Juli Lawrence testimony to Missouri Senate

Honorable members of the Committee on Children, Families and Health:

It is with regret that I am unable to testify in person today due to a family emergency, but I do appreciate the opportunity to submit this statement concerning HB 134.

My name is Juli Lawrence and I live in Belleville, Illinois, a suburb of St. Louis. I am an ECT survivor, a researcher, and member of the National Advisory Committee for the Center for Mental Health Services/Substance Abuse and Mental Health Services Administration. I am currently working on three ECT studies, which will be published later this year. Two of these studies address the very issue of ECT reporting.

Today the state of Missouri has the unique opportunity to become a leader in our United States, and to distinguish itself as a state that not only cares about its citizens, but cares about the collection and dissemination of ECT data in an effort for continual improvement in health care.

Currently, only a few states require data collection regarding the use of ECT. This reporting bill is needed, not only for researchers, but for patients who are considering ECT as a treatment option. This data will be used to improve health treatments for patients as well as highlighting trends, good or bad. We need these statistics on the use and results of ECT. The National Mental Health Association now includes the need for ECT data collection as part of its official policy position on ECT.

How can doctors make informed decisions concerning the value of ECT if they don’t have access to real data regarding success rates, side effects and the long-term outcomes of ECT? They need this bill.

Texas is among those few progressive states that has a reporting law and Texas stands out as a leader in the nation. Texas has required data collection for nearly a decade, and the statistics gathered have become invaluable to researchers, doctors and patients.

How is it that in a nation as advanced as the United States is unable to accurately determine precise numbers of patients undergoing ECT? No one can say with certainty how many persons in the United States undergo ECT each year. Researchers like myself have to rely on guesses when discussing statistics.

Guesses are simply not good enough, and it’s time we have absolute figures upon which to rely.

Media and the public are always stunned to learn that data is not collected.

The American public wrongly assumes that when it comes to knowing how many patients are being treated with this controversial treatment, the government is keeping track. The government is not keeping track and according to an ongoing poll on my website, the majority think it should.

How can patients make truly informed decisions about treatment options if they don’t have access to this data? Patients need to be able to access these statistics and make their own judgments before making a decision as important as “Should I have ECT or not?” Patients need this bill.

Missouri has the chance to lead the way among states and to say that patients being treated with ECT are deserving of a bill that will track the statistics. By passing HB 134, Missouri legislators will send a message to its citizens that says “We care about your health. We care enough to maintain statistics and to require hospitals to show accountability. We want to maintain records so that improvements can be made.”

I have been studying the Texas data over the last months for a research project and have found that several hospitals are still using a device model that has been recalled by the manufacturer. Since there has been no official governmental recall, many hospitals and doctors have not been informed that the manufacturer is willing to replace the machine with a different model. Without the Texas reporting law, who would have known that some hospitals are still using this dangerous ECT device model?

How many hospitals in Missouri are using this particular machine? We won’t know until this bill is passed and hospitals are required to submit reports. Maybe in a year or two, a researcher will take note of the hospitals that continue to use a dangerous machine and can inform them before a tragedy occurs.

Advances in medicine can only occur when there is accountability and when people know who is being treated and what the results may be. Without this knowledge, the status quo remains and progress does not occur.

I respectfully urge that the members of this committee take the lead. Show the rest of the nation that Missouri is a state that cares about the health of its citizens enough to require ECT reporting. The people deserve to know.

Thank you.

Comments (1)

wayne shawMarch 3rd, 2007 at 1:53 pm

Hi,
I am currently doing an asignment on ect. i understand you are doing more research on ect. Have you completed these papers? and could i be privaliged to see what discussion has been produced to include within my assignmen.

Hope to hear from you soon

Wayne

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