FRIDAY, October 17, 2003

Public Comment

MR. SPERLING:  I apologize.  I've got some notes I made last night, but before - good morning, members of the Council and Dr. Kass.  Thank you for allowing me the opportunity to speak.

My name is Andrew Sperling.  I'm the Director of Federal Legislative Advocacy for NAMI, the National Alliance for the Mentally Ill.  NAMI is a national organization representing 210,000 members, 1,200 affiliates.  We are the largest national organization representing people with severe mental illnesses and their families, including illnesses such as schizophrenia, bipolar disorder, manic depression, severe anxiety disorders.

At the outset, NAMI wants to recognize and respect the spirit in which "Beyond Therapy" has been brought forward and approved by this Council.  We think it's an enormously important work that was certain to provoke a great deal of debate across our country.  We believe it's important to foster public attention and debate on these profound issues related to the ethical implications of biotechnology and its advance in society.

We respect that this is not a policy document.  It is not about legislative or policy recommendations.  And its intent is to provoke a national debate about some very profound and very difficult and complex issues.

We also recognize, NAMI recognizes, that this report has made important distinctions between appropriate use of medical technology for medical treatment on the one hand and employment of the same technology for personal improvement and enhanced performance on the other.  It's an important distinction, and we want to recognize that the Commission - the Council made that distinction in its report.

More importantly, NAMI recognizes that the ethical and long-term societal implications of this distinction are worthy of a serious, sober examination and informed debate - a debate that can and should be furthered by this report.  NAMI in no way questions the high motives behind this report and the serious intent under which the Council has undertaken this responsibility.

In short, NAMI recognizes that what - this report is long overdue in provoking an important debate about the long-term implications of biotechnology.  And we do not in any way question the motives of why this report has been brought forward.

At yesterday's meeting Dr. McHugh laid out for you an historical legacy of the stigma and discrimination associated with mental illness - a stigma and discrimination that still exists to this day.  Despite the enormous progress that we have made in advancing research and treatment on mental illness, that there still exists unfortunately a prevailing view in society that these illnesses may not be real, may be illusory, and that if people could just pull themselves up by their bootstraps, they could overcome mental illness.  And this is a view that Dr. McHugh really rebutted very effectively at your meeting yesterday.

We want to recognize that there is, you know - many of the dangerous forms of this stigma are still put forward by well-organized and well-funded interests in America today, and they do it under a cloak of human rights.  Okay?  They are both - in some cases ex-patient - what they call survivor organizations, people who have received treatment from the system.  They believe they never had a mental illness and believe that the treatment really - treatment is a form of oppression or a violation of their human rights.

And we also have groups such as the Church of Scientology that publicly call into question whether mental illness even exists. 

And the concern that NAMI has with the report is not the content - we want to be clear.  The concern is that the unintended uses that - there are interests out there that don't have the same motivation, essentially laudable motivation that this Council had in bringing this forward.  And the concern that NAMI has is that this report might be used by those interests to further what NAMI views as a very dangerous agenda to calling into the question the existence of mental illness.

This continues to this day.  Just this past year, the House Governmental Affairs Committee actually convened a hearing where there were witnesses representing the Church of Scientology that called into question the existence of all psychiatric illnesses, but in particular ADHD.

And we - NAMI is concerned that this report might be essentially misused, rather than what its intent is, which is to provoke debate across society - would actually be used to further what NAMI believes is, in some sense, an illegitimate debate and that we believe that medical science has proven beyond a doubt that severe mental illnesses are real, that the treatments are effective, and that there's no justification for enactment of policies that would even call that into question.

So I appreciate the opportunity to offer this public comment.  I want to thank you for your hard work on this.  And NAMI wants to work with the Council to make sure that the findings in this report, the important debate that needs to be provoked, is not - that this report isn't used under the guise of a council that was appointed by the President of the United States to further an agenda which NAMI believes is potentially destructive to people living with these illnesses and their families.

Thank you very much.

CHAIRMAN KASS:  Mr. Sperling, thank you very much.  It's not my custom to respond to public comment, but let put on the record that not just Dr. McHugh, but every member of this Council, agrees with the comments made by Dr. McHugh. 

And let the record show that we have not only no intention of giving aid and comfort to those forces, but we stand ready to join with you in opposition to them.

MR. SPERLING:  Thank you very much, Dr. Kass.

CHAIRMAN KASS:  Thank you.

This question about the November meeting, and what will be done at that meeting, and whether it will be held, we simply have to sit down in the office on Monday and sort out where we are.  Lots has gone on at this meeting.  It's been a terrific meeting, if I may say so.  There were lots of difficult things here, but I think we made very, very good progress on all of our projects. 

I thank you for your very careful and spirited - careful thoughts and spirited conversation.  Have a safe trip home, and we'll be in touch very shortly about the future.

Thank you.  The meeting is adjourned.

      (Whereupon, at 11:38 a.m., the proceedings in the foregoing matter were adjourned.)