final rule does, shouldn’t a patient instead have the right to opt-in and choose to receive information related to their condition? This is one example of an area where these good rules have room to become even better.

Finally, there are important areas that the Administration was unable to address in this rule because they were hampered by federal statute. Since the Administration had to do Congress’ s job to get these regulations finalized, I hope members of the House and Senate are ready to roll up their shirt sleeves and get down to work to put the finishing touches on establishing privacy rights for Americans.

What’s left to do? Congress must take additional steps to create a private right of action so patients can hold health care providers and health insurance companies accountable for violating these regulations. These privacy protections must be extended to cover entities that often come into contact with medical information such as life insurance companies and worker’s compensation programs. Congress should also begin looking into protecting the re-use of medical information.

Technology marches on, and our privacy rights erode each day that standards are not in effect. That suits many of the special interests just fine. We see just today in the Wall Street Journal that several special interest groups, calling themselves the "Confidentiality Coalition," already are mobilizing to pressure HHS Secretary Tommy Thompson to delay implementation of the new privacy rule.

I work hard in the Senate to champion new technology. And technology can be a powerful ally in protecting privacy. Encryption is a good example. But to me, technology must always be our servant. The longer we fail to draw the line to defend our privacy rights, the more technology becomes our master.

Any number of polls continue to show that privacy is one of the top issues that concern the public. Yet year after year, nothing happens in Congress. Capitol Hill has talked the talk for too long about privacy. Now Congress needs to begin walking the walk.

A Senate Committee later this week convenes an oversight hearing on the new medical privacy rule. The special interests will make sure they have a seat at the table when privacy is debated this year in Congress or within the Administration. It is up to you and me and others to make sure that the public’s interest is represented there, too.

I look forward to working with others in the House and Senate and with you toward the goal of further strengthening our medical privacy laws in the coming session of Congress. I believe we need to develop and introduce legislation to fill in these gaps and to strengthen the rule. I count on each of you to keep this issue in the forefront of the public’s attention and to keep the pressure on Congress to finish this job that has now been started.