FRIDAY, October 17, 2003
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
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
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.)