Carol Jean Reynolds on ECT
Carol Jean Reynolds presented to the U.S. Food and Drug Administration Neurological Devices Panel examining the reclassification of electroconvulsive therapy (ECT) devices on January 27, 2011. These are her remarks as published in the public record of the meeting.
Thank you for permitting me as well as other members of the public to provide comments at this important meeting. I would first like to applaud this Panel for coming together on a matter of critical importance to people with disabilities. I’m here in my capacity as a board member of the National Council on Disability, an independent federal agency which advises the President and Congress on all issues affecting people with disabilities.
I also want to let you know that I’m a psychiatric survivor myself and therefore can speak as a person with a disability who has been impacted in a profound way by the subject at hand. I have been in recovery from my bipolar disorder, alcoholism, substance abuse for 25 years. I’ve had the privilege of having had excellent medical care when I was sick, something that many of my brothers and sisters have not had access to. At the same time, I would like to thank the FDA for approving medications Lamictal and Seroquel. These medications have helped me.
Medical devices have profound impact on the lives of people with disabilities. While many devices hold great promise for increased participation of persons with disabilities in the community, their safety and effectiveness needs to be carefully studied to ensure the potential negative impacts are eliminated or mitigated.
The NCD wishes to specifically highlight its views regarding ECT and the classification of devices for ECT. I’ve drawn heavily from our groundbreaking report, “From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves,” in preparing commentary. As noted in this NCD report, ECT is of great concern to the disability community. The advisory committee considers the FDA’s role in regulating the device used to conduct ECT. NCD wants to help inform the committee about the role these particular devices have on lives of people who often don’t have a voice. People with psychiatric disabilities are routinely deprived of their rights in a way no other disability group has been.
While I know this committee is focusing on how to classify ECT, NCD believes that ECT devices are inherently inhumane, unsafe, and ineffective and should not be classified as a therapeutic device. Public policy needs to move in the direction of a totally voluntary community-based mental health system that safeguards human dignity and respects individual autonomy. People labeled with psychiatric disabilities should have a major role in the direction and control of programs and services designed for their benefit, and most importantly, germane to this committee meeting, public policy should move towards the elimination of ECT and psychosurgery as unproven and inherently inhumane procedures.
Effective humane alternatives to these techniques exist now and should be promoted. I’ve concluded from my own personal experience and from NCD’s policy development research that one of the reasons public policy concerning psychiatric disability is so different from that concerning other disabilities is the systematic exclusion of people with psychiatric disabilities from policy making. It is rare that people with psychiatric disabilities are heard in public policy forums, and thus I want to take full advantage as a member of the psychiatric disability community as a presidentially appointed member of the Council to urge you to carefully consider classifying ECT devices as any type of therapeutic device.
Again, I thank you for allowing me to comment.